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.
Thank you Henci for bringing this “secret” complication to light. Those of us active in ICAN (International Cesarean Awareness Network) have known about incisional endometriosis for years….many of us suffer from it to varying degrees. I would have to say, even though my knowledge is “anecdotal” (and thus suspect) that this is a problem that doesn’t seem very unusual or rare at all.
Gretchen Humphries
Advocacy Director, ICAN
advocacy@ican-online.org
http://ican-online.org
I had a friend who had a cesarean for her first birth–her Dr. broke her water to induce labor, and a couple of minutes later she was spilling blood all over the bathroom floor as her placenta started abrupting.
Shortly after the birth she began suffering from endometriosis. She said that it was so bad when she was ovulating that she would cry from the pain. She started taking hormonal birth control to supress her ovulation (and because it tends to reduce the growth of the rogue tissue) because of this. But the really sad thing was that when she was ready to conceive baby #2 (and then #3), well of course she had to go off the birth control. And have sex when she was in intense pain. She said that it was hard for her husband to even do his part…because its not like having your wife fighting back tears is particularly “arousing.”
I have been thinking: maybe ICAN (International Cesarean Awareness Network) could survey its members about chronic pain after cesarean. It would be interesting to know how long ago women had the cesarean–I’d suggest limiting the survey to at least 6 months out–how often women were experiencing pain, how severe, how much it interfered with their daily lives, how much it affected their sex lives, and whether it was new onset or an old problem that the cesarean (or accumulating cesareans) made worse. It wouldn’t be scientific because ICAN members are a self-selected group of women who would be more likely to be dissatisfied with their cesarean, and survey responders would be more likely to be women experiencing pain. Nonetheless, it would definitely be a step in the right direction of revealing this hidden burden of cesarean surgery.
I have had 2 c sections, 20 and 16 years ago. About 5 years after my second one I began having pain any time I engaged my abdominal muscles during my cycle. Over the next 2 years the pain increased during my cycle to having extreme pain on slightly bumping my abdomen, bending, stretching, shooting/pinching pain…really just any use of my abdomen during my cycle. Then the worst pain began occurring during the next two weeks after menstruation stopped. As the years have passed it has progressed to pain most of the time and I have to take Aleve most days to be able to function normally. Could I get some feedback on how successful surgery has been for others with this same problem?
I have 6 studies that looked at recurrence rates. All together, they comprise 101 cases of surgically treated post-cesarean endometriosis, and 5 women had a recurrence (5%). In two studies, duration of follow-up was unknown. A third reports an average follow up of 22 months. The fourth, a report of a single case, was followed up for 2 years with no recurrence. In the fifth, follow-up time varied from 5 months to 6 years in the 32 women. In the sixth, follow-up time was not reported, but they say one woman returned for surgery 9 years after the first one after developing a new case on the opposite side of her scar. So you can see that follow-up may not be long enough to establish the true rate of recurrence. It is also possible that some women might have had a recurrence and decided against repeat surgery.
I am a 32 y/o G 2 P 2 s/p C-section 10/2001 for failure to progress and failed forceps / vacuum delivery, repeat C-section 12/2003 w/ bilateral tubal ligation. Approximately 2 1/2 yrs ago I began having lower left sided abdominal / pelvic / groin pain. The pain radiates into my groin / labia area and seems to be cyclical in nature w/ the peak during the time that I ovulate. Treatment has included ibuprofen, Lortab, Birth control pills, heat/ice, Chiro and several injections. I finally saw a surgeon today and plan to have an exploration and scar revision in hopes to uncover a endometrioma and have it removed. If it is not an endometrioma (which would really surprize me) it may be adhesions along either the ilioinguinal or genitofemoral nerves, either way, surgery will be necessary or else continue suffering. The pain I have is intensified w/ sitting and sometimes limits me to laying on my right side. Even as a nurse, I had no idea what “late effects” these c-sections could have on me. I DEFINATELY think more research should be done. It would not surprize me at all if the incidence of scar endometrioma increases as more and more women today undergo c-sections as compared to many years ago.
I think it is a safe bet that more women are experiencing this complication as currently, one in three U.S. women is delivered via cesarean surgery. I hope that you make a speedy recovery from your upcoming surgery and that it resolves your problems permanently.
