March is Endometriosis Awareness Month! Real Stories from Real Experts (Page 2)

Each day thaware15-300x98roughout Endometriosis Awareness Month, we will be adding stories (and in some cases, links to stories) that have been shared with us by the real experts who know this disease best: those who live with it every day (read more about this project here). Check back daily for the latest and scroll down to see all the stories as we add more. We commend our contributors for bravely sharing their experiences in order to raise awareness and help others. You have our gratitude and respect, and remain our sources of inspiration each day. Thank you.

PAGE 2 | Be sure to visit Page 1 here to read all the stories
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Jane Doe

Here’s what I know about endometriosis…

I know that since the age of 11, it has completely taken over my life. It started with extremely heavy periods, fainting, throwing up, sweating, diarrhea and horrible pain. It only continued to get worse the older I got. My family doctor couldn’t figure out the problems and then at age 14 I started getting ovarian cysts and they were awful to deal with but I knew that they weren’t the main cause of all my problems.

Finally, I was referred to this incredible OBGYN at age 22, she knew right away what my problem was, endometriosis. When I was 26, all my problems got worse, I hadn’t been able to hold onto a job for very long or really enjoy life to its fullest. I ended up in the ER for what felt like the millionth time but this time was different. I couldn’t stand the pain any longer. My OBGYN suggested surgery and at age 27 I was operated on. My right ovary was attached to my hip area and was successfully detached. She was able to remove some of the endometriosis but my left ovary and left ureter were completely covered. So they were left as is. For the first time in my entire adult life, I felt normal. I started a great job and traveled and even got engaged to my boyfriend of 7 years. We found out summer 2015 that I pregnant with twins, it quickly went from exciting to the most horrible experience of my life. I was 9 weeks along when I miscarried both babies, it was just awful. I’ve never felt such horrible pain in my life and not to mention the grief that came along with it.

It has been 6 months since then and my endometriosis has only gotten worse. Worse than before my surgery. It’s accompanied by severe cramps/periods, panic attacks, diarrhea, blacking out, back pain, vomiting, depression, fear of getting pregnant and going through all of the awfulness again. I lost my job because of everything I had gone through and the now constant pain from endometriosis.

So what I know is that pregnancy does NOT fix endometriosis, if anything it has only made it much worse. I now have to wait until April before I see my surgeon again so I’m not sure what the future holds. I hope that one day there is a cure for this so no more girls and woman have to suffer.

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Jane Doe

I am 44 years old, and it has taken over 20 years to finally be diagnosed with endometriosis.   Ever since my period started it has been painful, unpredictable and heavy.  I was put on birth control as a young teenager to control my “bad cramps” and to “regulate” my cycle.  I was told that pain with menstruation was just part of being a woman.   

For years I told doctors that something felt wrong with my periods, it should not be normal to feel like I had the flu the week before, having to drag  myself through my 8 hours of work and then going straight to bed due to severe fatigue when getting home, PMS hit me like a Mack truck! The week of my period  I  sometimes would be  doubled over in pain and heavy bleeding, there were days I could not eat during my cycle because eating would make me so sick to my stomach.  I begged for hysterectomy since my early 20’s due to the awful pain only to be given some other form or birth control to try or dismissed. Thank God I now know that hysterectomy is not a solution to endo, but that is how bad the pain was. I was willing to lose body parts to be free from the pain and havoc that endo gave me.  

Last February I had a cyst on my left ovary that caused severe pain that just would not resolve, now I would really experience the frustration and heartache it takes to diagnosis and properly treat endo.   I went to my primary care doctor, 4 different Ob-gyn’s, a Uro-gyn (to consider bladder, bowels and female parts) , a Gastroenterologist (to consider bowels) , and a Urologist (to consider bladder). I got all kinds of different diagnosis, but still had no relief of relentless pain.  I  finally found one Ob-gyn that was willing  to do an exploratory laparoscopy. She was the 9th doctor in a few short months I consulted  for my pelvic pain, she found me full of endometriosis and adhesions from an old gallbladder surgery .  9 doctors in a few months to finally figure out what my pain was from, the only reason I kept searching so hard was because the pain was so severe and constant it was taking me away from my friends, family, job, and life…I had no more quality of life.     

I had ablation with the OB-gyn who found my endo, and had another surgery with an excision specialist who removed endometriosis from more challenging areas (he also found adenomyosis that was missed for years THAT was addressed by hysterectomy). 2 surgeries in 5 months for endo that was inside me for over 20 years and countless doctors to properly address endometriosis. 

Many doctors, many years and tears to finally put a name to my pain: Endometriosis and adenomyosis. Now my road to recovery can finally begin.

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Broekman

My story began at the age of 11 when I broke out in hives one morning and started my first menstrual cycle later that day. Every month my immune system would drop with the onset of my cycle and I would come down with a cold, strep throat etc. and the pain from the cramps would increase. By high school I was missing classes due to the pain from my cycle. My dr kept telling me to take Advil, it never helped. It wasn’t until I began working full time and my boss begged my dr over the phone to do something to help, and for a while my pain was manageable. By the age of 21, I re-enrolled in undergraduate school and my monthly pain had become debilitating. It took my mother begging her oncologist to check me out before I was finally scheduled for surgery to check for endometriosis, I was 23 at the time. Once I was diagnosed with Phase IV Endometriosis my life became nothing but one surgery after another, hormone suppression drugs, bc pills in every dose and combo possible, my pain was never taken seriously and even days after surgery was treated like a drug seeker. I went through too many Drs to count. Some told me the pain was in my head, one told me I just had a low tolerance for pain, but my favorite was when one told me “your pain is not my problem”.

So, after too much suffering and no end to it in sight, I had all my reproductive organs removed along with all endometriosis tissue the surgeon could find. I was 30. It always amazed me that everyone was always so caught up in my fertility, when it is known that endometriosis is the number one cause of infertility, and, to be honest when you are doubled over vomiting from pain the last thing you are thinking is “wow, I sure wish I had a screaming infant to take care of right about now!”

During my hospital stay I was put in a room across the hall from the mourning chapel. Naturally when I discovered this and was encouraged to walk around, I went searching the halls for the evening chapel, they didn’t seem to have one. On my last night a nurse I had not seen before came in and asked me if I was ready to see my baby. I just started laughing and told her I would love to see the baby, but there was no way it could possibly be mine.

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Nicci

I don’t remember exactly when I started menstruating, but I think I was around 13. Throughout middle and high school, I always missed at least one day of school a month or had to be picked up early due to being doubled over with painful cramps. My mother would just tell me to put my legs up and take a nap. Family, friends, magazine articles – nobody acted like it wasn’t totally normal to miss school when you have your period. It didn’t get better, and when I was 15, I was prescribed oral contraceptives to help regulate my period because it often lasted up to 10 days and my cycle was around 24 days long. It seemed I was menstruating more than I wasn’t.

I took those pills (changing the brand/type a few times along the way) for 15 years. I remember asking my doctors if it was ok to be on them so long. “Yes, perfectly safe,” they all said. During those years, I had gotten married and my husband and I had always said we didn’t want children. My periods weren’t quite as painful, but looking back, I had a lot of other symptoms I just never put together with my reproductive system. I would have stabbing pains in my rectum that would nearly bring to my knees at random times, like while walking across a restaurant to be seated at my table. I had painful IBS type symptoms that would often leave me pale and weak. The worst was probably the painful intercourse. This nearly ended my marriage due to my inability/unwillingness to talk about it with my husband, which left him feeling unwanted by his wife, and me vulnerable and without control.

Shortly after my 30th birthday, my husband and I decided maybe we did want to have children after all. I made an appointment with an OBGYN and had her run any tests she thought necessary to be sure I was healthy enough to conceive and carry a baby. She said I was! I could stop taking the pill after my current cycle ended. We were scared but excited and wondering what in the world we were doing, but after 15 years of taking a pill every single day, I stopped.

That’s when all hell broke loose. Suddenly, I was missing work or going home early nearly once a week. I was almost constantly in abdominal pain that left me laying on the couch in the fetal position sometimes for entire weekends at a time. We stopped making social plans because I had been cancelling nearly all of them, anyway. Sometimes I would lay in bed moaning in pain until I blacked out. I eventually found taking four ibuprofen at a time would give me a few hours of relief so I could get through at least part of my day. I desperately went crawling back to that OBGYN, not knowing where to start. After she asked me to try taking Mirilax daily, because she was convinced that I was just constipated. When that didn’t work, she sent me for a colonoscopy where I was found to have a few places in my colon which were “irritated,” but nothing more. My professional treatment was to “…double-up on the Mirilax.”I left with a large bill for a test that didn’t tell me anything. I was back at square one. One day, I even ended up at a walk-in clinic when I couldn’t stand the pain any longer. They did an x-ray of my abdomen and sent me to see a specialist because they saw some calcifications on my hip bones. I was hopeful, but it turned out to be yet another waste of time.

I started to have searing pain in my hip joints that felt like hot pokers. The stabbing rectal pain became more frequent and significantly more intense. In a desperate attempt to take control of my own health, I tried something called the “Whole30.” The 30-day strict elimination diet with a structured reintroduction led me to discover eating wheat/gluten caused serious, painful episodes and constipation – sometimes lasting as long as 10 days! I also found I felt much better without dairy or legumes (especially soy) and limiting sugar was important if I wanted to feel good as well. This was revolutionary in my life! I finally felt like I had some control over my health! I got to a healthy weight, was no longer missing work and was becoming active again (even running my first half marathon and first obstacle races!), but I still had painful episodes around the time of my period. I saw another physician who tried treating me with hormone therapy. I was taking a dose of progesterone daily with additional sublingual doses during painful episodes. This was the first time my periods weren’t too painful for me to exercise; but my cycles became very unpredictable and the progesterone often left me exhausted.

By this time, my husband I had been trying to conceive for around two years and we realized infertility may also be an issue. Refusing to go back to the first OBGYN, who also tried treating me with antibiotics “just in case,” I made an appointment with a different physician who practiced “natural family planning.” This turned out to be the best decision of my life. He mentioned he suspected endometriosis during my first visit with him. This was the first I had heard that word mentioned by a medical professional. He explained that it could only be diagnosed via laparoscopic surgery. I was fearful of surgery and of the possibility he could be wrong and he might find “nothing wrong with me” as so many before him had. He completely understood and respected my reservations about surgery and he had other solutions! I felt so at ease with his care even though I still didn’t have definite answers. He sent me to a fertility care specialist who taught me to use NaProTECHNOLOGY (Natural Procreative Technology) to chart my cycles using the CREIGHTON MODEL FertilityCare™ System (CrMS). This system taught me so much about my reproductive system and the charting allowed my doctor to see my body wasn’t producing enough progesterone (which was already suspected by my previous doctor). He had me taking it vaginally, but only 10 days per cycle, starting the third night “post-peak,” in order to preserve fertility. This seemed to help with the pain a little, but not enough to make up for the messiness of the vaginal suppositories and the constant sleepiness. I went crying into his office one day, begging for the surgery. I had my period that day and was in tremendous pain. He asked if he could examine me. That’s when we discovered I had Pelvic Floor Dysfunction (the exam left me barely able to walk to my car). He asked me to give pelvic floor physical therapy a try before we scheduled surgery, just in case that was what had been causing all of my problems.

This sounded intimidating, to say the least, but my therapist was incredible! She made me feel totally comfortable and again, I learned so much about my body! Unfortunately, she couldn’t help me. I would start to get better, but my cycle would start again and we’d lose all the ground we had made the weeks prior. She reported back to my doctor that she hadn’t been able to help me and we scheduled laparoscopic surgery for a few weeks later. I was nervous and scared, but looking forward to finally having answers and possibly relief. The plan was to look for endo, and if it was found, remove it. During my surgery, endo was found and it was removed from my uterus, ovaries and bladder. It was also discovered that my pouch of douglas was obliterated and my uterus was stuck to my bowels. My doctor didn’t feel he had the skill required to remove the endometriosis from my bowels and free up my uterus, so that was left as it was. He recommended that if I still was experiencing pain, that I seek a specialist to remove the remaining endometriosis.

