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Do Cesareans Cause Endometriosis? Why Case Studies and Case Series are Canaries in the Mine

Editor’s note: This week brings us the first contribution from Henci Goer. Henci will be a regular contributor to Science & Sensibility, and continues to respond to reader questions on the Ask Henci Forum. – AMR

I was pulling together studies for the chapter on cesarean for Amy’s and my new edition of Obstetric Myths Versus Research Realities when I ran across an e-mail in my files from Carol Sakala of Childbirth Connection containing some citations on case reports and series about endometriosis developing in the cesarean wound. When I followed up on them, I discovered that the obstetric literature is peppered with these reports.

This is no trivial problem. Women experienced cyclic pain, which could begin—or at least become severe enough to seek treatment—anywhere from months to years after the delivery. In rare cases, the consequences were catastrophic: there were reports of uterine wound endometriosis that caused intractable hemorrhage leading to hysterectomy and cases where endometriosis devolved into fatal cancers. Authors agreed that endometriosis probably developed from cells from the uterine lining being seeded into the wound during the cesarean surgery, a theory bolstered by most cases occurring in women with no history of endometriosis. They also uniformly agreed that the only effective treatment was wide excision of the affected tissue. Sometimes surgery was so extensive that it required grafting. Doesn’t that sound pleasant? Some series authors reported rates in their populations, which ranged from less than 1 to 5 per 1000 women with cesareans, but this is almost surely an undercount, seeing as cesarean wound endometriosis can develop years later, not every woman would seek medical attention, some would not be correctly diagnosed, and some would decide against treatment once they heard the cure. As the authors of one case series wrote, “Invariably, on discussing the topic with colleagues, each clinician can recall one or more personal cases of his own” (p. 94) (Wolf 1989), and that, of course, wouldn’t include the women who were suffering in silence.

So why is this reasonably common serious adverse effect of cesarean surgery something you have never heard of? At least, I hadn’t, and keeping up with the med lit on these things is what I do. The answer lies in what “counts” or doesn’t as worthy evidence. Cesarean wound endometriosis would never turn up in a randomized controlled trial (RCT). Even if the problem made it onto the researchers’ radar, the trial would have to be extremely large and follow-up impractically long to detect it. Where RCTs are considered the only evidence worth having, outcomes that cannot be picked up on by RCTs functionally don’t exist.

“But,” you say, “we now have some excellent large-scale prospective studies and database analyses of postpartum morbidity according to mode of birth. Why hasn’t cesarean wound endometriosis shown up in them?” Prospective studies depend on what outcomes investigators decide ahead of time to look at and databases are limited to the information collected in them. You don’t ask the question; you don’t get an answer, which, again, renders cesarean wound endometriosis invisible.

The moral of the story is that different study designs are good for different things. Case studies and series may be the humble bottom of the evidence pyramid, but they are the only design that can alert us to serious adverse outcomes that demand more investigation. Now you know about this one. Spread the word. Someone in the research world may be listening.

Click on the extended post for the bibliography. 

References 1989 and later (there are earlier ones I didn’t retrieve)

Bumpers, H. L., Butler, K. L., & Best, I. M. (2002). Endometrioma of the abdominal wall. Am J Obstet Gynecol, 187(6), 1709-1710.

Eogan, M., & McKenna, P. (2002). Endometriosis in caesarean section scars. Ir Med J, 95(8), 247.

Gajjar, K. B., Mahendru, A. A., & Khaled, M. A. (2008). Caesarean scar endometriosis presenting as an acute abdomen: A case report and review of literature. Arch Gynecol Obstet, 277(2), 167-169.

Gaunt, A., Heard, G., McKain, E. S., & Stephenson, B. M. (2004). Caesarean scar endometrioma. Lancet, 364(9431), 368.

Gunes, M., Kayikcioglu, F., Ozturkoglu, E., & Haberal, A. (2005). Incisional endometriosis after cesarean section, episiotomy and other gynecologic procedures. J Obstet Gynaecol Res, 31(5), 471-475.

Kafkasli, A., Franklin, R. R., & Sauls, D. (1996). Endometriosis in the uterine wall cesarean section scar. Gynecol Obstet Invest, 42(3), 211-213.

