I am 51 years old and had a history of really bad periods and pain throughout my life. At 21 was diagnosed with IBS.

After having two children my periods were so bad and painful ( and fainting due to aneamia) i had a hysterectomy but, as they were healthy my ovaries were left. They also couldnt remove my cervix either as it was stuck to my bladder and the op took much longer than expected. My Gyne apologised to me as he thought he may have damaged my bladder in the process, luckily he hadnt

I continued with really extreme pains which was always put down to the IBS, however after many many years at 49 the pain became so unbearable and I had started to bleed from my bowel and had some spotting from my front I decided to go to my GP.. As i was in BUPA I got referred to a Gastro Dr who after doing a cat scan referred me to a Gyne Dr as the scan showed cysts on my ovaries. The Gyne Dr didnt appear to believe how much pain i was in but after a lot of deliberation decided removal of both ovaries might be best.

I was in the operating theatre 6 and a half hours and the Dr came close to stitching me up and asking my husband to sign a consent to have my bowel removed. He said he had not seen as much endometriosis in someone before and that i had a large plaque of Endo on my bowel (sigmoid) and he had had to leave it there as the alternative would be to take my bowel out. He said the Endo should die off as it was now starved of Oestrogen. As I was still having bleeding from bowel i had a bowel camera procedure which showed nothing, no haemorrhoids etc just a lot of spasm and that was it, I was discharged.

My op was 17th March 2012 and over 12 months on i still have extreme pain, bowel bleeding, vaginal spotting, lower back pain. Sex, lifting heavy bags etc can set the pain off or it can just start on its own. Sex can also be a little painful too. I feel like im in labour and the pain just feel like a small animal has climbed into my body and is eating away where my womb should be. Its is showing no sign of dying off.

When will this "die off" or is that a myth. I have heard of a hospital on the Wirral that specialise in Endometriosis on the bowel and where bowel and Gyne Dr's work together to relieve it. If so can a GP refer you?

Im beginning to think i would rather lose my bowel than put up with this forever.

Can anyone offer me any advice or has the same problem they can share?


2 Replies

  • I don't think the endo is what's causing your pain now so much. It will no longer be anywhere near as active if at all, than it was before if it is being starved of oestrogen now the ovaries are gone.

    Your nerve endings on the other hand could still be in dire straights. Sending pain signals when they shouldn't be.

    There are colorectal surgeons with each of the accredited endo centres in the UK, and they specialise in resections of the bowel to cut out whole sections irrevocably damaged by endo if that is needed. and you have a colostomy for a while before that is then hopefully removed and the remaining bowel is back working as a tube once more.

    I'm not really fully up on the whole process never having had it, though it is something I am bearing in mind as I do have endo on and in the bowel.

    Could be worth asking your GP to refer you for a consultation

    here's the list of accredited centres

    and links to some worth reading articles

    and my favorite as it so full of info about rectal endo

    there are some endo ladies who have successfully been through that surgery.

    I read quite a few on

    an american oriented endo forum, but it does have quite a few Brits signed up taking part and you'll certainly find ladies who have been through it on there.

    Last week one of the ladies on this forum posted a very interesting article

    giving an alternative possibility for pains which was very enlightening:


    then there was this in the daily mail-please also read the comments below it

    Anyhow there is certainly plenty of possibilities as to why you are still in considerable pain, and it does need investigating and while getting appointments with consultants is like getting blue blood out of granite, it is something you can be researching online from home and looking in to. trying to find other causes for the pain aside from endo.

    You have had a lot of major surgery and may be facing even more, but every surgery has its consequences and while some my not manifest themselves right away, there are side effects that can develop over time and painful ones too.

    Don't rule out adhesions (scar tissue) being a big issue after endo too. the more room it has to grow in the more it will grow. like a bramble hedge, it can be cut back and free up space but it will grow again.

    I hope you find some useful info in those links i have given you, you do have my sympathy, constant pain whatever the cause is so exhausting and debilitating. I hope you can find something that can be done to relieve the situation for the long term.

  • Thankyou for your helpful links. I will blog my journey once i have a referral. Fingers crossed.


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