Through physical therapy, I learned about a Facebook group called “Nancy’s Nook” that focuses solely on evidence based education about endometriosis. For the first time, I didn’t feel totally alone in this, as there are thousands of other women all over the world with the same disease (and many of the same debilitating and sometimes embarrassing symptoms)! Some women were unable to work at all due to their constant pain. I was starting to feel grateful my pain generally only lasted from the onset of my period until I ovulated and then I would get a break for about 10 days. My doctor and I tried various things for pain relief and I ended up with a prescription for an opioid narcotic pain reliever. It usually worked, and as long as I cut it in half or quarters, I could function at work. However, taking them daily for several days in a row led to a feeling of foggy brain and physical exhaustion. I started to feel like I was treading water, just trying not to get swept away by the current of pain and fatigue. I often used essential oils in a hot bath with epsom salts to help my body relax and sometimes had to take a strong prescription NSAID with my other prescription pain reliever in order to function. Opioid drugs can cause constipation and other issues, and the strong NSAID was putting me at risk for things like stomach ulcers. Not to mention, I was still dealing with infertility. This was no way to live.

Nancy’s Nook maintains a list of expert endometriosis excision specialists based on the methods they use to treat endo (excision vs. ablation…etc.), and most importantly, patient feedback from other nook members. Through my research, I determined Dr. Sinervo at the Center for Endometriosis Care in Atlanta, Georgia (a five and a half hour drive from where I live) would be the very best surgeon to treat my specific situation. I applied online to submit my records for review and after receiving the application packet, it took me another several months to get the courage to submit it. Within about two weeks of submitting my packet, I heard from Dr. Sinervo himself! He was certain he could help me and let me know one of his staff members would be in touch to start the process of scheduling surgery. I had to spend some time convincing my insurance company that they should make an in-network exception for an out of network surgeon and then I was ready! I was actually looking forward to having surgery. I knew this surgery would be the beginning of the end of my endo journey. I expected to need more pelvic floor therapy after I was healed, but I was expecting my life to be back to “normal” within about six months of surgery. On December 9, 2015, I went into surgery knowing a bowel resection would possibly be required. I came out of surgery having had a bowel resection, appendectomy, partial vaginectomy (there was a nodule of endo in my vaginal wall muscles – ouch!) and having had several endometrial cysts removed as well as my uterus and ovaries unstuck from my bowels. For all that was done, I felt pretty great immediately after surgery. My bowels were working, my pain was easily managed and my appetite was normal.

About a week a later things took a turn for the worse, however. A rectovaginal fistula formed. This was pretty awful. Not painful, but emotionally defeating. I went back to Atlanta and the doctor that performed my bowel resection with Dr. Sinervo did a temporary loop ileostomy. Talk about an adjustment. I felt like I had brought another patient home from the hospital with me requiring its own special treatment and care. Fortunately, another Facebook support group called “ostomyland” came to my rescue. At first I thought nobody needed to know about my ostomy, but within a week or two, I was no longer embarrassed and was able to tell people about it. I came home from the hospital with it on Christmas Eve and my dad and stepmom drove twelve hours to visit us the day after Christmas. I was able to get dressed and go out to eat with them and my husband with no issues (other than my appetite being a fraction of what it was pre-op). As I sit here writing this, I am recovering from another surgery that was 10 days ago where Dr. Sinervo repaired the hole in my vaginal wall along with the adhesions that had formed from the excision surgery. So far, my two post-excision periods have occurred immediately after my ileostomy surgery and this last surgery, so it’s hard to tell if my pain is gone because I’m managing post-surgical pain with the same prescription pain relievers I used for endo. I can tell you I just feel different, however. I feel like the endo part of my pain and suffering is gone. I still have to get through another surgery or two to repair my bowels and reverse my ileostomy, but once those are over and I am healed, I can begin therapy and that will be the last piece of the puzzle for getting my life back.

People need to know about endometriosis. They need to realize it’s not normal for women and young ladies to have severe pain during their periods and to seek help if this is the case. We all need to advocate for ourselves and accept nothing but the best care available without interference from our insurance companies, families, friends, employers or doctors who don’t know what they don’t know. There is no cure for endometriosis and pharmaceuticals can only treat the symptoms and should never be prescribed to a patient as a treatment for the disease. The only real way to treat the disease is with excision surgery with a skilled surgeon who knows what to look for and how to remove the deep infiltrating disease from any and all tissues (or employ the help of additional surgeons as needed such as in the case of deep bowel involvement). Unfortunately, there are not many of these expert surgeons in the world, so be prepared to travel; but it will be worth every mile to get your life back.

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Maria

I had horrible menstrual pain as a teenager. The pain was so bad I threw up. At age 18 I was put on birth control pills to control pain, bleeding and ovarian cysts. Even with the birth control I still had horrible, painful periods and pain throughout the month as well, which worsened the older I got. Because of the painful periods I chose to skip the sugar pills so I wouldn’t have a period. I did this for about 4 years before I got married. I got married end of October 2010 and stopped BC end of November 2010. April 2011 I had emergency surgery. Went into the Dr on Tuesday and had my surgery Friday. They suspected a hydrosalpinx. It ended up being endometriosis of the ovary. At that point I lost my left ovary. Immediately after surgery I was put on Lupron. It did not help the pain and I was hospitalized one week after surgery for a low grade fever and severe pain. My endometriosis was burned off during this surgery. The pain was so bad I wasn’t even able to wipe myself for nearly two weeks after going to the bathroom. I was only able to sleep on my right side for a month. I was not able to even stretch out on my back.

Let’s talk about the Lupron shot. It had horrible side effects. I was extremely fatigued. I had one big mood swing. Meaning I went from my usual happy easy going self to frustrated and hard to get a long with and next to impossible to live with. Remember id only been married 6 months! I hated my own self and there was nothing I could do! I gained nearly 50 lbs with the two shots I received. I believe these shots lasted 3 months a piece. It took a year for me to lose the gained weight. This surgery was followed by multiple surgeries. 9 in four years. Some were both laps and DNC and other just DNC. I was put on just about every drug known to suppress my symptoms. I was told to get pregnant or get a hysterectomy. I wish I could get pregnant! Because of all the damage done I have less than a 3% chance. I was diagnosed with pelvic floor dysfunction.  Insurance won’t cover pelvic therapy I need. They will approve 8 hours a year saying their therapist states I shouldn’t need more than that. I have spent probably close to $25,000 all together in pelvic therapy over the last six years. But the insurance will cover all these surgeries that didn’t help and ended up doing more damage to me than the endometriosis would have.

Over the years I have formed adhesions both from the improper surgeries and the continued growth of the endo. The adhesions have formed into frozen pelvis and I am now experiencing bowel blockages. During my first surgery I was told if I hadn’t have had this surgery I would have to have surgery on my bowels in 4-6 years because the endometriosis was so bad my bowels were almost completely closed off. It seems that’s the only part they got right. The surgery was in April of 2011 and I have had blockages confirmed on xray in January 2016. Five years later. From a surgery that didn’t work! I now have the bowel issues the surgeon then stated I would have had at this time had I not had the surgery. This should go to show these bandaid surgeries do not work! I did not learn until end of 2015 that these treatments don’t work and excision surgery is the best scenario. I wish I knew then what I know now.

No Dr or individual led me in the right direction. And it was not something I thought I needed to research. I thought I was getting proper care. I also want to note how fatigued I am from the chronic pain and not sleeping. Blood and urine tests show my cortisol is very low and doesn’t spike mid morning like it should. It actually drops. I wake up feeling no better than I did when I went to bed other than the fact my heart isn’t racing from exhaustion. I’m also out of breath just talking due to fatigue. I am just exhausted to no end.

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Susan 

How endometriosis changed the course of my life…

I’ve been dealing with endometriosis for over 30 years and in that time this condition has shaped my life in ways I never would have expected.

I received the official diagnosis of endometriosis in my early thirties, but looking back I can now see the symptoms were there right from my early teenage years.  It takes an average of almost 10 years for women to get diagnosed with this disease, shunting through the medical system with their symptoms, getting put on hormone altering drugs, prescription pain medications, or even being told to live with grueling pain.

I had very painful periods in my teens, and as I progressed into my early twenties my periods would stop and start, or be much longer than normal.  Finally I went to a gynecologist about this and was sent for a D&C (dilation and curettage  – a procedure to remove tissue from inside the uterus for diagnosis).  This showed nothing abnormal and I was put on a birth control pill to “help regulate” my periods.  But over the next years I started developing other symptoms: a bloated abdomen, sensitivities to certain foods, and bouts of irritable bowel syndrome (IBS).  I would often have sharp pains from my ovaries and a relentlessly aching lower back.

Finally one night I woke up with pain that felt like an axe was in my abdomen, the worst pain I ever felt in my life.  I should have gone to emergency but for some reason I just lay curled up on the bathroom floor crying and toughing it out for hours.  That event got me referred to another gynecologist and ultimately for a pelvic ultrasound.  The ultrasound revealed that I had many uterine fibroid tumors and a cyst on one ovary, and it was thought that the extreme pain had been from the rupture of a cyst on the other ovary.

Next I was sent to an endometriosis specialist and scheduled for a laparoscopy, where the official diagnosis was made.  The organs in my pelvis had been extensively stuck together with adhesions.    I remember being told that I had “stage 3” of this disease that I had never heard of, couldn’t pronounce, and oh by the way – there is no cure, and you may not be able to have children.  There is definitely a huge shock factor to that kind of news.

Post-surgery it was recommended that I go on a course of Depo-Provera – a synthetic progestin that is supposed to slow down any endometriosis growths, by suppressing menstrual cycles and estrogen in the body that stimulates the endometriosis.  I had the first shot, and within less than 2 months had gained close to 10 pounds. But worse than the weight gain were the horrible mood swings, anger, and irritability – not to mention hair loss and skin breakouts.  By 9 months in, I couldn’t stand being in my body or mind anymore.

Not only was I feeling negatively about my body and health, but endometriosis had begun to take a toll on my personal life as well.  I think, no I know, there were times I pulled away from potential relationships, and even took myself out of the dating realm for long periods of time, because at some core level I allowed myself to believe that I was “broken” as a female, and possibly couldn’t have children, so what man would want to take that on.  And I’m sure for many women who do have a partner, at some level they wonder if they’re going to lose them.  Along with dealing with sometimes debilitating physical pain and fertility issues, this is another layer of endometriosis suffering that can be devastating.

During this time I had started intensely researching to try and understand what I could do to support my health.  At this point, I made the decision that I was going to take control of my healthcare and try and find some additional options.   I told my Dr. I was not going to take the Provera any longer and she advised against going without drug intervention, but I had committed to and felt comfortable trying some alternative health measures and at least seeing what happened.

Many women with endometriosis often also develop other health conditions.   A 2002 study reported in the Sept. 27 issue of Human Reproduction(1) concluded that hypothyroidism, fibromyalgia, chronic fatigue syndrome, autoimmune diseases, allergies and asthma are all significantly more common in women with endometriosis than in women in the general USA population..  This was the case for me, with hypothyroidism, fibrocystic breasts, uterine fibroids, digestive issues and other pelvic pain conditions, so at this point I felt well and truly imperfect; and I knew I wasn’t just dealing with endometriosis alone, but a multi-system dysfunction.

Because I was diagnosed in the 1990’s there was much less information available, but I devoured anything I could find about women’s hormones, reproductive issues, nutrition, supplements, and alternative health.  I radically changed my diet, and used supplements to help clear excess estrogen in my body and bring my hormones into balance.   I made sure I was exercising regularly and allowing myself to rest when I needed it.  I starting seeing a naturopath for extra guidance on supporting my health with natural means.  I began to improve and reached a point where I had very little pain or symptoms!

I felt so good for so long, that eventually I slid out of the “program” I had developed, and a few years later, was back for another laparoscopy as I had a large ovarian cyst.  After surgery #2, I decided I would stick with what I knew worked for me, and never looked back.

I returned to specific nutrition, supplements, acupuncture, exercise, and later discovered pelvic floor physical therapy to address the damage that had been done in those years to the internal structures.  I never had to have a further surgery or medical intervention for the endometriosis, and experienced very little pain.