Kaloo, P., Reid, G., & Wong, F. (2002). Caesarean section scar endometriosis: Two cases of recurrent disease and a literature review. Aust N Z J Obstet Gynaecol, 42(2), 218-220.

Leng, J., Lang, J., Guo, L., Li, H., & Liu, Z. (2006). Carcinosarcoma arising from atypical endometriosis in a cesarean section scar. Int J Gynecol Cancer, 16(1), 432-435.

Luisi, S., Gabbanini, M., Sollazzi, S., Calonaci, F., Razzi, S., & Petraglia, F. (2006). Surgical scar endometriosis after cesarean section: A case report. Gynecol Endocrinol, 22(5), 284-285.

Minaglia, S., Mishell, D. R., Jr., & Ballard, C. A. (2007). Incisional endometriomas after cesarean section: A case series. J Reprod Med, 52(7), 630-634.

Olufowobi, O., Sorinola, O., Miller, S. J., & Condie, R. G. (2003). Scar endometrioma: A cause for concern in the light of the rising caesarean section rate. J Obstet Gynaecol, 23(1), 86.

Patterson, G. K., & Winburn, G. B. (1999). Abdominal wall endometriomas: Report of eight cases. Am Surg, 65(1), 36-39.
Phupong, V., & Triratanachat, S. (2002). Cesarean section scar endometriosis: A case report and review of the literature. J Med Assoc Thai, 85(6), 733-738.

Sholapurkar, S. L., Sharp, N. C., & Hirschowitz, L. (2005). Life-threatening uterine haemorrhage six weeks after caesarean section due to uterine scar endometriosis: Case report and review of literature.  N Z J Obstet Gynaecol, 45(3), 256-258.

Wicherek, L., Klimek, M., Skret-Magierlo, J., Czekierdowski, A., Banas, T., Popiela, T. J., et al. (2007). The obstetrical history in patients with pfannenstiel scar endometriomas–an analysis of 81 patients. Gynecol Obstet Invest, 63(2), 107-113.

Wolf, G. C., & Singh, K. B. (1989). Cesarean scar endometriosis: A review. Obstet Gynecol Surv, 44(2), 89-95.
Zhu, Z., Al-Beiti, M. A., Tang, L., Liu, X., & Lu, X. (2008). Clinical characteristic analysis of 32 patients with abdominal incision endometriosis. J Obstet Gynaecol, 28(7), 742-745.

Different Methods for Different Questions , , ,

  1. avatar
    maka
    June 7th, 2011 at 16:06 | #1

    Hi there. I found out a lump on the left edge of my CC scar about month/two after cc and a cyclic pain appeared. I went to GP but she said that this is normal after CC and my nerves are start work in that area. I felt that this is not normal. I asked for the same a months later another GP, two months later again and again asking if they can make specialistic test to check if is not endometriosis (as I’ve been reading about it)-all of them refused telling the same fairy tale. A year later one more clever GP send me finally to Gyn but it took ages to see finally doctor and he said ( a doctor from endometriosis clinic in good hospital in centre of London) that he does not have idea how to check if that is endo in cc scar and he has to consult with other doctor. Took another ages to see a head of endo clinic and I had MRI. My MRI test result disappeared!!! Such a mess!Anyway-I requested to have a surgery to remove this tissue and I am going to have surgery on 30 June! Even head of this clinic seems to have no clue what to really do with that and what it is what fulled up me with fear now.
    My lump is almost under the skin. A day before and during menstruation bleeding is getting much bigger and very painful that I am not able to touch the skin around, every move makes bigger pain. I need to mention that no one check my lump during bleeding even I suggested to do.
    Doctors should have more seminaries about endometriosis in cc scar.
    One more-during a laparo a year ago they found a some endometriosis behing my uterus but they did not removed :(

  2. June 8th, 2011 at 10:58 | #2

    Yes, they should. I’m in the middle of updating the cesarean chapter for the new edition of Obstetric Myths Versus Research Realities, and when I ran a search on “cesarean” and “endometriosis” in PubMed, the gateway to the U.S. National Library of Medicine, I found that there are *hundreds* of cases of cesarean scar endometriosis reported in case series and reviews. In fact, if you are concerned about your doctor’s knowledge on this issue, e-mail me at goersitemail@aol.com, and I will be happy to provide him papers on the diagnosis and treatment of this all-too-common complication of cesarean surgery.

