Bowel Endo Surgery - anyone? Xx

Hi everyone.

I've had stage 4 endo for many many years (I'm 30 now). Had one lap 5 years ago when I had a 8cm chocolate cyst removed from right ovary but he wouldn't touch the left side as it was such a mess - ovary attached to my bowel etc - and didn't want to do it without the bowel expert there.

Anyway things carried on, I tried every hormone treatment under the sun, had IVF and had a wonderful now 18 month old little boy. Since then I hadn't been on any hormone treatment as we were hoping to conceive again. However. January 3rd I became very ill. Long story short I ended up with Sepsis due to a tubo ovarian abscess. (Caused by endo) I spent a long time in hospital, piled full of IV antibiotics and had the abscess drained and was eventually discharged. February's period brought the very same problems and I ended up back in hospital again, antibiotics again. March same thing, abscess drained again. Told I absolutely needed surgery but they did not want to do emergency as too risky. April's period took me back into hospital again and have just been discharged yesterday.

Absolute nightmare, waiting on this surgery date but in the meantime every period (which lasts about 2 weeks) is putting me back in hospital. My left tube is blocked and I believe the fluid is getting stuck and this is what is causing the abscess to swell and become infected every month. As well as this, my ovary is attached to my bowel and the infection from the abscess /endometriosis is now in my sigmoid colon. So, it's pretty big bowel surgery. I believe they will have to take out the bad bit and resection it??

If you've managed to read all this way, well done, my question is has anyone had bowel endo surgery? What did they do? Had your endo actually infiltrated your bowel or was it on the outside? And most terrifying of all, has anyone needed a colostomy bag afterwards?

Any words, thoughts, advice, sympathies would be massively appreciated. Love to all

Jo xxxx

6 Replies

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  • Hi, that sounds really tough going! Hang in there sweetie. I am looking at high risk bowel surgery with bowel attached to cervix and am very scared too, it's not as clear cut for me as you as symptoms aren't as extreme just very debilitating. You obviously really need that operation. I have heard stomas let your bowel rest and if you have one they are almost always reversed. It is a big deal but you will find a way x x hugs

  • Hi,

    You poor thing. I really feel for you. I had bowel resection done in 2009. I had endo inside my bowels, inside my bladder. My bowels were stuck to both of my ovaries, bladder. Basically my insides were a mess, my organs were stuck so bad it looked like a faint ball. The NHS surgeons didn't tell me how bad my insides were and wouldn't give me a proper reason to why they wouldn't operate on me. I was fed up and went to my GP and asked if he knew a private surgeon who's an expert with endo. After seeing the private surgeon he did a few scans on me and said he needs to operate on me quickly. I had my operation in 2014. Once I was awake the surgeon told me how angry he was at the NHS surgeons for leaving my insides a mess. I had numerous operation with the NHS to remove endo but they didn't once unstick my organs. The private surgeon removed what he could and unstuck my organs. The operation was meant to be an hour but lasted 5 hours.

    I was lucky I didn't end up with a colostomy bag afterwards.

    I'm due to have another operation to remove more endo from the same places. Due to my bowel resection operation I know suffer with celiac disease and can't drink or eat dairy products.

    Sweety.

  • Have they told you a bowel resection will definitely be needed, or is it a case of they won't know until they start? I had a hyst with bowel excision last month - had a large RV nodule with my uterus firmly stuck to my bowel and they went through all the risks of resection and stoma with me but fortunately in the end they were able to shave the endo off and I didn't need it (though the first thing I did when I came round from the anaesthetic was feel for a stoma bag).

    Please make sure you're being seen at a bsge centre (I'm assuming you probably are, but if not you really need specialist treatment for this sort of endo).

    If you do need a resection and stoma, it can be OK. My brother now has a permanent one for colitis and says life is better with the bag than it was living with the disease.

    I hope you get decent treatment and start to feel better soon. x.

  • Sorry to hear you have been having such an awful time.

    I had a bowel resection last year due to endo, as it had gone through my bowel wall. They essentially removed the effected part and scar tissue and rejoined the bowel.

    I had previous surgery part of which included unsticking my bowel from my womb and to shaving it. They hoped this would relieve my symptoms but it never, so I opted for a resection.

    I never needed a colostomy bag, my surgeons (gynae and colorectal) were lovely and we met a few times before surgery. They were also the same ones who performed my earlier surgery. I also met a stoma nurse who discussed what stomas were like in the event I would need one. I was absolutely terrified for my surgery as I appreciated all the risks and had, had a slight complication during an earlier surgery.

    I was very, very unlucky as I had internal bleeding following my resection, which was not picked up straight away. So I got very ill and required emergency surgery and blood transfusions. The recovery was not pleasant - partly due to two major ops within a day of each other and me nearly bleeding to death lol. But I got there and my bowel started to work properly again after a while.

    I am now fine. I am symptom free and have not long found out I am expecting again. I still have IBS but all the pain/urgency/constantly going the toilet whilst I was on my period has gone. For me it has been worth it, I am just hoping that my endo stays away.

    Good luck, let me know if you have any questions :)

    D x

  • Wow lots of very interesting replies to your question. My insides are exactly the same, ovarie inside my bowel, endo, adhesions, bits all stuck down, in pain every day. I've been told no more surgery and on meds for rest of life. Surgeons have said if operated on I could die ......

  • ..... Whilst on operating table but I've read how many of you have same condition as me and have been operated on again to have their organs unstuck and adhesions removed etc. Should I push for more surgery? I'm 47 and no life due to my condition. xxx

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