My relationship with endometriosis had altered, to the extent of changing the course of my life.  In the last few years I felt strongly that after decades in the business world, I wanted to find a way to help other women with everything that I had learned – so they didn’t have to experience years of frustration, isolation, and needless suffering while trying to make some sense of the flood of sometimes conflicting information on how to treat the disease.  I became a certified nutrition coach with specialized training in women’s health and pelvic pain conditions, and now focus my personal experience, knowledge and my heart on helping women manage this disease, on both physical and emotional fronts.

One of the most important lessons endometriosis has taught me has been that when faced with a serious health condition, you need to become your own advocate and take control of your health care by understanding as much as you can about it.  Knowledge is power, and once you have that control back, you can make informed decisions, and support your body’s natural healing abilities. 

I also learned that there is no magic bullet, or exact path to take.  For most women, managing endometriosis will mean an individualized combination of surgery, pain medications, nutrition and lifestyle changes, and physical therapy to recover, but it can and does happen!  There are some wonderful organizations for endometriosis that continue to put out an empowering amount of practical information, and medical and alternative health practitioners (among whom I now count myself) who are absolutely dedicated to relieving the pain of endometriosis.

Living with endometriosis changed the path of my life drastically from how I envisioned it would be as a young girl, but now, as a middle aged woman, it’s created an opportunity for me to serve and support other women in a way that never would have existed but for my painful journey.  I am proof that you are not alone in this fight, and that there is hope and healing!

WWW.SUSANTESSMAN.COM

1 Human Reprod. 2002;17(10):2715-2724

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Jennifer

I am a 42 year old woman and was diagnosed with Endo in 2004. My mother had Endo and one of my best friends from childhood has Endo. My symptoms started developing in my teens. I developed flu-like aches and pains, vertigo, as well as low grade fevers ( I did not have severe cramps back then, but did have severe allergies and the strange flu-like symptoms). As I got to be in my 20’s, I started developing heavy periods and bad cramps with my period. I also started having a terrible stabbing pain in my lower right ribcage. At first it was diagnosed as GERD and I was put on an acid reflux diet and Ranitidine. It did make a bit difference it seemed but nothing significant.

was 28 when I had my first event that indicated there was something wrong. I was working at an editing facility in NYC, sitting at my desk when I suddenly had an excruciating pain in my abdomen on one side. It felt like I was being stabbed. It was so bad I called a coworker over to help me. I had No idea what was going on and did not even have my period at the time. My boss asked if I needed to go to the hospital. I had no clue what to do. I said I wasn’t sure. So they took me into one of the studio rooms where there was a couch and had me lie down for a while. The pain continued on and off for probably an hour. Then it was gone as soon as it came. They sent me home in a car to rest. It was a strange and frightening occurrence but it seemed to pass and it didn’t happen again for a while.

Some months later I had the pain again. I decided to see a GYN and he told me I needed an ultrasound. The ultrasound showed that I had a cyst on my ovary. He recommended I see an oncologist who specialized in gynecology…. I was blown away. I went to see her and she ordered blood work and a CT scan. She did not believe I had cancer from her findings (thank god), but told me she would need to do a laparoscopy to be sure. She said she believed I had endometriosis. We scheduled the surgery. And then just the day before my surgery, she called me and told me that she had made a mistake. That I did not need surgery…. I didn’t understand this. But she said that I was ok and the cyst would go away on its own.

Well, whatever was going on, I started to feel better and assumed that I was ok, as the Dr said I would be. Nearly a year later, I was having problems Again. I went back in to see my GYN who ordered another ultrasound, and there it was… A chicken egg sized cyst on my ovary. A chocolate cyst they said. My GP had also  done blood work and did a CA125 test. She said it showed abnormal cell growth. So, by her recommendation, I went to see a surgeon who would do laparoscopy and remove the cyst. He diagnosed me with Endo. He removed the cyst and some near by specs of Endo. He showed me pictures of the surgery and explained what he did and put me on birth control to try to keep the cysts from forming. I didn’t do well on the birth control pills. My period symptoms were a bit better, but I began to lose weight and have terrible joint pain and felt quite ill and also crazy. I was switched to another BC. Didn’t do well on that either. I had terrible swelling and sickness and mood swings. I stopped taking birth control after 3 weeks of hell.

I had several cysts in the years to follow. Bad cramps, heavy periods, intestinal problems, vertigo and depression. I suffered through and just took tons of ibuprofen. I also suffered chronic yeast infections and UTIs, some so bad they infected my kidneys and I had to take multiple rounds of antibiotics to get better, a vicious cycle for the yeast infections. In 2011, I got very sick. I had the worst yeast infection of my life, a UTI, was bleeding for 13 days straight, and my abdomen was distended. I began to get a fever and had a terrible stabbing pain again. I went to my GP and she was terrified for me. She said I had to go to the hospital Immediately. She believed I had a ruptured cyst or an ectopic pregnancy. I took myself to the ER, dripping with sweat and bleeding heavily. They did an ultrasound and said I had another cyst. And possibly a growth of sorts. They suggested I see a specialist. I also had a strain E coli that usually only ICU patients get.

The specialist at Weill Cornell did an ultrasound right in his office, he said I had polyp and it was like the culprit for all the imbalance and infections. The cyst was an ovulation cyst and would dissolve on its on. So, I had another procedure. A Hysteroscopy to remove the polyp. And that was that. He said that I should just stay off birth control since it seemed to cause me more problems and just take things as they come.

I did okay for a while. The usual symptoms continued. Until my husband left me. And I was devastated… I lost weight because I couldn’t eat. I left my job because I couldn’t focus on work. And I had to move to a whole new place and get a roommate. I got 2 jobs, working 7 days a week to support myself. I was stressed out and exhausted. And then, I began to get severe cramps again. More ultrasounds. More cysts. More birth control despite my skepticism. It was supposed to be a low estrogen miracle drug. My hair started falling out, I lost weight, I felt crazy, and now…. A new side effect. Reynaud’s syndrome. My fingers started turning dark purple and my finger tips were going numb. I got off the drug. And the Reynaud’s never went away and continues to this day, 5 years later, but now my fingers And toes turn white. I also developed Sciatica, that always seemed to coincide with my cysts. I had many trips to the ER that year. And one trip, an ultrasound showed a complex abnormal cyst that was entwined with my ovary. Another trip to a specialist. A wonderful Oncologist in gynecology that was straight forward and told me she would do the surgery and find as much as she could and it should hopefully give me another several years of relief. She did the surgery, and was able to save my ovary. She also found Endo all over my bladder, uterus, rectum, and covering the bottom of my appendix… So much so that she contemplated removing it, but decided to leave it since she was able to get it all off.

Then I joined a new Endo study that seemed promising. It was for a new drug that was supposed control pain in a different way. I was hopeful. But in all of the screening and tests they did, I had an abnormal PAP smear with precancerous cell on my cervix. I was disqualified from the study. And had a biopsy which thankfully turned out ok.

My last laparoscopy was 2 1/2 years ago. I felt good the first year after, with the exception sciatica that continued. But since then, I have suffered terrible all-over body pain, intestinal problems, nausea, unexplained vomiting, Reynaud’s,   abdominal bloating, nose bleeds during my periods, and a pain in my shoulder/ collar bone area that was at first misdiagnosed as Pleurisy. This pain occurs mostly with my periods but also comes and goes throughout every month. I have all the symptoms of Diaphragmatic Endo and my new GP believes that is what causes the pain after several xrays and scans and labwork. I have been taking pain killers on and off now for 4 years. And now for the past year, I have been taking Tramadol on a regular basis. My Dr suspects I have Fibromyalgia, as the pain I have is widespread, chronic and often debilitating. It takes me hours to get moving in the morning. I also have chronic sinus infections, yeast infections and UTIs again. I developed reactivated Epstein Barr in the summer and suffered for weeks with infections and mono-like fatigue. I have also had BV infections a few times since.

Recently, I have had pain, severe bloating and strange pink discharge again. Another ultrasound, but nothing significant showed up. The new GYN says it’s like tiny Endo adhesions. He recommended Lupton shots or an IUD. I said absolutely not. I have no interest in being a guinea pig again. I have started taking daily supplements to combat the infections. I am seeing a chiropractor for all of my sciatic and back pain. And continuing to forge ahead. I thank god for a boyfriend who is understanding and supportive, especially when we have sex and it hurts so much sometimes we have to stop.

I am grateful ( in a bitter sweet way) for my dear friend who suffers Endo worse than me and is a daily support for me. She had a hysterectomy that was never necessary because her Endo is actually colorectal. She also suffers from hypothyroidism, fibromyalgia, and allergies. She can no longer work full time. She and I are constantly searching for news on Endometriosis waiting for something monumental. Waiting for a huge break through. We are in our 40’s and feel forgotten.

We hope someone will listen, that the medical and scientific community will help us and help all the young girls that will become women with endometriosis. Thank you for reading this.

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Chrissy

Endometriosis to me means that I am conflicted. When I want to have sex, on one hand I want to feel close to my partner and on the other I am aware of the pain I am about to endure. It means even though I’m on the pill when my period comes I am going to need to be home as often as I can so I can get to a bed, floor or couch when I feel like I’m going to faint from the pain. It means I’m not as energetic as I once was and sometimes I just need to stay in bed all day. It means being that annoying person in the restaurant asking what’s in the sauce, and to take out certain things because I need to avoid inflammatory foods. It also means that I take care of my diet more than ever and actually feel good. I avoid saturated fats, refined sugars, wheat, caffeine, soy products, preservatives and chemicals. Natural foods help keep it under control, which gives me my sense of power over my body back. This doesn’t give me complete control but any feels like a blessing. I exercise for the same reason but I don’t have the energy to do as much as I used to and I don’t have the pain tolerance to withstand the pain that sometimes comes with things like running or lots of bouncing and movement.

Explaining my diet is frustrating because it’s not vegan, or paleo, or vegetarian…it’s damage control! Being in pain every day is frustrating because I am constantly on the verge of tears and talking about it with GP’s is frustrating because they don’t know enough about it.

Endometriosis has come with depression, frustration, lifestyle change and the need to develop skills of adaption. However, to adapt means to accept, to accept means to feel content, feeling content leads to happiness, which eventually balances out, the frustration, the depression and the pain so it’s all manageable. I’m forced to manage my symptoms, my body and my mind and that has led to much more care and mindfulness towards myself than I ever gave before.

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Becky

The first I recall hearing about endo was in romance novels, which I started reading about the same time I started getting my period, at 11. The heroines in the book would either be unable to conceive, or told they wouldn’t. Beyond that I had no understanding of what endo was. I was the youngest of 5 girls, and I’m pretty sure heavy periods were just part of life for all of us. I had no issues conceiving, had a daughter at 22 and a son at 23. Rapidly gained 100 lbs, and was miserable physically and mentally for the rest of my 20’s. Had gastric bypass at 31, and got my life back. Had the self confidence to deal with some of the physical issues I had suffered from for years. Had lots of dr appointments, tried to deal with the painful periods and leaking urine. Uterine ablation, urethral sling, nothing worked quite right. So many appointments, not a single mention of endometriosis. A laparoscopic surgery may have been offered, but I had felt like a hypochondriac for so long I thought that was crazy. I got my dream job as a police officer, and tried to live a normal active life as a working wife and mother. I couldn’t do it. Eventually the ovarian cysts got bad enough I agreed to have one removed. And it was me who suggested she take my uterus while she was at it. It was not the quick lap she had planned, it was many hours and a lot of blood loss. When I woke up the dr told me I had endometriosis. Not knowing anything about it I asked her how long she thought I had it, and she said she figured as long as I had been menstruating.

29 years.

29 years of skipping school to take naps before work. 29 years of awful bowel issues that I never imagined weren’t somehow my fault. Sex with my husband that started as teenagers so it felt like it felt, I didn’t know any different. I always thought it was because I was short, it must be hitting my cervix and that’s why it hurt and would sometimes bleed.

Things got so much worse after my hysterectomy. The remaining ovary got angry. I tried 6 months of Lupron, every day was lived in a depressed fog. A new dr who took out the remaining ovary then wouldn’t talk to me. Repeated bowel obstructions. Hip and back pain. Bladder issues.

