Can Endometriosis affect the Sciatic Region?

As we enter a turning point in healthcare, more physicians are finally beginning to recognize endometriosis for the significant, public health crisis it is. Better still, teens and individuals with the disease are advocating strongly for themselves – and each other. Armed with authoritative knowledge about endometriosis, they are rightfully acting as partners in their own healthcare and taking a role in their disease management.

Sadly, we still have a long way to go, however. There are many who continue to maintain that endometriosis “is cured by pregnancy/hysterectomy/drug therapy/menopause” and who believe the disease only occurs in and on reproductive organs, and even then only in older women.  Of course; we know none of these old wives’ tales are true.

Indeed, while endometriosis typically develops on the pelvic structures including rectovaginal septum, bladder, bowels, intestines, ovaries and fallopian tubes, it has also been found in uncommon/distant regions including nervous system, rectus abdominis muscle (“abs”), lungs (where it can induce Catamenial Pneumothorax), and even rarely, the brain.  Endometriosis has also been found in rare males (even absent of estrogen therapy) and at fetal autopsy. The female ovaries are among the most common of locations, with the gastrointestinal tract, urinary tract and soft tissues following1 - but even disease as far remote as the gastrocnemius has been documented in the literature.2
Image Linked from Wikipedia Commons

Symptoms of endometriosis, in general, do vary considerably, and may mimic those of other conditions like pelvic inflammatory disease or pelvic infection (but remember, endometriosis itself is NEVER an infection!), ovarian torsion, adenomyosis, fibroids or even ovarian cancer.  Classic signs include severe dysmenorrhea (painful periods are NOT the same as endometriosis!), deep dyspareunia (pain associated with sex), infertility/pregnancy loss, chronic pelvic pain, Middleschmertz (painful ovulation) and cyclical or perimenstrual symptoms, and the disease may present as bowel obstruction, melena (bloody stool), hematuria (bloody urine), dysuria (painful urination), dyspnea when the diaphragm or lungs are affected (shortness of breath), and swelling in soft tissues.  Degree of disease present (“stage” of endometriosis; 1-4 based on severity) has no correlation with severity of pain or symptomatic impairment. You can read more about endometriosis in general here. Consider joining others with endometriosis to share experiences and understanding on our social media network here.

Few laboratory tests are valuable in the diagnostic spectrum, as markers like CA-125 (cancer antigen), CCR1/mRNA and MCP1 (certain transcription factors modulated in endometriosis) all have very low specificity and sensitivity thus far.  Imaging tests (MRI, ultrasound, CT scan) may be more specific and helpful (particularly in the surgical planning stage), but it is very difficult if not impossible to confirm or exclude a diagnosis of endometriosis based on symptoms and tests alone. Certainly, though some prefer ‘medical diagnosis’ through use of hormonal treatments, this is far from accurate as well.  True confirmation can only be obtained through surgical biopsy.  Therefore, suspected extrapelvic disease should never be dismissed out of hand.

Extrapelvic endometriosis absolutely does exist, with just a few references to such noted above; indeed, these diagnoses are becoming even more prevalent.  This increased recognition may be in part due to the practitioner’s own improved understanding of the disease, and/or to the patient’s active role in their own care: speaking up and being heard about new or different symptoms they are experiencing and insisting on proper, authoritative treatment. To that end, one consideration for some patients who may present with specific symptoms is sciatic endometriosis.

ADAM has a rendering of sciatic pain in their graphic linked here:
Image Linked from ADAM

Sciatic endometriosis is not abundantly common – but it should always be included in the diagnostic approach to pain and symptoms affecting the sciatic nerve distribution.  The first case of biopsy-confirmed sciatic endometriosis was described by Denton & Sherill in 1955.3 Since then, many additional cases have appeared in the literature.  Symptoms that may lead to suspicion of sciatic disease may be predominantly left-sided, though infiltration of the pelvic wall and somatic nerves causing severe neuropathic symptoms due to endometriosis infiltrating the right sciatic nerve has also been well-documented.4

Pain may begin just before menstruation and last several days after end of flow and be accompanied by motor deficits, low back discomfort radiating to the leg, foot drop, gait disorder due to sciatic musculature weakness, cramping and/or numbness radiating down the leg, often when – but not limited to – walking, especially long distances, and tenderness of the sciatic notch. There may also be positive Lasègue’s Sign (an indication of lumbar root or sciatic nerve irritation in which “dorsiflexion of the ankle of an individual lying supine with the hip flexed causes pain or muscle spasm in the posterior thigh” [Kosteljanetz et al.]).  There is almost always a history of pelvic endometriosis.

Left untreated, sciatic endometriosis may presumably cause nerve damage through cyclical inflammation and advance “aggressively” to the epineurium and perineurium.5  Unchecked, symptoms will likely lose their cyclical nature with time, due to scarring, resulting in progressively shorter pain-free intervals until constant pain prevails.6

Physical examination may reveal various neurological deficits involving the sciatic nerve rootlets. There may be localized tenderness over the sciatic notch, but this is not a classical finding [Ellias et al.]. Pelvic examination may also even be normal.  The disease can be seen on imaging tests in some cases,7 though ultimately a visual (surgical) diagnosis is indicated.  Early diagnosis and treatment is indeed critical in order to minimize the damage caused by the recurrent cycles of bleeding and fibrosis, characteristics of endometriosis.8  While sacral radiculopathies (pudendal, gluteal pain), vascular entrapment or sciatic neuralgia may be at the root of symptoms for some individuals, in patients with sciatica of unknown genesis and/or suspicion of pathology such as endometriosis, laparoscopic exploration of the sacral plexus and/or sciatic nerve is advisable.9

Sciatic endometriosis is generally treated the same way as pelvic disease: preferably gold-standard surgical eradication (excision). When not possible, a course of medical therapy may suppress symptoms until such time as the patient can receive proper surgical intervention with a skilled, minimally invasive pelvic surgeon who has vast experience in highly complex cases of endometriosis. Physical therapy with a skilled PT specializing in endometriosis and CPP can also be very helpful.

It is very important to understand that not every patient with symptoms relating to the lumbosacral plexus or proximal sciatic nerve bundle will actually have sciatic endometriosis, as there can be several differential diagnoses. However – endometriosis can be a real (albeit less common) cause of nerve injury and symptomology.10  This extrapelvic manifestation of the disease must be considered in the differential diagnosis of those with symptomatic presentation, particularly if a history of endometriosis or chronic pelvic pain is present.

If you or someone you love suffers (or thinks they may be suffering) from endometriosis, we’d be honored to lend our expertise and free opinion. Please visit us here to learn more about the CEC’s services.

1. Woodward, Sohaey, Mezzetti.  Endometriosis: Radiologic-Pathologic Correlation. Continuing Medical Education. Radiographics. January 2001 21:1 193-216
2. Poli-Neto, Rosa-E-Silva, Barbosa, Candido-Dos-Reis, Nogueira. Endometriosis of the soleus and gastrocnemius muscles. Fertil Steril. 2009 Apr;91(4):1294.e13-5
3. Anaf, Simon, El Nakadi, Fayt, Buxant, Simonart et al. Relationship between endometriotic foci and nerves in rectovaginal endometriotic nodules. Hum. Reprod. 2000 15 (8): 1744-1750
4. Ceccaroni, Clarizia, Cosma, Pesci, Pontrelli, Minelli. Cyclic sciatica in a patient with deep monolateral endometriosis infiltrating the right sciatic nerve. J Spinal Disord Tech. 2011 Oct;24(7):474-8
5, 8. Teixeira, Martins, Avila et al. Endometriosis of the sciatic nerve. Arq. Neuro-Psiquiatr. 2011, vol.69, n.6, pp. 995-996].
6. Grand Rounds; “Endometriosis of the Sciatic Nerve.” Mazin Ellias, MD. Medical College of Wisconsin. April/June 1999
7. Wadhwa, Thakkar, Maragakis, Höke, Sumner, Lloyd et al. Sciatic nerve tumor and tumor-like lesions-uncommon pathologies. Skeletal Radiol. 2012 Jul;41(7):763-74
9. Possover, Schneider, Henle. Laparoscopic therapy for endometriosis and vascular entrapment of sacral plexus. Fertil Steril. 2011 Feb;95(2):756-8
10. Ghezzi, Arighi, Pietroboni, Jacini, Fumagalli, Esposito et al. Sciatic endometriosis presenting as periodic (Catamenial) sciatic Radiculopathy. J Neurol (2012) 259:1470–1471

Frequently Asked Questions

AAGL COEMIG Seal_Dark HiRes CMYK“…Can I send partial records without registering? How long is the wait for surgery? Do you accept insurance? How much will my surgery cost? Do you do pro bono cases?  Where can I learn more about your procedures? How long will I need to stay in Atlanta? What do I need to do to send records? What happens after I become established as a CEC patient?…” Questions? We’ve got answers!

We’ve compiled responses to our most frequently asked questions in order to get you started; however, as always, don’t hesitate to contact us anytime at Heather@CenterForEndo.com if you need further information or have any additional questions.  Please remember, the best place to get the most accurate and current details about our practice, policies and procedures is from our office. The Internet and social media can be helpful, but there is sometimes misinformation posted, and only we will have the most authoritative and specific answers relative to your own case – so please reach out to us anytime. We’d love to hear from you! We have lots of information on our websites (see also http://www.centerforendo.com) and are very happy to help with anything you can’t find. We appreciate your interest in our services and are delighted to serve the endometriosis community in any way we can. Read on!

ARE YOU ACCEPTING NEW PATIENTS? DOES THE CEC ACCEPT PATIENTS FROM OUTSIDE ATLANTA?

Yes, and yes!  Definitely. In fact, our near-5,000 patients have come to us from nearly 50 countries all over the world – all of North America, Asia, United Kingdom, United Arab Emirates, Brazil, Australia, Jamaica, Iceland, Egypt, Democratic Republic of the Congo, the Russian Federation, New Zealand and beyond.  If you are dealing with endometriosis – or think you might be – we would be honored to try and help you restore your quality of life through our compassionate, expert treatment. We consider it a privilege and blessing to work with all individuals in the pelvic pain community and would be very happy to lend our opinion to your case.

Our Founder, Dr. Albee, is not accepting new surgical cases; however, he is more than happy to see you in the office, review your case and offer you his expertise anytime.  Dr. Sinervo, our Medical Director, operates several days a week and will gladly review your case directly as well as work with you to schedule a surgery, if appropriate.  Our entire team is here to help – what can we do for you?

DO YOU OFFER PHONE CONSULTS & RECORDS REVIEW?

Yes, absolutely! More than two decades ago when Dr. Albee opened our doors, he felt it was important to offer those struggling an opportunity to decide on their care choices before stepping foot in our offices without incurring costs.  Today, we’re still doing records review and phone consultations for FREE.

The records review process is outlined here in great detail: http://centerforendo.com/sendingyourrecords.htm. Please read through it in its entirety before submitting case files (incomplete files or those materials submitted to us without registration will be destroyed, as we cannot accept unsolicited, untracked records nor review incomplete records). The first step to undergoing the free review is registering.

Once registered, you will receive your instructions, links/etc. to undergo the review process. Those who do  not register will not receive their instructional packet, and their records will not be reviewed.

You are also more than welcome to make an in-office appointment and come see us anytime! Please call 770-913-0001 to schedule; appointments are not accepted online. Please also note that unlike free records review, standard fees apply to any office visits, including first consult. These charges, and any paperwork you will need to bring, will be discussed at the time of booking your appointment with Dr. Albee or Dr. Sinervo.

HOW LONG DOES IT TAKE TO HEAR BACK FROM THE REVIEWING SURGEON AFTER MY RECORDS ARE RECEIVED? WHEN ARE SURGERIES BEING BOOKED?

Once your complete case file is received, your records will be reviewed and you will be contacted directly by the reviewing surgeon within 1-2 weeks. To find out if your records have been received, please call 770-913-0001. We do not schedule callbacks or notify; you will be contacted as the surgeon’s schedule permits by him directly.  If you are accepted as a surgical patient, you will then be contacted by Jean Williams, our Surgical Coordinator, to review finances and insurance and obtain your surgical date. You can expect to hear from Jean after she processes your file; approximately 1-3 weeks post-review. If all information is not complete on your registration form, this will delay your case significantly.

We are booking surgeries approximately 4-6 weeks out. It has been erroneously stated on certain social media groups that the date you are given depends on your payment status. This is unequivocally, absolutely false. CEC SCHEDULES ON A FIRST COME, FIRST SERVE BASIS. We do NOT give priority based on ability to pay. Thank you.

While every effort is made to accommodate urgent cases and date requests, please understand there is no ‘cancellation list’ per se and we may be otherwise unable to offer you specific dates. We do not process case reviews on a ‘rush’ basis, though every effort will be made to accommodate the nature of your case. If you are a physician or hospital sending us a direct transfer for emergency surgery, please call us directly at 770-913-0001 as soon as possible.

I’M GOING TO JUST SEND OFF MY RECORDS TO THE CENTER RIGHT NOW. IS THAT OKAY?

NO.  Please register first. Unsolicited files will be destroyed. We MUST have registration data for you before we can review your case.  Please see http://centerforendo.com/sendinfo.htm for details.  Thank you for understanding our need to adhere to our specific process in order to best serve your needs and protect your healthcare information and privacy.

I’M FAXING/EMAILING PICTURES, RECORDS AND FORMS IN SCANNED, MULTIPLE ATTACHMENTS. WHERE SHOULD THEY BE EMAILED/FAXED?

They shouldn’t. We do not accept scanned/emailed/attached or faxed files (with rare, pre-arranged exception). We also do not accept incomplete/separate materials except where pre-arranged in specific circumstances. Records must be sent, complete (narrative, forms, records, insurance if applicable), in one envelope to our offices at 1140 Hammond Drive, Building F, Suite 6220, Atlanta, GA 30328.

There are very limited exceptions to this procedure. If your physician will not release to anyone but us, or you are located out of the country, please let us know and we will direct you regarding your files transfer accordingly. No records will accepted by email. Thank you for understanding and respecting the process.

The best way to send us your records is via regular US postal mail. FedEx, UPS, etc. may be utilized, but we do not recommend use of express services. There have been many instances where patient records were attempted delivery on Saturdays, after hours, or completely mis-delivered to other offices in our complex, resulting in significant delays in the review process and at worse, lost case files.  Sending your file ‘express’ will not speed the review process up and may result in mishandling of your case by the delivery service.

WHY DO I NEED TO SEND RECORDS AND/OR A NARRATIVE?

We cannot evaluate your case accordingly and develop a potential treatment plan for you with no records. In very select cases, this requirement may be waived for certain individuals, but in general: we require medical records (a surgical diagnosis/prior surgery is not required, but we will need office records in lieu of surgical reports) as well as a completed copy of our “prospective new patient” packet, which you will be sent a link to at the time of your registration.  The narrative summary is also a critical part of the evaluation process. It is your experience with the disease, told in a way no one else can tell your story – from your perspective, in your own words. While we understand it may difficult (but perhaps cathartic!) for some to compile this summary, it is required. It can be as simple as a chronological listing of your diagnoses and treatments to date (if any) and how you are feeling now, or it can be extensive and highly detailed. We do read every word.

I REGISTERED, BUT DIDN’T RECEIVE A PACKET. WHAT HAPPENED?

One of two things: the packet went to your spam (very common!) file, or your registration was not received. If you’ve registered and received an email from one of our surgeons but not an emailed packet, that indicates the packet was either blocked or delivered to junk mail. Please check your filter accordingly. If it is still not there, or you didn’t receive any email from our staff at all, please get in touch at Heather@CenterForEndo.com.

ONCE MY RECORDS ARE REVIEWED, AM I CONSIDERED A PATIENT AND CAN I GET MEDICATION PRESCRIBED BY THE CEC?

NO. The records review we offer is a courtesy. It is not intended to offer or replace medical advice in any way and should not be considered as party to any CEC doctor/patient relationship. You will become an established patient once your surgery is actually booked, however, even then we cannot write any prescriptions until you are seen and physically examined in our office in person, under the law. We do not provide narcotic or any other prescriptions prior to seeing the patient in the officeWe do not write prescriptions of any kind for non-patients.

Once established as a patient, we do not fill prescription requests via email or fax. Requests must be made by the patient verbally via phone at 770-913-0001. We cannot write or refill any medications in any other way. There are no exceptions to this requirement.

Every attempt should be made to contact our offices with medical concerns or prescriptions requests during normal business hours, Monday through Friday. We understand, however, that of course needs cannot always be anticipated to take place during business days/hours. In such events, please call our service to be connected with the on-call surgeon, 24 hours a day, who will try and accommodate your urgent requests in any way possible.  Please do not email or leave voicemails with urgent medical or prescription concerns; please also NEVER contact staff via social media or by public postings, as we cannot protect your privacy via such means of contact and will not respond to public postings with information about your specific case. All requests regarding your care must be directly appropriately to our offices. Thank you for your understanding.

HOW MUCH DOES LAPEX SURGERY COST, AND IS IT ALL PAYABLE UPFRONT?

While lots of misinformation is often posted on Internet and social media groups regarding costs here at our Center, please know that no one other than the CEC can offer you any actual specifics regarding your case with us. Please contact us directly to discuss your details, as your case will not be the same as someone else. Please also understand our quoted fee does not include hospital costs, as they are separate and outside our control. We will, however,  help you work with the hospital and  others scheduled on your case to make it as affordable as possible. Once scheduled and your fee is contracted, you will be advised what your surgical deposit and necessary upfront costs are. Again – each case is different, so please discuss this matter with our offices personally.

We are unable to determine your specific fee prior to reviewing your case. Each individual’s situation is unique and thus is handled on private basis with the CEC’s Surgical Coordinator, Jean.  Please know we strive very hard to make it a possibility for all patients to receive care with us to the extent we can, and thus fees will only be determined based on the specific patient’s review, her recommended procedures, her personal financial situation and insurance details. There can be no exceptions to this. Thank you for understanding.

DO YOU TAKE INSURANCE?

This is one of the biggest misunderstandings surrounding the CEC. We are an out of network provider. This does not mean we do not take insurance – we do, as an OON provider. Subscribers who do not have out of network coverage in their respective plan are considered self-pay (and thus eligible for a potential discount). This includes TriCare subscribers.  Please understand there is no average “ballpark” figure which we can accurately offer you in advance, as out of pocket maximums will be based on the patient and her specific needs/case/coverage.  All patients work with Jean in our offices individually and privately AFTER their initial free consult, and a surgical contract – including exact fees – is then established before scheduling any procedures and coming to Atlanta. Credit cards are accepted and we can certainly explore payment plans and potential discounts on a case by case basis.

