Can Endometriosis affect the Sciatic Region?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

87 Responses to Can Endometriosis affect the Sciatic Region?

  1. Gisela says:

    I can only say “Thanks”.
    Now I can fully understand why my sciatic nerves have been affected by my endo causing me problems to walk and several days stuck to bed, stiff…
    Sorry my english is not so good to express my thoughts…

    • endoadmin says:

      We are glad it helped a little! Please let us know what else we can do to assist you.

      • Rhonda says:

        I can’t believe it! I have been dealing with Endo. for more than 23 years. had 4 laporoscopys ( one with the uteris connecting the bladder. Witch the doctor thought I was crazy for thinking the bladder pain was from endo.) Now I have ben hospitalized with sroke like symptoms. My whole left side from my head to my foot is in pain and go limp. I can walk but I hve to drag my left leg as my left arm is just hanging there. I have pain on my left side of my head and my eye and face droop. I am exhausted and have a hard time breathing. It is like Endo is on my left lung squeezing it. All this happens off and on within two weeks of my period. (Lately it has gotten worse and more often.) My talking gets slurred or I say words that I don’t mean to. They ran a ton of scans, Mri’s & MRA’s and nothing showed up but spots on my brain that could be from small strokes. Well the Insurance wanted me out of the hospital so they gave me the diagnosis of migrains and sent me home. Every time I tell them that I think that it is ENdo. they laugh or tell me that it is impossible, or that I have been on the internet too much. From reading this I am going to get me some help before it is too late! Thanks for your site! Is there any Endo. surgions closer to Memphis TN.
        I need to see one that does endo surgery right! I already checked out Dr. Seckon in New York and Dr. Cook in California,but they are a little too far.I really liked Dr. Cook’s help with getting the whole body well naturally to help after the Endometreosis removal. Thanks again for your help!

        • endoadmin says:

          We are very sorry to learn of your ordeal. We are not far from TN and would be happy to help if we can. You can also discuss your case with Dr. Dan Martin in TN. We hope you find help and relief very soon. Please let us know if there is anything we can do for you.

        • Steph says:

          Dr. J. Paul Gray is in Jackson, TN! I live in Memphis and travel to see him because he is wonderful at what he does. His endo treatment is leaps and bounds ahead of mainstream doctors. Best of luck to you!

          • Rhonda says:

            I would rathere wait and see a specialist instead of seeing another regular OBGYN. I have the paper work on the way to your office to hear from Dr. Sinervo. I hope ya’ll can help me!

          • endoadmin says:

            Looking forward to hopefully being able to help!

  2. Gillian says:

    What kind of medical therapy can I do for this sciatic pain if I am unable to have surgery at this time? I have not been checked for sciatic endo but I do have just about all of the symptoms listed.

    • endoadmin says:

      You can try any of the common ones, ranging from GnRH agonists (Lupron, etc.) and synthetic progestins (i.e. Depo Provera, Mirena) to combination oral contraceptives or GnRH antagonists (e.g. Femara). There should be an understanding before undertaking any hormonal regimen that no medication is curative for endometriosis in any manifestation, and all have potential side effects (some very negative and long-term). However, with proper counseling, any of the stop-gap hormonal measures may ‘buy some time’ till proper intervention can be rendered.

  3. Brittany says:

    I was diagnosed with endometriosis in 2008, but struggled with sciatic nerve pain and terrible pelvic pain since 2004. I had 4 surgeries total. The second was with a specialist who discovered endometriosis growing on my sciatic nerve roots. It was such a relief to get it off of my sciatic nerve! I no longer have constant sciatic nerve pain, but the scar tissue that has developed there and the endometriosis that was there for so long did leave permanent damage. I can’t lift heavy things or sit/sleep on anything hard without my sciatic acting up. If only my regular doctor and gynecologist were trained to know the symptoms of endometriosis and the fact that it doesn’t just occur in the pelvic region, I might not have to suffer with permanent sciatic nerve damage. Thank you for this post. I hope it helps woman who are suffering from sciatic nerve pain and endometriosis.

  4. erica says:

    my doctor told me i was a liar… exact words. he said my siatic pain had nothing to do with my laproscopy that determined i had endometriosis stage 3…. i knew it spread, also to my diaphragh… no one would believe me… this is the article i needed to know that im not crazy im not crazy one bit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    • endoadmin says:

      Thank you for sharing your story. Calling patients ‘liars’ when they narrate their pain is never going to close the gap on this disease. We are very sorry for what you’ve endured. Good luck to you and let us know if we can ever help.