The worst, realizing my 21 year old daughter has alarming symptoms. But there is hope. I have surgery scheduled at CEC, and have found a local excision specialist for my daughter. So we will fight on, with so much more knowledge, and the heart to share it.

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Bethany
I was diagnosed with a very severe case of endometriosis on October 31st, 2012 (I was 23) however I had serious symptoms since the age of 10. I had 4 major surgeries including a total hysterectomy w/ bilateral salpingoophorectomy, a pre-sacral neurectomy, my appendix removed, a bowel resection, adhesions and endometriosis removed, ruptured cysts, etc. My last surgery was on August 25th, 2015 and I had many complications afterwards such as severe serum sickness, allergic reactions to medications, etc. I am currently planning my 5th surgery and I can’t even afford it! Since 2012, I started a FB support group online called “Endometriosis Online Support Group.” My goal was and still is to fight End together, raise awareness and find a cure.

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Tina

I began with “extreme pain” at age 16 (menstrual cycle began at 12).  I continued every month thereafter in pain, through high school and my job and no one understood it at that time.  I wasn’t even actually “diagnosed” with Endometriosis until the age of 21.  Even at that time and with having a female doctor; she suggested the pain was everything but, including gastrointestinal.   When I finally pushed her to perform a laparoscopic surgery.  I still remember her saying: “Oh, you were right all along, you do have Endometriosis, I guess you self-diagnosed yourself correctly”.  I knew from that moment on, I would have to be my own advocate for medical help.    Unfortunately in my experience, it never got better; doctor after doctor with various remedies of help, yet nothing worked.  I was given everything from prescriptions of bcp’s to muscle relaxers and pain relievers, suggestions of cooling/heating pads and warm baths, diet/exercise advice to having a hysterectomy in my 20’s to rid the pain.  I was trying so many different methods and nothing was working, plus I wanted a child/family, but wasn’t ready at that time.  * I got married in October 2003’ and finally had my son in September 2005’. *  In between that time, I decided to go with a few rounds of Lupron.  I was warned by the doctor, that this was a drug given to cancer patients and not a drug to be taken lightly, because it would also push my body into a pre-menopausal state, but that I would be rid of the extremely awful and excruciating pain I was constantly experiencing.  I decided to weigh the pros and cons and did receive the shots of Lupron.

This was the 1st time in my life, that I did not experience pain every single month.  However, my experience did not come without any consequences.  I obtained side effects from this high dosage-drug including: daily days/nights sweats, constant headaches, nightmares and intense moodiness.  Looking back, it probably wasn’t the best alternative for me, but it was one I decided to take, because I was so sick of the pain I was in.  I also had a 2nd lap. surgery performed in 2004’, with high hopes of conceiving very soon.  I was also given a prescription of Clomid to up my chances of pregnancy, because this disease affects every part of your being.  Although I got the positive pregnancy result in early 2005’, I knew this too was going to be a rough road with everything I have experienced thus far.  It was never an “easy” pregnancy from the get-go; I struggled to get pregnant, then as I was, I had constant morning sickness and developed Preeclampsia towards the last few months.  I was constantly monitored by my doctor 3 days a week, for weeks and then everyday for weeks, until finally I was hospitalized, because of the Preeclampsia potential of hurting my baby and I.  I was then placed on bed-rest and in this time, my employer was everything but caring or understanding.  In fact, I was told by the employer that they didn’t even believe me that I was sick or diagnosed at all.  When I cried to my doctor about such, she was furious and contacted the employer herself.  She was only the 2nd doctor that I felt, I finally had on my side, that got me and the disease I was placed in.  After having our son, the pain came back ten-fold with the Endo. and I was asked again about receiving shots of Lupron.  At this point, I denied the shots because after all, I had been told by medical staff and women online that after having a baby, the Endo. pain would go away forever.

Well, obviously this is a myth and couldn’t be farther from the truth.  I constantly just lived with this pain and dealt with it the best way I knew how; by crying, holding my stomach, resting, warm showers, drinking hot tea and taking plenty of Midol (the only over-the-counter medicine that seemed to work for me).   In 2009’, a different female doctor performed yet another lap. surgery, this would be the 3rd and final one I had done.  My husband and I wanted more than 1 child and tried all along, but it never happened.  I was told at this point that the Endo. had spread all over; not just on my female organs, but on my liver, bowel, kidneys and other organs, many of which could not be reached by a laser and taken off.  I also was experiencing great pain on my left side and had ink run though my ovary/tubes.  The pain was unbearable and soon come to realize my left tube was completely blocked by Endo./scar tissue, bringing my chances of conception to a 50/50% chance.  Yet again, I found myself in tears and knowing this is why my health has been this way all along.  I gave up on myself after this diagnosis was given.  I was blessed to have our adorable, cute and one-of-a-kind son.  Why did I need to keep pushing the envelope, when it took so much just to get here?  I finally decided enough was enough and no more doctors, no more medicines and no more false hopes.

I continue living with this pain that I was given, for whatever reason and dealing with it the best ways I know how, but that’s what I decided, just to live with it!  I have tried in the meantime to create an “Endometriosis Walk” in my local area to no avail.  I contacted the Endometriosis Association by email in Milwaukee, WI and was given some steps on How to create a Walk, but so much is needed and involved, I just never knew how to go about it the correct way.  I also contacted our local government and did receive a response back by Tammy Baldwin on much needed research into Endometriosis in our areas.  She sent a letter of agreement, but stated that funds for such were low and basically not a top priority at this time.  I wish it was and I wish more people would get on the bandwagon with this.  I am not the only one suffering and won’t be the last.

When are doctors and medical staff, research and government going to take us seriously?  My name is Tina and I am a 40 year old woman with Endometriosis!  Please spread the word and help find a cure.

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Ami

My first experience with pain was my first cycle. I was 12 and I was at the mall with a friend. My “stomach” began to hurt very badly and I ended up vomiting quite a bit that evening. I woke up the next day and I was having my first period. Back then, I only had pain on an occasional basis. I remember being 14 or 15 and feeling so awful. I kept vomiting, I could barely stand and I was crying and begging my mom to do something. Now, I can admit that I have always been a tad dramatic. So, my mother called me a drama queen, gave me Tylenol PM and put me to bed.

My first gynecological appointment was at the age of 16. I discussed the pain with my new doctor and he prescribed birth control that he said was made to lesson cramps. Fast forward to my sophomore year of college. By this point, I’d learned tricks to help lessen cramps a tad, but my go to was still Tylenol PM. In January of that year, I started my period but after two weeks, it was still going. I lived about 4 hours from my gynecologist so I called and spoke with the nurse. She told me not to worry that it happened sometimes and to call back in a week if it was still going. So, I called back the next week. We spend the next four weeks talking every other day. I’d begun losing a drastic amount of weight, I was exhausted all the time and the pain was becoming so severe I couldn’t function. I was told that the second I stopped bleeding I needed to get in the car and drive home for an appointment. I stopped bleeding on a Sunday evening. I called the emergency line and was told that I would have an appointment at 8am the next morning. Unfortunately, the doctor was unable to give me an exam. The tools were not able to be inserted and even a normal check with his hands was not doable. My body refused to cooperate. We had a long discussion about what to do. He listed off about 5 different reasons for my pain but said that he would not diagnose me with anything officially. He said anything he found would affect my insurance later in life. He started me on the 3 month without a period birth control, gave me Darvocet for pain control and wrote a doctor’s note excusing me from any and all classes I would miss that semester. I started my period again 2 days later and it continued for another 2 months.

After that flare, I had no issues outside my period for many years. I eventually lost my insurance and graduated college at the height of the recession. I was unable to find anything but part time work without insurance. I bounced from free clinic to free clinic and always asked about cramps but was told it was not a big deal. During this time, I got pregnant and had a miscarriage at 12 weeks. I got married at the age of 25 and found a job that offered insurance. I was so excited that I found a doctor right away and had an appointment scheduled for the day after my insurance went into effect. I continued to see this doctor for three years. In that three years, my husband and I were unable to conceive. And, at almost every appointment, I asked about painful periods and painful sex. I was prescribed 800 mg acetaminophen and was told to tell my husband “don’t try to be a rock star in bed”. We had a multitude of fertility testing done, but a reason why was never found. Eventually, the inability to conceive caused the end of my marriage.

I remarried 2 years later and at my first doctor appointment made sure to let my doctor know about the pain around my periods. The pain had been gradually increasing in time length. Where the pain had previously just been during the period, it was now present for over a week before, during the entire time and for a few days after. He immediately did a different exam, told me he believed I had endometriosis and sent me to schedule a laparoscopy. While I was in the recovery room, he informed my husband that there was disease “everywhere”. He sent me home and told me things should get better soon. But, they didn’t. At first I thought I had caused a problem by doing too much after surgery but 4 months after surgery I was in pain daily and it was just getting worse. And, there had been no decrease in period pain. So, my doctor told me to pick between Lupron and Danazol. I chose Lupron because I was worried about my voice changing with Danazol. But, mostly, I did it because my husband begged me to. I had not worked since we married and he thought it would be the perfect time to try something new out. It was the worst decision I’ve ever made. The pain skyrocketed. And, in addition to that pain, I lost the ability to use my hands most days and had difficulty walking from pain and fatigue.  After 3 months, I refused to take it anymore.

Although I had discussed the drug at length with my doctor, he just shrugged and said that most women stop taking it for joint pain. I was furious. It has been a year since my last shot; my hands still have issues and I cannot walk more than 100 yards without either falling, getting dizzy or needing to sit down. My doctor just keeps adding meds for me to take.

Currently, I take 21-25 pills a day.

I was finally able to meet with a specialist in Phoenix, AZ. I was diagnosed with Pelvic Floor Dysfunction and was encouraged to follow up with another doctor to determine if I had Irritable Bowel Syndrome.  We discussed my options and set out a plan. My husband is in the military and we are about to move. Once we move, I will start seeing a new doctor  (found by the specialist in AZ), begin pain management and try to find a pelvic physical therapist. If all goes according to plan, I should be able to have surgery some time in the next year. In addition to excision surgery, my doctor wants to give me a pelvic floor botox shot and has offered to do a presacral neurectomy. But, has warned this may have serious side effects.

In the meantime, I am unable to work, have lost contact with most of my friends because I am unable to leave the house very often, and I spend a lot of time high from pain medication. I react very strongly to medication so I have to be very careful what I do while taking them. I cannot drive, have a difficult time cooking (I caused a kitchen fire twice)and cleaning, cannot enjoy any hobbies I used to love (some from the meds and some because of the lingering Lupron side effects) and I am having serious issues with concentration and memory. I am suffering from anxiety and depression because I hate what my life has become and I am afraid it will never get better. All I have ever wanted in life is to be a wife and mother and have a job that makes a difference in the world. It’s hard to have a good marriage when my husband spends so much time as a caregiver, adoption agencies have told us we are not candidates because of my current pain issues and I haven’t been able to work in a very long time. This is not where I thought I would be.

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Marie

I would like to share my story of struggle with Endo for 19 years before diagnosis.  My monthly cycles started when I was 14 years old and right after starting my cycles would last 3 weeks every month. I was taken to the Dr about the problem and was prescribed a month supply of birth control being told it would correct the problem and be normal. The birth control did work and no longer took any after that. In 3rd grade I slipped and fell on my face hitting cement causing a concussion, fracturing my front teeth and my nose. I was able to make it to the school office and when I got there I passed out, the paramedics discovered I had a heart murmur. My family Dr told me being active in sports would make it go away.

I did every sport I could but never could just stick with one sport before exhausting myself to the point that I could no longer perform. After I turned 16 years old my cycles had become really heavy to the point of bleeding through my clothes even with wearing layers just in case, so I wouldn’t be embarrassed or teased. This was also a time I went into the foster care system because my parents were abusive, each in there own way. By the time I was 18 years old the cramping pain was becoming hard on me and couldn’t even make it to my room and the house rules of my foster family home was to be a part of the family, do chores and at that time was now working for my foster mom with child care so staying in bed or resting was not an option.

