Bowel endo symptoms/ operations

Hello everyone,

I have severe endo - I was diagnosed approx. 10 years ago. It has been found in various places inc. Tubes, ovaries, bowel, wall of abdominal, Douglas pouch, bowel.

More worryingly, in my opinion, it is also on the tube from my left kidney and I have been told that it is fusing a blood vessel to my bowel (and my bowel is narrow at a particular point - not sure if this has been  caused by end or adhesions from previous surgery's, but that's my current situation).

I have been told that surgery to work on the bowel (including removing a section) would be risky due to the blood vessel. 

My bowel cauaes me the biggest issues. My periid are irregular so I never know exactly when, but my body will lose what looks like a bloody tissue from my bum a few days before my period starts. I'll be in terrible pain and I tend to have flare ups which can put me on the toilet very quickly and keep me there for the next 4-5 hours while my bowel gets everything out in the form of diarrhea, sickness or both. I also used to faint - it hasn't happened for years but a couple of weeks ago it happened again. I also had pain running down my left thigh.

A couple of months ago I had a colonoscopy that confirmed the small bowel issue (my consultants have referred to has a knuckle in the bowel), but showed no other issues/ illness (ruled out anything gastro related like colitis, etc.).

I obviously don't want to have surgery that is going to be extremely dangerous, but it is very hard work living with these symptoms as they can be unpredictable and affect my ability to get into work. A lot of the time i just feel like my life is on hold. I take great care with my diet and have cut out so many things, but I still have these issues (which I think relate to hormone levels during ovulation and my period). 

To complicate things we have been trying to conceive via ivf (my symptoms were a little lighter, but I did have instances of the issues above during that entire process). After getting OHSS we were forced to wait and have a frozen cycle - unfortunately my lining was not thick enough to return an embryo a couple of months ago.

I am currently taking a break from all that after a tough year. I am back at the consultant next week and I have lots of concerns:

- With the issue with the bowel/ tube to the kidney: is my end getting more aggressive? (and is the ivf treatment advancing it at a rate that is detrimental)

- Should I be worried about placing an embryo back and will the pregnancy cause additional complications with my bowel?

- Will my symptoms every improve and what's the best way to make that happen?

I know that these are questions that women and their families on this forum ask all the time as this is such a painful and frustrating condition!

I know all of our journeys are different, buf I wondered if anyone on here can relate to my symptoms and has any advice about what to ask next week or how you might have dealt with a similar experience?

Thanks

2 Replies

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  • Sounds like you are going through it, unfortunately I don't have any answer for you but thought I would say welcome, 

    You are being seen at a bsge centre???

  • Thanks and yes I have been for the past 6-7 years.

    The ivf treatment is not under my consultant though and is taking place at a hospital closer to us.

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