  5. K.w. says:

    This is unbelievable. Thank you for posting this article. I have had siatic pain for years, and a very severe case of endo. Doctors said there wasn’t a correlation between the two.
    I am unable to take any kind of hormone treatment for my endo, and have been unable to find a doctor who wants to explore other options. I have only found doctors in Hawaii (where I live) who focus on fertility rather than relief from symptoms. I will continue to follow your website in hope of finding other options!

    • endoadmin says:

      Thank you so much for your feedback and sharing your story! We greatly appreciate it. We are unaware of any specialists in Hawaii, unfortunately, to whom we might refer you, as it is such an area of isolation. However, the AAGL.org site has a physician finder comprised of minimally invasive gyn surgeons (though this does not indicate that they are endometriosis specialists per se), which might be a helpful starting point for you. Good luck and hang in there!

      • KW says:

        Wow that was so quick! Thank you for responding.
        Do you know of specialists on the West Coast? I’m at the point where if I need to travel to see a specialist I will.
        Thank you so much.

        • MMS says:

          You may also try Dr Andrew Cook in Los Gatos, California … He is at Vital Health Institute. Advanced Endometriosis Specialist. My friend used him, FYI.

  6. Lynfa Williams says:

    Hi, I have stage 4 endo with a frozen pelvis and have had 2 laparotomies and 14 laparoscopic surgies. My surgeon is known as the best for endo where I live in west wales but he now wants me to have a full hysterectomy with a 80% risk of me loosing my bowel and a 40% risk to damage to my bladder. I have said now for 5 years that I have constent pain in my hip bones and pain that radiates down my left leg and even though he has said it could be endo he has never mentioned it could be on my siatic nerve or the problems it could cause if left untreated. I am seeing him next month and will be taking this information with me. I can’t take hormonal treatment as it just makes my endo worse and I have tried a few. I am on Fentanyl patches for the pain after trying so many other pain meds and now even this is starting to wear off and I am on the max 200mcg. What would you suggest I do next as I really do not want the hysterectomy with all the risks and it might all be for nothing if it returns. Thank you for you post it sure has made me rethink on a few things

    • endoadmin says:

      Hormonal treatments are merely stop-gap measures that do not actually treat the disease, and in cases where hysterectomy is warranted, it is critical to also remove all disease or the symptoms will recur. It may not even be necessary at all to remove the womb and the patient’s wishes should be respected to that end as the priority for the treatment direction. Talk with your surgeon about physical therapy and other possible non-invasives that may help you in the interim and buy you some time before another surgery is indicated. If you are not comfortable with the recommendations you are receiving, there is always another opinion out there you can obtain in W. Wales or the surrounding area. Also check w/the UK Foundation at http://www.endometriosis-uk.org/ for additional referrals and support. Good luck and best wishes!

  7. Murielle Cera says:

    Thank you for your valuable information. I too was diagnosed with Endo 10 years ago, I now am 47years and living in Australia. I have been having sciatic nerve pain since then and not fully understanding where it came from. Well now I do. I still have Endo pain regardless of over 9 surgeries and a Bowel op due to a blockage because of it, full menopause since 7 years, osteoporosis, osteoarthritis together with the nerve pain. Thank you for your article which has been a huge help. I’m somehow trying to wrap my head around all this info, which we didn’t have 10 years ago. And yes, WE ARE NOT CRAZY AND IT’S NOT ALL IN OUR HEADS. It’s real and we are living proof of it and we are SURVIVORS!!

    • endoadmin says:

      Thank you for sharing your experiences and story. Most assuredly it will help countless others who come behind you to read this information. We’re glad you’re with us, and no, you and all other endo gals are certainly not crazy…the pain is in your pelvis, not your head!

  8. NM says:

    This is such a relief, my back doctor has been very open to my questions about the relation of endo to my sciatic pain but she has very little knowledge of it. I have had 3 lap surgeries for endo & the last 2 times there were adhesions to my right pelvic bone & muscles but that doctor was not “big into endo” (her phrase) so I need to find a specialist in Indiana.