We DO help file and check your insurance, write appeals, file paperwork, etc. etc.  We also strive to make it a possibility for every patient to come to our Center for treatment and will work with each patient individually based on her needs.  Please do not base your decision to seek possible care with us on someone else’s costs and personal situation, which you may have read about on the Internet or Facebook. Each case is handled differently according to the woman or girl’s individual needs. For complete details, please visit http://centerforendo.com/insurance.htm or call our offices to speak with Jean. We are pleased to announce we now accept Care Credit.

DO YOU EVER DO ANY PRO BONO CASES?

Please discuss this directly with Jean – after your case has been reviewed. We work very hard to try and be flexible; please understand, however, we may not be able to accommodate everyone. Compassion care may be offered on a limited, criteria-specific basis. Please inquire directly.

DO I HAVE TO MAKE MULTIPLE TRIPS TO YOUR OFFICE BEFORE ACTUALLY HAVING SURGERY?

No. We know this is a costly inconvenience for the majority of our patients.  While you are always welcome to come to our offices in beautiful Perimeter Center, Atlanta, it is not an upfront requirement to schedule your surgery. We recognize the significant burden it places on patients and their families both in terms of time and expense; thus, we do as much as possible upfront via email, postal mail, fax and phone prior to actually requiring you to come in. Northside Hospital approaches our patient’s cases the same way and will do as much as they can before you arrive in Atlanta as well. The same is true for our collaborating team members.

HOW LONG WILL I NEED TO STAY IN ATLANTA IF I COME FOR SURGERY?

Every case varies, but the average stay is approximately 1 week. Arrive in Atlanta, pre-op in our offices the next day, surgery the day after that, recuperation in your hotel or lodging for a couple more days, and then return home to fully recuperate (this is a simplistic approximation; you will be provided more specifics about your own case at the time of booking). Check our website for area hotels and travel tips, and remember to ask for medical discount rates when booking.

HOW MANY DAYS WILL I BE HOSPITALIZED AFTER MY SURGERY?

Again, this varies based on the individual, but in general, our surgeries (with the exception of bowel resection, hysterectomy or other major component to your surgery) typically require only a 23 hour hold – this is considered *outpatient.* An overnight stay allows us to treat your post-op pain and observe you before sending you home in the morning. All procedures are done laparoscopically, but should you have a bowel resection, for example, you will be held longer; approximately 72 hours.  Again, these are general averages – each case is unique.

IS IT OKAY FOR ME TO BE DRIVEN HOME AFTER SURGERY? IT’S A 2/4/6/8/ETC. HOUR DRIVE.

Yes, you can be driven home once you are released, but remember: you will be in pain and we strongly suggest you to stop every 1.5-2 hrs to stretch your legs, use the facilities, etc. For travel tips post-operatively, see our website at http://centerforendo.com/goingthedistance.htm and http://centerforendo.com/traveling.htm.

If you are flying or your ride is more than a couple hours, you may wish to postpone or consider other options.

WHAT BLOOD WORK WILL I NEED PRIOR TO SURGERY?

Unless you are specifically directed otherwise with regards to your own case, we merely perform a finger stick at your pre-op. Northside Hospital will advise you in your pre-op phone consult if there is anything they require.

I HAVE RELIGIOUS OR OTHER RESTRICTIONS I.E. REFUSAL OF TRANSFUSION WHICH I WANT HONORED DURING SURGERY.  IS THIS A PROBLEM?

Not at all! We always gladly respect and uphold the wishes and beliefs of our very diverse patient population and always honor our patient’s needs.

I NEED A BABYSITTER/CAR SERVICE/RELIGIOUS ORGANIZATION/OTHER RESOURCE WHILE IN ATLANTA. CAN YOU HELP?

We will always try our best to assist patients with their various needs while in the Atlanta area.  However, please understand – we are a professional surgical practice and have limited knowledge of such services and limited time apart from patient care to research such inquiries.  Do let us know what you are looking in advance of your trip to Georgia, however, and we will try to accommodate your needs if we can. You can also find information about the area on the Perimeter Center Chamber of Commerce website.

I DON’T HAVE BOWEL DISEASE, SO DO I STILL NEED TO BOWEL PREP?

As Dr. Albee says, ‘only if you want the surgery.’ CEC requires all patients to prep. Our prep typically involves an enema/oral laxative combination, but this will be addressed with you personally at the time of your booking. We know this isn’t pleasant, but we will try to help make it as quick and painless as possible.  For helpful prep tips, please visit: http://endometriosis.org/resources/articles/how-to-survive-a-bowel-preparation

WILL I NEED PADS OR TAMPONS AFTER SURGERY? WHEN CAN I SWIM/HAVE INTERCOURSE/EXERCISE/GO BACK TO WORK/ETC.?

Panty liners for a few days following surgery are expected; discuss the specific needs/expectations of your case with your surgeon.

All expectations and return to normal activity will be addressed with you personally at the time of your surgery. Typically, most individuals can expect a 2-3 week post-op return to normal activity but again, this will be discussed personally with you based on your own case.

DO I NEED TO STOP TAKING MY MEDS PRIOR TO SURGERY?

This will be discussed with each patient personally. There are a number of medications patients must come off prior to surgery, however, not everyone will need to stop all their current therapies. This will be reviewed with you at the time of your surgical booking.

DOES NORTHSIDE HOSPITAL HAVE PRIVATE ROOMS?

Yes, all rooms with the exception of the post-op holding and recovery bay are private. You can learn more about the hospital here. Your surgery will be performed at the main Atlanta Campus.

CAN MY PARTNER/SPOUSE/FAMILY MEMBER STAY WITH ME OVERNIGHT?

Visitors can see you all day until approximately 9pm or so; partners/loved ones may be able to spend the night with you chair-side – check with your nurse. For policy regarding children, see http://www.northside.com/atlanta.

DO I NEED TO MAKE A FOLLOW-UP APPOINTMENT AFTER SURGERY?

If your desire is to come in and see your surgeon before you leave Atlanta, you are certainly welcome and encouraged to do so. However, it is not required to be discharged, as your surgeon will be seeing you in the hospital prior to your release.

CAN THE CEC SURGICAL STAFF COME TO MY LOCATION AND PERFORM SURGERY IN MY LOCAL HOSPITAL?

As much as we wish we could, our staff works in, has privileges at, and maintains our operating room only in Northside Hospital here in Atlanta. However – we do offer training and Fellowships. Professionals wishing to observe or train with us should visit our preceptorship page at http://www.centerforendometriosiscare.com/surgical-methods. We also frequently lecture, teach and present at medical schools, universities, nursing schools, hospitals, numerous professional and organizational events and more. If you would like to have us speak or present at your meeting, support group or other local resource, please just reach out and let us know! We’d be very happy to arrange a trip to your area.

WHAT IF I HAVE ONGOING PAIN OR ISSUES AFTER SURGERY?

You need to call us and notify us as soon as possible.  We cannot stress this enough: *Email/posting on Facebook or Internet boards/etc. are not acceptable or effective means of communication regarding your personal healthcare* and you MUST *speak* with a medical team member as soon as your symptoms present following surgery by calling the office! Please also do not ask others (unless they are your legal/listed partner, patient advocate or caregiver) to call or write us on your behalf. We do not discuss patient cases with anyone, including other patients. Our phone # is 770.913.0001.  We cannot action cases we do not know about or that are publicly posted on social media (for us to do so would violate your privacy protection under the law), so please contact us by phone.

It can take upwards of three months post-excision to heal completely; possibly longer in some cases. Though you may return to normal activity within 7-14 days, internal healing takes much longer. Discuss with your surgeon realistic outlooks for your specific case.

CAN THE CEC HELP ME COMPLETE MY FMLA AND/OR DISABILITY PAPERWORK?

Yes, surely. There is a nominal fee of $35.00 payable to the Center for Endometriosis Care/Kenny R. Sinervo, MD FRCSC, LLC for our assistance with and completion of all Family Medical Leave Act and/or Disability paperwork.  Should you have any questions, please don’t hesitate to ask by calling 770.913.0001. Please note: this fee applies to established patients who have their date of surgery scheduled and need their disability paperwork completed. It is not, and in no way relates to, a fee for our records review. As always, the records review is completely free.

DO YOU HAVE ANY ORGANIZATIONAL OR INDUSTRY MARKETING PARTNERSHIPS?

Despite misinformed assertions you may have read on certain social media groups by persons not associated with our Center, the CEC does NOT have ANY affiliations or partnerships with any individuals, organizations, industry partners or associations in the endometriosis community. We do not recommend or endorse any specific products or foundations, nor do we pay for inclusion on referral lists or other marketing resources. Our referrals and recommendations come only from patients who have been successfully treated by the CEC – and we wouldn’t have it any other way. 

HOW LONG HAS THE CEC BEEN IN BUSINESS?

The CEC (aka Kenny R. Sinervo, MD FRCSC, LLC) was formed by Robert B. Albee, Jr., MD over two decades ago around four guiding principles to assist those with (or who think they may have) endometriosis and pelvic pain. It is led today by Medical Director, Ken Sinervo, MD, who  joined the CEC in 2001. Both of our surgeons are Board Certified, advanced gynecologic endoscopists. We adhere to the following strict ethics:

- Recognizing subtle disease in all its manifestations;
– Removing all endometriosis while preserving a woman or girl’s organs;
– Performing pathological examination on all excised tissue; and
– Treating our patients with respect and compassion as partners in their health care.

WHY IS ENDOMETRIOSIS SO DIFFICULT TO TREAT EFFECTIVELY?

Often misdiagnosed and ineffectively treated, symptoms of endometriosis often chronically persist because it is rarely treated through the laparoscopic excision – LAPEX – procedure we have been performing here for decades across thousands upon thousands of women and girls. Such incomplete treatment results from even well-meaning physicians who do not recognize the disease or remove it in its entirety, leaving deep endometriosis – along with painful symptoms and pathology – behind. Most patients who come to us from every corner of the globe have received prior, failed therapies.  Suppressive medications and hysterectomy (and even in this day and age still, “pregnancy as a cure”) are often recommended as treatments or cures, which of course they are not. We believe the key to success is removing *disease*, not *healthy organs*. You can learn more about excision and endometriosis here.

True recurrence is actually low if all disease is thoroughly and meticulously excised from all locations. Through our LAPEX approach, women and girls of all ages – at all stages of disease – have an excellent chance of being pain-free for the long-term, with minimal chance of recurrent or persistent symptoms. We have now treated to date almost 5,000 patients at our Center, exclusively through meticulous and painstaking laparoscopic excision, for more than 20 years. We have excellent long-term success rates among women and girls of all ages.

ALL LASER SURGERY IS CREATED EQUAL, RIGHT?

Wrong.  Our surgeons are global leaders in the treatment of endometriosis and are among a mere handful of surgeons in the world who have perfected the C02 excision technique. Dr. Albee and Dr. Sinervo have long used the C02 laser to *dissect* the disease – this differs significantly from other, less meticulous surgical/laser techniques like vaporization and electrocautery/fulguration, or coagulation; all of which destroy the tissue, making microscopic evaluation impossible and do not remove all endometriosis – that’s why we don’t use those approaches.

CEC surgeons use the laser as a *precision cutting tool*, NOT as a means of tissue destruction – vastly different from laser vaporization, etc.  There is a very big, fundamental difference. Endometriosis of the bowel, bladder and beyond can also be safely and completely removed with the laser through excision, as can dense adhesions and deep, infiltrating peritoneal disease. All excised tissue is sent to the pathology lab for examination. You have the security of knowing exactly what was found and removed in your surgery.

The tool is not as important as the skill of the surgeon. Excision can be performed using cold excision, laser, robot or other means; what is not as important as how. If a surgeon cannot excise, they cannot excise using any tool.

I WANT TO GET DIRECTIONS. WHERE ARE YOU LOCATED?

The Center for Endometriosis Care | Perimeter Town Center
1140 Hammond Drive | Building F, Suite 6220 | Atlanta, GA 30328 USA
Toll Free: 866.733.5540 | Outside U.S.: 770.913.0001 | Fax: 770.913.0005
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WHERE CAN I CHECK YOUR REFERENCES?

Start here! http://centerforendo.com/references.htm.  You can also just Google us or check with various Internet support groups. Several references are available on our Facebook account as well.

CAN YOU RECOMMEND OR COMMENT ON THE WORK OF OTHER SURGEONS?

No, but we’ll be happy to suggest some resources and local referrals that may assist you where and when we can.

I STILL HAVE QUESTIONS.  WHAT SHOULD I DO?

Call or write us anytime! The best place to get answers is directly from the CEC. We’re looking forward to hearing from you and want to help you however we can!

Endometriosis: Understanding a Complex Disease


Be sure to also check out this Ladies Home Journal feature:
“20 Years of Mysterious Pain: How I Was Finally Diagnosed with Endometriosis”


deep excision of endometriosis
A Challenging Conundrum

Pelvic pain? Infertility? Dyspareunia? “IBS” type symptoms? Bladder pain? Bloating? Endometriosis could be at the root of these symptoms – and many more.

A growing public health crisis carrying a fiscal tag of nearly $119 billion annually, endometriosis affects approximately 176 million individuals worldwide (7.5 million in just the U.S. and 775,000 in Canada alone) – yes, even the rare male. The illness accounts for a significant loss of productivity – nearly 11 hours per woman per week; 38% more than for those with similar symptoms who do not have the disease. Endometriosis remains a leading cause of gynecologic hospitalization and hysterectomy (many performed needlessly) and can distort every aspect of the impacted person’s life. Yet despite it’s socioeconomic and global health impact, it remains a poorly understood, underdiagnosed, undertreated disease, sorely lacking in awareness and validation.

Endometriosis is much more than simple, so-called “killer cramps” (as it is often mistakenly referred to), with symptoms routinely occurring apart from menses and, in many instances, becoming chronic in nature.  It is important to understand that minor cramping during menstruation IS NORMAL, particularly in adolescents.  Inflammatory hormones such as prostaglandins (along with others) are linked to menstrual discomfort; this mild pain is not typically cause for alarm and may be remedied through a variety of measures.  Usually, such pain is temporary and subsides after menses. This is called “dysmenorrhea” and affects many women and girls. Dysmenorrhea is NOT the same as endometriosis. Endometriosis is NOT the same as simple ‘painful periods.’

Endometriosis can impact women and girls of all ages – menstruators and non-menstruators alike (including some rare men and before a girl’s first period). The disease has also been documented in the human fetus.  It is quite common in teens, though vastly underdiagnosed. Without a doubt: endometriosis has a significant social and psychological impact on those affected by the disease, across several domains of their lives. The time for endometriosis to receive recognition as a major health issue is long past due.

Normal endometrium is the lining of the uterus, which breaks down and is shed during menstruation. The normal endometrium is profoundly, histologically different from the ectopic glands and stroma that comprise endometriosis, clinically defined as the presence of functioning endometrial-like tissue in places other than the lining of the womb. This tissue resembles - but is not the same as‘normal’ endometrium.  bowelThis aberrant process gives rise to pain, inflammation, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue) and more.

The pain and symptoms can worsen or even become chronic over time as the lesions become deeper and more fibrotic.  As a result, infertility, bladder or bowel dysfunction, painful sex and many other physical and quality of life issues can occur. Current research indicates there is a preponderance of inflammatory milieu and hyperinnervation involved in the pathophysiology of pain in those with the disease, and that patients with chronic pelvic pain routinely demonstrate increased pain sensitivity even in non-pelvic sites. Early data implies that where the lesion is located may correspond to infiltration and/or adhesion formation, though further research needs to be done.

menstrual-crampsImportantly; in recent years, a potential cancer risk in association with the disease has emerged, but it is critical to understand that endometriosis is not a malignancy. Increased risk factors include early-stage/low-grade disease and a specific histology i.e. endometrioid or clear cell carcinoma [Kim, Kim, Chung, Song. Risk and prognosis of ovarian cancer in women with endometriosis: a meta-analysis. British Journal of Cancer 110(7):1878 (2014)], but much is still unknown about the relationship. To that end, robust research is underway to evaluate the clinicopathologic characteristics of endometriosis-associated ovarian cancer (EAOC) in comparison with non-EAOC as well as other potential links. It is also true the potential exists for endometriosis to malignantly transform, but this again is a poorly understood and uncommon phenomenon. Though some mistakenly refer to the disease as a “benign cancer,” it is not: all cancers by definition are malignantIt is inaccurate to refer to endometriosis as ‘cancer’ and doing so contributes to the spread of misinformation that continues to surround the disease. “Benign” does not imply the disease has any less capacity to derail lives, however. Nonetheless, much research remains to be done to better illustrate and understand the tenuous link between endometriosis, ovarian cancer and other potential malignancies.

There has been data over the past few decades indicating endometriosis may be linked to select co-morbid conditions in some individuals with the disease as well, including a low/modest association between certain pigmentary traits and melanoma;  pain syndromes (interstitial cystitis, irritable bowel syndrome/inflammatory bowel disease, chronic headaches, chronic low back pain, vulvodynia, fibromyalgia, temporomandibular joint disease, chronic fatigue syndrome, etc.) as well as mood conditions (defined as depression and anxiety) and asthma; select infections and endocrine disorders; headaches and migraines; thyroid disease and more. Similarities in the clinical and epidemiological features of the associated disorders may be at the root of their co-morbidity, and further investigation is needed.

Generally, no particular demographic, personality trait or ethnic predilection exist in association with endometriosis and there is no preventive measure, though some provocative phenotype studies have begun investigating certain physical characteristics (are women with endometriosis more attractive??) as part of the disease profile. Still, widespread lack of awareness and accurate disease understanding on the part of society – even by those affected – contributes in part to the average diagnostic delay of nearly a decade (6.7 years) across multiple physician consults—even today.

Common, oft-debilitating symptoms of, and potential associations with, endometriosis include (but are not limited to):

Crippling mens16_9210501799.jpgtrual pain
* Pelvic pain at any time, often intractable
Bowel or urinary disorders/pain/dysfunction
* Painful intercourse/pain with sexual activity
* Infertility/pregnancy loss/possible link to preterm births
* Immune-related disorders
* Allergies, migraines or fatigue that tends to worsen around menses
*The disease may resemble some symptoms of, and has been linked to, adenomyosis.