  3. avatar
    kayla
    August 5th, 2011 at 16:25 | #3

    I am a mother of 2 with 1 c-section and 2 amnio’s I got endo in both sites… I just had a hysterectomy at the age of 26 and the next surgery will be even worst since the endo is spreading like cancer and attacking my body. I’m glad that I finally found all these sites to help me, but we suffers need to band together and get this out there for others to know about to.

  4. August 8th, 2011 at 15:38 | #4

    I am sorry that you are going through this difficult experience. Have you searched the internet and social networking sites to see if someone already has? If not, maybe you want to put up a website or Facebook page and see what happens. Let me know if you do. I would be willing to give you a bibliography of research papers.

  5. avatar
    Yvonne Ricketts
    January 9th, 2012 at 05:31 | #5

    I am a mother of 2 and have had two c-sections. The first in 2002 was an emergency section due to a placental abruption. Everything was fine after this then I had another c-section in 2007. I had a drain fitted after for a few days then after release from hospital I got an infection in my scar so had to go back in. After the section I was told there was a lot of scar tissue and if I had another section it would have to be done at 37 weeks to avoid any complications. After this there was a small hole left in the scar which bled with every cycle. After 10 months of this I finally had an operation in which they said they had found quite a lot of endometriotic tissue which they removed. Everything was fine for a couple of years then started to get pain in my scar. I went to the doctor and she referred me to a gynaecologist. I had a tissue scan which showed where the blood was apparently leaking from and where it was pooling. I was told that I could have surgery but advised against it because it would most probably come back, so at the moment I am running my Microgynon packs through and having a period every 3 months so I don’t get the pain as often and was told to take some Ibuprofen to ease the pain. Also, when I do get my period I only bleed for about a day and then nothing, but have the pain for about a week. I’m not sure if I should just carry on like this or try having keyhole surgery as I read this is the best way to get rid of the tissue. I haven’t had this done before because my scar was cut open in the last surgery.
    Its great to read other stories and know that I’m not the only one suffering since a c-section! Any advice would be great thank you.

  6. January 9th, 2012 at 11:46 | #6

    I am not a doctor or midwife, so I cannot give you specific advice, but I can tell you that the authors of all the medical journal articles I have read on cesarean scar endometriosis (also called “endometrioma”) agree that the only curative treatment is wide excision of the endometriotic tissue. Whether that can be done as a “keyhole” surgery is a question for your ob/gyn.

  7. avatar
    sam kelly
    March 13th, 2012 at 09:56 | #7

    hi , i have just been told that i may have endometriosis in my c-scection scar, they have told me that a historectomy is the best option , i feel a little bit unsure as the consultant is not sure if it is that or not, help i am not sure what to do any sugestions

  8. March 14th, 2012 at 11:04 | #8

    @sam kelly
    The case reports and series all reported removing the endometriotic tissue surgically, not hysterectomy. I think your best bet is to get a second opinion from someone not connected with the doctor who is recommending hysterectomy, that is, not in the same office or recommended by this doctor. That way, the new doctor will feel less uncomfortable with disagreeing with the first doctor, and you can feel more confident of the opinion if the new doctor agrees. As for the content of the discussion, in order to make an informed decision, you need to know the benefits and potential harms of all your options, including doing nothing. You may want to get this information from your current doctor as well as the one giving you a second opinion.

  9. avatar
    Stephanie
    April 24th, 2012 at 20:27 | #9

    I have been having pain on my left side – just left of center below bellybutton and straight up and down from top of scar to underside of bellybutton. The pain began after I started menstruating again about 6 months after my c-section. The pain is directly related to my cycle and has been present with every cycle I’ve had since the c-section. The pain is not crampy – it is more of a pulling or strain. I have been to my primary who ordered a sonogram which came back normal with a left ovarian folicle – which i was told was normal and shouldn’t cause pain. My OB agreed and thought that what i was describing sounded more like intestinal problems – she told me that where i was pointing… was not near my uterus. I had inquired at that time about any chance of complication from C-section – or possibility of it not healing properly. she dismissed my questions saying my scar looked fine. So back to the primary and just had a pelvic CT today. that came back with same reading as sono “left ovarian folicle”.
    i am starting to get frustrated – Any suggestions for talking to my OB about this subject… Many thanks

  10. April 25th, 2012 at 11:35 | #10

    @Stephanie
    Clearly you have a problem for which you have as yet no definitive diagnosis. If I were in your shoes, I would want to know what were the possible causes of my symptoms, what had been eliminated by the tests I had already had, and how my doctor planned to go about ruling the others in or out. I would also make sure that cesarean scar endometriosis and adhesions were on the list.