    Would it be possible for you to recommend any that are NOT fertility doctors, our insurance is from a non-profit org who will not cover treatment, appointments or procedures by this branch of medicine. This has nearly strangled my treatment & physician options since the majority of people relate endo to fertility vs pain. I would appreciate any suggestions. Thank you!

    • endoadmin says:

      Fertility treatments and quality endometriosis treatment are often opposed to one another, as most REs wish to medicate and jump to IVF while endo surgeons prefer to remove and treat the disease itself. In Indiana, we are not aware of any excision surgeons, but there is a link a few posts up to a group that shares referrals for quality surgeons; perhaps they can help find someone locally. We’d also be happy to assist to any extent that we can. It sounds like your doctor is caring and compassionate, and that is certainly half the battle. Good luck and feel better soon!

  9. Josie says:

    This is scary! All these time I was thinking that my lower back pain was caused by my lumbar spondylosis and mild scoliosis. It looks like I am in serious condition after all. I just hope I am rich enough to get this thing addressed immediately. Else, I think I’d rather resolve to crossing all of my fingers for hope!

    • endoadmin says:

      While it is possible that other concerns are causing or contributing to your pain, it is important to define what is at the root (no pun intended). Don’t lose hope – see the link we shared in response above to determine if there is a helpful physician near you or let us know if we can offer our opinion/assistance as well. You’re never alone. Feel better!

  10. Jessica Aflick says:

    Last year may 2012 I had my 2nd lap in which the mirena coil was inserted …to follow was 5months of pure discomfort non stop bleeding and much more anyway I got the mirena removed as it obviously wasn’t working for me….but this us where myself and doctors get confused, on removal if the mirena (from 2dayz after) I began experience extreme hip buttock and pains exaggerated my the bitter winter, I returned to my gyn and he said after 2 surgerys no improvement for my endo I would prob need my womb removed as that us the source of my pain as for my hips buttocks legs that was neuropathic, I was referred to phyo and Pilates with no prevail …. I am now 17weeks pregnant and the symptoms of endo have subsudied I’m jus wondering if….any of my symptoms cod of been because of this type of endo I’m really confused and frankly feed up of being a cripple! I no being pregnant dosent help lol but this does kinds make sence….I also suffered for years with low blood sugar laughed at by doctored about having low blood sugars until I found out it wz a symptom of endo :((

    • endoadmin says:

      First, congratulations on your pregnancy! Incomplete surgeries can lead to recurrent/chronic symptoms. Down the road after your pregnancy, you may want to obtain a second/third/fifteenth opinion about other options. If we can help in any way please let us know. Good luck with the remainder of your pregnancy and best wishes!

  11. vered says:

    Omg! thank you so much I allways thought that this pain is an outcome of the laparscopic sugery i had and the c/s or even the Epidoral injection…
    I have it in my left side but just this sunday it started on my right side as well in both cases i cant walk when it happen… :( i guess now is the time to go back to my doctor…
    again thank you!

    • endoadmin says:

      Thank YOU for being here and sharing your feedback! We’re glad you’re with us. If we can assist further in any way, please let us know!

  12. GH says:

    This is so interesting, thanks. I have had a numb big toe for 3 weeks now, I get pins & needles when I walk on it. I have put it down to a compressed nerve and I know it says in the article that it would be on and off but I wonder if this could be caused by my endometriosis? I never get pain from my endometriosis before/during my menstual cycle, I just get pain randomly so I am not really a “normal” case anyway.
    I also have a tingling left arm on and off which sometimes goes numb. My doctor told me I have neuralgia due to shooting pains in my head. Does seem though, that if endometriosis can affect the nerves, it could possibly be this?

  13. Sonnenblume says:

    I am in the same problem, I have one leg one centimeter shorter and 20 degrees of escoliosis but I feel endo adds more pain when my sciatic nerve hurts, then I feel pain in the ovary, the femur head, and all the leg long.

    • Sonnenblume says:

      Thanks for the article!

      • endoadmin says:

        Thank you very much for your kind feedback. We are sorry to learn of your ordeal, however. If we can be of assistance at all, please give us a shout or drop us a line. Feel better soon!

  14. Wow, what an amazing article. This explains the numbness in my legs that goes on longer than my periods and also comes mid cycle. I have asked several consultants why the numbness is there and they have no answer. I have been recording all my pelvic pain, periods and leg pain for a few months now and have a new consultant to see at a specialist endo clinic in September. I hope this consultant listens to me unlike the other 7!!!!