Endometriosis can present at an early age and typically develops on the pelvic structures including the rectovaginal cul de sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes, but as disease recognition grows, is also increasingly being diagnosed in areas outside the reproductive organs i.e. diaphragm and lungs, where it can induce a dangerous condition called Catamenial Pneumothorax. “Pelvic endometriosis” is traditionally defined as lesions of the tubes, ovaries and local peritoneum; “extrapelvic disease” is wide-ranging and refers to that found elsewhere – including the gastrointestinal tract, urinary tract, pulmonary system, extremities, skin, central nervous system and beyond [Jubanyik, Comite. Extrapelvic Endometriosis. Obstetrics & Gynecology Clinics of North America, Volume 24, Issue 2, Pages 411-440 (1997)]. Rarely, endometriosis may be diagnosed even in areas as far removed from the abdominopelvic region as the brain and soleus/gastrocnemius muscles (though again, this is highly uncommon – indeed, in performing over 8,000 procedures across a span of 20+ years, we have never encountered brain endometriosis in our practice). There is also at least one report in the literature of vena cava invasion in a post-menopausal woman. Symptoms often start early in life, but may be ignored by caregivers, healthcare consumers and practitioners alike. To wit; an estimated 70% of teens with pelvic pain go on to be later diagnosed with endometriosis.

IMG_1584

(c) Center for Endometriosis Care

The only way to obtain a definitive diagnosis of endometriosis is through surgery; typically via Laparoscopy. Though symptoms and/or diagnostic testing (CT scans, MRIs, etc.) may give rise to “informed suspicion,” only surgery permits the requisite visual and more importantly, histological, diagnosisLaparoscopy also facilitates treatment of the disease.  Though a popular approach among some ob/gyn generalists, it is inappropriate – and impossible – to diagnose endometriosis medically. There have been over 50 biomarkers studied to date towards a non-invasive diagnosis, none with universal success. A more recent study indicated that concurrent measurements of CA125, syntaxin-5 and laminin-1 might be a useful, non-invasive test in the diagnosis and prediction of disease severity, but this has not been borne out in large, multicenter studies.

Staging of disease may done at the time of diagnosis. This is a classification system developed by the ASRM based on the location, extent of and depth of disease, presence and severity of adhesions, and presence and size of endometriomas. Based on the corresponding number of points, endometriosis is assigned into stages I-minimal, II-mild, III-moderate, or IV-severe.  Stage does not correlate with severity of symptoms and a better system is needed.

 Image Copyright (c) American Society for Reproductive Medicine

Often called a “disease of theories”, the definitive cause(s) of endometriosis remain under debate, though demonstrated association with a number of hereditary, environmental, epigenetic and even certain menstrual characteristics exist. Current research has implicated HOX genes, mesenchymal stem cells and certain immunologic factors in disease origin; nonetheless, no single theory explains endometriosis all those affected; more likely, a composite of several mechanisms is involved.

name_removed_EndoPicturesTheories of origin which have emerged over time include:

Retrograde menstruation – ‘Sampson’s Theory’, which dates back to 1921, is perhaps the most popular – yet flawed – of theories. Initially, Dr. John Sampson assumed that endometriosis is the result of “seedlings” from the ovaries.  Later, in 1927, he proposed the disease results from reflux menstruation, wherein endometrium is “showered backwards” onto the peritoneum and ovaries, taking hold and implanting.  However – endometriosis lesions and endometrium are NOT the same histologically, and retrograde menstruation is a very common phenomenon among most menstruators.  Essentially, Sampson’s Theory considers endometriosis as normal endometrial cells which behave abnormally because of abnormal peritoneal milieu; however, this is actually not supported or borne out in the current literature, though this notion has persisted for almost a century. Unfortunately, this popular theory continues to complicate effective management and understanding of the disease today. Despite persistent propagation of Sampson’s Theory, many studies have demonstrated that retrograde menstruation does not account for pathogenesis; the eutopic and ectopic endometrial stromal cells in those with endometriosis exhibit fundamental differences in invasive, adhesive, and proliferative behaviors from those who do not have the disease. Without question, there are various additional factors that contribute to disease pathophysiology and pathogenesis.

Immunologic dysfunction – a “broken” immune system may allow for the disease to take hold and play a small role in lesion developmentbut this does not sufficiently explain the disease process to begin with.

Homeobox genes – dysfunction of HOX genes may results in abnormal differentiation and migration of cells during embryonic formation of the female reproductive tract, giving rise later to endometriosisThe presence of endometriosis in fetuses strongly suggests an embryologic origin.

Stem Cellshave been linked to disease even in absence of menstruation; this would also account for the rare cases of documented male endometriosis. Work continues to emerge from this area of important research.

Genetics – increased risk of endometriosis may exist in those with a mother or relative with the disease.

Environmental Toxicants pollutants (including a speculative link to dioxins, for which there is insufficient evidence) have been hypothesized to induce certain cell changes, which in turn facilitate abnormal immune response allowing for the disease to take hold.

In specific, very limited cases the cause may be anatomic and/or due to neonatal uterine bleeding, but this remains wholly speculative.  Still more recent data is exploring endometriosis from a systems biology perspective (Griffith et. al. 2014), while others maintain the disease results (at least in part) from hormonal aberrations i.e. certain deficiencies and inappropriate activation of receptor signaling and resistance, DNA Methylation, and/or aberrant MicroRNA expression.

Lymphatic spread/Halban’s Theory suggests vascular or lymphatic dissemination, but little confirmation has been reached in this particular area of research.

Yet, despite the myriad of theories, no single assumption accounts for all cases in all those affected. What do we believe?  It is likely that we are born with endometriosis and a combined number of pathological factors subsequently trigger the disease later in life.

Nevertheless, endometriosis is certainly ‘not in your head’ though a number of sources have indicated over the years that endometriosis is caused by “negative emotions” and various deep-seat psychological components. While there are various social, psychological and emotional aspects to any painful, chronic illness such as endometriosis, these are consequences of the disease – not the cause.  Endometriosis has its origins in very real, very complex genetic and molecular underpinnings – not some abstract ‘rejection of one’s uterus’ or inability to get along with one’s parents, among other erroneous claims.  Various psychoimmune interactions are present in those with endometriosis i.e. pronounced immunological shifts, manifested by imbalanced production of anti-inflammatory cytokines among other biologic responses – but these are part of the network of adaptive reactions associated with and perhaps because of it – not the origin of the disease. Such offensive contention that endometriosis is a psychological ailment due to one’s internal failings or otherwise rooted in emotions leads only to further delayed diagnosis and ineffective treatment of the disease.

Alternative therapies, such as diet and nutrition, acupuncture, physical therapy, and other complementary treatments can be helpful at effectively managing symptoms on a non-invasive basis when combined with quality excisional surgery, which we believe is the cornerstone of any effective management plan.

surg2Dr. Albee and Dr. Sinervo are among the early and few pioneers to focus their work solely on treating endometriosis and pelvic pain pathology. We do not practice obstetrics here at the CEC, and concentrate only on endometriosis and causes of pelvic pain. Our Board Certified surgeons use the C02 laser to *dissect* the disease, and having been doing so successfully for more than twenty years via a procedure we coined “LAPEX”, or Laparoscopic Excision.  LAPEX differs significantly from other, less meticulous laser/other surgical techniques including vaporization and electrocautery, commonly performed by many ObGyns.  These methods destroy tissue, making microscopic evaluation impossible and leaving behind endometriosis “roots” – leading to high recurrence.

LAPEndometriosis: Tip of the IcebergEX is indeed the gold standard for the definitive treatment of endometriosis and may alleviate many of the associated symptoms, but is unfortunately practiced by only select accredited, advanced gynecologic-endoscopic surgeons in the world. Our award-winning staff is among the few in the world who are Board Certified and accredited as such. Excision requires highly advanced surgical expertise and commands intense training on the part of the practitioner, as well as a complete and thorough (and accurate) understanding of endometriosis etiology, pathophysiology, sequela and far-reaching consequences.

Confusion often surrounds the surgical approaches for endometriosis. It is important to understand that the laser is a tool – not a method. Laparoscopy is the surgical approach (minimally invasive) – not a tool. Likewise, Da Vinci robotic-assisted procedure is also an approach, not a method.  It is important to understand that tool and method are not nearly as important as skill of the surgeon: if he or she cannot excise, they cannot excise using any method or tool.  For example: laser can be used to safely and successfully perform laparoscopic resection (excision) of all disease, as we do – or it can be used to superficially and incompletely burn surface lesions.  It’s imperative to determine which method your surgeon will be using and understand their disease knowledge, approach and expected outcome. 

At the CEC, our surgeons use the laser as a precision cutting tool, NOT as a means of tissue destruction – vastly different from vaporization and superficial techniques.  Endometriosis of the bowel, bladder and beyond can be safely and completely removed with the laser through excision, as can dense adhesions and deep, infiltrating peritoneal disease. All excised tissue is sent to the pathology lab for examination.  We also utilize intraoperative adhesion barriers and surgical techniques to minimize formation of secondary (de novo) adhesions. We work with a full surgical team including colorectal, urologic, vascular, thoracic and other colleagues as needed to ensure all endometriosis, from all areas, is thoroughly resected and removed at the time of surgery – as well as for appropriate collaborative follow-up. Through LAPEX, patients of all ages – at all stages of disease – have an excellent chance of being pain-free for the long-term, with minimal chance of persistent symptoms. Our data – dating twenty-five years back across more than 4,500 patients from 43 countries and over 8,000 procedures – shows that in our population, true recurrence is actually quite low when endometriosis is thoroughly and meticulously excised from all locations.

Indeed, although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients may receive incomplete treatment in their own healthcare setting, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that many who have undergone repeated surgeries and had a hysterectomy still suffer from active disease. You can learn more about this topic here.

The need to improve surgical approach and/or engage in timely referrals is unquestionable; to that end, the CEC has long engaged in a robust campaign of education and surgical fellowships to raise awareness and leave a legacy of improved care for all those with endometriosis (preceptors can click here for more information). Through quality surgery, all disease truly can be removed and debulked; allowing the patient’s own lifestyle interventions (e.g. physical therapy, diet/nutrition, exercise, acupuncture, etc.) to be most effective and ensure maximum outcome.  Above all, genuine compassion for those who battle this insidious illness must be present, and this is what we strive for here at the CEC every day.

Unfortunately, many who struggle with the disease are often misdiagnosed and/or directed to “manage” the pain for years through repeat, superficial surgeries in which all disease is not removed or use of painkillers and/or medical therapies like oral contraceptives and hormonal injections, but these only mask symptoms and do not treat disease in any way.  Patients are also sometimes misled to believe that the only long-term solution is removal of reproductive organs (hysterectomy/salpingo-oophorectomy) – a dangerous myth. Though hysterectomy has its place in endometriosis treatment for select cases, the disease is not “cured” by removal of the uterus, ovaries and/or tubes and cervix.  This ongoing misconception is responsible for countless, needless hysterectomies performed each year – indeed, nearly half of the 600,000 hysterectomies performed in the United States annually are the result of endometriosis.  Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue.  Many patients will need complex, multidisciplinary surgery combined with adaptation of lifestyle changes.

painThe Center for Endometriosis Care (CEC) is a COEMIG-designated Center of Excellence which was formed over two decades ago by Robert B. Albee, Jr., MD and is led by CEC’s Medical Director, Ken R. Sinervo, MD – Board Certified, global pioneers in the precision care and treatment of the disease.  Often misdiagnosed and ineffectively treated, the symptoms of disease often chronically persist because it is rarely treated through the advanced, meticulous Laparoscopic Excision (LAPEX) procedure we have been performing here for decades, across thousands and thousands of patients. Such incomplete treatment results from even well-meaning physicians who do not recognize the disease or remove it in its entirety, leaving deep disease – and painful symptoms and pathology – behind. Suppressive medications and hysterectomy are recommended as next-step ‘cures’ – which of course they are not. We believe the key to success is removing disease, not organs.  True disease recurrence is actually quite low if all endometriosis is thoroughly excised from all locations – including the bowel, bladder and beyond.

Only through early intervention can we reduce the associated morbidity, infertility and progressive symptoms of endometriosis.  We must “alleviate our culture of menstrual misinformation” for our daughters through timely and authoritative disease education – thus leading to reduced costs and most importantly, improved patient outcome.  Early diagnosis and proper treatment are critical keys to living well in spite of the disease. Please let us know how we can help you.

Have you had Excision & Other Surgical Treatment?

Have you had both surgical Excision (must be documented in operative notes) as well as prior superficial surgical removal of endometriosis (ablation, vaporization, coagulation, etc.)? If so, please consider participating in this quick and private survey:

https://www.research.net/s/5GWC8ZTIMG_1579

 

Just How Terrible IS Endometriosis?


Copyright RedOrbit Media

Researcher Kate Young and her team at Monash University have identified significant gaps in the care and treatment of women with endometriosis, across many aspects of affected shareholder’s lives.

RedOrbit Science News provides a summary and link to this important study here, with commentary by the CEC: http://www.redorbit.com/news/health/1113232869/endometriosis-burden-on-women-091214

 

 

Thoracic Endometriosis

By Nicholas Kongoasa, MD, MB BCh.

The term thoracic endometriosis has been used to describe the varying clinical and radiological manifestations associated with the growth of endometrial-like glands and stroma in the lungs or pleural surface. Catamenial pneumothorax (CP) is defined as pneumothorax (medical term for collapsed lung) happening around the menstrual period and is the most common manifestation of thoracic endometriosis, accounting for about 80% of cases. Rarely, thoracic endometriosis may present with catamenial hemoptysis (CH), which is expectoration of blood or blood-tinged sputum in association with menses. In almost all cases, thoracic endometriosis is unilateral and right sided, although there are rare cases of left sided disease. Bilateral disease is extremely rare. The presentation of CP includes cough, chest pain and shortness of breath. The chest pain may be similar to patients with spontaneous pneumothorax or present as shoulder, scapular or neck pain. Some management strategies for thoracic endometriosis are as follows.

For any individual with a spontaneous recurring pneumothorax, a gynecologic history and evaluation of her menstrual cycle should be done. When thoracic endometriosis is suspected, Video-Assisted Thoracoscopic Surgery (VATS; a minimally invasive thoracic surgery that does not use a formal thoracotomy incision) is the preferred approach. The diaphragm needs to be explored thoroughly, including the visceral and parietal pleura, and if necessary, a port should be inserted at the subcostal margin to assess the posterior diaphragm. All accessible lesions and fenestrations should then be resected. Fulguration or ablation of lesions should not be used, as it is inadequate for treatment of endometriosis and will result in higher recurrence rates.

Following resection, plication (procedure which allows diaphragm to move and expand better, thereby improving ventilation) is recommended to seal and strengthen the diaphragm. Simple suturing of the fenestrations does not provide tissue diagnosis and is usually followed by recurrence. Lesions close to the phrenic nerve or its main divisions are best treated by limited resection (if possible) and repair. A mechanical pleurodesis is also further recommended after all accessible lesions have been excised.

Medical treatment has long been considered the first choice in patients with thoracic endometriosis. The literature contains a variety of reports on the use of oral contraceptives, progestational drugs, danazol and gonadotropin-releasing hormone (GnRH) agonists. Experience in the last three decades has been greatest with danazol and GnRH agonists. However, the results of medical treatment for CP have been disappointing. At 6 and 12 months, surgical treatment of CP resulted in far lower recurrence rate than did hormonal therapy (5% and 25% compared with 50% and 60%). Therefore, before initiating pharmacologic disruption of ovarian steroid genesis in a young woman, all surgical treatment options should have been exhausted.

We propose joint surgery by a thoracic surgeon and gynecologic surgeon specialized in endometriosis wherever possible. The CEC will always collaborate if thoracic endometriosis is suspected, performing the surgery jointly between Dr. Ken Sinervo and the thoracic surgeon. Not only will this allow for an assessment of the diaphragm from both the pleural and peritoneal side concurrently, this will also allow more thorough identification of endometriosis lesions and fenestrations by both specialists. Additionally, there is a significant association between the presence of pelvic endometriosis and thoracic endometriosis, and a joint surgery will further allow the treatment of any pelvic endometriosis at the same time. The thoracic surgeon may want to do some imaging studies first prior to the surgery to see which side of the chest the disease is located.  Depending on the extent of the surgery, individuals may need to stay in the hospital between 1 and 5 days.

Resource of interest: Glynis D. Wallace, DMD has written a book on her experiences with lung and colon endometriosis. Visit her site here.

Material(s) presented herein are for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No portion of this correspondence should be considered as party to any CEC doctor/patient relationship. All contents herein are © copyright by the Center for Endometriosis Care except where otherwise explicitly noted. All rights reserved.

Interstitial Cystitis: Guest Feature by Dr. Martha B. Boone

drboone

Interstitial Cystitis
By Dr. Martha Boone

Interstitial Cystitis is a chronic inflammatory condition of the bladder. Its cause is unknown. The most common type of cystitis in women is caused by a bacterial infection and can usually be treated with antibiotics.

Interstitial Cystitis is NOT caused by bacteria and does not respond to conventional antibiotics therapy, in most cases. Interstitial Cystitis can present with a variety of complaints.

Interstitial Cystitis is also known as the painful bladder syndrome. It can be a chronic condition in which bladder pressure, bladder pain, pelvic pain, frequency, and urgency can appear in any combination of symptoms. The most common symptom seen in clinical practice is discomfort when the bladder is full and a feeling of relief when the bladder is empty.

Interstitial Cystitis (IC) is different from urinary tract infection. A urinary tract infection is actually caused by a bacteria that is found in a urine culture. Interstitial Cystitis (IC), to the best of our current knowledge, is not an infectious disease. IC is felt to be most likely an inflammatory disease of the bladder. The cause of IC remains unknown despite many years of research.

Signs and symptoms of IC:

Pain in your pelvis between the vagina and anus. For men, pain in the scrotum and anal area, and pain above the pubic bone.

Chronic pelvic pain.

Urgent need to urinate.

Frequent urination of small amounts throughout the day and night.

Pain or discomfort when the bladder fills and relief after urinating.

Painful intercourse.

Even though the cause of IC is not known, there are several theories. Some believe that the bladder’s protective lining has been damaged in some manner. Others believe that IC may be a type of autoimmune reaction. Some researchers have felt that heredity plays a part. Prior bacterial infections can predispose a person to IC and some researchers believe that it may be at least partially an allergic reaction.