  11. avatar
    Jenny
    June 7th, 2012 at 17:08 | #11

    I had a cc 5 years ago and a second cc 2 years ago. After my second c-section I noticed a tiny ball at the corner of cc scar on my right side. I asked my Gyno and I was given the story that it’s perfectly normal after a csection etc. In the mean time I was laid off work with no insurance so I had to “ignore” what was going on since i could not afford a surgery. My “ball” has since grown and becomes extremely painful during my menstrual cycle. The area becomes very swollen and sensitive as well. There have been mornings where I can not get up from bed due to the excruciating pain. I have cried, I have missed spending time with my kids and even missed work due to the pain. I still don’t have insurance but have worked out a payment plan with my Dr. I have a 3.5 cm endometreosis mass tissue which literally points out of my body. Pants, skirt, shorts, even underwear become painful to wear during my period because it rubs against the ball. My doc put me on birth control which has alleviated my pain a great deal due to the hormones. I hope to have the surgery completed in thenext 2 weeks and begin to have my life back to normal.

  12. avatar
    Kristen
    June 11th, 2012 at 22:01 | #12

    I’ve had 2 C-sections. After my daughter was born, 11 years ago, I started to have pain every once in awhile. I finally narrowed it down and figured out it was always the first few days of my period. Eventually, about 4 years ago, I noticed I had a huge lump on my right side. The pain progressively got worse each month. I went to the doctor and they thought it was a hernia. I had an MRI and was told it was just scar tissue from my c-section. Last year the pain had increased so much, I tried again, going to my gyno- she had them do an ultrasound- thinking maybe it was a cyst or fibroid. The ultrasound technician told me the same thing as the mri- it’s just scar tissue. But, the doctor sent me back the next week for another ultrasound- thinking maybe at a different time in my cycle- maybe something would turn up. It was the same ultrasound tech from the week before and she was not happy to see me. She told me maybe I was causing the pain myself or it was in my head. I was so upset, I never went back to the doctor. I started googling my symtoms- which led me to endo. This last month- the pain was so bad and the time of pain increased from 2 days- to now, over 11 days. I went back to the gyno, but saw a different one, who was on call for my regular gyno. He asked me how long I’d had the pain and I said years- he said if no one had been able to help me, he doubted he could. I felt defeated. He didn’t even want to listen…….But I said something about endo- he told me not likely, he looked at my ultrasounds from the year before and said he didn’t see anything. I told him there was a lump they said was scar tissue and he seemed to pay a little more attention. He told me there shouldn’t be any scar tissue. As he was getting ready to walk out, he asked me if the pain was just around my period- which I explained, again, was right. He said he has only had one patient have endo related to c-sections. As I was getting ready to leave- thinking I was stuck with the pain forever….. He handed me a paper with the name of a surgeon. I saw the surgeon today. He said after feeling the lump he is sure that it is endo. I finally get to have surgery next Monday. I’m hoping this nightmare is finally coming to an end.

  13. June 13th, 2012 at 22:22 | #13

    I am sorry that you have had to go through this dreadful and frustrating experience. I too hope that your nightmare is at an end. I wish you a smooth and speedy recovery.

  14. avatar
    Michelle
    July 19th, 2012 at 06:28 | #14

    Mother of 2, both Caesars, in 2004 and 2006. I’ve had small pain at one end of my scar for a few years now, after seeing my GP, she sent me for an ultra sound, and after a further consultation, it was decided hat I just had an infection and ‘take these anti biotics’. The pain didn’t subside, in fact, I get it more regularly than my period time, and it’s a sharp pain that often takes my breath away and renders me immobile. After extensive Dr Google searches, I found quite a bit of online literature, and took it to the doctor with me. She was hesitant, but referred me to a gyno/ob. I have that appointment today, at which point she could feel the mass (as could I!!) when she pressed around my scar. I am now booked in for surgery to have an excision of that, and the gyno agrees. My concerns now lay in how disfigured my abdomen will be, will there be significant lumps and bumps?? I already loathe the scar, so I’m concerned. Also, what are the chances of it returning. I have quite a large fear of hospitals, more than the average person, and I don’t envisage returning. Nor do I want to go ahead with the operation if it’s only going to return later. Admittedly, life without the pain will, of course, be so much better, but what are the chances of it returning? I have had no previous problems, or endometriosis diagnosis. Any help?

