Bowel endometriosis surgery

Hi everyone. After many years of excruciating pain every period - docs constantly telling me it was normal. I finally got referred to a gynaecologist in Dec 2016 and had a laparoscopy 5 days ago which diagnosed endometriosis. It is covering my bowel bladder and uterus so my gyn was unable to remove any of it as she needs a specialist bowel team. Since then I have been reading up about bowel surgery & it certainly sounds scary.

Has anyone had bowel surgery for endometriosis - how long was your hospital stay and how long was recovery? Was it diagnosed through laparoscopy? If so how long did you have to wait for the 2nd op?

I have also being trying to get pregnant for over a year and now worried this is a huge set back (I am 35).

Thanks.

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  • I had excision from endometriosis on my bowel nearly 7 weeks ago. I also had a hysterectomy and BSO at the same time. Are you being seen at a bsge centre? (a specialist endometriosis centre, not general gynae - the list of centres is here bsge.org.uk/centre/ )

  • Thanks for your reply joreilly- I hope you are on the mend. Did you have a long stay in hospital? Have you had surgery for endo before?

    It doesn't look like I am going to a bsge (my hospital is not on the list) - I had my laparoscopy at a private hospital as an NHS patient but I think this 2nd op will be at a bigger hospital. I am waiting to see my gynaecologist again in a couple of weeks for more details.

    The more I am reading about bowel surgery the more worrying it is - it sounds like a huge op and will be out of action for quite some time.

    I have a holiday booked in sept & am going to be a bridesmaid in October - I'm wondering if I will be able to do either of these seeing as my op will be 'in a few months'.

  • Please have a look here: england.nhs.uk/commissionin...

    This explains how the NHS are supposed to treat severe endo (which often involves the bowel). If this describes the endo that you've been told you have, you should be referred on to a specialist centre for treatment. Sometimes general gynae will attempt it but they shouldn't.

    Bowel surgery for endo generally isn't as invasive as bowel surgery for other conditions and usually they can shave the endo off the bowel rather than needing anything more drastic. Difficult for me to comment on recovery really as I also had a hysterectomy and my ovaries and tubes were removed as well as an extensive excision of endo so separating out what was due to the bowel surgery and what was everything else is tricky. It was my third surgery for endo but sadly by the time I was diagnosed there wasn't much else they could do.

  • Hi,

    I have had two lots of surgery involving my bowel. It should be done at a BGSE centre by a specialized gynae and bowel surgery. My bowel endo was diagnosed through a lap.

    My second operation was about 5 months later. I had my bowel shaved and unstuck from my uterus, I also had endo removed from POD and UL. At this op I had some bleeding but it was fixed during surgery. The surgery was quite significant due to the extent of the endo. I was in hospital for 2 days. The recovery was not pleasant and I couldn't do much for the first two weeks. But I did heal quite quickly. I had the surgery at the end of July 2013 and got married at the end of September. I couldn't lift for a while at least 6 weeks and I wasn't back to myself for a few months but it did offer some relief.

    I then had a bowel resection last year in May as my endo had gone through my bowel wall and was causing excruciating pain. The surgery took about 6 hours and I was prepared in case I needed a stoma. The surgery went well in the sense the excised the endo, the bowel was removed and no stomas was needed. But I had internal bleeding which was not picked up at the time. I was rushed back in to theatre the next day as I had lost a lot of blood and required surgery and transfusions. I was in for 7 days but was followed up weekly for 3 weeks (I begged them to release me lol). I was really ill in hospital and was terrified but I managed. I did recover after a few months and went back to work (I have a desk job) after about 7/8 weeks. I had effects from the surgery for a while - my bowel took a while to adjust but it did go back to normal.

    I was very, very unlucky but it is a risk of surgery which I knew at the time. It is so difficult to decide what is right for you. I do not regret having surgery for me it has meant I am pain free from my endo.

    I should also say I fell pregnant after my operations (once I was recovered enough and got the go ahead from my surgeons) so good luck.

    D x

  • Hi D

    Thanks for your reply. This has given me a lot of information I was after.

    It sounds like you have been through an awful time but it's great to hear the surgery has left you feeling so much better.

    X

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