IC may improve on its own or the patient may have cyclical episodes of IC “flares”. Risk factors include being female:

Sex
Women have a 90% greater incidence of IC than men.
Age
Most people with IC are diagnosed during their 30’s or older. There are however, cases of younger people with IC.
Any chronic pain disorder.
People who have irritable bowel syndrome, fibromyalgia, migraine headaches, and any other chronic pain disorder, appear to be more prone to IC.

IC can result in a number of complications:

Reduced bladder capacity: IC can lead to the deposition of collagen in the bladder wall which can make the bladder wall stiff. This can lead to a reduced bladder capacity which means your bladder holds less urine.

Decreased quality of life: Frequent urination and pain can interfere with activities, work, and daily enjoyment of life.

Sexual problems: Frequent urination and pain with intercourse can strain personal relationships and make intimacy difficult.

Emotional problems: Chronic pain and interrupted sleep association with IC can lead to emotional stress and the lack of sleep can actually lead to depression.

Diagnosis:

Medical History and Bladder Diary. Your doctor will ask you to describe your symptoms so we request that you keep a bladder diary to include the volume of fluid that you drink and the volume of urine that you make.

Pelvic Examination. During a thorough pelvic examination, your doctor will check for any gynecological causes of your pelvic pain.

A urine test. Your doctor will perform a urinalysis and urine culture to be certain you are not suffering from a bacterial infection.

Many Facilities perform a Potassium sensitivity test. It is my feeling that this test is not necessary and can lead to an inordinate amount of pain, urgency and discomfort that is not necessary to make the diagnosis.

Cystoscopy. With Cystoscopy your doctor will insert a small scope with a tiny camera into your urethra to evaluation the lining of your bladder. This can be performed in the operating room along with distention of your bladder and possible irrigation of your bladder with anti-inflammatory drugs. Cystoscopy is performed mostly to rule out bladder cancer.

Bladder Biopsy. Bladder biopsy is not absolutely necessary to the diagnosis to IC. Biopsy is done to determine the degree of inflammation and to rule out bladder cancer.

To have the diagnosis of IC, all that is necessary is for you to have symptoms of a urinary tract infection (frequency or urgency or burning with urination or pelvic pain, or a feeling of discomfort with bladder filling) and to have had 3 negative urine cultures.

TREATMENTS FOR IC:

There are many treatments for IC and each of them has approximately a 75% success rate:

Physical therapy: Decreasing the muscle tenderness and restrictive connective tissue can greatly aid in decreasing symptoms of IC.

Oral medications: Advil, Motrin, Naproxen, and Tramadol.

Amitriptyline is world-wide the most prescribed drug for IC and felt by many to be the most effective.

Antihistamines (Claritin, Atarax)

Pentosan (Elmiron) is the only FDA approved drug for IC. It is believed to have anti-inflammatory effects and to restore the innersurface of the bladder lining.

Other techniques include:

Transcutaneous Electrical Nerve Stimulation Unit. This mild electrical pulse can relieve the pelvic pain and in some cases, reduces the urinary frequency. (TENS)

Sacral Nerve Stimulation. Your sacral nerves are your primary link between the spinal cord and the nerves in your bladder. Stimulating these nerves may reduce urinary urgency association with IC. With sacral nerve stimulation, a thin wire is place at the sacral nerve and it delivers light electrical impulses to your bladder. The advantage to this therapy, is that it can be tested prior to permanent implantation. This is one of Dr. Boone’s favorite treatments for the urgency and frequency of IC. When the number of trips to the bathroom are decreased, particularly at night, the patient can frequently manage the pain syndrome more effectively.

Bladder Hydrodistention. Dr. Boone is one of the most experienced doctors in Georgia, with this technique. Many patients will notice an improvement in symptoms after undergoing Cystoscopy with Hydrodistention in the operating room. This procedure may be repeated. It is usually combined with bladder irrigation of anti- inflammatory agents. Dr. Boone uses the “Rescue Bladder Cocktail”.

Medications can be instilled into the bladder in the office. Dr. Boone uses the “Rescue Cocktail” and has patients come once a week for 6-12 weeks for the bladder installation.

Surgery. Most practitioners caring for IC patients use surgery infrequently. There are lesions in the bladders of some IC patients called Hunner’s ulcers. If these are resected, patients can see great improvement. These lesions are however, somewhat rare. In the past, surgeons have removed the bladder, augmented the bladder with other organs such as bowel and cauterized the lining of the bladder. None of these surgeries are recommended, except as a very last resort, as the success rates are extremely low.

Fortunately IC, responds well to lifestyle and home remedies. Dietary changes may decrease bladder irritants. Common irritants are carbonated beverages, caffeine, chocolate, citrus products, Vitamin C, tomatoes, pickled foods, alcohol, spices, and artificial sweeteners.

The Interstitial Cystitis Association can provide a full list of the foods. Dr. Boone does not recommend that you take all of these items out of your diet at once. It is best to do an elimination diet whereby, you take them out one at a time. For example: if you think that tomatoes are irritating your bladder, have no tomatoes for an entire week. Then, re-introduce them in “a big way” by eating an entire tomato or drinking an entire glass of tomato juice. Within 2-4 hours of ingesting the irritant, your bladder should experience symptoms. Over the course of several months, the patient can determine which foods are problematic. Interestingly enough, about 50% of IC patients will have no sensitivity to food.

Some doctors are enamored with Bladder Training and Bladder Drills. This is simply trying to wait before you go to urinate. By gradually waiting longer between bathroom visits, it is believe that some patients can increase their functional bladder capacity. Dr. Boone has had minimal success with Bladder Training and Bladder Drills. But, with patients with minor symptoms, it certainly would be worth trying.

Other self care practices include wearing loose clothing to avoid any pressure on your abdomen or perineum. Reducing stress by using visualization, biofeedback, meditation, mild yoga, and mindfulness can be very effective. Do not smoke as smoking can worsen the painful condition and contributes greatly to the development of bladder cancer. Mild exercise, and mild stretching exercises can reduce IC symptoms. Heavy exercise may actually worsen the symptom by worsening pelvic spasms.

Many patients have received improvement in pain management by using acupuncture techniques. Dr. Boone uses Metro Acupuncture in Atlanta, GA. Make certain that your acupuncturist is familiar with treating pelvic pain.

Since IC is a chronic disease that occurs in young people, support is often necessary. If you find yourself with depression or anxiety related to your IC, please seek psychiatric assistance early for stress management.

A great resource for all patients with IC is the Interstitial Cystitis Association. They can be found on the internet and offer many forms of assistance.

(c) Martha B. Boone MD LLC. All rights reserved. Reposted with permission.

BlogTalkRadio Presents: Dr. Ken Sinervo on Endometriosis

blogtalkImage © 2014 BlogTalkRadio.com

According to WERF, almost 176 million individuals suffer from endometriosis across the globe. Many struggle with symptoms, on average, for more than a decade before they are taken seriously and given a proper diagnosis. On this week’s episode of TopDocs on BlogTalk Radio, CEC Medical Director and endometriosis expert Dr. Ken Sinervo talks about endometriosis warning signs, gold standard treatment, why the disease isn’t treated properly by more doctors, how to find resources for support and so much more. Take a listen!

http://www.blogtalkradio.com/findatopdocradio/2014/03/03/what-is-endometriosis-with-dr-ken-sinervo

Presacral Neurectomy

SinervoMDPresacral Neurectomy
“I still have pain and cramping after excision of endometriosis – what else can be done?”
By Dr. Ken Sinervo, Medical Director

While the majority of patients with pelvic pain do improve following treatment of their endometriosis with excision (approximately 85%), a small portion may continue to have pain from their uterus when having periods or from uterine irritability due to other conditions; most commonly, Adenomyosis.  The next most common condition is primary dysmenorrhea: painful cramping of the uterus without any obvious cause.

Adenomyosis is a condition in which the glands that make up the lining of the uterus (the endometrial glands) begin to grow within the wall of the uterus or within the myometrium (the middle, muscular layer of the womb).  Adenomyosis can cause heavy, crampy periods, backache, painful intercourse and/or continuous pain throughout the month. The pain is usually midline, but may rarely radiate to one or both sides.  Treatment for Adenomyosis includes birth control, Mirena® (a progesterone-coated IUD), hysterectomy in women who have completed childbearing, or Presacral Neurectomy (PSN).

A Presacral Neurectomy is a procedure that can be performed through a larger incision in the abdomen (laparotomy), or preferably, through laparoscopic approach.  At the CEC, we perform all our PSNs by laparoscopy.  During laparoscopy, a small incision is made below the belly button and typically, two smaller incisions are made at the bikini line. Any other pathology is addressed and then the Presacral Neurectomy can be performed.

The nerves coming from the uterus, which conduct pain signals, are interrupted or cut to prevent those signals from reaching the brain.  Most studies suggest that PSN helps approximately 75% of the patients who have it performed.  Most commonly, the results are immediate and last for many years.  There have been some studies that suggest the nerves can grow back, but this cobweb-like group of nerves does not usually have a sheath along which they could grow back.

The removal of the nerves is performed in the area near the sacral promontory between the major blood vessels. This surgery must be performed carefully and meticulously in order to avoid injury to these vessels and the right ureter, which delineates the lateral border of the dissection for the PSN.  We have performed hundreds of these procedures and have not had any injuries to the vessels where the presacral nerves or hypogastric plexus lies.  Few gynecologists have training in PSN, however, and subsequently, most do not perform the procedure.

As with all surgery, there are some potential side effects that could occur, but these are uncommon, occurring in less than 5-10% of patients.  They include constipation, which is usually mild and often improves over time or with dietary modification, and urinary complaints, that include urgency, which can usually be managed with timed voiding. Often, bladder urgency is improved, while about 5% may note a worsening of urgency, which can often be managed with timed voiding.

There is another procedure called the Laparoscopic Uterosacral Nerve Ablation, or LUNA, which has also been studied.  This procedure involves cutting those nerves that run in the uterosacral nerve region, which lead to the superior hypogastric plexus that is removed during a PSN.  Uterosacral ligaments that lie behind the uterus carry these nerves.  However, the majority of the nerves actually lie adjacent to the ligaments and when a LUNA is performed, the nerves may not be completely transected. Most studies do not find as good, long-term relief following LUNA, and few find any significant relief beyond 6 months.  Because of little long-term benefit, most endometriosis specialists or pelvic pain specialists do not perform LUNA any more.

Presacral Neurectomy has no impact on fertility or pregnancy and it does not affect the activity of the uterus during labor. There has been some suggestion that PSN may result in painless labor, and we usually recommend that patients mention to their obstetricians that they have had a PSN so that their cervical length can be followed to make sure they are not having premature labor they cannot feel.  The likelihood of this occurring is said to be minimal.

For questions and concerns about PSN or other procedures to treat endometriosis and its associated symptoms, please contact us.

Illuminating the Complexities Of Endometriosis

(c) Center for Gynepathology Research

VIA RED ORBIT

Famed scientist, Professor Linda Griffith, and her MIT team have been researching endometriosis for years.  Their progress may one day lead to unlocking the mysteries of this disease. See updates on their latest developments here via Red Orbit, the leading media destination for timely space, science, health and technology news.

“Solved: 20 Years of Mysterious Pain” [Ladies' Home Journal Feature]

© Copyright 2014 Ladies' Home Journal | Meredith Corporation.

© Copyright 2014 Ladies’ Home Journal | Meredith Corporation.

After 20 years of incapacitating pain, Adina finally got the answers – and help – she needed.  Grab your copy of the February 2014 issue of Ladies’ Home Journal magazine to read this multi-page endometriosis feature. Article is also available online here. Thanks to Adina and LHJ for raising awareness on this disease – and for bravely sharing her story!

Endometriosis & Social Security Benefits

Close up of Social Security Disability Claim Form with writing handBy Molly Clarke

Although endometriosis is not commonly thought of as a disability, endometriosis symptoms can severely impact a person’s life.

If you can no longer work or earn a living because of your endometriosis, you may be eligible to receive Social Security Disability benefits. These benefits can offset lost income and can help cover the expenses associated with day-to-day living.

Unfortunately, these benefits have very strict eligibility requirements and can be very difficult to qualify for. For this reason we have provided you with an overview of Social Security Disability benefits and will prepare you to begin the application process.

Defining Disability

Before delving into specifics, it is important to cover how the Social Security Administration (SSA) defines the term “disability”.  According to the SSA, a person is disabled if he or she meets the following criteria:

The person has a physical or mental condition that prevents them from engaging in Substantial Gainful Activity (SGA). In 2014, SGA is defined as earning $1,070 or more in one month; and
The person’s condition has lasted, or is expected to last, at least one year.

As you have probably noticed, this definition excludes any minor or short-term impairments. Therefore, if you have endometriosis but can still work and earn a living, you will not be eligible for disability benefits.

Social Security Disability Benefit Programs

If you meet the SSA’s standards of disability, you may be eligible for one of two programs. These are the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program.

SSDI benefits are intended to provide financial assistance to disabled workers and their eligible family members. To qualify, applicants must have worked for a significant period time and are required to have paid Social Security taxes throughout their careers. This program best suits those who have extensive employment history.

SSI benefits are intended to provide financial assistance to disabled individuals of all ages who earn very limited income.  Eligibility for SSI benefits is based on an applicant’s financial need. To qualify, you must fall within the financial limits set by the SSA. Although this program caters to all age groups, it is a particularly good fit for children, teens, or young adults who do not have the work experience to qualify for SSDI.

For more information about these two programs, visit the following page:
http://www.disability-benefits-help.org/disability-tips/difference-between-social-security-disability-insurance-ssdi-and-ssi

Medical Eligibility

To determine an applicant’s medical eligibility the SSA defers to a publication known as the Blue Book. The Blue Book is a guide of disabling conditions and symptoms that qualify a person for disability benefits.

Unfortunately, the Blue Book does not cover endometriosis.

However, a person with endometriosis may still be able to qualify under something known as a medical vocational allowance. Essentially, this means that the SSA and Disability Determination Services (DDS) will assess your age, your functional limitations, and any past employment to determine if you are capable of working. This is done using something called the Residual Functional Capacity (RFC) assessment.  The RFC is form that should be completed by you and your doctor.

If it is determined that you can work, the SSA will deny your application and offer you alternate work suggestions. If it is determined that you cannot work, the SSA will likely approve your application for disability benefits.

Preparing for the Application

All applications for disability benefits should be supplemented with supporting medical evidence. Because endometriosis does not meet a Blue Book listing, this is particularly important. You should collect copies of all relevant medical records. This may include documentation of your diagnosis, treatments, laboratory results, surgical history, and a written statement from a treating physician explaining how your condition affects your day-to-day abilities. You may also want to ask a former employer to provide you with a statement explaining your decline in work performance.

In addition to medical evidence, you will also be required to provide certain financial records and work related documents.  The SSA’s Adult Disability Checklist will provide you with a complete list of all the documents you will need to apply for disability benefits.

Submitting the Application & Receiving a Decision

Once you are ready to begin the application process you can do so online or in-person at a local Social Security office.  The actual application is made up of several different forms. It is important that the information you provide is a clear and thorough description of your condition and your limitations.

It typically takes several months to receive a decision on your initial disability application. Unfortunately, more half of all initial applications are denied. If you receive a denial, do not panic or lose hope. You have the right to appeal this decision within 60 days. Many more applicants are approved during the appeals process than after the initial application submission.

Molly Clarke is a writer for the Social Security Disability Help Blog where she works to promote disability awareness and to assist individuals throughout the Social Security Disability application process.  For more information about Social Security Disability Benefits, visit the Social Security Disability Help Blog or contact Molly Clarke at mailto:mac@ssd-help.org.

Endometriosis Awareness: Why it Matters

iStock_000011748410SmallWe would like to thank Nancy Petersen, RN for her invaluable contributions to this article. Visit Nancy’s Nook to connect with others who understand in a supportive, private setting.

No robust effort to champion public health can be complete without addressing the scourge that is endometriosis: an enigmatic disease taking immeasurable toll on every aspect of the health and well-being of approximately 176 million women and girls – and yes, even some men – from every corner of the globe (WERF). One of the most critical challenges facing the endometriosis community is a lack of factual awareness.

Though receiving little mention in historical compendiums of disease, it is without question endometriosis has negatively impacted the social, physical, emotional and sexual quality of life of those affected for centuries. The profound economic consequences and significantly impaired quality of life of those struggling with the disease contribute to the urgent need for continued research and improvement in diagnostic and treatment modalities. Focus on better clarifying pathogenesis, pain mechanisms and potential links to certain morbidities/malignancies are critically necessary. Prevention remains elusive, and many sufferers find themselves isolated and frustrated by the lack of public understanding and barriers to quality care they face.

Endometriosis remains – even today – steeped in menstrual taboos, secrecy and shame, and is epitomized in large part by extremely poor efficacy and safety profiles of commonly proffered therapies.  Prevalence corresponds to – and increases with – awareness and training of the diagnosing surgeon, but it is estimated to affect 8.5 million in North America alone (WERF 2010). The annual estimated cost burden in just the United States has reached a staggering $119 billion (D’Hooghe et. al. 2012). Most of the price tag related to endometriosis is driven by high hospitalization rates, and those who struggle with endometriosis incur almost 65% higher medical costs (Mirkin et. al. 2007).  Despite its status as a true community health crisis, misinformation remains ubiquitous, continuing to pervade the media, healthcare setting and general public – often resulting in continued long delays to effective diagnosis and treatment. The legacy of misinformation enshrouding the illness is shared in perpetuity from doctors to patients to media, from mothers to daughters, from generation to generation.  Unrelenting societal bias surrounding menstruation and pelvic pain keeps endometriosis a belittled, ignored, medicalized and marginalized illness.

Nearly a decade ago, it was estimated that total costs of care for women with chronic pelvic pain in general was substantial, with 15% of affected women missing an average of 14.8 hours of work, per month, in the United States alone – accounting for a staggering $14 billion in lost productivity each year. The total costs of potentially unnecessary medical, surgical and psychiatric care or hospitalization were further assessed at $128 million per year (Kuligowska et. al. 2004). Ten years later, little has changed, with endometriosis specifically accounting for a significant loss of productivity of 11 hours per woman per week, resulting in variable yet considerable costs by country (Nnoaham, Hummelshoj, Webster, D’Hooghe, Nardone, Nardone et al. 2011).  Endometriosis remains a top cause of chronic pelvic pain, yet delays in diagnosis across all care settings has not improved.  It is imperative that providers become aware of – and better educated on – the clinical characteristics of the disease in order to make accurate diagnoses and facilitate appropriate referrals. The enduring lack of awareness contributes greatly to the average diagnostic delay of more than a decade across multiple consults.

