Bowel endometriosis

[Siothew12]

Hello,

I was diagnosed with endometriosis of the bowel at 24 and at age 25 I had my bowel shaved. I’m now 29 years old (not yet had children but do want them in a couple of years time) and after another laparoscopy, I have been told I require an anertiror resection of the upper bowel and that the endometriosis is on the wall of the vagina. I’ve been told the bowel surgery is likely to lead to a temporary or permanent stoma (I can cope with this) but the surgeon has also said this combined with removing it from the vagina wall, is very complex surgery and there’s a 30% chance that once I have the surgery I won’t be able to get pregnant naturally as they may well damage the cervix during surgery. They’ve told me my ovaries are clear and at the moment they’re not concerned about my fertility cause most of the endo is on or in the bowel. My thoughts are that 30% chance of damage to fertility is quite high especially as I am not aware of fertility being an issue at the moment. I’ve now got to make a decision about whether to have the surgery or not. I don’t know what to do because I do want to have children and now that fertility has been included in the mix I feel that is my number 1 priority. Do I just cope with the ibs like symptoms and painful period bum paid and not have the surgery? Has anyone been in this situation before?

Many thanks x

[Rbdcrlm]

I'm interested in following this post. Sorry you haven't had any replies yet. I am two weeks out from undergoing a rectal resection. It will be my first surgery for endometriosis as I was diagnosed via a colonoscopy. I have had painful periods and excruciating stabbing pain when having a bowel movement during my period since I was 15 (now 29) but got the classic brush off and placed on contraceptive pills. I started bleeding rectally and been in near constant pain since May 2018 which is what prompted me to go to Dr again, originally they thought Ulcerative Collitis which is why they did a colonoscopy... But obviously turned out to be endo!!!

I am lucky in that I only have a 10% chance of having a temporary stoma and 20% of bladder paralysis leading to temporary self-catheterisation, but unfortunately I can't help you much with the vaginal aspect of things as my surgeon won't know exactly what to expect until he goes in there like a typical diagnostic laporascopy.

Can you discuss egg freezing or embryo freezing (if you have a partner or want to) prior to surgery as a back up? Being 29 the fertility side of things is what concerns me the most too. Like you, I can deal with the stoma or bladder problems, but the impacts on fertility are a little raw, aren't they?

I guess my only advice is to weigh up whether or not you can ignore the pain enough to try immediately for a pregnancy or if the symptoms are impacting you too greatly to be ignored. For me, I can't ignore the bleeding or pain any longer, so surgery won at this point in time.

Good luck. If you want, I can let you know how surgery went and if I had any complications. Xx

[Siothew12]

Hello,

Thank you for your response.

In relation to the egg freezing, they won’t suggest that for now because my ovaries, tubes etc appear to be in tact. If I have the operation, they might damage my cervix which is where the sperm travels so egg freezing wouldn't really solve anything in my case.

I’ve since spoken to the surgeon in detail about the risks of having surgery and not having surgery. The surgeon has said I will ultimately need surgery because the endo will cover my bowel more and more over the years which could result in me not being able to pass poo at one point. They also however confirmed that when they shaved my bowel before, they made the bowel wall thin which is why the endometriosis has now actually got into the bowel.

I’ve made the decision to pay for a private women’s hormonal health dietician and am seeing her at the end of the month in order to avoid surgery for now and manage it through diet, herbs, vitamins, acupuncture and massage. It will also mean that my partner and I will have to look to have kids sooner than I would’ve liked- hopefully I can put this off a couple of years yet!

What was interesting was that the surgeon told me that a hysterectomy wouldn’t solve anything for me because the endo was on my bowel and therefore it might never be solved because even with surgery endo comes back.

I hope your operation goes well- let me know how you get on xx