    • endoadmin says:

      Thank you very much, we are grateful for your feedback and wish you the very best with your new clinic. Good luck!

  15. Emilia says:

    That was a very interesting article..! I’ve got a pain like that, but I suppose it is more connected with my loose joints in my spine… but you never know…
    I’m 28. I have been diagnosed with endo in my country, when I visited my gyn.. I’ve got a cyst on my right ovary. It’s there since April 2011. I have been taking hormones for about 9 months and they made it stop growing, but as I would like do have a child, I stopped. It started to grow again, so from 3cm (in April 2011) it got bigger to 5cm/3,1cm (in June 2013). Doctors, here in Scotland where I live don’t seem to care at all… They say: ”it’s not neccessary endometriosis… It may be simple cyst..”. But then wouldn’t it disappear till now?? I don’t know what to do… I wish I had it removed and be able to get pregnant… :(((

    • endoadmin says:

      Thank you for sharing your story. It can be very frustrating and painful to deal with the barriers in front of quality care. We are not aware of anyone in Scotland that may be better suited to help you, but perhaps others can suggest someone for you here: https://www.facebook.com/groups/418136991574617/ And of course, if we can help, let us know. We have treated patients from nearly 45 countries around the world and will always do what we can to assist our friends from all regions.

  16. Virginia says:

    This is such a great article to read. I was just diagnosed with endometriosis in 2010 after complaining about stomach and pelvic pain since my teens. Its been 2 years since the surgery and I am back having pain. I took magaestrol for a year and just couldn’t deal with the side affects. I’ve been told I have a estrogen allergy and may not be able to take birth controls/hormones for the pain. I suffer from leg swelling and trouble moving my lower body, as if its swelling. My doctors have made me feel as if none of this is related and its all in my head. At times I even feel as if surgery is the only option. Are there options, and where can I find a doctor in the VA/NC area

    • endoadmin says:

      Thank you for your feedback and experiences, though we are very sorry to read all of your stories with this disease. Hormones are not effective in the long term, and the disease should be treated surgically to confer longer relief rates. It’s definitely not in your head. Though we are not aware of any similar centers in VA/NC, we are not too far from there and would be very happy to offer our services including a free review any time. Good luck and best wishes!

  17. Anonymous says:

    Amazing Post.many thanks for share… waiting for more.

  18. Sarah Gray says:

    I am pretty sure I’m experiencing this since excisoin.Would a hyst due to adenomyosis address this issue? I meant to ask the dr this I’m not even sure who answers these. Was guessing the lovely heather! I’m planning to have within at least the next 6 months is probably the time frame, that I’m having to deal with ATM.

    • endoadmin says:

      you would guess correctly. ;) i was the one who answered re the adeno…give Doc an email, he’ll be able to chat more personally about your specifics. hang in there!

  19. Erin says:

    Very good article! I was wondering why endo effects the hips so much? During my cycles I feel like someone has taken a bat to my hips and beaten them. Is it nerve problems? Thanks again!

    • endoadmin says:

      Thank you, Erin! That pain may be referred or possibly the result of a secondary concern; we’d be happy to render our formal opinion if you’d like to ever send your records for a free review with Dr. Sinervo or Dr. Albee. Let us know anytime. Best wishes!

  20. Nusuno Karya says:

    i am for the first time here. I found this and I find It truly useful; it helped me out much. I hope to give something back and aid others like you helped me.

  21. Sandi says:

    Really thank you for the post. I have constantly pain from my left side and almost none of the painkiller make me relieve the pain. I have endo since I was 17 and now 26 and still now. I dont wanna take any operation as I think that is not a solution and there is no solution too. My doctor told me that my left side pain nothing to do with my endo. Now, I can prove that. but dunno how to cure and who to trust though.

    • endoadmin says:

      With a history of endometriosis, any pelvic pain can be considered as possible disease (though of course it is necessary to rule out other things). Depending on the skill of the surgeon and his/her knowledge of the disease, surgical intervention followed by lifestyle options (acupuncture, PT, nutrition, etc.) can be very helpful. If you would like us to review your case at no cost, please let us know. Best wishes and thank you for your important comment!