A leading cause of pain, sexual dysfunction, bowel, bladder and/or other organ impairment, infertility and more, endometriosis remains fraught by missed and delayed diagnoses, high treatment failures and consequent recurrence – all of which pose formidable challenges to practitioner and woman alike. The disease remains the third leading cause of gynecologic hospitalization in United States (Missmer et. al. 2004) and is considered a leading contributor to female primary and secondary infertility, prevalent in 0.5% to 5.0% in fertile and 25% to 40% of infertile women (Ozkan et. al. 2008).  Not all women with the disease experience pain (Duleba et. al. 1997), but most – particularly those with deeply infiltrating/fibrotic endometriosis – will struggle with painful symptoms (Fauconnier et. al. 2002); some even life-altering. Though classically considered a disease of women, it is important to remember that endometriosis can affect menstruators and non-menstruators alike, as well as those post-hysterectomy and post-menopausal.  Yet, by and large, we are still not, as a society, taught what is ‘normal’ and what may be indicative of a problem; ‘period taboos’ stifle the conversations we need to be having about signs and symptoms of the disease.

A shocking 72% of those living with endometriosis have reported significant disease-related affects which interfered with their daily lives (Fourquet et. al. 2010).  Early intervention and increased, accurate awareness is requisite to reduce morbidity, infertility and progressive symptomatology in patients of all ages, yet in order for those affected to make educated choices about their health pathways, we must provide them with the correct information upon which to base their healthcare decisions and confer the most timely, efficacious interventions – including referrals to tertiary treatment centers as appropriate. Failure to diagnose and treat endometriosis through a judicious, well-timed approach may have multiple tangible and intangible consequences, as pioneering excision surgeon and Founder of the Center for Endometriosis Care, Robert B. Albee, Jr. MD, addresses in his acclaimed editorial, “Is Endometriosis all in Your Head?” Nevertheless, one need only turn to the most recent article on endometriosis to see it referred to merely as ‘killer cramps’ or ‘painful periods,’ routinely treated by one-size-fits-all approaches.

Clinically, the disease is characterized by the presence of endometrial-like tissue found outside the uterus in other areas of the body.  This tissue is histologically unlike normal endometrium (Delbandi et. al. 2013), exhibiting significant differences in invasive, adhesive and proliferative behaviors as compared to its eutopic counterpart. The result of this aberrant process is a sustained, inflammatory reaction, development of painful endometriomas, marked peritoneal tension and fibrotic scarring, formation of painful adhesions and more.  There may also be impairment or distortion of anatomy (Kennedy et. al. 2005). It has been generally accepted there are three distinct types of endometriosis: superficial, ovarian endometriomata and deeply fibrotic [sometimes called infiltrating] (Carneiro et. al. 2013), each with their own particular sequela – and all with the propensity to cause pain and disruption.  Often called a “disease of theories,” definitive pathogenesis remains under debate, though endometriosis may be related to a number of hereditary, environmental, epigenetic, and menstrual characteristics and alterations, some sharing certain – though highly limited – common processes with cancer (Kokcu 2011) – however, it is imperative to understand that endometriosis is not cancer.  Popular theories include:

Sampson’s Theory’ of retrograde menstruation, 1921 – perhaps the most popular – yet flawed – of theories. Initially, Dr. John Sampson assumed that endometriosis is the result of “seedlings” from the ovaries.  Later, he proposed endometriosis results from reflux menstruation, wherein normal endometrium is “showered backwards” onto the peritoneum and ovaries, taking hold.  However, endometriosis and normal endometrium are not the same, and retrograde menstruation is a very common phenomenon among most women – yet not all will develop the disease. There are various issues with Sampson’s ideology, but the continued broadcast of his theory as the root of the disease has led to many cases of poorly treated endometriosis.

Unfortunately, this popular theory continues to complicate effective management and understanding of the disease today – a monumental consequence foretold more than two decades ago by excision pioneer David Redwine, MD. Despite the extensive works of Redwine and others who practice modern concepts to dispel Sampson’s Theory over the years, it continues to be at the foundation of many current studies and treatments – even those by well-intentioned thought leaders.

More current research has implicated HOX genes, mesenchymal stem cells and certain immunologic factors in disease origin; there is also data suggesting deep endometriosis may have lymphangiogenic growth factors, which could lead to lymphatic spread in some women (Keichel et. al. 2011).

Predating Sampson, the oldest concept assumes that endometriosis may arise in situ – or, in place – from mullerian duct remnants – female genital passages, or from metaplasia of peritoneal or ovarian tissue. Proposed as early as 1870 by anatomist Heinrich von Waldeyer as germinal epithelium of the ovary, this theory continues to be popular today and has the support of pathologists, who often refer to it as the metaplastic theory.  Endometriosis routinely found in the cul-de-sac, on the uterosacral and broad ligaments, beneath the ovarian surface, on the peritoneum, on the omentum, and within the retroperitoneal lymph nodes is often referred to as “mullerianosis.” Disease diagnosed in adolescents either prior to or shortly after menarche supports the notion of embryonic mullerian rest pathogenesis (Giudice L, Evers JLH, Healy DL. Endometriosis: Science and Practice. Chichester, West Sussex: Wiley-Blackwell; 2012).

Emerging data has also defined endometriosis as an epigenetic disorder (Guo 2009). Still more recent data is exploring endometriosis from a systems biology perspective (Griffith et. al. 2014). Still, despite the abundance of theories, no single assumption sufficiently explains the disease. It may be fair to say a composite of several mechanisms are involved; likely, it is present during fetal life and triggered by a number of factors later among those affected.

A number of sources have also asserted over the years that endometriosis is a disease caused by ‘negative emotions’ and various deep-seated “psychological components” (Griffin 2013). While there are undoubtedly various social, psychological and emotional aspects to any painful, chronic illness such as endometriosis, these are likely consequences of the disease – not the cause.  Endometriosis has its origins in very real, very complex genetic and molecular underpinnings – not an abstract ‘rejection of one’s uterus’ or inability to ‘get along’ with one’s parents, as some claim.  Contentions that endometriosis is a psychological ailment due to one’s internal failings or otherwise rooted in self-imposed, negative emotions leads only to further delayed diagnosis and ineffective treatment of the disease for countless women and girls.  This is not to say that cognitive-behavior-spiritual efforts cannot be helpful to some by perhaps facilitating ways in which they can better temporarily cope with symptoms; indeed, our own patients often feel comforted by the short prayer we offer before they undergo anesthesia and engage in a number of mind-body approaches as part of their self-care.  Renowned Nurse, educator, mentor, advocate, excision pioneer – and endometriosis patient – Nancy Petersen shares her experiences and perspective:

“I became a prolific reader of self-care, alternative care, ways of distracting the mind…all that reading, video watching, tape listening, etc. helped move my brain out of the continuous focus on the pain.  One of the books I read was Psychologist Mihaly Csikszentmihalyi’s Flow: the Psychology of Optimal Experience.  While written in a very scholastic way, I was able to pick out some key ideas, one of which is when you get into something you truly love, your life flows and distractions can be minimized in the moment…I began gardening…I found ways to adapt my life and my garden so I could still do this – without making my life and pain worse. This gave me back some power.  During this time, no one was helping me with my pain…so as my joy at digging my hands into the soil, particularly in an extremely difficult climate, began to emerge, I found that I could forget the pain for minutes, sometimes, even a half hour.  Even today…I can put the pain aside for hours at a time by finding joy. This is NOT to say the pain goes away, but rather, the brain is trained to look elsewhere for periods of time. I do not believe I would have had the strength to persist if my endometriosis had not been resolved through excision…so I am grateful for the success of [the disease] removal.”

Importantly, she maintains: “You cannot just ‘muscle through the pain.’  Sometimes that will make things worse, because you work physically beyond your tolerance, but you can distract the mind from paying attention for periods of time. Is it easy? Not at all!  It is hard work, requiring self-education, focus, practice – and sometimes, you will fail. In some cases, you may always fail! BUT trying to improve your ability to cope with pain until you can find more effective care can be empowering, and give you a sense of purpose.  Please do not interpret this to mean you can do ‘mind over matter’ where your pain is concerned.  Rather, you can build short respites, sometimes even longer. For me, it was at least something I could try. That alone was empowering.”

In our clinical setting, we are contacted by more than a thousand patients annually, many of whom relate to us that their caregivers and loved ones feel they are embellishing their accounts of pain and symptoms – yet most have previously diagnosed endometriosis. “Women and girls with endometriosis do not make up – or cause – symptoms of pelvic pain, nor do they exaggerate about the severity of pain experienced,“ says Petersen of her experiences. In fact, she noted, 75% of the women who came to the excision treatment program she founded with Dr. Redwine had been dismissed in the past by their doctors as being neurotic – yet, as in our patient population, also had biopsy proven disease. We have previously contributed additional input on this topic to other respondents, i.e. outlined herein.

En précis, a number of various emotional, mental, social, spiritual and behavioral factors can influence our health, but endometriosis is not caused by “being excessively self-critical” (Northrup 2009), nor by “insecurities, disappointment and frustrations,” or as a result of “disappointments from dad” (Weaver 2013). While various psychoimmune interactions are present in women with endometriosis, including pronounced immunological shifts manifested by imbalanced production of anti-inflammatory cytokines (among other biologic responses), these are part of the network of adaptive reactions associated with and perhaps because of the disease – not the origin of it.

In general, no particular demographic, personality trait or ethnic predilections exist in accordance with endometriosis, though family history cannot be undervalued, with studies indicating a near 10-fold increased risk in women with first-degree relatives who have the disease (Matalliotakis et al. 2008). Endometriosis often creates a constellation of symptoms, each woman or girl with her own unique combination of various indications.  Thus, it can be difficult isolate a diagnosis – particularly when we live in a culture of menstrual misinformation. This is especially true among younger patients. Still often mistakenly believed to only impact older women, in reality nearly 70% of teens with pelvic pain go on to later be diagnosed with endometriosis (Yeung, Sinervo, Winer, Albee 2011). Yet in Karen Ballard’s landmark paper from 2006, she powerfully described the stigma given to girls with menstrual pain who were mistakenly believed to simply be unable to ‘handle’ their periods. “The harsh reality is that unless they have a parent or a healthcare professional who believes in them and stays on course determined to understand the reason for the pain, young women [with endometriosis] often face dramatic changes in their lives once the symptoms become severe,” states Dr. Albee. “Somewhere along this journey, a careless doctor or healthcare provider will suggest that ‘it is all in her head’.  Over time many will begin asking themselves whether or not they are somehow making this up. Sadly, parents do not know what to think and may begin doubting their daughters as well.”  Yet in the largest prospective study of excision in teenagers to date, we demonstrated in contrast that complete excision is an important part of the management plan for pain and even eradicate the disease (Yeung, Sinervo, Winer, Albee 2011).

Still even more isolated are the few men struggling to access endometriosis diagnosis and treatment in a traditionally female-identified space.

Symptoms may mimic, and differential diagnoses include, that of interstitial cystitis, ectopic pregnancy, pelvic infection, pelvic congestion syndrome, levator ani muscle myalgia, adenomyosis, leiomyoma, ovarian remnant syndrome, uterine retroflexion, irritable bowel syndrome, acute appendicitis, peritonitis, mechanical trauma or ovarian torsion. Classic signs include severe dysmenorrhea, dyspareunia, pelvic pain at any point in cycle, gastrointestinal pain (often mistaken for ”IBS”), bladder/bowel dysfunction and more. With some cases, varied symptoms including bowel obstruction, passage of dark/tarry stool, hematuria, dysuria, dyspnea (in pleural and diaphragmatic disease) and swelling in soft tissues may present.  Stage, the degree of disease present according to rAFS/ASRM criteria, has no correlation with severity of pain or symptomatic impairment.  Though infertility is often among chief findings, severe/intractable abdominopelvic pain, anatomic distortion, adhesions and altered inflammatory response are among the vital clinical consequences.  Endometriosis has also been speculatively linked to a number of environmental, autoimmune and malignant concerns.

Early diagnosis is fundamental to effectively managing the disease, and the Endometriosis Research Center encourages adolescents to know when it’s time to seek help. “Periods – or symptoms at any time during a girl’s cycle – that are so painful they get in the way of school, work, sports, extracurricular or social life are an indication something is wrong. Don’t suffer in silence; talk to your nurses and doctors about getting diagnosed and treated,” the organization highlights in their Girl Talk® materials. Still, signs of endometriosis go frequently overlooked and underdiagnosed, resulting in inappropriate referrals and deficient treatment; lack of awareness and bias may result in delayed, mistaken and dismissive diagnoses i.e. sexually transmitted infection, conversion disorder, etc. Many clinicians, even well-meaning, remain naïve as to the potentially damaging effects endometriosis can impose on quality of life, sexual function and overall well-being of those suffering.

Indeed, data reflect that many practitioners’ knowledge is sorely limited, with direct consequences on diagnosis and care. In one investigation, 63% of GPs indicated they felt “ill at ease” in the diagnosis and follow-up of patients with endometriosis. One-half could not cite three main symptoms of the disease out of dysmenorrhea, dyspareunia, chronic pelvic pain and infertility. Only 38% indicated that they perform a clinical gynecologic examination for suspected endometriosis, and 28% recommended MRI to confirm the diagnosis (Quibel et. al. 2013).  Among nurse graduates administered a pre-test by the CEC to determine their perceived and actual disease knowledge, 100% failed to correctly identify the correct definition of endometriosis, opting instead for “cysts on the ovaries accompanied by elevated CA-125” and “an infection of the endometrium.” 60% of respondents also erroneously believed that endometriosis only affects older, menstruating women (CEC professional education course data).  These brief examples illustrate significant knowledge deficits in the healthcare setting, and further demonstrate the crucial need for improved education with a specific emphasis on disease recognition among all age groups.

In that endometriosis requires surgical diagnosis, a lack of valid markers contributes in part to the long delays in timely intervention, though proteomics and genomics are establishing the basis for future study related to such biomarker development (Giudice L, Evers JLH, Healy DL. Endometriosis: Science and Practice. Chichester, West Sussex: Wiley-Blackwell; 2012).  Physical examination and diagnostic imaging also have poor sensitivity, specificity and predictive value. While a thorough combination of history, physical examination, laboratory and diagnostic studies as indicated may be done to rule out non-endometriosis causes of pelvic pain, surgical confirmation of both endometrial glands and stroma in biopsy specimen(s) is required for diagnosis, though surgical findings of fibrosis in combination with hemosiderin-laden macrophages may be sufficient for a presumptive diagnosis in some cases (Kim, Adamson et. al. 2008). Accurate diagnosis, nevertheless, requires an experienced surgeon as varied appearances of disease may allow less obvious manifestations to be overlooked (Carneiro et. al. 2013), leading to continued under-diagnosis and/or poor outcome.  Due to the subtle appearance of some forms of endometriosis, accuracy of diagnosis is ‘operator dependent’ – that is to say, depends in large part on the ability of the surgeon to adequately identify the disease.  A thorough and systematic examination of the pelvis and abdomen is essential in all patients to identify and document all lesions, with care taken not to overlook peritoneal pockets and ovarian fossae.  It is simply not possible to triage women with chronic pelvic pain effectively on history alone; many will benefit from referral to a specialist center for careful clinical assessment and appropriate investigation (Ballard et. al. 2010).

Endometriosis may be a particularly difficult diagnostic challenge for younger patients, who often present with symptoms of disease very early on but remain dismissed by caregivers; indeed, an estimated 80% have symptoms from their first few periods. Ken Sinervo, MD MSc FRCSC ACGE, world-renowned excision surgeon and Medical Director of the Center for Endometriosis Care, discusses this failed scenario playing out time and again in healthcare settings across the globe:

“A girl mentions her symptoms year after year and is placed on different birth control after different birth control to “manage” them – yet failure of one type of birth control should indicate that her pain and symptoms are not normal…if there is failure of one birth control and/or NSAID, it should suggest the possibility of endometriosis. But instead, these patients are dismissed, ignored and marginalized. It takes years before they finally get their diagnosis and are pariahs – labeled as having endometriosis – a medical dead end.”

Nonetheless, even upon surgical diagnosis, the person with endometriosis may only be offered ineffective (and potentially harmful) drug therapy that only temporarily quells the symptoms, incomplete surgery which leaves disease behind, or worse still, counseled to undergo unnecessary hysterectomy.  Though hysterectomy has a place in treatment for select cases, endometriosis is not “cured” by the procedure. Yet, nearly half of the 600,000 hysterectomies performed in just the United States alone annually are the result of endometriosis (Centers for Disease Control, Hysterectomy Surveillance data). An ongoing, dangerous myth responsible for many needless hysterectomies, we must put an end to this misguided “treatment.”  Likewise, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue.  Still others are simply told the disease is hopeless and nothing can be done for them, leaving them in physical and emotional torment.

Most patients will need complex, multidisciplinary surgery combined with adaptation of lifestyle changes, though few are guided towards excisional surgery by their providers and remain unaware of non-invasive, adjunct options such as physical therapy, nutritional approaches and alternative therapies that may help when combined with quality surgical treatment.

When endometriosis is diagnosed at the time of the surgery, surgical destruction of disease is indicated with the objective to remove all lesions, preserve uterus and ovarian tissue and restore normal anatomy. Rarely in today’s minimally invasive surgical environs is open surgery necessary. However, although excisional surgery offers a higher success rate in treating the disease, it also requires a higher level of surgical skill and presents an increased degree of technical difficulty. To that end, surgery to debulk and excise endometriosis may be “more difficult than for cancer” (Reich, 2011). As a result, many patients receive incomplete treatment by less-experienced surgeons, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that women who have undergone repeated surgeries and had a hysterectomy still suffer. The need to improve surgical approach and/or engage in timely referrals to dedicated treatment centers – indeed, even out of their home country if necessary – is unquestionable.