I have been searching for answers for 7 months now since the cesarean delivery of my first child. My abdomen is still tender to the touch, I have constant pain and now realize the absolute debilitating pain comes with ovulation and my period. I was always healthy with a normal cycle up until now. I fear it may be adhesions and more than once thought perhaps it’s endometriosis. When I asked my OB/GYN, she replied “Why would you suddenly develop endometriosis?” Well, because you cut my uteris! I have undergone many series of tests with no results. The doctor’s say they are puzzled but just leave me feeling it’s all in my head. This is the time I should be cherishing with my baby girl, but most times it’s Daddy, or Grandma’s who have to take care of her because Mommy simply cannot.
I am so glad I found this information. I will be armed with it at my next doctor’s appointment!
i’m glad i stumbled upon this website. i’m convinced now i need to make an appointment with a general surgeon and plead my case.
it’s been 4 months of GP visits, and gyno visits, and 2 ER visits. it’s been 3 CTs, a pelvic ultrasound, and a colonoscopy. the best diagnosis anyone’s managed is “irritable bowel syndrome”, even though i keep insisting that my pain is not affected by food or bowel movements.
the missing piece, i think, is that my external c-section scar doesn’t match my internal one. it’s a transverse bikini scar on the outside, but an old school classical on the inside. the chronic pain i’m suffering from is well above the bikini scar, but within the area of the classical vertical cut on the inside.
the pain is debilitating and i’m tired of doctors shrugging and telling me i need more fiber. this thread has convinced me i need to demand a laproscopy, because all the imaging tests have shown nothing so far.
thanks for info.
as far as research goes, doctors at research hospitals need to get new mothers who had unplanned c-sections to sign on to long-term studies that only involve checking some “yes” and “no” boxes on a postage paid card every six months or so. i really think there is something to this…and that there have been many misdiagnoses.
did you see the doc yet? any word?
@Denise Vokey
@Monique
I see my doctor tomorrow. Fingers crossed. Am thinking about an MRI. Would that show more? Will post more later.
@Denise Vokey
Please do let us know how your doctor visit goes. I’m so glad this thread is here for you and Monique to find each other, connect, and share your experiences.
@Amy Romano
I saw the doctor yesterday. I was in huge pain when she walked into the office. She seemed stunned at my discomfort. I mentioned endometriosis, she agreed it could be an explanation. I then asked about an MRI, she said it may show something, but would be awhile to get an appointment (I live in Canada where public healthcare is great, but can mean wait times). I said I was willing to go to the US and pay for a private clinic. She was shocked at my determination! She is going to check with radiology here first to see if she can speed up the process. She also gave me a prescription for the pill. I did give her a note with this web address, another that I found on this subject and the web address for the MRI clinic I was looking at. She said she will call next week. Once again, I wait!
Check out http://www.lifeaftercesarean.blogspot.com
@Denise Vokey
I am following your story too. Please continue to keep us posted. I would be happy to know that my post had helped you on the way to obtaining relief from your problem.
@Victoria Buchanan I have been going to my family practice doctors for two years after first and only c-section for constant abodominal pain. Finally they referred me to an OB/GYN. Nothing has shown up on my CT’s or ultrasounds, however, after finally undergoing a Laporascopy, the doc found endo and everything is adhered to my abdominal wall. My OB right now, will give me the choice to resolve this with either hormone treatment and/or further surgery. I have been told that further surgery was really the only way to correct the situation. Any comments or advice?
I am not a clinician, but it would seem to make sense to try the less aggressive treatment first (hormones) and resort to surgery if it doesn’t help–or at least help enough that you are willing to live with the problems that remain.
I am going to start on the pill tonight. I will see if it does have an effect, especially if I’m no longer ovulating. A colleague of my husband, who is an MD suggested a lap is really the only way to go. We will give the pill a shot first for 3 months. It will be 9 months this week since my section and there are still times I am convinced that my incision is going to burst open. I’m sick of this.
I hope this works for you and that your husband’s colleague is wrong in your case. Let us know how it goes.
Well, it’s been a couple of months on the pill. Some side effects, but still pain. Having a laparoscopy in a couple of weeks.
Thanks for the update. We’re pulling for you. Please keep us posted.