Over the counter pain pills didn’t ever really work good enough, but my foster mom saw me as over reacting, that it was normal and made her angry I couldn’t help do my part and job in the home. She would tell me to go to my room but couldn’t make it there and no one would help me. It seemed like every monthly cycle was like getting the flu. Stomach upsets all the time, constipation issues but when getting nervous or anxiety about something the opposite would happen. Fevers happened often through out my life, I was told my first year of my life I had sinus and ear problems with fevers of over 100 that lasted for hours and usually only at night till early morning hours, she said the Dr didn’t know what was wrong. My temp is normally 97.3 and 98.3 feels like a mild fever to me.

Every monthly cycle I would get a fever. In my 20 I was told to try yams yeast on my abdomen to help but just trying to rub it on my skin was so sensitive and painful I would be crying with no relief. My foster mom and Dr’s figured it was just associated with the abuse I went through and assumed I had been raped and just don’t remember. Things were bad but I know that did not happen because I feared to sleep at night and have a superb memory. Still a virgin I feared a sexual relationship for many reasons. After turning 21 my foster family had lost the house and we became homeless sleeping in a camp ground for 6 months. In a tent with blankets I was freezing every night with little sleep, when I felt I needed to urinate walking to the restrooms alone I feared until day light only causing me more pain. Once we were back in a home the problems got worse again and moving every 6 months was hard on me with my foster dad and my sister moving everything our selves and all 3 of us only getting injured every time.

Among the constant moving I was in the search of a job and when I was 24 I got my first retail job. I was so happy that even in pain I kept on and worked faster and better than most setting high standards for all my co workers to race me to the best full time potions. Before being hired I noticed my heart rhythm was not right and would take my pulse and my heart beat would stop for a second or 2 then start again. This concerned me but hadn’t had insurance for years and is why getting insurance meant so much to me. Many times in between moving from one place to the next all 8 of us were sleeping in our vehicle and hotels. With cramps, sitting sleeping like that or standing for to long only made the pain worse and couldn’t ever get sleep. I would go days with out eating simply because I had no money after giving it all to my foster parents and working on an empty stomach meant less pain. Above all odds my hard work brought me to a full time potion and now had insurance. Cardiologist diagnosed me with an early beat, I refused medication and was told it was nothing to worry about. Shortly after that, one morning at work with a huge abscess on my face, I started to over heat like I had never before. I started to feel ill and knew I needed help. The store was not open yet and I was working on scanning clothes at the front of the store, I felt like I was going to pass out so I crawled my way back to the office to let someone know.

After sitting and having to wait 30 min for the manager to arrive to let me leave the pain was gone, I felt high and was dripping in sweat, I was told I had looked green all over but then turned to pale. My foster parents took me back home and waited another 30 min or so longer before my foster mom said that she will take me to the dentist. When we got there he screamed and yelled at her to get me to the hospital. By then my skin was turning red from my face down to my chest just inches away from my heart. They told me any longer and it could have killed me, I had a jaw bone infection due to a impacted wisdom tooth. Soon after that my irregular heart rhythm was gone. Since that time my monthlies became worse where over heating with pain brought me to the point of passing out at work and at home. Before dizzy and faint and not able to walk from the pain was now drenched in sweat and dropping to the floor before passing out and causing injury. I went to the Dr about how much worse my monthly had gotten and so was offered the Depo shot to stop my period.

With already feeling bloated and squeezed on the inside, this only made that worse but less bleeding made that part of my monthlies not as bad. When I was 26 I became sexually active and things got worse for me, constant UTI’s, blisters and itchy stinging discharge, and yeast infections, yet had no STDS.  After one day at work I was moving a box and injured my back, still unknown how. I couldn’t hold my arms above my head anymore with out pain and strain that lead to numbness and tingling. The feeling of knives stabbing in all directions in my back and needles poking me and sensation of bugs crawling under my skin. I had to quit my job and moved in with my boyfriend. I was able to heal for once and get sleep for the first time in my life better than ever. He did not know of my other problems and Had fear and anxiety about telling him. After injuring my back I started drinking hard alcohol with red bulls to keep me going.

Alcohol I rarely had before and usually gave me this strange sensation of pain in my groin like I needed to urinate right away. Alcohol started to become a good numbing affect, as long as I could drink enough with out vomiting and the right kind I could with. We decided to move to AZ and at the wrong time of year, we learned the hard way. Had no AC in over 100 degree temps, I got so hot my face was beat red, we were in luck a gas station and clouds above us trying to form a storm. Walking into the store it felt like I was falling through the floor, I grabbed a water and ice cream sandwich and we sat out in the wind, we were lucky. I was a little over average weight but not over weight, but after 3 years I became border line anorexic.  I only had alcohol in the evenings and maybe one or 2 in the afternoons to keep things clean and tidy and animals taken care of but didn’t drink everyday. My boy friend is a disabled vet, so doing what I can for him has been something I wanted to do despite my own pain, I got him more than he realized but still wanted to be there for him. I had to cut back and stop drinking any alcohol even though that meant I had to just deal with the pain.

I still only took over the counter pain med because I didn’t like how pain killers affected me. They would cause my ears becoming so sensitive to sound, made it difficult to function and concentrate as my skin became sensitive too and even felt like I would forget to breath. That also meant by quitting alcohol that sexual intercourse would be more painful at times and certain potions. I started to lose interest in sexual intercourse. I went to the hospital again and they said I had a hormone imbalance. I didn’t have insurance so seeing a Dr for those who don’t have insurance would only prescribe pain killers and not find the problem.  I started to connect why I had so many UTI’s and blisters and remembered back to when I had to wear a heart monitor for a week and got blisters all over my chest, it was latex, I was allergic. Being under weight had made my periods last 3 days moderately heavy but wearing a tampon made things unbearable.

Over heating with sweat dripping off of me all over having to strip all my clothes off in severe pain not able to stand or crawl anywhere with out sliding all over from the sweat. I wanted to shave all my hair off, so hot and hair touching my skin drove me to high irritation. Hands would get cold as my abdomen and lower back felt extreme heat, my hands were cold enough to help. Night sweats and pain daily was reaching extremes. Painful urination and bowel movements. Have allergy asthma, IBS and sensitive to chemicals & light. My life was chaos. I went to a specialist, at first I didn’t acknowledge what she said she thinks I had never had heard of it. She prescribed me birth control, didn’t help, the lumps in my breast got huge & painful. Went to the hospital 2 times after that. Went to another specialist and she wanted to do surgery, after months I agreed to it & the biopsy came back positive for Endometriosis & in images of my surgery I also have small cyst all over one of my fallopian tubes not related to Endo. That was 10 months ago at the age of 33. Nothing removed or visible in abdomen and biopsy on ovary is where it is now. I have the Mirena in me and it has helped not having the worst of episodes but feel pain daily still but better than before.

I don’t take pills or drink, I deal and let my own endorphins help me & rest more to help ease pain. It is bad news and I am still trying to accept it while at the same time feel validation that it wasn’t all in my head or overreacting. Reading about others I feel connected and not alone anymore.

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Emily

From the time I was 11 years old and got my first period, it was intensely painful.  I spent years living like this thinking it was “normal” because I was a woman and that’s just what we have to deal with. As the years went on the pain became worse and then started to affect my bladder and bowels. When I was 24 years old, I had what I thought was “just another bladder infection” but this time with intense pain on my left side and back. I was sent for a CT scan thinking I had kidney stones.  What they found was a very large ovarian cyst on my right ovary that needed to come out surgically.   A few weeks later I was in surgery, and that’s when I was diagnosed with endometriosis.

Nothing about this awful disease was ever discussed with me, I was simply told to start continuous birth control. When this didn’t work, I was then given a shot of Lupron. No side effects or alternative treatments were ever discussed. Months later when I was in the emergency room with severe pain on my right side again, another very large cyst was noted on my right ovary that required surgical removal. This was removed in surgery a few days later. 10 days after my surgery I was in debilitating pain at home and called my husband to bring me to the hospital right away. I was first dismissed as being a drug seeker, and told that my pain was “normal” after a surgery.  I was finally able to speak with an E.R. Doctor who ordered a CT scan that showed a 10 cm abscess on my right ovary. I was admitted to the hospital and stayed there for a week with an infection that did not subside, so again underwent surgery for removal of this abscess.

Months after all of these surgeries my pain was back with a vengeance.  The decision was made to remove my right ovary. Shortly after this surgery, my surgeon moved to another hospital and my care was transferred to a female OBGYN.  What I thought would be a wonderful change (she was a woman, after all), ended up being a disaster. After multiple consults with urologists after which I was diagnosed with IC and underwent multiple surgeries (hydrodistention, urethral dilation, and Interstim placement) I was still in significant pain daily. My new OBGYN surgeon reluctantly agreed to do another surgery to look for more endometriosis.  The disease was always found at the time of each surgery, although I experienced little relief each time. My relationships, work, and bank account began to be affected negatively because of this terrible disease and multiple surgeries. After a few more years of enduring pain on a daily basis and being expected to simply live this way for the rest of my life, I made a phone call to my doctor. Her return call changed my life. After explaining all of my symptoms, she said “Have you looked at your chart?  You have had multiple surgeries already and shouldn’t be in pain. You have a mental problem and need psychiatric help.”  I was stunned, shocked, and humiliated.  I knew this was not in my head, but where was I to go from here?  Days after this awful conversation I was accidentally included in a group text message among my coworkers in which they were discussing my multiple absences due to surgeries and were essentially calling me crazy.  Not only was my body failing me, this completely destroyed my spirit. I turned in my 2 week notice at work the following day and a few weeks later my husband and I made a big move to be closer to my family and the city I grew up.

Because of the awful way I was treated by my surgeon I decided I no longer wished to receive care for my endometriosis. After 3 years of no treatment and not seeing any doctors, I couldn’t take the pain any longer. I found a new doctor in the new city of which I lived and was told he was an amazing endometriosis doctor. At my consult endometriosis was seen on ultrasound, along with multiple large ovarian cysts on my one remaining ovary. I underwent surgery 2 days later for removal of endometriosis and cysts.  Stage four, extensive endometriosis was discovered in my entire pelvic region.  I had some pain relief for approximately 6 months. Now what was I to do?  Was this the way my life would be?  An endless line of surgeries with very short windows of relief?  I was in despair, and again ignored my symptoms and did not go back to see this doctor again.

Fast forward 3 years down the road, again, and the pain had become unmanageable.  I established care with a regular primary care doctor and was simply given the option of going back on birth control.  I refused this option as it had already failed me several times in the past. I got home from that appointment and started researching endometriosis online. That’s when I came across Nancy’s Nook Facebook page. And I credit this page for saving my life.

I learned that excision surgery is the gold standard for removal of the disease, a surgery which I had never had, nor heard of. I could not believe after all of the doctors, appointments, and surgeries I have had in the past that this was never mentioned as an option. A referral to a specialist was never even hinted at. The thousands of women’s on this page pointed me in the right direction- to Dr. Heegaard in Minneapolis, MN.

I saw Dr. Heegaard for consultation in December 2015 and after reviewing all of my old medical records and doing his exam, the decision was made to proceed with excision surgery along with hysterectomy and removal of my remaining ovary and tube. I had surgery 3 weeks ago and although I have a long way to go in my journey, I am confident that I will get there with my new doctor, my life-saver. I owe my life to him and to Nancy’s Nook.

It is appalling that it takes multiple years and multiple doctors to even get a diagnosis of endometriosis. It disgusts me that the majority of us women with endometriosis have been treated poorly by friends, family, coworkers, and even the doctors that we are supposed to trust. More needs to be done to bring awareness and education to this awful disease that robs us of our relationships, careers, fertility, and quality of life.  I hope that this will reach even one person that can relate and then seek quality care.  This is why I am choosing to share my story.

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Katy

My story is not at all unique or extraordinary. As an active member of a large patient education group, I hear plenty of stories that strain incredulity, but mine is completely believable to many women who are endometriosis patients and it’s believable because it’s common (though no less important).

I did not know about endometriosis until after 40 years of age, when I stumbled into diagnosis. That part was accidental but I suppose inevitable. If it had come sooner, my life would be immeasurably different at mid-age. I might have had a rewarding career and thriving children and a wide circle a friends. This isn’t me lamenting what’s passed me by, this is me standing side by side with all the other women who watched as their friends and family participated in the business and pleasures of life, all while wondering why they felt incapable and crippled so much of the time.