Despite the increased challenges presented by meticulous and thorough dissection of disease, complete excision of endometriosis is entirely possible – including vaginal resection – and offers a significant improvement in sexual functioning, quality of life and pain, including in those symptomatic patients with deeply infiltrating nodules in the posterior fornix of the vagina. Laparoscopic Excision restores normal anatomic relationships and can treat pain, infertility or both by sharply dissecting deep fibrotic nodules which may be causing partial or complete cul-de-sac obliteration. The C02 laser can be successfully used as a precise cutting tool to excise to the roots of disease, from all areas including bowel, rectovaginal septum and other complex regions.

Conversely, superficial laser vaporization – the most commonly performed surgical intervention – destroys tissue, making microscopic evaluation impossible and does not remove all disease (Albee, Sinervo).  It is important to understand the difference between tool and method; for additional reading on this topic please visit this article. Again, in that this kind of surgery requires uncommon surgical skills and anatomical knowledge, it should be performed only in selected reference centers by those focused on treating the disease.

In general, true LAPEX significantly improves general health and psycho-emotional status. Data reflect pain, sexual function, fertility rate and quality of life are improved and associated with low complication and recurrence rates after a CO2 laser laparoscopic radical excision of endometriosis. Complete excision “prevents persistent disease” (Koh 2012); only 7-8% of the time can we document endometriosis after complete excision (Albee, Sinervo 1990-2013 data). Thus, LAPEX remains the most minimally invasive, highly cost-effective option, provided early diagnosis is conferred (Mabrouk et. al. 2011). Left un- or inadequately treated, however, endometriosis can lead to continued pain, infertility or pregnancy loss, dysfunction, in-patient stays and post-operative morbidity, reduced productivity, and ultimately increased costs and poor outcomes. This contributes to highly unnecessary increased financial burdens on patient, hospital provider, practitioner and society alike.

Sadly, even well-meaning clinicians – not just lay society and media – remain ignorant of the damaging effects the disease imposes on girl’s and women’s physical well-being, sexual function, fertility and general welfare, creating a vicious cycle of ineffective treatment. Often, this results in limited treatment access and opportunity. Says Dr. Sinervo: “We have seen patients with more than 20 procedures, who would have had a fighting chance of pain relief had they been offered excision of their endometriosis at an early age. Despite this, our average patient has been on 2-3 medical treatments (birth control, GnRH agonist/antagonist, Depo-provera, Nuvaring, progesterone, esterase inhibitors, etc. etc, etc.) and undergone 2-3 surgeries.” He continues: “Typically, patients are told they have few options: we can try one surgery and if you don’t get relief you are offered GnRH agonists (i.e. Lupron®) or other suppressive medication which has long-term side effects; suck it up and live with pain; get pregnant (who plans on getting pregnant as a teen?? A few, but most are not ready for this!); have an early hysterectomy; or worse, undergo useless surgery after useless surgery treating the disease superficially – which causes more chronic pain and leads to retroperitoneal fibrosis [scarring below the normal pelvic tissues, which may be more damaging than the endometriosis was originally. These patients are damaged much more than their original disease may have harmed them by these ineffectual treatments.”

The good news? Following excision in the hands of a skilled endoscopist, says Dr. Sinervo, “between 80-85% will have significant improvement in their pain for years; some do need hysterectomy due to other painful conditions, most likely adenomyosis. BUT, much of this could be avoided by EARLY (within a few years of symptom onset) DIAGNOSIS and EXCISION.”

In our own experiences at our COEMIG-designated Center of Excellence, we have treated nearly 4,500 patients with over 8,000 procedures from more than 43 countries around the world. We believe that the key to success is removing disease, not organs.  True disease recurrence is actually quite low if all endometriosis is thoroughly excised from all locations – including the bowel, bladder and beyond.

The Center for Endometriosis Care:
-Has performed over 8,000 total procedures across 4,000+ women and girls since 1991
-Actual recurrence of endometriosis in our population ranges between 7%-8% as indicated by follow-up procedures
-Overall likelihood of repeat surgery is less than 12% with unrelated outcomes (fibroids, adenomyosis, adhesions, etc.)

Our experiences with patients of all ages from virtually every region of the world reflect a stark contrast to the general recurrence rates; as high as 67% in some settings (Selcuk, Bozdag 2013). Others with dedicated excision-focused practices experience similar results in efficacy among their own patients.  An essential prerequisite to proper management, however, is timely recognition and referral to a tertiary care practitioner who can intervene with dedicated, specialized care.

Still, even those directed towards effective resources for quality treatment may find themselves faced with insurmountable barriers.  Failure to provide patients with timely, cross-border referrals, lack of authoritative disease education and roadblocks to effective intervention remain significant obstacles – often leading to heartbreaking consequences. Ours remains a healthcare system broken from the inside out, with policy advocating for hysterectomy, which may be needless, and expensive, ineffective medical therapy that has never been proven to confer long-term relief – yet in many settings remains first-line approach (even diagnostic) by many insurance carriers and providers alike. There are no incentives to improve quality of – or perform – specialized treatment for endometriosis; complex, complete excision is reimbursed at lower or same rate as simplistic vaporization or not covered at all. Similarly, referrals are injudiciously withheld from patients.  Often, these decisions come from bureaucrats who do not even understand the disease, let alone the need for precise treatments.  Our system further encourages superficial surgery by reimbursing and rewarding incomplete operative measures and fails to support proper surgical intervention, leading to untreated disease – which in turn leads to certain failure and need for repeated reoperation, thus incurring additional costs. Moreover, there is no support towards the creation of “disciples” due to lack of incentives, red tape restrictions and medicolegal fears; if this current climate continues, there will be no next generation of endometriosis surgeons to carry out the legacy and teachings of our surgical pioneers.

Says Petersen, “Endometriosis pain is on par with acute appendicitis. Patients develop peritoneal signs and symptoms (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, etc. etc.), something every medical and nursing student has been well educated to look for in patients. But in endometriosis patients, [it is dismissed as] “oh, it’s just her period!” If you think about the degree of pain associated with peritoneal inflammation, the LEAST we can do is be sure that the patient has adequate pain relief until disease can be resolved. What we fail to recognize in untreated endometriosis is that this disease restricts potential, sexuality, childbearing, ability to work in many cases, and generally constricts life…the lane to quality endometriosis care is cobbled with failure.”

As a society, we are failing the woman with endometriosis. Though investigations are being conducted on various aspects of the disease, much of it is redundant in nature and lacks translational benefit, in the sense that it will not prove helpful to patients in the ‘here and now.’ Many of the studies underway are directed solely towards pharmaceutical management and do not provide long-term solutions; still others fail to examine the far-reaching impact of the disease in any meaningful way. Women are still too often told the pain is in their head; others espouse ancient, mythical notions of hysterectomy, drug therapy, incomplete surgery or pregnancy as cures. Such sentiments are a monumental disservice to those suffering.  If you are not already angry about the state of affairs in endometriosis, you should be. We must create a far more participatory dialogue in women’s health and put an end to the lack of professional collaboration among healthcare providers; we must end the secrecy, isolation and pain of countless sufferers; revitalize menstrual communication; broaden the gender dialogue; and engage in key conversations. Now is the time.

Living with endometriosis truly exemplifies and embodies the social implications of negative attitudes towards menstruation and women’s health. This disease is so much more than ‘painful periods.’ It has the propensity to take away so many of a woman’s choices – when and whether to engage in a fruitful, enjoyable sex life with the partner of her choosing, when or if to pursue fertility options, whether or not to undergo invasive procedures, to choose ineffective menstrual suppression and medications which alter her cycle, and more. Truly, it is a public health crisis – but it is also a key women’s health initiative needing further promotion, understanding, research and empathy. “We aren’t encouraged to talk about endometriosis in ‘polite’ company, so patient frustration, significant diagnostic delay, high treatment failures and extremely deficient health literacy continues to obscure the stark realities of this disease,” the CEC’s Surgical Program Director Heather Guidone remarked recently.  “Likewise, endometriosis is consistently sidetracked by and mired in the fertility aspect – when what we should be focusing on is not a woman’s procreative potential, but the impact which pain has on an individual’s entire life and their resulting ability to make and enjoy their own choices – whether sexual or career or socially oriented.”

Dr. Sinervo’s call to arms:

“Do all that you can to help other women and endometriosis sufferers to put pressure on health care providers to realize the horrific impact this disease has on women’s health, professional lives, social interactions and so many other aspects of life; adolescents in particular can be quite literally scared for years if their disease is not recognized and treated effectively early on. Some spiral down such a negative path that it may not be reparable. I would rather treat all women at an early stage and avoid bowel resections, or bladder resections or hysterectomy – something I really think is attainable. More doctors should not be scared to be brave and take the chance that a young patient may have endometriosis and save them years of suffering.  I pray for early diagnosis and effective treatment for all women struggling with this disease.”

We plead for an urgent shift in priorities if we are to realize improved time to diagnosis and increased access to efficient treatment. Those focused on the disease would agree that treating early and effectively is the cornerstone to living well in the long-term – in spite of endometriosis. The conversation about the physical, conceptual and political facets of our disease is limitless – but making the difference starts with us. In our work, in our conversations, in our presence in society at large.

Endometriosis: Understanding a Complex Disease

Endometriosis can be confusing, and a lot of misinformation exists ‘out there.’ Visit this article for the latest disease updates.

http://www.centerforendometriosiscare.com/understanding-endometriosis/

Be sure to join us on our discussion board as well!

Does Douching Cause Endometriosis?

Lysol was once advertised and used as both a douche and form of birth control. Read more at The Forgotten History Blog. Image © The Forgotten History

Of course not.

In the mid-80s, a popular study was released in which the authors suggested that “douching may increase risk of endometriosis, by increasing retrograde menstruation” [Cramer DW, Wilson E, Stillman RJ, et al. The relation of endometriosis to menstrual characteristics, smoking and exercise. JAMA. 1986;255:1904-1908].  The study was among others of similar nature, all based on the same presumptions.  This has long been contradicted by multiple, more recent data, not the least of which is valid contention against the theory of retrograde menses as a cause of endometriosis.

Nearly thirty years later, despite evidence to the contrary, articles related to the disease and the practice of douching persist, even as recently as seen here in early September 2013.  Many of the claims are sourced to a variation on theme of a single citation; “Douching: Perceived Benefits but Real Hazards” by W. Steven Pray & Joshua J. Prey. That article was originally published in U.S. Pharmacist in 2004, but has been reprinted in full online at a reputable website, where it remains a top hit for string searches on endometriosis+douching. In the article, authors state (emphasis ours):

“[A]mong women who douche and have PID, there is an *increased risk of endometriosis* and upper genital tract infection.”

PID, or endometritis, is an inflammation or irritation of the lining of the uterus; it is not the same as endometriosis [National Library of Medicine].  That statement is cited to the following reference (emphasis ours):

Ness RB, Soper DE, Holley RL, et al. Douching and endometriosis: Results from the PID evaluation and clinical health (PEACH) survey. Sex Transm Dis. 2001;28:240-245.

Unfortunately, use of a single incorrect word in the reference as cited has led to repetition of the claim, with many sourcing that article’s same words.

Image: screenshot excerpts from http://www.medscape.com/viewarticle/490338. Click image to enlarge.

Screenshot excerpts from http://www.medscape.com/viewarticle/490338. Click to enlarge.

The ACTUAL study reference is (emphasis ours):

Ness RB, Soper DE, Holley RL, Peipert J, Randall H, Sweet RL, et al.  Douching and endometritis: results from the PID evaluation and clinical health (PEACH) study. Sex Transm Dis. 2001 Apr;28(4):240-5.


Specifically: that study – the PEACH trial – was designed to “examine the association between douching and PID in a large, multicenter, clinical trial of PID after adjustment for race/ethnicity.”  It examined 654 women who had signs and symptoms of PID – not endometriosis. Authors concluded that “[a]mong a predominantly black group of women with clinical PID, frequent and recent douching was associated with endometritis and upper genital tract infection.

The word “endometriosis” does not appear in that study, yet it continues to be widely cited as a source of confirmation regarding the claim that endometriosis and douching are linked. Other, even earlier studies are also sometimes cited, yet none ever claimed more than a speculative link between douching, retrograde menses and endometriosis.

Even the influential American Public Health Association cited the same claim in their public policy statement “Vaginal Douching & Adverse Health Outcomes“, though they correctly cite the title in their own references:

“A study of douching and endometriosis found that recent and frequent douching in a group of women with clinical pelvic inflammatory disease was associated with endometritis and upper genital tract infections in those women with normal or intermediate vaginal flora.”

By contrast, in a study not without its own controversy, Meaddough et al. hypothesized that in part, “douching at the time of menstruation would serve to heighten the chances of developing endometriosis.”  Instead, the authors found that “[t]he majority of cases and controls never douche. No significant differences were revealed between cases and controls regarding douching during menstruation, when not menstruating, or both;” and that “the findings ran counter to those concepts that had caused us to initiate the study.” To wit: douching did not cause endometriosis in their study subjects. [Meaddough EL, Olive DL, Gallup P, Perlin M, Kliman HJ. Sexual activity, orgasm & tampon use are associated with a decreased risk for endometriosis. Gynecol Obstet Invest. 2002;53(3):163-9]

In another related study to determine the effects of vaginal douching specifically on fertility itself [Baird, Weinberg, Voigt, Daling. Vaginal douching and reduced fertility. Am J Public Health. 1996 June; 86(6): 844–850], authors concluded there was a potential link between douching and reduced fertility; however, they maintained that “further research is needed to determine whether the relationship is casual and, if so, to what extent it is mediated by pelvic infection“; specifically noting that “few women in [the study sample] had been diagnosed with endometriosis, and douchers were *not more likely to report being diagnosed with the condition than non-douchers.*” (Emphasis ours)

While the American College of Obstetricians & Gynecologists (ACOG) recommends that women do not douche, that recommendation is largely related to infections and vaginal flora – not endometriosis. For more, click here.  Other evidence exists contrary to the claim that douching causes endometriosis.

In closing, there is no confirmed data linking vaginal douching as a cause of the disease whatsoever.

Who is Sampson, and what does he have to do with Endometriosis?

Source: Wikimedia Commons

‘Sampson’s Theory’ dates back to the early 1920s and is based on the extensive works of John Sampson, MD, an Albany gynecologist who became fascinated with the disease after encountering endometriosis in many of his patients. Despite the passage of nearly a century, it remains perhaps the most popular (yet flawed) theory of origin, leading to mistreatment of the disease.

Initially, Dr. Sampson assumed endometriosis resulted from “seedlings” from the ovaries. Later, he proposed that endometriosis actually results from backwards (“reflux” or “retrograde”) menstruation, wherein endometrium is showered onto the peritoneum and ovaries. Throughout his works, he maintained that “[f]ragments of endometrial tissue, at times, are disseminated into the venous circulation during menstruation, from the mucosa lining the uterine cavity and also from ectopic endometrial foci; [that] metastatic or embolic endometriosis arises from the implantation of these emboli in nearby veins; [and that] endometrial tissue set free by menstruation, therefore, is sometimes not only alive – but may actually continue to grow if transferred to situations favorable to its existence.”

Essentially: he considered endometriosis simply to be normal endometrial cells, which become displaced and behave abnormally in women with the disease. However, this is actually not supported by current literature [Giudice L, Evers JLH, Healy DL, ED. Endometriosis: Science & Practice. Chichester, West Sussex: Wiley-Blackwell; 2012], though the notion has persisted for almost 100 years. If Sampson’s theory is correct, endometriosis would not be possible until a girl’s first period occurs, yet there is abundant evidence to disprove this. It also fails to account for the presence of disease in males and others who have never menstruated.

Of note, when we review a woman’s videotapes of multiple previous surgeries, we rarely see disease in new areas. For example, if bladder disease is present at surgery A, it may persist through subsequent operations if it was not completely removed. On the other hand, if bladder disease is not present at surgery A, it does not just suddenly appear at surgeries B, C, D, etc. According to Sampson’s Theory, it would be reasonable to expect to see new disease in new areas all the time, growing like daisies in a field. Yet, in our surgical experiences in over 8,000 procedures across more than 4,000 patients, this simply does not happen.

It has been our personal experience across literally thousands of cases that if all endometriosis is completely removed at surgery (true excision), a woman or girl has a very low chance of recurrence. This evidence, then, would favor a metaplastic or congenital theory, because it suggests endometriosis is a finite disease. That is to say, a person has as much endometriosis as they have – whether a little or a lot – and that if it is completely excised, the disease does not just always, hopelessly “grow back” like wildfire over and over again. Also, because most of the menstrual flow involves the vagina and vulva, a logical extension of Sampson’s Theory would predict a high incidence of endometriosis in those locations – yet vaginal and vulvar endometriosis are uncommon [Albee].

Perhaps most telling, however, is the evidence that endometriosis and normal endometrium are NOT the same histologically, and we have long known that retrograde menstruation is a very common phenomenon among many women – yet not all women develop endometriosis. Studies have revealed that the eutopic and ectopic endometrial stromal cells in women with endometriosis exhibit fundamental differences in invasive, adhesive and proliferative behaviors from those who do not have the disease; thus it simply cannot be ‘normal endometrium showered back onto the pelvis’.  There are various flaws with Sampson’s ideology, but the continued propagation of his theory has led to many cases of poorly treated disease and offers an ‘excuse’ for failed therapies.

Additional theories of origin exist apart from Dr. Sampson’s, each singularly failing to account for all forms of endometriosis in all those affected. Researchers do agree, however, that endometriosis is polygenic and multifactorial, though the exact pathogenic mechanism(s) are still unclear. However, without question: there are many factors contributing to disease pathophysiology and pathogenesis outside of Sampson’s ‘backflow’ notion, and although his work in endometriosis was important, it should not be the guiding concept by which today’s treatments are rendered.

Those are interested in this topic may also wish to read this article by Canadian Scientist and Researcher, Philippa Bridge-Cook, PhD.

The 12th World Congress on Endometriosis


©1998 – 2013 World Endometriosis Society

The 12th World Congress on Endometriosis: “Adding pieces to the puzzle of endometriosis” will be held 30 April – 3 May 2014 in São Paulo, Brazil!  To learn more about WCE2014 and register to attend, visit:

http://endometriosis.ca/world-congress/wce2014

Nutrition for Endometriosis

By Erin Luyendyk, RHN

FoodbasketA comprehensive, integrative approach to endometriosis with a variety of highly trained health professionals appears to offer the most effective care.  Expert excision surgery, pelvic floor physical therapy and dietary therapy among other integrative treatments all play very important roles in the holistic care of endometriosis patients.  While diet is neither the cause of nor the cure for endometriosis, it often makes a significant impact in the way we feel.  Today we will explore the impact our food choices have on how we feel and some of the most common food triggers among endometriosis patients.