  22. Anonymous says:

    I had horrible hip pain during my 2nd pregnancy but it did not radiate down my leg. “They” told me it was relaxin and I would be fine after giving birth. It left me limping after sitting or sleeping and both positions were extremely uncomfortable throughout my pregnancy. After I gave birth, the pain went away. Now that my cycles have returned I have extreme hip pain on my left side from about a week before my period until after it has stopped. This cycle it seems to be shooting down my leg a few times. I have no known history of endo. I have a history of long irregular cycles but normal bleeding and non painful periods. Could this be sciatic endo?

    • endoadmin says:

      Thank you for sharing your experience, though we are sorry to learn of your ordeal. Though there is no history and your symptoms are not ‘classic’, it may be helpful to work with a gyn who specializes in pelvic pain to determine the cause and render proper treatment whether endo or ‘other’ is responsible. Seek a physician who has a history of treating chronic pelvic pain and start there. We wish you good luck!

  23. Elaine says:

    This article made so much sense to me. I used to get such pain in my chest, It would wake me in the night sweating and my leg pain and veins got so bad but all this was only ever on one side. I then started getting bad pain in my bad and lower abdomen. I have been told its probably endometriosis but how will i ever know for sure. Doctors just fob you off with anything. Its only through the help of websites such as these i can learn more about endo and the more i read the more symptoms match up so i must conclude myself that its endo or save for years to get my own tests etc done.

  24. Michaela Cordero says:

    I had the feeling more than just the pelvic area would be affected with Endo , I just wish it would go away. I feel for all women who suffer with Endo, and I love my boyfriend because he’s been so patient with me through all this, and I’ve only been suffering 24/7 pain for almost 3 years, one surgery – Hysteroscopy for diagnosis, and nothing but pain pills, that surely aren’t helping like I wish they would. All women with Endo, don’t give up hope, it’s very frustrating and unfair, but as time goes, I believe they’ll come up with a cure, just don’t give up the hope, I’m not.

  25. Timi says:

    This is a wonderful article in its depth. However, I still find something more to add to it.
    In my case, endometriosis caused sciatic pain by a different mechanism. I have no reason to believe that my sciatic nerve is directly irritated by endometrial tissue. Instead, my sciatic nerve was pinned against my pelvic bones by the piriformis muscle. In this situation, the sciatic pain only appears in toes and the balls of the feet, because the pinning happens so far down from the discs that usually cause pinning. It appeared in both feet, although more so in the left foot. Why I accuse endometriosis for this is because endo caused the pelvic muscles to tense up so badly that I felt my whole upper body out-of-balance when I walk. And then the sciatic pain disappeared for good when I started hormonal treatment that alleviated the endo symptoms. And this has happened twice in my life. Both times, the sciatic pain disappeared in a matter of few months. So although the diagnosis is not the same, endometriosis is still to blame.

  26. Jane says:

    Very interesting. I am 46 and have only recently been told I have Endometriosis, although I have suffered for years with heavy periods and the other nice symptoms that go along with it! I also suffered from Sciatica from the age of 16. It gradually reached almost unbearable until I had surgery in my 30’s. Thankfully I don’t suffer the nerve pain now, but have to be careful with my back. I had no idea it may have been connected to the Endo. As for the Endo I didn’t know why it took me so long to fall for my second child. I am still suffering. I had some relief with a Mirena, but after 2 years started getting different ailments and after 3 years and a year of not feeling well, decided to have the Mirena removed. I did not realise that my diet was contributing towards it (very sweet tooth and not enough greens) until deciding to see a Naturopath. We are 3 months into treatment, although I am still suffering heavy periods (again) and migraines, but my mix has been changed so we will see. I also swapped to Soy milk, but have since learnt it is also not good for Endo. The Gyno who removed the Mirena offered surgical treatment, but I said I really don’t want to go that route and as I left he said I will be back for another Mirena. I am hoping he is wrong!
    Thanks again for a very informative article.

    • endoadmin says:

      Thank you for your feedback; we greatly appreciate it! If we can ever help please let us know. Thanks for being here!

  27. C.L. says:

    Hello. I recently spoke to a doctor about having the “exact symptoms as described in this article. I also have in conjunction with the pelvic pain, severe back pain, and shooting pain down my leg on the left side; pain in calves and right into my foot. I also have pain down my left arm and hand. It hurts so bad and only comes when I have my period. In other words the whole left side of my body is in constant pain. When I spoke to a doctor he said it was extent rare for sciactic Endo to occur. How can you tell if you have that “type”endometriosis? Would it show up on any MRI? How done get tested?