My life is wonderful and I’m grateful for the people who make it so. I am grateful beyond words for my kind and loving husband of 18 years; he’s been at my side even though each and every one of those years included unexplained miseries and stressful circumstances. I am content and fulfilled and happy, but my life is still broken in many ways. I know I am privileged to be able to consider myself cured, but I am still putting the pieces back together, still carrying some baggage.

Again, my story is common. The vague set of symptoms that nagged me were characterized as gastrointestinal complaints and as a result, I spent lots of time in the offices of well-meaning doctors who knew little of endometriosis. I had my first colonoscopy in my late 30’s. I spent my 39th year on a gluten-free diet because Celiac was suspected. Looking back, I can see that one or two questions could have saved doctors the time, insurance the money, and me (and my husband) the pain and loss. But the doctors didn’t ask and I didn’t know that my painful menstruation, pain with sex, and unexplained pelvic pains could (should) be considered in the context of my more seemingly urgent bowel complaints. I didn’t understand the possible connections until much, much later.

As a younger woman, my physical distress was often attributed to an upset mental or emotional state and as a result, I feared being labeled a malingerer, a fibber, an attention-seeker. I felt those judgments often enough that I internalized them. Like so many others, I felt dismissed and ignored for years and even now, though I’m educated and empowered, I continue to live with those insults and injuries. Like so many others, I learned to keep complaints to myself because I feared dismissal and labels, and as a result, I facilitated the delay in my diagnosis. In the process, I folded in on myself. I folded in on my fear and anxiety and shame, and I settled into a profound sense of isolation. At the time, I thought I was uniquely alone, but I now see my experience as part of a whole; I see that though I felt isolated, I was not alone. I am a member of a 10,000 patient education group and I can see that our stories are so much the same, even when they are different.

I learned to keep my complaints to myself and over the years that took a toll on my career, my sex life, my personal relationships, and my self-esteem. By the age of 39, I was experiencing episodes of intense and frightening pain and at 40, I was hospitalized after seeking help in a local ER. I had had these episodes before: cold sweats, intense nausea, a twinge that quickly escalated to unrelenting searing rectal and LRQ pain — pain that could only described as insertion of red hot knives. I coped with Advil, lots of cursing, pacing the house, heating pads, hot baths, and nights on the cold bathroom floor. Usually, after an hour or so, the pain would return to a less terrifying insistence, but this time, the searing pain would not go away and my husband insisted we go to the ER. After all the usual exercises, the questions, the exam, and the common suspects (pelvic inflammatory disease, STDs, appendicitis, diverticulitis, so on), they decided to admit me for high white blood cell counts and unexplained pelvic and rectal pain.

They found an ovarian mass on CT scan and ultrasound, but I was told it was normal and would resolve on its own. Their main concern was the abnormality seen in my bowel and they thought for three days about things like ulcerative colitis and Crohn’s and as a result, I saw a parade of gastroenterologists and was told to follow up after discharge. I followed up and was told by the GE that there was nothing wrong with my bowel. Deflated, I dressed and waited for the PA to return to the exam room. She was the first person to ever say the word “endometriosis” to me and I was grateful enough to later send her a thank you note.

After months of watchful waiting with medication, I pleaded with the gynecologist to send me to someone who could help me with surgery. I had surgery in 2012 to remove a large endometrioma from my ovary and at that time, the highly-regarded fertility surgeon ablated all the endometriosis he could identify. I got good relief from my constant pain and debilitating bowel symptoms until about one year later, when the bowel symptoms gradually resurfaced. After another year, I started experiencing the old familiar lower-right quadrant pains that had formerly sent me to the ER on many an occasion.

My symptoms became so disabling that I often could not leave the house. I cancelled appointments and social engagements. The bowel symptoms and nausea became so pronounced that I could no longer travel or do any of the things I love. My fatigue was crushing, my spirits were low, and my anxiety was high. In short, my quality of life was terrible and as a result, my sense of isolation and hopelessness grew. Over 80% of endometriosis patients suffer from depression and/or anxiety and if you’re one of them, it’s easy to see why. We often feel hopeless because the overwhelming majority of options we are offered prove ineffective. Our families don’t understand and our doctors lack answers. Even once we learn about how skilled excision surgery can restore hope, the obstacles to more specialized care seem insurmountable.

The only way I could afford to hope for better was to convince my insurer that had I exhausted the in-network options and required something better. I saw the regional specialists who told me that I had IBS and gave me a script for an anti-depressant. I had had prior surgery by a highly-regarded surgeon in my region, I tried various drugs, and I altered my diet. I suffered for far too long and I knew that the only hope was to convinced my insurer that continuing on that path would only waste more of their money.

With the help of a patient education group called Nancy’s Nook, I was able to find a doctor who understood what was at stake. I found the Center for Endometriosis Care in Atlanta and I felt like I could finally dare to hope for better, for once, for a change. I am now fully recovered from excision surgery and I know that the success of my surgery is because of Dr. Sinervo’s exceptional skills and his knowledge of this disease. My gratitude to the staff of the CEC and Dr. Sinervo is equaled by my gratitude to the community of women who volunteer their time to educating others about excision surgery. Because of their dedication, I have the opportunity to put my life back together. For the first time in almost two decades, I can see a world of possibilities rather than a life negotiating limitations. I hope the same becomes possible for an ever-increasing number of women.

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Anna

The Lucky One – an Endometriosis Story

Normally, I wouldn’t call anyone with an endometriosis diagnosis “lucky.”  Sometimes its hard to think of myself that way.  I’ve been through countless hormone treatments, 3 different surgeries, and have lost my fertility because of this disease.  In what universe am I “lucky”?

My mother was diagnosed with endometriosis at 21, after suffering for years with what she thought were “normal” cycles.  Because of her experience, she knew what was normal and what was not.  When she had me and my sister, and we started approaching puberty, she knew the signs.

I started menstruating at 13.  Shortly after, my cycles were becoming increasingly difficult for me to handle.  I was bleeding a lot, for many days longer than I should.  I was in a significant amount of pain.  I thought it was “normal”, but Mama knew otherwise.  She took me to her GYN’s office at 16 years old.  I was a modest teenager, absolutely terrified of whatever exam was about to be performed, so much so that I had a small panic attack in the office.  The NP took pity on me, and because of my mother’s diagnosis and my symptoms, she wrote down “suspected endometriosis” in my chart and put me on birth control.  Most doctors would have written me off as a dramatic teenager.  Most would have told me it was in my head.  Most would have insisted on an exam.  This one didn’t.  She listened, she knew.

My mother knew.  I was lucky.

For the next two years, I played birth control roulette.  I wasn’t very good at it.  It took years to find a birth control that didn’t trigger migraines and left me useless and bedridden.  I ended up back on migraine preventatives and strong medication for when I had an episode.

Periods in check.
Migraines in check.
Off to college.

Throughout college, I continued on my one birth control that seemed to do the trick, and kept up with my daily migraine protocol.  Miss either one of those, and there was hell to pay.  I was keeping the status quo, though.

In 2010, before the establishment of the ACA, my insurance company decided that my one Holy Grail of birth control was no longer a preferred method of treatment, and I could no longer afford it.  I thought that maybe my endo was in remission, maybe it wouldn’t be so bad.  I could just get off birth control and “tough through it” until my first Big Girl job came through and maybe my new insurance wouldn’t be so ridiculous.  Who are men in suits at an insurance company to decided they know better than my doctor what works for my healthcare treatment, anyway?

For the first month or so, it wasn’t bad.  I was able to preemptively manage severe cramping by rotating ibuprofen and acetaminophen on a strict schedule.  Until I wasn’t.  Until I was bleeding for two weeks or longer at a time, crippled with pain and passing huge clots.
I was engaged to be married to my wonderful husband in late 2011.  My endometriosis had clearly gotten out of hand, and I wanted to make sure I was going to have an enjoyable marriage, and enjoyable honeymoon.

I found a new doctor, with excellent reviews, covered by my new Big Girl insurance, and wasted no time in treating endometriosis as best as he could.  Within a month of being his patient I was on the operating table having a significant amount of endo “burned off”, along with a D&C for uterine polyps.  Most doctors wouldn’t have acted that quickly.  Most would have thought I was making a big deal over nothing, and would have wanted to “observe” my response to more hormones before operating.  Not my doctor.  I was lucky.  After surgery, he gave me and official endometriosis diagnosis.  He didn’t “stage” it, other than to say:  “Wow.  There was a bunch.  You weren’t kidding.  It was really rough in there.”  He then gave me two options:

Get pregnant NOW, or start an insanely intense regimen of hormones suppression to keep the endometriosis from growing back.  I was still engaged, the wedding was two months away.  We wanted to be married first, learn to live with each other before bringing a child into the mix.  Hormone suppression it was.  After 6 months, that form of hormone suppression was no longer working.  My endometriosis was coming back.  Bring on the Depo-Provera shots.  After 6 months of that rollercoaster, it was no longer working either, and it was very apparent that my endometriosis was back in full force.  My pain and bleeding was getting worse with every month.

With my doctor’s ultimatum (“It’s now or very likely never”), we decided to actively start trying to get pregnant in January of 2013.  For 6 months, I didn’t have a period.  I had intense daily pain, but no bleeding.  Its really hard to get pregnant when your cycle just disappears.  My body had been on synthetic hormones for so long, it literally didn’t know how to behave without them.  After some consultations with my Naturopathic cousin working with my GYN, I was able to reboot my system through some diet and lifestyle changes, with very specific supplements, as hormone therapy didn’t work anymore.
Three months of Clomid (deemed “the devil’s drug” by my husband) and three months of Femara, my progesterone levels were non existent.  I wasn’t ovulating.  And on the off chance that I actually did ovulate, my levels were so bottomed out, there was no way an embryo could survive and be sustained by my body.

Yale University has recently proven that while women with endometriosis have different levels of growths, pain, and organ disruption, all of them have one thing in common:  a struggle or even an inability to produce progesterone.

My doctor knew he’d reached the end of his expertise, and my needs were beyond what he could offer.  For that admittance of defeat, I am forever grateful.  He could have been stubborn, I would have trusted him.  He could have kept me on a crazy regimen of hormones that weren’t working.  Rather, to give me a fighting chance at having a family, he passed me on to an Fertility Endocrinologist (FE).  I know other doctors wouldn’t have done that.  Again, I was lucky.

My FE took a no-nonsense approach to our situation.  Because of financial constraints, we opted to try IUI first.  He skipped the usual beginner IUI medications (Clomid and Femara), as they’d done nothing but make my hair fall out in previous treatments.  Literally, I lost about half of my hair. Four rounds of IUI failure confirmed that we would need IVF if we ever wanted to be pregnant.  We knew my endometriosis was back.  By then, I’d stumbled across the Center for Endometriosis Care on YouTube of all places, and lost myself in the research and success statistics in excision surgery.

My husband and I had decided that if we were ever going to have endometriosis surgery again, we were going to Atlanta where I had an actual chance of getting it gone for good.  I spoke with my GYN as well as my FE.  Both gave me their blessing and encouragement as I sought a third opinion.  They helped in gathering my medical records and sending it off to the clinic in Atlanta, and offered assistance in any way that they could.  Most doctors wouldn’t do that.  Some doctors might even get offended that I was unsatisfied with my results with them.  Not mine.  I was lucky.

In 2015, I had my excision surgery in Atlanta at the CEC.  There is not adequate vocabulary in the English language to describe how thankful I am for each and every staff member I worked with.  From the lab techs to billing to the nurses and Dr. Sinervo.  The CEC made a really terrible diagnosis as easy as possible.  They listened.  They were on top of the latest research.  They worked with professionals from a variety of training and treatment methods, from homeopathic to the very latest in western medicine.  They gave me the opportunity to participate in research studies that were actively seeking a better understanding, and one day, a cure, for this rotten disease.

