Is there anyone who has endometriosis, adhesions sticking ovary to bowel and diverculitis disease. and have a hysterectomy, did it work?

[Juleyanne]

[stevieflp]

Hi,

I certainly had stage 4 endo which had stuck up my bladder, bowel,ovaries, recto-vaginal.

You mention a hysterectomy. Can i just ask you to consider something for a moment as the standard treatment over the past has been that a hysterectomy cures all. Why would having a hysterectomy help with endo where it has affected your ovaries or your bowel? It is a good question indeed. A hysterectomy will only help where endometriosis is in the muscle of the uterus. It will solve that - but endo is not a disease of the uterus only - it is of the pelvic cavity (and rarely other places) and like you have discovered, can affect other pelvic organs and is often on the outside of the uterus rather than internally. If you just have a hysterectomy, you could well still have endo around your bowel and ovaries etc. It would not, therefore be the definitive answer.

I was told by my first gynea consultant that I was in an awful mess and my best option was a hysterectomy. This did not sit too comfortably with me and the reasoning did not make sense - yes if I only had it of the Uterus - but what about the rest!

I did research and got myself referred to an endo specialist surgeon rather than a general gynae and underwent 'radical excision of the peritoneum'. This is where the whole of the lining of the peritoneum is stripped away and removes all seen and unseen endo - it also freed up my bowel, bladder, pouch of douglas and ovaries, which all went back into place as far as possible. The surgeon was skilled enough to save my ovaries by temporarily suspending them with a large looped stitch to prevent them from re-adhering to the healing peritoneum. I also avoided a hysterectomy.

It was all done keyhole so not as major as it sounds, although it did take 7.5 hours to perform. That was 18 months ago now and I have not had any endo symptoms since - I have got my life back for now - it was the best thing I have ever done for myself (well rather the brilliant surgeon did). Had I also had adenymosis (endo in the womb muscle, then I would have also needed a hysterectomy - but not without excision of other endo at the same time.

Hope this helps.

[Juleyanne in reply to stevieflp]

Thank you for your reply. It is pretty much on the lines of my thoughts on this dilemma!

From going to a few endo meetings and chatting to an endo/adhesion specialist gyne

it has become more and more apparent that complicated endo and scar tissue that is all over the place as mine was last time they did a laparoscopy and hysteroscopy, should only be tackled by an endo specialist and maybe bowel surgeon. My endo was also found round my belly button so it had travelled from pelvic organs ovary stuck to bowel and removed fallopian tube stump to bowel the other side. It ended up a bigger op and very painful one at that. Initially worked felt great then pain started to return. Tried Zoladex,Tibolone which failed to work and have lived on co drydamol, stool softners, sleeping pills for a few years since. All kinds of suggestions from gyne (not endo specialist) muscular skeletal then offered salpingo bilateral oopherectomy (full hysterectomy).

Got myself into confused state and very afraid that such an op would just give me more adhesions. Too big an op if it is not going to work! CT scan picked up Diverculitis Disease and small Hiatus Hernia since plus I have a tilt/prolapse. Not really surprising I am having a symphony of unpleasant painful symptoms I guess! pinching when I sit, bowel problems like acute IBS, pelvic pain wakes me daily and slight improvement when bladder and bowel emptied, exhaustion, low back ache sometimes to knee on right side, need to urinate frequently, feeling sickly at times, can't bear anything tight round waist which is often very bloated. Anyway thanks for your interest and reply, very helpful. It is often very difficult in the NHS to get a endo specialist, they are about but they are often private and frankly I am not able to go private. I am having an ultra scan soon so see if that throws up anything although I know it often fails to show endo or adhesions unless dense and go from there.

Thanks again very useful info.

[stevieflp]

I really feel for you. I understand totally that feeling of bewilderment. I recall feeling pretty traumatised at the treatments I was offered. It wasn't even the hysterectomy for me as I am an older lady, it I thought it would be the answer, I would not have hesitated - but with severe stage 4 endo everywhere, I just couldn't see that this was the answer in itself. Endo is often deep rooted and does not always show up on scan like you said. I also had a tilted womb and this was due to the endo which had adhered my innards recto-vaginal (known as the pouch of douglas).

It is such a shame that there are not more endo specialists available. There are however certain centres throughout the UK that have been awarded the status as 'endo centres'. Endo UK will have details of where these specialist centres are.

I hope you will get the help you need. For me, all I can say is that you will know instinctively when you are getting the advice that feels right for you - if you don't get that, please do ask for a second opinion / referral.

Lots of love