    • endoadmin says:

      Less common but not impossible at all. There are many reports of sciatic endometriosis in the literature and it may be even more prevalent than data reflects, as it could simply be underdiagnosed. Nonetheless, to the woman who is suffering, how common it is is less important to her than getting relief. Symptom tracking, imaging studies and ultimately surgical intervention are the means for diagnosing and treating it. You may wish to review this article with your physician to discuss further, as well as this study in the literature which discusses use of MRI – http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2011000700032&lng=en&nrm=iso&tlng=en Best wishes to you!

  28. Susie Page says:

    Please could you let me know if you would review my case even though I live in the UK. Also not on facebook so can’t access the list of surgeons in UK that specialise in excision surgery for endometriosis. Please could you let me know if a Mr ANdrew Kent at Royal Surrey Hosp at Guildford in Surrey is on the list? Many thanks, Susie

    • endoadmin says:

      We would be very happy to review you, Susie! Take a peek at http://www.centerforendo.com/getstarted.htm to begin the process. We are not certain about that list you mentioned; you may wish to check with the folks at EndoUK to get some referrals from their team. We look forward to hearing from you again and hopefully being able to help!

  29. Ad Mobley says:

    I have been having sciatic pain for around two years. The pain is so bad that I can not even function at times. Last night the pain was so bad that I could not go back to sleep. I have seen 3 doctors and have been told that a hysterectomy would probably fix the problem, however, I do not want to do this unless it is absolutely necessary. The last doctor I saw did mention endometriosis after doing a vaginal ultrasound. The pain is every other month pretty much and it is on my right side. So, I do not know if it is from endo or if it is my right ovary that is causing the pain. The pain starts before my period and gets worse as I get closer to my period and it lasts even after my period stops. Its like the pain just gradually starts going away and then I am fine thru my next cycle and then it starts all over again. I do not know what to do? I do not want to have a hysterectomy if they are not sure that is going to fix the problem. I am 43 years old and I had a tubal ligation so I am done having kids. I am just not sure a hysterectomy is the answer. I live in texas so I am not sure if there is someone else I should go see.

  30. Anonymous says:

    Hello, just wanted to tell you, I loved this post.

  31. Veronika says:

    About 7 years ago, I started getting severe sciatic pain about 5 days before my period. The bouts would last around 20 minutes, subside for a few hours, then recur. It would go away a couple days before my period, but always come back next cycle. The pain was so severe, it made me nauseous and gave me chills, my leg would drag on bad days, and my low back was spasm-y. I told my obgyn, and he just wanted to give me a script for a painkiller. Next I tried my PCP, and she just said “I find a woman’s cycle changes as she enters a new decade” (I was 37) and this wasn’t any help. I sucked it up, and dealt with the pain for another year, but my husband encouraged me to keep trying. I saw a new female obgyn, explained my symptoms, and she thought it could be endometrial tissue in the sciatic area, but had me get an ultrasound to check for tumors or cysts (it was clear). The next step was to try Lupron, but several of the possible side effects concerned me greatly, and my insurance didn’t cover much, and it was too expensive. I spoke to my osteopath (thinking he could do acupuncture) and he had me take a hormone test. My results were way off (estrogen too low, T too high), and he suggested PCOS was the cause of the imbalance. I went back to my obgyn, she concurred, and put me on the pill for the PCOS. Amazingly, the next time I had my period, the sciatic pain was far less severe. The next cycle, it was completely gone, and I haven’t had any problems with my leg dragging anymore (and my PCOS is under treatment with an endocrinologist). I don’t have a definitive diagnosis of endo, but this article gives me hope if the pain starts again, I’ll have something to suggest, and a place to start.

    • endoadmin says:

      Thank you so much for sharing your story and experiences. We certainly wish you well and hope you find speedy resolve; if we can be of any help at all, please reach out!

  32. Anonymous says:

    Fantastic job. With thanks.

  33. Anonymous says:

    Lifesaving information! I have been worrying for months about what is going on with me! I had u/s on Friday just gone and am waiting for specialist appointment in November but am now going to be armed with information that I am SURE explains what is happening! THANK YOU!!!