I woke up the day after my surgery (I don’t remember much from the day of) with a diagnosis of State II endometriosis, that had, in just 3 years, come back from nothing and spread to my intestines.  I left the hospital without an appendix, as it was so eat up with endo it was on the verge of rupturing.  But I also left the hospital with a <5% chance of having my endometriosis grow back.  I left Atlanta with a body that was a much healthier environment for a pregnancy to thrive.  I left the CEC with a fighting chance at a pain free life and hope for a family.  I left the CEC in remission.

I was lucky.

It has been almost a year since my surgery.  I am still virtually pain free.  Endometriosis has still jacked up my endocrine system to the point that I will likely never progesterone on my own, and therefore my only hopes of pregnancy are with IVF and a lot of progesterone supplementation.  I will always have this disease.  If either of the two blastocysts we have frozen end up being sweet little girls in the future, its incredibly likely that they will struggle with this disease, too.  But should I be blessed with girls, and should my daughters have endometriosis, they too, will be lucky.

They will have a mother who will fight for them.
They will have a father who will support them and believe them.
They will have doctors that listen to them.
They will have access to the best treatments available to them.
They will be educated on their bodies, and they will not be shamed into silence like so many others who have been told “its all in your head”.

My story shouldn’t be the exception to the rule.  I was diagnosed quickly, and had excision surgery at 28 years old.  I didn’t take me until I was 40 to get a diagnosis.  No doctor ever suggested a hysterectomy.  My doctors believed me, fought for me, supported me, helped me receive the best care I could.  My story should be the norm, but its not.  So many women suffer for so much longer than I did, with out the support system I have.  So many women cannot afford to pay the out of pocket costs I was able to pay to ensure I got the best care available.  So many women will continue to suffer like this until we, as survivors and fighters, decided that enough is enough.

Its time to be loud about our uteruses, our ovaries, our endometriosis.  Its time that the misogynistic treatment of women’s health is altered and fixed to benefit women and not the suits and politicians it currently serves.  Its time that stories like mine are normal.  We deserve effective and efficient treatment.  We deserve to have our stories of survival told.  We deserve more than half-assed articles with disproven, outdated misinformation presented as fact.  We deserve more research.  We deserve a cure.

I am a lucky one.

Its time we all were.

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Dawn

What I know about endometriosis is more than what many doctors know.  Isn’t that frightening?  It speaks volumes about the quality of care available to women suffering from this pernicious disease.

General-practice gynecologists are sure that they know what to do about endometriosis: give birth control, give Lupron, do a diagnostic laparoscopy with ablation, continue Lupron or birth control, do ablation again… and again… and again.  It’s a vicious, painful cycle of failure.

What I know from personal experience, research, and talking to actual experts is that none of the above “treatments” work.  They may provide relief to a subset of women, but not everyone, and often for only short periods of time.  It’s a cliché, but the treatments truly are often worse than the disease.  Many of us have permanent, physical damage from Lupron or botched surgeries.  Adding to the misery, the social and psychological impact of years of mistreatment and pain are hard to overstate.

I know that the only real treatment for endometriosis is surgical excision of all the lesions.  Most general-practice ob/gyns don’t do this and also don’t know what to look for during surgery.  They were trained to use outdated methodologies.  They don’t have the time or motivation to learn new approaches to endometriosis treatment.  No matter how much sensitivity is used in discussing the topic, many are offended at the idea that their approach is not the best.

I also know that we need to spread the word about endometriosis symptoms and the only effective treatment, excision.  We’re fighting an uphill battle since inertia of the medical establishment keeps perpetuating this cycle of delayed diagnosis and failed treatment. We’re also hampered by the reluctance of some medical professionals to take women’s health seriously.  They have to do better, and we have to keep insisting that they do.

It should not have taken thirty years of constant, excruciating pain, rude, apathetic doctors, and unnecessary, failed surgeries for me to find treatment and begin the process of getting my life back.  Isn’t it a shame that my story is the norm?

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Ashley
I suppose that my endo story is a bit unusual.  I had no problems at all for many years.  I was put on hormonal birth control when I was 17.  I had ‘normal’ pain with my cycle and no other issues.  In 2011, when I was 28, I switched to the Paragard IUD.  I started having a lot more pain, but my doctor and I chalked it up to the IUD.  The pain got continually worse.  I went to a gynecologist who didn’t think anything was wrong.  One night, it was so bad that I couldn’t stand up straight or walk, so I went to the emergency room.  The ER doctor refused to do anything beyond a cursory poke at my belly.  The nurse told me that, “Every woman has pain, you just have to start dosing earlier and take more Aleve or Motrin.”  In February 2012, I had the IUD removed.  Even after that, I was still having horrible monthly pain.

I finally went to an Urgent Care doctor in late April 2012, and he actually listened to me.  He decided to schedule a CT scan, just to look for irregularities.  On Monday, April 29, 2012, I got the call that I had a 10 cm tumor on my left ovary and a 12 cm tumor on my right ovary, and I was set up with a gynecological oncologist – Dr. Christopher Bryant.  He did a lot of bloodwork, and I did have elevated CA 125 levels.  I had a CT guided biopsy which was inconclusive, so he scheduled an open laparotomy.  Because he was concerned that it was cancer, he really wanted to open me completely up and in his words “take a good look around”.  I went in on May 16, 2012.  When I woke up, the very first thing I remember is the PACU nurse, smiling and patting my shoulder saying, “You don’t have cancer, you don’t have cancer”.  Pathology confirmed – Stage 4 endometriosis.  Dr. Bryant had removed the tumors and a bunch of scar tissue and adhesions, as well as my left fallopian tube, omentum, and appendix.  Had I not already had my gallbladder removed 10 years prior, he would have had to take it out.  I was put on 3 months of Depo Lupron and then birth control pills and recovered pretty well.  I also found out that several of my cousins also suffered from endometriosis – something I had never known.

A year later, I went to my yearly exam with my regular gynecologist and he could feel a mass.  A transvaginal ultrasound revealed two more endometrioma.  I could see the ultrasound screen, and I can’t quite put into words how I felt when I saw those words typed out.  Just barely a year later…and again?  My gynecologist performed the surgery, which was planned as a laparoscopy, with a senior physician attending.  They did decide to open me up.  It was, he said, the worst case of endometriosis either of them had ever seen.  All he felt capable of doing was removing the biggest mass and closing me back up.  He told me that my uterus was covered in scar tissue, and he didn’t think that I would ever be able to successfully carry a pregnancy, even if I could conceive.  He referred me back to Dr. Bryant, due to his skills as a surgeon, and recommended a hysterectomy as the only option.

Dr. Bryant refused.  At the time I was infuriated that he was going to prolong my pain, but now I know that he was just better educated and knew that a hysterectomy wouldn’t cure my endo and would cause a host of other medical problems.  He sent me to an endocrinologist/gynecologist in Memphis.  She did an ultrasound and agreed.  I had a few other growths that needed to be removed, but she felt that my organs were viable for right now.  Dr. Bryant did another open surgery and removed all the growths that he could.  He was hopeful that I may be able to go 5-7 more years before my uterus and ovaries are so destroyed by the disease that they have to be removed.

It’s been over a year since my last surgery, and luckily I have been relatively pain free.  I still get pressure fairly often, but I can manage it with Aleve.  Physically, I feel pretty good.  I am still somewhat self conscious about the long scar that cuts through my stomach.  I had a great surgeon, but there’s only so much he could do after my last surgery.  Emotionally has been a much tougher battle.  I divorced shortly after my first surgery.  Being divorced with a broken reproductive system made me feel pretty, well, worthless.  I had wanted a husband and children and, I felt, had lost my chance at both.  It took me a long time to find a new reason to fight – the combination of depression and endometriosis is a powerful enemy.

I have come to terms with my lack of fertility at this point, and I have a wonderful boyfriend.  I know that at some point in the next few years, surgeons are going to have to reopen the jagged scar and take out what remains of my reproductive organs being wracked by this disease.  It’s scary, but I know that it will be fine in the long run – albeit with some recurring pain and occasionally iffy bladder control.  I just hope that soon, other women won’t have to go through what I have.  That they’ll have better options for treatment and will be treated with kindness.

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Nicolle
It is extremely hard for me to share my experience with Endometriosis because it has completely altered my life and the way I live it. However, I’m sharing my story with you because I believe it’s important to educate as many women as possible and spread awareness.

I was diagnosed with Endometriosis just after my 30th birthday. No one told me that this disease would completely destroy all of my internal pelvic organs. No one told me that I would be in debilitating pain on a daily basis and that I would slowly lose function of my bladder and pelvic floor muscles. No one told me that I would be battling infertility for the majority of my life. What they told me was, “Here take this.” Hoping to keep me quiet.

I have been in pain since the start of my period. If the word period freaks you out, then you are part of the problem. I was told by multiple OBGYNs that, “it’s normal to be in pain, you’re a women you just have to deal, or it can’t be that bad.”

I have been treated as a drug seeker when I fainted and had to go to the ER due to the pain being so significant all I could do was pass out. Trust me, when that happens, shit gets real scary fast. I had not yet been diagnosed.   The ER doctor told me I had food poisoning, even though my boyfriend had eaten the same meal and was not ill. Not one test was ordered while I was in the ER.

I was dismissed by all of my doctors until I turned 30 when I finally had the courage to ASK FOR ANSWERS!! It took over 15 years to finally get the correct diagnosis, even after telling my doctors that I had a family history of the disease. My mother had a hysterectomy after having my brother due to her severe pain to “cure” her. Just so you know, a hysterectomy is not a cure for Endometriosis. My mother shares a similar story of being dismissed for years by her doctors.

Some of you may know women with the disease and some of you may have the disease. 1 out of 10 women is a lot of women suffering. It affects every woman differently. The treatments that may have helped you, may not help me or be appropriate. Another enigmatic problem with Endometriosis is that some women may have extensive lesions and adhesions and have no pain, while other women may have only a few lesions and be in severe pain. Please don’t minimize anyone else’s experience. Please, please do not tell a woman how to treat her disease because you have a friend that did _________ fill in the blank. Trust me we have tried everything! It’s dismissive and hurtful. Women suffering with this disease have been dismissed long enough. It’s time for validation. I will no longer tolerate anything less.

Since my initial diagnosis, I have learned that there is a tremendous amount of misinformation out there. Just go on the internet. The scary part is that the majority of it is coming from the medical field. Doctors are spreading misinformation to women on a regular basis as ways to “treat” or “cure” Endometriosis. THERE IS NO CURE! My doctor had the nerve to tell me to get pregnant, which is downright inappropriate to say to a women who has told her she has been trying to get pregnant for over 5 years with no luck. My thought was, “I can barely function right now. How would I be able to raise a baby with this pain?” My doctor then suggested putting me through medically induced menopause at the age of 30. Again I thought, “Ummm, are you f&#@ing serious!? No thanks.” The drug my doctor wanted to put me on is a chemo drug (Lupron). My doctor failed to share that piece of information and the numerous sited side effects. She assured me that it was the “Gold Standard” of treatment for Endometriosis. It’s not! Ladies, enough is enough!! Please don’t settle for half-assed answers. I encourage you to ask questions and do your research! Please get a second, third, or even forth opinion if you are being dismissed. Don’t settle for “Here take this.” Ask why? Ask what is the root of the problem? Ask! Ask! Ask!!!

We are supposed to have faith in our doctors. We are supposed to trust our doctors. Unfortunately, if you are diagnosed with Endometriosis, you soon find out that information is limited and doctors do not know how to manage or treat endometriosis effectively. Of 40,000 + OBGYNs only 100 OBGYNs are capable of excision surgery (meaning they cut out the cells). That’s a crime and a shame for women! We need better care for women. We need empathic health professionals that will listen with compassion. We need doctors to believe us when we say we’re in pain. We need more women standing up with the disease saying we will not tolerate this anymore!

I had my doctor tell me after my second failed surgery that she would have to start removing organs if my pain proceeded. My internal monologue kicked in as I thought, “Wait what?…You want to take what?” I realized this was a little more serious than I had been led to believe. I had also been referred to an urologist and a GI specialist due to other symptoms that had stolen my quality of life. I found a pain specialist and pelvic floor therapist on my own due to the reduced quality of my life. Hoping to find a little relief, I sought out answers from each doctor. None were versed in Endometriosis. I went through invasive procedures and tests, which only exacerbated the pain. I would not wish this on my worst enemy. During these tests, I had the dreaded “C” word thrown around by a few doctors. Once again I was in this familiar place of being scared, which had become the norm.