It is important to remember that dietary change isn’t an overnight process and that everyone’s needs are different.  One patient’s food triggers will be different from another’s and other food sensitivities exist that are not discussed in this article.  While it may take a little trial and error, some time and some effort, many find that eating an overall anti-inflammatory diet while avoiding their personal food triggers makes a significant improvement in their quality of life.  Symptoms of other conditions that endometriosis patients often additionally suffer from such as interstitial cystitis, polycystic ovarian syndrome and irritable bowel syndrome also tend to improve with dietary therapy targeted specifically to each disorder.

Most people are aware that inflammation causes a variety of symptoms, most noticeably significant pain.  What many people aren’t aware of is that what we eat can directly increase or decrease inflammation and associated symptoms depending on our food choices.  This is excellent news as it gives us the opportunity to take back some control of our health and pain, something that all too many endometriosis patients feel is out of their hands.

But which foods are inflammatory, increase pain and increase the risk of countless inflammatory lifestyle diseases?  Processed, refined and synthetic foods are the number one food category to avoid.  Packaged and prepared meals and snacks, soft drinks, fried foods, smoked and/or processed meats, breakfast cereals, baked goods, white flour and refined grains, sugar/corn syrup, soy, artificial sweeteners, poor quality fats (more on this later) and a variety of additives, colours and chemicals all contribute to the inflammatory and toxic burden on the body.  Avoiding these foods and sticking with fresh, unprocessed ingredients (organic whenever possible) with a strong emphasis on fresh produce forms the backbone of any anti-inflammatory diet.

Gluten is a protein found in glutinous grains (including wheat, rye, barley, spelt, kamut, triticale, graham, bulgur and controversially oats) that many people with endometriosis have difficulty with. In fact, a recent study found that 75% of the endometriosis patients studied had reduced pain while following a gluten-free diet.1 It can be very difficult to digest, leading to increased bowel symptoms, bloating and increased pain.  Some people find the problem is specifically wheat and tolerate other glutinous grains just fine.  The key to going gluten-free is to choose foods that are naturally gluten-free, like brown and wild rice, quinoa, millet, amaranth, legumes, sweet potatoes and squash instead of processed gluten-free bread, pasta, baked goods, breakfast cereals, bars and crackers which are typically highly refined and fall into the inflammatory category.  Also be aware that many condiments contain hidden gluten, so read labels or better still make your own salad dressings, sauces, salsas and marinades to avoid gluten and other inflammatory ingredients.

Soy has exploded in popularity over the last fifteen years or so.  Although soy is often built up to be a powerful super food, in reality it does not live up to the media hype.  Contrary to popular belief, soy really hasn’t been a staple of the human diet for all that long.  It is a very tough plant that was long thought to be inedible and traditionally was only consumed in fermented forms such as miso, tempeh, natto and Nama Shoyu in condiment sized portions.  Raw, unfermented and highly processed soy is extremely difficult to digest and quite inflammatory.  Furthermore it contains phytic acid, an “anti-nutrient” that inhibits absorption of a variety of essential minerals and acts as a goitrogen interfering with thyroid function.  Soy is also high in isoflavones, a natural type of plant estrogen that can increase estrogen levels in humans.  This is particularly concerning for many endometriosis patients as it can be a potential dietary trigger of pain.

Modern soy is one of the most heavily sprayed crops on the planet and is almost always genetically modified.  In fact as soon as GM soy hit the mass processed food market in the hidden in processed foods around 1997 severe peanut allergies in children jumped 200% in five years.2 A recent study demonstrated that pigs fed a diet of genetically modified soy had an average of 25% heavier uterine weight and were 2.6 times more likely to have severe stomach inflammation than pigs not fed genetically altered foods.  These pigs- both female and male- were also found to have reduced fertility.3

This type of soy is commonly listed as soy protein, soy isolate, defatted soy flour, soy lecithin and soy oil,  in a variety of dairy substitutes and meat analogues, tofu, soy sauce/tamari, condiments, packaged and premade meals, side dishes, soups and snacks, baked goods, crackers, protein supplements and meal replacements, baby formula and desserts.  If one tolerates some soy, I recommend sticking to occasional condiment-sized servings of 100% certified organic and non-GMO products that are traditionally fermented such as miso, natto, tempeh, tamari and Nama Shoyu.

Dairy, similar to soy can be quite inflammatory, can contain significant amounts of hormones and can be quite difficult to digest for many leading to an exacerbation of symptoms. Lactose is a sugar found in milk that most teens and adults have difficulty breaking down, which leads to pain, bloating and other GI symptoms when bacteria in the intestine start eating the undigested sugar and fermenting.  Casein is a protein found in milk which can trigger severe allergic reactions or more commonly intolerance symptoms similar to those of lactose intolerance.  An unhappy bowel can irritate endometriosis lesions on the bowel wall itself or elsewhere in the pelvis leading to increased pain, bowel symptoms and nausea.

Unfortunately much like soy, dairy has become increasingly adulterated over the years.  Cows are routinely fed antibiotics which in addition to the growing problem of antibiotic resistance can over time lead to IBS-like symptoms.  In addition, dairy cattle are often injected with natural and genetically modified growth hormones.  Some of these hormones elevate IGF-1 levels causing cells (including potentially some endometriosis cells) to grow and become more active.4 This is in addition to the cow’s own natural hormones, increasing the body’s overall estrogen level and potentially increasing pain and symptoms.  Regularly consuming low fat and fat-free dairy products has also been strongly associated with ovulatory infertility.5

Choosing non-dairy alternatives such as unsweetened almond, coconut or rice milk, yogurt and raw nut cheeses are good options.  Some people tolerate some organic grass-fed goat or sheep’s dairy (particularly unsweetened low fat yogurt or other fermented products), so consider giving it a try if cow’s dairy is a problem for you.  It is important to ensure one is getting enough calcium when eliminating dairy, so adding more high calcium non-dairy foods such as green leafy vegetables, blackstrap molasses, raw almonds, BPA-free canned wild salmon with the bones, raw sesame seeds/tahini and broccoli and possibly a quality calcium and magnesium supplement to your daily diet.

Dietary fats and oils are probably the greatest area of confusion when it comes to nutrition.  There is so much misinformation out there and yet getting the right fats and oils in the right balance is critical in the management of inflammation and overall health.  The right oils will keep your cell membranes flexible, your hormones balanced and help to keep inflammatory hormones and substances under control.

Unfortunately the most commonly consumed fats and oils are highly refined, highly processed, profoundly damaged and extremely inflammatory.  Yes, those “healthy” vegetable oils such as canola, safflower, sunflower, corn, cottonseed, and soy oils and “heart healthy” non-hydrogenated spreads are highly inflammatory, increase pain, reduce fertility and increase your risk of death due to heart disease, cancer and other serious diseases.6  During processing these exceedingly fragile oils are exposed to excessive heat, light and air, many chemicals to degum, deodorize and bleach the oil and then packaged in large clear plastic bottles where they continue to degrade under the light.

To add insult to injury, because they are so processed many use these oils to cook over high heat, damaging the oil even more.  Furthermore these oils generally contain far more of the often inflammatory omega 6 than they do of the anti-inflammatory omega 37 which increases systemic inflammation and pain.  Trans fats, such as hydrogenated or partially hydrogenated vegetable oils, margarine, shortening and some frying oils should also be avoided completely.

What to eat instead?  Choose more oils and foods higher in omega 3; first cold pressed raw organic flax, hemp, chia, walnut or pumpkin seed oils in small dark glass tightly closed bottles that can be used quickly and store in the fridge.  Use these oils in only cold applications such as salad dressings, dips or added to smoothies.  Raw ground chia, flax, whole hemp hearts, walnuts and pumpkin seeds can be added to salads, raw nut butters, smoothies, trail mix or on top of main dishes.  Wild salmon, herring, sardines, anchovies, Atlantic mackerel and some sea vegetables are excellent sources of omega 3.

First cold pressed extra virgin olive or avocado oil stored in small dark glass bottles in a cool dark place that can be used quickly are great in cold applications and in cooking up to medium-low heat.  Saturated fats such as first cold pressed extra virgin pure coconut oil, organic grass-fed butter or ghee can be used in moderation and are the most heat stable of all the fats and oils so they are a good choice for cooking.  A high quality daily fish oil supplement (such as Nordic Naturals or Nutritional Fundamentals of Health) may be considered.

Red meat is a problem for some of the same reasons as dairy.  It is also can be quite inflammatory, difficult to digest and slows digestion time leading to bowel symptoms.  Livestock in North America are typically fed an unnatural diet of corn, other grains or “cattle feed” instead of their natural grass diet which increases the amount of omega 6 relative to omega 3 in the meat significantly.  They are also typically sedentary which increases the amount of fat and potentially hormones in the meat.  If you tolerate some red meat in moderation, choose lean cuts of certified organic, free range and grass-fed meat.

Soluble fibre is important to keep food moving through the bowel smoothly and helping the body to naturally expel excess hormones instead of reabsorbing them to be continuously recycled in the body.  Unlike insoluble fibre, soluble fibre dissolves into a gel in the GI tract to keep food moving without excess bulk or scratchy irritation which can increase pain.  Foods such as apples, pears, plums, legumes (beans, lentils and peas), whole oats, okra, citrus fruits, ground raw chia and flax seeds and psyllium husk powder are good sources of soluble fibre.

Alcohol is extremely inflammatory, hard on the liver and is an extremely common dietary trigger of pain.  Consider eliminating alcohol altogether or only indulging in a drink on special occasions.  Caffeine also often increases pain as well as PMS symptoms, although some women can tolerate small amounts of caffeine such as in green or white tea or a small cup of coffee.  Try eliminating coffee, soft drinks, energy drinks, black tea, chocolate and other sources of caffeine for a month or two and see how you feel.

So how does one transition to an anti-inflammatory diet and incorporate all of these habits into their daily life?  The first step is to start working with a qualified nutritionist who has a strong understanding of endometriosis and will guide and support you through the process.  This helps to ensure that you are changing your diet in a healthy way and getting all of the nutrients you need to be healthy while providing an excellent resource for alternatives and meal ideas.  It is very important to remember that this is a process that will take some time, effort and commitment and it won’t happen overnight.  But that being said, diet changes often prove to be a very important component in many endometriosis patients’ overall care.  They feel much better in terms of endometriosis symptoms, energy and overall well-being; results that are very much worth the effort.

© 2013 Nutritionista. Erin Luyendyk RHN. All rights reserved

*This article is intended as general educational material only and should not be considered as medical or nutritional advice.  Please speak with your personal physician and nutritionist before implementing any nutrition, supplement or exercise program to ensure its safety and suitability for your specific individual situation.

Erin Luyendyk, RHN is a Registered Holistic Nutritionist, Raw Chef and founder of Nutritionista, inspiring women around the world to nourish themselves sexy.  She specializes in whole food, anti-inflammatory nutrition in women’s health, weight loss, metabolic syndrome and beauty foods.  For more information please visit www.thenutritionista.ca.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Citations

1 Marziali M, Venza M, Lazzaro S, Lazzaro A, Micossi C, Stolfi VM.  Gluten-free diet: a new strategy for management of painful endometriosis related symptoms?  Minerva Chir. 2012 Dec;67(6):499-504.

2 Burks AW.  Peanut allergy. Lancet. 2008 May 3;371(9623):1538-46.

3 Carman JA, Vlieger HR, Ver Steeg LJ, Sneller VE, Robinson GW, Clinch-Jones CA et al.  2013.  A long-term toxicology study on pigs fed a combined genetically modified (GM) soy and GM maize diet.  Journal of Organic Systems 8(1):  38-54.

4 Kim JG, Suh CS, Kim SH, Choi YM, Moon SY, Lee JY.  Insulin-like growth factors (IGFs), IGF-binding proteins (IGFBPs), and IGFBP-3 protease activity in the peritoneal fluid of patients with and without endometriosis.  Fertil Steril. 2000 May;73(5):996-1000.

5 Chavarro JE, Rich-Edwards JW, Rosner BA, Willett WC.  Diet and lifestyle in the prevention of ovulatory disorder infertility.  Obstet Gynecol. 2007 Nov;110(5):1050-8

6 Ramsden CE, Zamora D, Leelarthaepin B, Majchrzak-Hong SF, Faurot KR, Suchindran CM, Ringel A et al.  Use of dietary linoleic acid for secondary prevention of coronary heart disease and death: evaluation of recovered data from the Sydney Diet Heart Study and updated meta-analysis.  BMJ. 2013 Feb 4;346:e8707.

7 Rahbar N, Asgharzadeh N, Ghorbani R.  Effect of omega-3 fatty acids on intensity of primary dysmenorrhea.  Int J Gynaecol Obstet. 2012 Apr;117(1):45-7.

The Significance of Pelvic Floor Muscle Dysfunction

logo_HuntBy Jennifer B. Hunt, PT

Why is it important to address Pelvic Floor Muscle Dysfunction?

The “pelvic floor muscles” are a group of muscles that are arranged within the pelvis like a sling or hammock, connecting the front, back, and sides of the pelvis and sacrum.  The main function of these muscles is to provide support to the organs of the pelvis, including the bladder, uterus or prostate, and rectum.  They also make up part of the urethra, rectum, and vagina.

These muscles must be able to effectively coordinate contraction and relaxation to allow normal functioning of the bowel and bladder.  Moreover, the ability of these muscles to relax is essential to allow for normal urination, bowel movements, and sexual intercourse.

The term “Pelvic Floor Dysfunction,” or PFD, refers to these muscles when they are too relaxed or when they have too much tension.  Abnormal muscle tone can affect urinary and bowel functions, sexual function, and can cause pain.

PFD may be associated with some or all of the following symptoms:

  • urinary urgency, frequency, hesitancy, stopping and starting the stream of urine, painful urination, or inability to empty the bladder
  • constipation, straining, pain with bowel movements
  • unexplained lower back pain or pain in the pelvic region, genital area, or rectum
  • pain during or after intercourse, orgasm, or sexual stimulation
  • uncoordinated muscle contractions causing the pelvic floor muscles to spasm

PFD often accompanies medical conditions that involve pain in the pelvic region, such as Interstitial Cystitis, Endometriosis, Vulvodynia, and Pudendal Neuralgia.

In each of these conditions, abnormal muscle tension develops as a protective response to pain.  This abnormal guarding of the pelvic floor muscles becomes a secondary source of pain and can also lead to painful intercourse.  For this reason, persons with pelvic pain often are provided significant relief of symptoms by addressing the dysfunction found in the muscles of the pelvic floor.

Before appropriate physical therapy treatment may be rendered, an evaluation of the pelvic region must be performed by a physical therapist trained in pelvic rehabilitation to determine the condition of these muscles.  Once the evaluation is completed, the therapist will recommend an appropriate treatment plan to address the dysfunction that is found.

Possible treatments include:

  • Manual therapy:  Various methods of manipulating the muscles and connective tissues in the abdomen and pelvic region are used to promote relaxation in muscles that hold tension and restore normal mobility in other tissues that are restricted.
  • Modalities such as electrical stimulation, ultrasound, cold laser, ice, heat, and TENS unit application are sometimes helpful to address pain associated with chronic pelvic pain conditions.
  • Education:  Instruction in self manual therapy and/or teaching a partner how to perform manual therapy to the tissues externally or internally is often very helpful for maintaining relief of symptoms.
  • Stress management/relaxation techniques/deep breathing exercises:  Symptoms of pelvic pain are often exacerbated by stress; therefore, stress-reducing techniques can be very helpful.
  • Biofeedback is a tool that can be helpful in training the muscles to relax or can assist with strengthening exercises when appropriate.

Are “Kegels” always appropriate?

In pelvic pain conditions it is often necessary to avoid exercises that can promote abnormal pelvic floor muscle tension.  Kegel exercises, or active contraction of the pelvic floor muscles, are often NOT appropriate for pelvic pain patients, as these exercises sometimes aggravate the symptoms.  The types of exercise that are appropriate can be determined by the physical therapist who assesses the muscle tone upon evaluation.

How does one know if her pelvic pain may be improved by physical therapy?

The patient must be evaluated by a physical therapist who specializes in pelvic floor muscle rehabilitation.  By restoring function of the pelvic floor muscles, symptoms may be diminished, and quality of life may be dramatically improved.

For more information, please contact:
Jennifer B. Hunt, PT
Provenance Rehabilitation
11975 Morris Rd, Suite 310A
Alpharetta, GA  30005
Office:  678-819-8720   Fax:  678-819-8721
www.provenancerehab.com

Was my Surgery a Failure?

SinervoMDBe sure to also check out “Understanding a Complex Disease” for more background on endometriosis.

There is perhaps nothing more frustrating than feeling like your ‘best-hope-for-relief-surgery’ didn’t work. It’s a tough conversation, but let’s dive in and review some points of this multi-faceted, complex issue that may occur – even following excision in the hands of a “specialist.”

To begin, we must first acknowledge that skill of the surgeon does matter and may constitute, in part, true failure. Disease may likely have been left behind for whatever various reason, and can continue to cause pain/symptoms – or, endometriosis was otherwise inadequately excised. In still other cases, it was actually not excised at all, but vaporized, fulgurated or otherwise superficially removed in part. It is important to discuss with your surgeon what exactly was done, and why.

In some very select and specific cases – though highly uncommon – it may also be more prudent – read: safer for the patient – for her surgeon to leave an area of endometriosis intact because the risks far outweigh the benefits of removal in terms of potential surgical complications/risks.  Again, this is very uncommon, however, as generally speaking, all endometriosis can be safely and successfully excised from all areas.  Nonetheless, outcome is often operator-dependant.

What defines an ‘expert operator’?  While there is no magic number of procedures or hours required to be considered highly proficient (though “10,000 hours” proponent Malcolm Gladwell may disagree), it is universally accepted that several hundred cases of successful surgery constitutes a certain level of expertise. For example, a New England Journal of Medicine editorial by a physician and a health policy analyst noted that ‘surgeons must do at least 150 procedures to become adept at using the robotic system.’  At the CEC, our surgeons have treated almost 5,000 patients through a combined 8,000+ procedures.