  15. July 23rd, 2012 at 08:00 | #15

    I can’t tell you what the scar will be like. That is a question for your clinician, but the research reports a recurrence rate of 4-9%.

  16. avatar
    Bronwyn
    July 25th, 2012 at 21:00 | #16

    I have a 3.5cm x 3.5cm caeserean scar endometrioma. I am having surgery to remove it next Thursday and was wondering if anyone knew what the procedure was and how long the recovery is?

  17. July 26th, 2012 at 21:45 | #17

    Bronwyn, best of luck for an uncomplicated procedure and an easy recovery. I encourage you to have a conversation with your health care provider in advance in order to have your questions thoroughly answered, provide you with a clear explanation of the procedure and go over the benefits and risks that you may face. Your health care provider is in the best position to explain the circumstances of your specific situation and decisions that affect your options and choices.

  18. avatar
    rosy
    August 19th, 2012 at 07:02 | #18

    @sam kelly
    I have same problem. Just a scar excision followed by gnrh analouge treatment should be sufficient

  19. avatar
    Lucy Fensom
    February 11th, 2013 at 07:23 | #19

    Hi,
    I gave birth nine years ago in Israel to my only child, a boy, and was extremely unfortunate as I had the worst medical team – it has taken me years to try to get over it emotionally and without going into great detail basically I was very poorly treated and ended up being sliced open with a scalpel to perform the caesarean op (I felt all three incisions until I passed out). Obviously I tried with all my heart to tell the Russian anaesthetist but he just said ‘impossible’,in the end I screamed as I no longer cared if I lived or died. When I was woken up almost two and half hours later I was in excrutiating pain both in my lower abdomen and down below. It transpired they’d opened me up to take the baby out but found his little head too far down apparently so delivered him vaginally with forceps and made a mess of the Episiotomy aswell. I later found out that I had started to haemorrage (sorry if not spelt correctly) and they’d had to call out the Head of Department for help.The story doesn’t end there, even my own mother was lied to with regards to how the baby was finally delivered; one of the surgeons kept telling her that it was by C section… Anyone reading this can be forgiven for not believing it as most people struggle to believe it as it is so horribly shocking. Luckily, I am a quite a strong woman, I’ve had to be and I have a gorgeous 9 year old boy, thank God. But now, at age 42, I’ve had the most severe and awful internal pains, feels like crushing and pressure inside me and it’s slowly worsened over the past 10 months or so. Everyt period is utter agony now and bowel movements almost feel like giving birth, they are so painful. I had been to four different gynaecologists (all in Israel) who all said it was a fibroid that I have although it’s only quite small but they said it was the location of the fibroid that was causing all the problems. One was ready to do a hysterectomy, two said leave it and the other wanted to try a myomectomy. Finally I went for a 5th opinion (also in Israel) – the latest doctor listened to my story albeit in shock, he examined me, checked the fibroid and said he suspected Endometriosis and couldn’t believe how every other gynaey had missed it. He said in his opinion he did not think a 4 cm fibroid could be causing all that pain every month and in addition I have the most horrible, strong head pains on a daily basis that even strong prescription medicine fails to help it, I find the head pains the most debilitating thing as I can’t function normally (not sure if it could be a part of Endo? had a CT scan which was all clear) and they are daily whereas all the other pain tends only to be during my period but that is a killer too and I dread getting my period but I would not want a hysterectomy yet. Anyway this latest doctor sent me for blood tests and has since said the results strongly indicate Endometriosis. He has now gone abroad for a week but I will see him again after the 24th but he has said he think he is probably going to have to operate. Thank you for reading and wish all of you all the best, Any opinions gratefully received. Lucy

  20. February 11th, 2013 at 12:41 | #20

    @Lucy
    I am sorry that you have had this dreadful experience. I hope that this new doctor has correctly identified the problem and you are on your way to effective treatment and a complete recovery. I find myself thinking about the psychological impact of what you have gone through. If you are also experiencing emtional fallout, you may find Solace for Mothers helpful. It is an online support group for women who have had traumatic births. The URL is http://solaceformothers.org/.