The urologist later informed me after a few painful medical tests that I had two other medical conditions that I knew nothing about. I was diagnosed with Interstitial Cystitis and Pelvic Floor Dysfunction in September of last year. My whole world continued to crash down as I learned that I had two additional painful conditions that also did not have cures. I had never felt so isolated and alone. Who would be able to relate? Who could sympathize with this pain that started to rule my life? Who would understand? Most of all who could help? I felt like I was running into brick walls.

I had enough. I went to all my doctors and got all my medical records. I got my last two surgical reports and started researching. My first surgical report stated I had Endometriosis on the bladder and other places, so why wasn’t my doctor removing that? I asked her and she replied that she feared she would permanently damage my bladder or other organs. That should have been my first clue that she was not capable of treating my case. We are taught to trust our doctors. We should be able to trust that they know how to treat one of the most common diseases for women. 1 in 10 women have it. But many doctors don’t have a clue how to treat this disease! I went through two very painful surgeries just to have my right ovary burned and the majority of my disease completely missed. I wish my doctor would have had the courage to tell me that my case was too complicated for her and refer me to a doctor that could help. Instead, her “treatment” drained my bank account, and I was still left in debilitating pain.

I’m dealing with depression and anxiety due to all the stress and changes that go hand in hand with chronic illness. It’s difficult having the people you love watch you suffer, when they would do anything to take away your pain or trade places. I still grieve, clinging to the hope that one day I’ll feel like me again. The worst part about any illness is feeling broken, and the pain is a constant reminder for me. I have come to accept my new normal. I’ve had to make considerable adaptations just to function normally. I’m still learning how to cope. It’s literally a day to day struggle to find balance. The funny thing about pain is it demands to be felt. I struggle with being angry at my own body because it demands so much from me and it continues to betray me. Just stay positive… Hahaha. Yeah, try that when you’re in pain every single day.

I did tons of research and found support groups. I asked questions. Lots of questions. I was lucky enough to find a support group that provided evidence-based education about the disease, treatment options, and articles. I was able to connect with women around the world who all share a similar story to me. I’m thankful for these women and I continue to learn from them each day. It’s heartbreaking to read the stories of these women who continuously try to manage their disease while being dismissed by medical professionals, family, friends and co-workers. I’m so thankful to have a supportive family and friends. Even my job is supportive of me. Having support means the difference between life and death for some women who have this disease.

I’m hopeful now that I’m being treated by one of only 100 doctors who specializes in this disease. I’m also very fortunate to have access to his care. Endometriosis is a CHRONIC ILLNESS. Yes, I know I look fine on the outside but my insides are a complete wreck. Even though I just had surgery, there is a huge chance that I may need another one and even another one after that. THERE IS NO CURE! All I can do is manage my symptoms. Endometriosis comes back.

This has taught me more about myself than I ever wanted to know. I’m still very early in my journey and I may not even know if excision surgery has helped for several months. I also have to deal with three painful conditions, not just one. I’m learning to utilize all the tools I have been given. I have learned that I will have to use multiple strategies to combat this. This will be a battle I will have to fight until there is a cure or better methods of treatment and pain management.

If you are experiencing pain with your periods to the point it’s affecting your life, you do not have to suffer alone. I wish someone had told me this 15 years ago. I wish I had advocated for myself earlier. I hope that this brings a little more awareness to the disease that is affecting women across the globe. This disease has affected every aspect of my life. March is Endometriosis awareness month. I’m hoping that you will take the time to research this disease and give it the attention it deserves.

I am still in the midst of my battle, but I hope that by me sharing my story I will inspire other women to share theirs. I am an Endo warrior! I fight like a girl! I will not keep quiet anymore! Time to speak up ladies!

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Lena
Judas. My body is Judas. Betraying me all the time, not for a few bits of silver but to appease it’s master: Endometriosis. For so many years I’ve looked at my body this way–dividing it from itself, disassociating as much as I can my body from itself.

I remember my first period so clearly and so vividly that I swear I could describe every nerve that was pulled that very first day. I woke up early in the morning with intense waves of pain rippling through my body, and an intense need to vomit. I ran to the bathroom, threw up several times and then while still in the bathroom discovered the small smear of blood that would come to mean so much in the coming years. When I woke my mother up and let her know I thought I had started my period but that I was in excruciating pain she hugged me and said ‘yes, it’s your period and that pain is normal.’ Normal for her as she had suffered with the same pain herself throughout her childbearing years.

I didn’t know then how much my life would be changed by that small smear of blood.

It took me 20 years and countless doctors to be finally diagnosed with endometriosis. 20 years of missed school; missed parties; missed life. This hard to pronounce, mysterious disease coiling like a snake around my body parts finally had a name. By that point the disease had taken everything from me-it had taken my chosen career path, actor after too many times passing out on stage; and it had taken numerous relationships both romantic and non-romantic. Judas’ master has slowly grown over the years from symptoms lasting the first three days of my period, to symptoms lasting the entire month. Pain, nausea, bladder and bowel issues, anxiety, depression and co-morbid diseases make me writhe in agony for hours at a time. Even after 3 surgeries, expensive and extensive physiotherapy, and any other therapy I could get my hands on-Judas and I still battle.

But I will never give up the fight. I will continue to try to bring my body back to itself, to recognize the woman within who fought to be herself, and to show the world her gifts.

I work hard now to ensure endometriosis doesn’t take 20 years from another girl….I work hard to destroy Judas’ master, and forgive Judas for the rest.

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Jane Doe
My lifetime story of struggle and endurance…

I’ve had Endometriosis and Endosalpingiosis, PCOS, IC, IBS/IBD, RA, hypothyroidism, fibromyalgia, and that’s just what comes with these diseases, and my genetic make up, mixed with environmental factors. 21 years of issues with my pelvic area! For many years before being diagnosed with Endo, I was told the pain was normal, irregular monthly, and heavy flow was typical. I was diagnosed at 16 with PCOS but they wouldn’t listen when I said there was something else worse going on.

Around 24, and after being referred to a lot of different specialties, they finally said “we can’t see anything from imaging scans, but we’d like to look inside and see if there’s anything. And if so we’ll remove it, biopsy and hope it works!”

Mind you I had just stage 0 cervical cancer and had been cleared by my oncologist, (they removed it off my cervix 80% taken in total, then bowels, uterus, and bladder, all had it on the surface only) they questioned if it was scar tissue for a few years, or if I was just over reacting. That last part hurt the most, I tried everything they said from heating pads, to cold packs, to meditating, and even bathing in epsom salt, advil, Tylenol…nothing ever worked, and so I questioned my own feelings and if I was overreacting or it was all in my head.

After a laparotomy, they removed a fairly large cyst off my broad ligament, found to be Endosalpingiosis, and a lot of small ones covering my other organs down there, found to be Endometriosis as well. I had 3 small scars, but due to how much was recovered it took months to fully heal. I was relieved to know it wasn’t in my head and finally had doctors want to help me, but I had no clue what it meant, especially for the rest of my life?! Immediately after surgery they treated me with Lupron, inducing menopause for a year, with monthly shots.

At that age, it was a nightmare, and I broke up with my BF at the time and just decided not to date for a while! I felt like a burden to my Mom and child, who helped me with everything. After those treatments I started to feel better for a good year, but pain came back. They referred me to a Urologist, he was a leader in IC. They said it was a condition that goes along with it! Go figure I had it! After a biopsy of my bladder and noticeable inflammation that was the next diagnosis. They also referred me to a gastro, and he also did biopsies in upper and lower GI, finding inflammation in lower, but ultimately saying it was IBS, with bouts of inflammation IBD.

Argg the frustration and tears and praying…nothing but another diagnosis on top of another, and all doing different treatments. I felt like a guinea pig, they didn’t know a LOT about most of it in those years, just that they go together. Great!

So I went thru weekly bladder instillations in his office, and tests that make you lose all self respect, dignity and feel like your being used the whole time just for research and not to help. Finally I was referred to a Uro-Gynecologist! He was incredible, one of the best doctors I’d ever met, and instead of treating me like a disease or another number, he cared and wanted to help. So after a while with all these diseases not being able to be cured, and treatments not doing that much help, he elected to give me an experimental surgery. By this time I just wanted the pain to end, and the same day I get the news that it might finally be over…I got into a serious car accident, and a tractor trailer rear ends me in a small car.

What a way to have hope one minute and the next it’s taken away. I spoke to the doctor about a week later, being in a lot of bracers. He said he’d think at the least my abdominal pain will go away. So we went through with the surgery a few months later! Hypogastric Neurectomy. What’s that? They cut you open 7 inches on your pelvic line, go in move everything to get to your spine, and then see all the nerves that branch from the tailbone, and one at a time remove them all, cutting and burning them off! 5+ hrs of surgery, 1 week in the hospital, and sent home! It worked incredibly, but about 8 yrs later I could feel some nerves start to grow back, and pain come back.

Meanwhile, I was diagnosed with fibromyalgia too. Great! Fast forward to this last year…PCOS was back, but the doctor doesn’t know how to treat the endo and that. So I’m on 200 Depo shot, progesterone only, suppressing my estrogen, and it’s helping but if I get my period the pains horrible. Luckily I only get it near the 3 month mark, so it’s tolerable. But now I have Hypothyroidism, I already had bad genes, and I new I’d probably get this one day especially since my Mom and Great Nana both had it. But now my whole system feels off. But pain is about 6 points lower than it was (on a scale from 1-10 it’s a 3 now) unless I get a period and it’ll shoot to a 9 again.

So I can’t complain, I’d love to have another laparoscopic surgery and have them clear out scar tissue and see if the endo is bad again and remove them…but my doctor doesn’t seem to want to do it, or refer me to a surgeon to have it done. She offered a hysterectomy, but said “it may not fix the problem, and if it did, you could still have phantom pain!” Hormones come from your ovaries, they’d only remove the uterus, so it might not fix anything! Great! No one ever told me 14 years ago that life would be like this, or that the pain would come back at times worse than before!

Also 6 years ago I was diagnosed with RA, I didn’t want to believe it or listen to them, so I ignored it, I was and am tired of doctors and pain and having to bring records with me everywhere, and not have them look at me like I’m a hypochondriac! Yes almost everyone has when we first met!  Needless to say, I finally gave in, started seeing a rheumatologist, and found my hands are deforming, osteopenia, and my body might be attacking all the “tissue” inside myself. So I’m going to assume that this is probably why I’m having excess pain in my abdomen over the last year. Hoping now the immunosuppressants will help everything! But it’s a waiting game, and I have to be patient and see if these meds end up helping.

So now, as I write this, I’ve had to move a LOT to try to get comfortable and hope it helps with what is laying on what, where the pain is at the moment. And my hands are killing me typing on this phone! So needless to say, I wish that there was more research on this disease, and their partner diseases. I wish insurance didn’t charge high copays, and make treatments so much more difficult. I wish most my life wasn’t full of pain, it is all I know. I wish I could live like everyone else, do things that most people do, and enjoy a pain free life. But that isn’t my life, it isn’t my fate, and it will never be. So I take the medicine given, get instillations regularly, shots, and a lot of other treatments or surgeries and try not to fall into insane debt, and of course, sometimes pass on treatments because I just can’t afford them! And I try to live my normal life, some days better than others, some weeks lasting longer than others.  But I’m still grateful to the one doctor I had years ago, who gave me relief for about 8 years. I wish I lived there still so he could treat me now.

Thank you for listening to my story, sorry if it’s long, I tried to make it short, but after so many years of struggling with doctors still questioning if I’m a hypochondriac or if I’m really in pain it’s hard to express it shortly. And even with a long history of biopsies and proof, some never believe, until they see for themselves, so they question you every turn they get. I would like to recommend others find a pain doctor to help manage your pain, this way if you have to find another gyno or uro-gyno you won’t suffer in between. I wish more gynecologists would know about endometriosis and listen to their patients. And I wish my gynecologist would try to clear me out inside again so I’d get some relief finally!

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