All told, a strong possibility still exists that so-called surgical ‘failure’ is not actually failure at all. Recurrence/persistence of disease can occur, though at a very low percentage rate, even after sharp and meticulous dissection in the most skilled of hands – including ours. Interestingly, true recurrence may actually be higher in patients with lower stage disease (Koh 2012, et. al.) vs. advanced stages 3/4. It has long been noted in the literature as well that some forms of disease in younger women is more ‘aggressive’ with a ‘higher recurrence rate’ and might even be a different form of endometriosis altogether (Dovey 2010, et. al.).   This, then, does not imply lack of meticulous skill attempted on the part of the surgeon (who is, first and foremost, human, after all!) – but rather, can be attributed to the complex, insidious nature of this disease.

Next, it is important to recognize that refractory pain may not even be related to endometriosis at all.  Secondary pathology in our own and similar center’s reoperative populations includes conditions ranging from adenomyosis, fibroids, non-endometrioma cysts or adhesions to interstitial cystitis, pudendal neuralgia, congenital defects, pelvic floor dysfunction, pelvic congestion syndrome, congenital defects previously undiscovered, vulvodynia, infection, unrelated bowel disease or other co-existing disorders that may contribute to the patient’s post-excision pain. Each needs to be accurately diagnosed and treated accordingly.  To a hammer, everything looks like a nail…meaning, not everything is actually endometriosis-related symptomology. hammerThus, we must be cautious in automatically assuming the disease is the cause of continuing pain without being thorough in investigation, up to and including re-operative intervention to diagnose and treat any pathology if necessary/appropriate when non-invasive measures fail.

To that end, a multidisciplinary approach such as we practice at the CEC (we incorporate a treatment team from gynecologic endoscopy, colorectal surgery, urology, PT in aftercare, nutritionists as appropriate, and various others specific to the invididual’s own case) is key to ensuring effective treatment and maximum outcome, as well as reducing risks to the patient.  If endometriosis is assumed – or confirmed at re-operation – it must be treated, along with any other pathology that may be found.

16_9210501799.jpgNext, as uncomfortable as it may be to talk about, it bears stating that realistic expectations are also imperative on part of both surgeon and patient alike.  It is unreasonable to assume that years and years of prior, unchecked disease process and/or effects from multiple, previous failed interventions will be 100% reversed and restored completely in one surgery (though indeed, quality surgery can and does drastically restore overall health, improve fertility and reduce/eliminate symptoms).  Anyone who implies otherwise to their patients or is not honest about the systemic, far-reaching effects of endometriosis does not truly understand this disease – or the technical/increased degree of difficulty of the procedures required to adequately treat itThis is why early and effective intervention is so critical to the proper care of those with the disease quality, timely intervention at symptom onset CAN prevent long-term complications and should be the goal of any treatment plan.

So-called permanent/universal “cure” is not as critical as what a woman’s *individual* outcome is on a PERSONAL level.  Remember as well that it is not likely to see 1,000 positive responses about a potential treatment or experience on the Internet, but easily, 1,000 negative ones – you’re going to see those who are vocal because they are still experiencing symptoms. Part of being realistic, then, is not comparing your own situation to others, as endometriosis is a highly subjective experience though many commonalities exist.

All things considered, the literature – and importantly, our own experiences across thousands of global patients, in every stage of disease, from 43 countries – has long supported excision as the gold standard of surgical intervention for endometriosis; indeed, complete excision is a fertility-sparing procedure which prevents persistent disease in many cases and relieves multiple sequelae e.g. painful sex, pelvic pain, infertility, etc.  In our specific population, only 7% of the time can we document endometriosis after complete excision (Albee, Sinervo). How do we know that? Because we actively track our patients – some even nearly 25 years out – and maintain one of the largest databases on post-excision follow-up including reoperation of our patients both by us and others.  Similar centers do the same and reflect, in general, comparable rates. The rate of recurrence post-vaporization, med suppression, and other superficial treatments on the other hand ranges between 40-100%, often in the very first year post-treatment. Likewise, probability of pain after hysterectomy hovers around 15% and risk of pain worsening ranges between 3%-5% on average (Vercellini et. al.). There is no question, then, that excision remains – as it has for decades – the optimal treatment for this disease.

Although there is no absolute guaranteed ‘cure’ per se, proper surgery in the hands of an advanced endoscopist who has dedicated his or her life to treating this disease can confer maximum relief. In our Center, we also employ a multidisciplinary approach to support all of our patient’s needs – and follow-up with all, whether it be 6 months or 25 years later.

Through use of gold standard techniques, early intervention, active patient engagement and an honest and open approach, we can indeed maximize outcomes over this disease. Patient-centric care using the best tools in our armamentarium is critical and has helped – and will continue to help – many who struggle.  If pain persists or recurs even after excision with a sub-specialist in the disease, it’s important to tell your surgeon and afford them the opportunity and benefit of trying to continue to help you. They cannot treat what they do not know about, so be open to dialogue with your care provider. If they are not receptive to continuing care – find one who will help.  Remember…you don’t have to settle for inadequate care, no matter what – other options always exist.

Ultimately, endometriosis facilitates a partnership between the woman and her provider(s); educated decision-making should not only be encouraged, but required by all those treating patients. Above all else – never, ever ‘blame the patient,’ but work together to find the answers.

The CEC works so hard to educate not only patients of every age group, but also our fellow providers – school nurses/nursing professionals, other healthcare providers, researchers, legislators, media and all those who have a hand in changing the landscape of this disease for the better.  By working together to ensure accurate, authoritative information and training, we can find the answers to end this disease.  What can we do to help YOU?

Ending Endometriosis: a Documentary by Rebekah Hoyt

Ending Endometriosis by Rebekah Hoyt

“I’ve always been one to have really horrible periods, even from the time they started.  I would have the most intense cramping and horrible pain – I figured I was one of those “unlucky ones” who just had it bad.”  Read more and watch Rebekah’s documentary here:

http://www.rebekahhoyt.com/blog/2011/12/9/endometriosis-documentary.html

“If Menstrual Health is the Neglected House on the Block…then Endometriosis is the Basement”

Gloria Steinem photo by Evelina Sterling, PhD, MPH

Gloria Steinem photo by Evelina Sterling, PhD, MPH

The CEC was honored to present at the Society for Menstrual Cycle Research’s 20th Biennial Congress in early June, an event featuring some of the world’s leading professionals including physicians, nurses, psychologists, sociologists, anthropologists, women’s and gender studies scholars and many others (not the least of whom was Honoree Gloria Steinem).

Tasked with identifying public health challenges and barriers to including menstrual cycle disruption/disorders as key components of women’s health, and explore ways by which to overcome these critical gaps in pelvic health, we think we drove the point home as to how largely ignored endometriosis is:

“If menstrual health is the neglected house on the block, then endometriosis is the basement.”

To review a short summary of our plenary lecture, please click here to visit the Society for Menstrual Cycle Research.

Ovarian Remnant Syndrome

menstrual-crampsOvarian Remnant Syndrome
(Or…when you have had your ovaries removed and they find one on ultrasound)

By Ken Sinervo, MD, MSc, FRCSC, ACGE, Medical Director

Another potential source of pain in women that have had a hysterectomy with removal of one or both ovaries is a condition called Ovarian Remnant Syndrome.  Typically, the patient presents with lower quadrant pain that localizes to one side or the other.  The pain may be quite severe.  It may resolve spontaneously or persist or be cyclical recurring monthly.

The key to diagnosis is seeing a mass on ultrasound, CT scan or MRI which is cystic and localizes to the areas of the ovary.  Patients will often say they can’t have a cyst or ovarian tissue since they have had their ovaries removed.  The doctor will often echo similar sentiments.  When a mass consistent with an ovarian cyst is seen post-oophorectomy (removal of the ovary), certain tests may help to confirm that this is ovarian in nature.  If you are taking hormone replacement, it could be stopped for a month and if there are no hot flashes or other symptoms of menopause, it is suggestive that the cyst is related to an ovarian remnant.

You can also have your estrogen levels tested when not on hormone replacement therapy and your estrogen levels may be higher than normal for someone not on hormone replacement therapy (typically >30 pg/mL if there is ovarian tissue present).  As well, a blood test called FSH or follicle stimulating hormone will also be lower than normal for a menopausal woman.  FSH is usually greater than 30 when you are in menopause (your brain is trying to stimulate the ovaries but does not see the rise in estrogen that is seen when ovaries are present, so it produces more FSH to stimulate the ovaries to try to get the estrogen elevated).  When you are young and your ovaries are intact and fertility is viable, the FSH level is usually less than 10.  So, anyone who has had a hysterectomy with removal of both ovaries should have a level of FSH higher than 30.  If it is less than 30, you likely have an ovarian remnant.

How do ovarian remnants occur?  New ovarian tissue does not grow.  Ovarian remnants occur when the ovary is bluntly dissected from the pelvic sidewall when it is adhered or scarred down to the pelvic sidewall.  This scarring is usually the result of endometriosis which causes inflammation, and the result of that inflammation is the formation of adhesions.  These adhesions can often be very dense and difficult to separate the ovary from the pelvic sidewall or bowel to which it may be scarred to.  Often, the gynecologist will use instruments or their hands if done through a large incision, but they are leaving small portions of the ovary on the pelvic sidewall.  This little piece of ovarian tissue can generate its own blood supply and respond like a normal ovary would to stimulation by FSH and produce hormones and create ovarian cysts.  We prevent the occurrence of ovarian remnants by carefully removing the tissue on the pelvic sidewall as well, since there is usually endo on that pelvic sidewall as well and we want to minimize the recurrence of disease.  Most doctors do not do this and the results are not only the ovarian remnant, but also endometriosis in the area as well.  Pelvic pain will result months or even years later.

We have treated close to one hundred women with ovarian remnants.  All have been successfully managed laparoscopically with no recurrence of the ovarian remnants.  We have never had an ovarian remnant occur in a patient that we have removed an ovary or performed a hysterectomy with removal of one or both ovaries.  We did have one patient that had a second remnant in a different location, since ovarian tissue was left in different areas of the pelvis and only one of the remnants was activated during the initial surgery.

Ovarian remnant surgery can be quite challenging and if your doctor has not performed any of these procedures, there is increased risk of complications to the patient, and increased likelihood of recurrent ovarian remnants.  We had one patient that had two additional surgeries to the remnant before having surgery at the CEC to finally completely remove the remnant.  The reason that these surgeries are difficult has to do with the fact that there can be a lot of scarring and adhesions which makes dissection difficult, and the bowel may also be densely adhered to the remnant and many gynecologists are reluctant to dissect these dense adhesions of the bowel due to the risk of injury to the bowel.  We routinely perform delicate dissections of the bowel every week because of the severe nature of the endometriosis that we see, including patients with stage IV endometriosis with bowel involvement.  This unique skill set allows us to comfortably restore anatomy to normal and dissect the remnants off the bowel.

Another factor that makes these difficult for the average surgeon is that the remnant is usually scarred to the pelvic sidewall, and the ureter and large pelvic vessels run in this area.  Many gynecologists are reluctant to treat these due to concern about injury to these structures.  Endometriosis often affects the area under the ovary or the pelvic sidewall (in fact between 30-40% of patients have endo in these locations).  We excise endo in these areas almost daily, and routinely dissect out the ureter and pelvic vessels so that all the disease can be safely and successfully removed.  This practice of working in the retroperitoneal space (area occupied by the ureters and pelvic vessels) allows us to comfortably dissect ovarian remnants from these delicate structures with minimal risk.

If you have recurrent pelvic pain after hysterectomy for your endometriosis or other conditions in which the ovaries may have been scarred to other structures, it would be worthwhile to have an ultrasound and blood work (estrogen and FSH levels) to rule out ovarian remnant.  If you have a history of endometriosis and have recurrent pain following a hysterectomy and do not have a possible remnant, there is always the possibility of persistent endometriosis from under-treatment of that endometriosis at the time of your hysterectomy.

If you have pelvic pain, we can likely help. Please visit us online to determine how to obtain your free records review and ask questions. You’re not alone!

Is it Endometriosis or IBS?

Is it Endometriosis or IBS?
sinervoefaOften, painful and distressing GI symptoms are dismissed and referred to as “IBS.” In fact, endometriosis may be responsible.  CEC’s Medical Director and expert endometriosis surgeon, Dr. Ken Sinervo, presents on this complex issue at the Annual EFA symposium at Lenox Hill Hospital in NYC [March '13]. http://www.endofound.org/video/When-IBS-is-Really-Endometriosis-on-the-Bowel-Ken-Sinervo-MD/355

Readers may also be interested in:
http://www.centerforendo.com/articles/bowel.htm

Check back frequently for updates and the launch of the CEC’s forthcoming, IRB-approved endometriosis & bowel study.

CEC Celebrates 2013 Women’s Health Week

National Women’s Health Week 2013

 


NATIONAL WOMEN’S HEALTH WEEK 2013

The CEC is delighted to remain an annual supporter of this important endeavor each year. Learn more at http://www.redorbit.com/news/health/1112845609/national-womens-health-week-2013-051413/.

Here are some ways you can get involved in or benefit from the 2013 events:

Free Endometriosis Evaluation & Consult « Events « National Women’s Health Week

Find events in your area « National Women’s Health Week

Health resources « National Women’s Health Week

Interactive screening chart for women « Health resources « National Women’s Health Week

 

CEC Continues to Bring Nursing Education to the Forefront


Image © OUBOCESNY

The CEC is very pleased to maintain a robust, ongoing professional education program, including our nursing and allied health efforts.  Most recently , we were extremely pleased to expand our Nursing Education Lecture Series to the New York State Board of Cooperative Education’s Nursing Classes.

Endometriosis Diagnosis & Management: Making a Positive Difference in the Lives of Your Patients” is designed for community, school and clinic nursing professionals, who are on the ‘front lines’ – and as such, are often the first to detect symptoms in the girls and women they treat.  Subsequently, in an effort to assist healthcare students and tomorrow’s professionals to provide optimal care for women and girls with endometriosis, our presentation series reviews timely disease recognition and impact, identifies research priorities, evaluates modern concepts and emphasizes appropriate strategies to optimize patient outcome.

We are very thankful to the schools, administrators and educators who continuously work with us to bring timely disease education to their communities, so that the next generation of professionals will be able to facilitate quality of care and manage treatments effectively to improve quality of life, reduce pain, and prevent further progression of disease in their own critical community-based work.

If you would like the CEC to present to students or professionals in your area, please contact us.

Finding her Voice: Kathryn’s Letter

Acute pain in a woman stomachFrom the author: I would like to share a very personal story. I dated a guy who is now two weeks away from becoming a doctor. Below is the email I just sent him. I had undiagnosed endometriosis and chronic BV and yeast infections, however my boyfriend thought I had somatization disorder. I changed the names, minus the name of my wonderful gynecologist. I would like to share my story with women and doctors alike to raise awareness about how the sexism prevalent in today’s medical and social society prevent women with endometriosis from being diagnosed.Readers may also be interested in this feature article by CEC’s Founder, Robert B. Albee, Jr., MD.  Thank you to Kathryn for allowing us to share her poignant words.

By Kathryn Williams

Bryan,

I had an interesting conversation with a close friend today who was a psychology major. Also, a few weeks ago, my allergist, who loves to talk, told me the reason he became an allergist was because his mother had horrible food allergies, but nobody believed her until she went into shock. He told me a big problem with the medical society is that many male doctors falsely assume women-particularly *young* women-make up their problems. My allergist said that what appeals to him most about his career is that the majority of his patients are women, because women are more allergy prone, and he is often the only one who believes them.

It got me to thinking… it is really messed up that you suggested I had somatization disorder a while ago. Your whole attitude about that showed, too. After talking to my friend, I looked up the disorder online. I originally only knew the basic definition from an undergrad psychology course. Sounds a lot like endometriosis, considering symptoms involve the nerves, bowels and reproductive system. An arrogant, sexist male likely came up with that disorder as a way to subordinate women in pain.

AFTER most times we had sex, I was in severe pain and had sciatica for two days straight. I had to take narcotics and was sometimes bedridden. I also sometimes got raging BV and yeast. I had to go to physical therapy twice a week; one reason why I never had any money. Two weeks after surgery, after we had sex, I was in so much pain that I no longer wanted to live, although I didn’t say anything to anybody. I had times where I couldn’t do any physical exercise, because I would pee myself, and sex just made that so much worse.

But after all that I secretly went through, you suggested I had somatization disorder.

I was raised in a culture where we don’t talk health stuff, particularly vaginas, pee and pelvises. Also, I never want to make anyone feel guilty. Well, you know what, such a notion is ridiculous because it is the precise reason so many women are in my position. I am telling you EXACTLY how it is, with the hope that maybe this will turn around and help somebody.

You are so sweet and kind in many ways, but you definitely have some arrogant, sexist beliefs. You told me the first time I met you that you thought young women overreacted about things. Secretly that frustrated me, as I went to a very feminist college.

Your brief but succinct suggestion of somatization disorder has at times, internally, enraged me to no avail. It was psychologically damaging that in the course of 5 years I saw over 15 doctors before I got diagnosed. One reason it took me so long to get diagnosed was due to sexist male doctors. Kamal Hamod, MD, an open minded MALE doctor, was a godsend! After all of that, it was ALSO psychologically damaging that I had to endure so much pain after we had intercourse, ONLY FOR YOU TO SUGGEST AND BELIEVE I HAD SOMATIZATION DISORDER.

People who quickly presume women with multiple complaints have somatization disorder should NOT BE DOCTORS. Those who assume they are always right should not be doctors. Even Lawrence, the doctor above you, stated the latter about you. Know-it-alls will automatically come to the conclusion of somatization disorder, if they can’t figure something out, so they can still feel intelligent.

Doctors who always think they are right and automatically think young women with multiple complaints have somatization disorder will ruin someone’s life. You ARE very intelligent, but that doesn’t matter in many instances, for you are closed minded. You put women into these generalizations you read in your text books without looking at them like a real person.

P.S.- You really only see people as the generalizations in your textbook. I ALSO got MAD when you said most people with cancer work full time. My brother, old coworker, and my favorite professor had cancer. Some people with cancer DO work full time, but their ability to do so depends on many factors. If my brother were old enough to work, he most certainly would not have been able. My coworker and old professor could not work full time. Also, my aunt who has sundry autoimmune diseases can’t work full time either. I work almost full time, and it’s hard when you have pain!

My personal observation, based on the cancer comment, is that you do not try to figure out what the lives of your patients are like outside of the very dry textbook symptoms, yet you act like you are an expert.