  21. avatar
    Ashley
    April 28th, 2013 at 18:18 | #21

    I am curious if anyone has filed malpractice suit on this issue? I have had 3 Csections and terrible pain that is getting worse with time. During my last csection the obgyn confirmed tons of scar tissue,which she removed which caused me to loose a ton of blood and I had to have a blood transfusion. I had a Tubal with my csection and was told I would have abnormal painful periods up to 6 months. My son is now 9 months old and I am hurting worse than ever. The doctors in the ER were stumped and I went to my obgyn just to hear her tell me this is something I may have to live with for the rest of my life,it had nothing to do with a tubal,but definitely was from my csection.

  22. April 30th, 2013 at 17:20 | #22

    You may or may not be suffering from cesarean scar endometriosis. Chronic pain can also arise from adhesions (internal scar tissue). I doubt you would have any luck with suing your doctor. Both adhesions and cesarean-scar endometriosis are potential complications of cesarean surgery and are not due to your doctor doing anything wrong. Before you accept your doctor’s “live with it” diagnosis, though, you may want to ask around and do some research to see whether there are, in fact, effective treatments for internal scarring.

  23. avatar
    Ana G.
    April 7th, 2014 at 13:56 | #23

    Hello,
    I’m so happy I found your blog because I’ve been searching for women with the same cesarean risk experience as mine! I’m trying to bring awareness to this cesarean preventable risk and connect with women to hear about their experiences. Soon I will have a website in place sharing my story and the endless research I’ve done that brought me to believe that this condition is overlooked and that there is not enough put in place to prevent it. Because many doctors are not aware of this condition, or simply think is rare which is not, they leave it misdiagnosed for years when the outcome is catastrophic for its victims. Abdominal wall endometriosis is a preventable risk of any uterine surgery such as a cesarean. I’m trying to bring awareness to this condition so I could make my bad outcome turn into something positive for other women!

    My Story
    My incision endometriosis symptoms started right after my cesarean. I was misdiagnosed for 33 months with over 30 doctor visits, by the time I had my surgery to remove the abdominal mass; it was to late not to have a major effect. I had no previous endometriosis and have no endometriosis anywhere else in body and no symptoms, the only endometrioma mass i had was in my abdominal rectus muscle above my cesarean incision site.

    MY OUTCOME – A RADICAL EXCISION OF:
    8 cm – Left Rectus Muscle
    Anterior Rectus Sheath
    Inferior Epigastric Artery
    Vein Complex

    THE RADICATION EXCISION RESULTED IN:
    Rectus sheath was repaired with FlexHD Mesh
    8 cm hollow space where my left abdominal rectus muscle one stood
    The only thing that is holding my intenstines and organs inside the abdomen cavity is a thin layer called transversalis fascia

    WHICH LEFT ME WITH:
    Permanent Cronic – Low back & Buttocks pain
    Permanent herniated stomach
    Can’t carry another pregnnacy
    Incapacitated for anything that requires using your abdominal muscle

    I would love to hear from all of you! My email address is :info@iatrogenicendo.com . You can also join me on Twitter / Facebook @IatrogenicEndo

    I look forward to hearing from all of you!
    Thank you!

  24. avatar
    Rose
    April 16th, 2014 at 11:56 | #24

    I also had incisional endometriosis after C-section. My ob/gyn didn’t want to believe that it was endometriosis, kept saying it was scar tissue. We went back & forth over this for several months because I’d done my own research and found a few cases that fit my criteria. Finally my pain was so intense that I almost couldn’t stand up, and touching the inflamed area was intolerable. Agreed to have him take the “scar tissue” out. He came back after the surgery and said that I was an “unusual case” and that it HAD been incisional endo. The mass had been about the size of my thumb. He’d managed to clean out as much as possible, but now it’s 10 years later and I’m beginning to feel it again.

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