  34. Franklyn says:

    I simply want to say you have remarkable content. Kudos.

  35. Anonymous says:

    Just desire to say your article is as astounding.Thanks a million and please carry on the rewarding work.

  36. Leanne says:

    This is what I needed to see I have dealt with pain that no one can explain for four yrs. I just don’t know what to do at this point. My doctor suggested it was endometriosis because my pain was cycled with my menstral and ovulation and ordered lap surgery but found nothing but since then the pain has got worse unbearable. My pain started with just my left leg when it started four yrs ago but to day I have pain that starts at my butt/back and wraps around my pelvic and in to both upper thighs with my thighs being the worst pain. I don’t jus have pain around my period it’s also when I’m ovulating but now my doctor says he thinks I should give physical therapy another try but I did that for six months with no improvement please help I’m 24 and don’t feel like anyone understands my pain I almost feel like my doctor thinks I jus don’t tolerate pain well and blows it off at normal menstral pain I feel lost

    • endoadmin says:

      Dear Leanne, thank you so much for taking the time write and for sharing your story so bravely. Our heart goes out to you, and we would welcome an opportunity to help if we can at all. If you’d like, we’ll gladly review your records for free and you can speak to Dr Sinervo about his impressions. Just follow the steps at http://www.centerforendo.com/getstarted.htm. Please let us know how we can assist you. Wishing you health and wellness, CEC

  37. Lilly says:

    I have suffered from sciatica in my left leg since 2004. I started charting my pain and realized it took on a cyclical pattern. before it descended down my leg but now it is more localized in my buttock. it is actually tender to the touch and excruciating few days before my period and lingers through the period. I had an MRI and the radiologist said that i had a herniated disk which I and the neurosurgeon to whom i was referred completely rubbished. i thought i could see a cyst like artifact on the films but i didnt want to think that i was imagining things. Also, I think it does matter when the MRI is taken. I am in so much pain. I have taken so many NSAIDS and have now developed an Ulcer, which has now limited what I can eat without stomach irritation. I am hoping that if I get pregnant, I will have temporary relief. But the stories that I have seen worry me about the damage and its long term effects.
    I would like to know an alternative OTC painkiller for now. Hormonal treatment is off the table for now.
    Secondly please help me find a specialist in the Boston Area.
    Thank you for all you do to help Women.

    KK

    • endoadmin says:

      We wish you well and hope you feel better very soon! That’s no way to live, and we’re so sorry you’re suffering. We do not know of anyone who solely excises in Boston (only folks who use hormone therapy), but if can you travel, you may want to undergo a consult with Marty Robbins MD in Maine. Hopefully he can help. We’re always here too if your plans change and you find yourself able to come to ATL. Wishing you the best!

  38. Yvette Limas says:

    I’m going to have a pelvic ultrasound for me endo. Does it
    Even show up on the ultrasound? I’ve been taking birth control
    To help the sciatic pain that I’ve had, and it has helped greatly!
    Is it only temporary? Am I going to need surgery?

    • endoadmin says:

      Dear Yvette, thanks so much for your post. It is unlikely endo will show up on the ultrasound, but that diagnostic can help rule out other concerns. If you’d like, we can review your case for free, and make some suggestions for your treatment. Just visit http://www.centerforendo.com/getstarted.htm and follow the steps there. Don’t give up; you’re never alone! Fondly, CEC team

  39. Katherine says:

    It is great to read this, I saw Dr. Sinervo for excision and he and his staff were excellent in their care and compassion. I had my surgery in the beginning of January and was blessed with several completely pain free months. Unfortunately I am having problems and pain in an related to my sciatic and piriformis muscle and have been going to physical therapy for a 7 weeks and my therapist suggested that something continuously is disturbing the piriformis muscle and not allowing it to stretch and loosen up. I also have an blood filled cyst on my right illiac crest and had problems with cysts and pain with my right ovary. Is it possible that my endo is causing these problems? The only time I have ever experienced relief was after my surgery with Dr. Sinervo ( I am still confident that I am far better off now then when I had the surgery) but my pain day to day is so severe I cannot sit, sleep or stand for more than a few minutes without crushing pain. I am only 24 and am doing my best not to lose hope but it is an everyday struggle.

  40. Katherine says:

    *mistake in the above comment I meant to say I am still far better off now than before my surgery at CEC.