Endometriosis UK
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Hysterectomy hell

Hello - I'm 54 and had endo for about 25 years. My gynaecologist tried to do a hysterectomy a long time ago but my insides were so stuck he abandoned the procedure. I was treated with drugs and a regime of him draining off any fluid or cysts that collected . I accepted this for 20 years . My case was further complicated by the fact I already had a bag for bowel disease . The gynaecologist retired and I had a new one who was not happy with how my insides looked on MRI - I was told I had ovarian cancer and had to have regular scans all of which were inconclusive. In January this year I had a hysterectomy - I had two top surgeons yet despite this my bowel perforated - it's now 7 months later and I'm still having problems, I was in hospital for 3 months after it happened and remain traumatised and depressed. All because of endometriosis and maybe in my case, the bad management of it, I should have been referred to a more specialised centre years ago but I never questioned it and now I'm paying the price.

If anyone has had similar experience that they would like to share I would be grateful. I feel my life is ruined at times because of this.

4 Replies

Hi - I'm 61 and my symptoms started in the mid 80's but I went undiagnosed for 20 years. Finally I had a hysterectomy and both ovaries removed at age 44 for what was diagnosed as severe PMT. They didn't find any endo then and I was put on high dose oestrogen replacement. I became desperately ill but was asked not to go back to my GP practice as it was made clear all my symptoms were considered in my head as they had been since the mid 80's. Finally I was rushed to hospital 7 years after the hysterectomy with a huge pelvic mass that was thought to be aggressive ovarian cancer on ultrasound, from what was assumed to be an ovarian remnant. It all turned out to be a very aggressive form of endo caused by oestrogen replacement. This was incompletely removed and I went on to have stage 4 everywhere and finally had a successful excision at age 55. The radiologist had never seen endo like it.

Was your surgery in January done by a BSGE accredited specialist endo centre? You have clearly been treated inappropriately in the past but we have had specialist endo centres since 2009 and any time thereafter you should have been referred to such a centre. These do vary though as expertise is bound to vary even amongst 'experts' and there are a few in the country who tackle the most complex of cases and I do think you would benefit from seeing one of our top people. Where in the UK are you?

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I'm in Wales and had my surgery in Cardiff. I know the two surgeons I had are excellent and probably saved my life as they didn't realise how bad it was until they opened me up. I do hold the previous surgeon party responsible as he should have referred me to a more specialist centre as the years of him sticking needles into my pelvis has caused the damage which added to the reasons the bowel perforated, they did manage to do complete hysterectomy though and ovaries etc all gone. I'm 55 next month so hope endo is now behind me as I'm not in hrt or anything. I do struggle though the perforated bowel experience has left me traumatised and I keep worrying it will happen again - I have been referred for counselling but as we all know we have to deal with these things ourselves.

Thanks for reply, your story sounds horrendous too. Hope you are well now x

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I assume you were seen in the centre and were in good hands and do hope you get through it. I often think back over all those years and wonder why I didn't know I wasn't being treated right but when you feel so ill and helpless you just get dragged along with a wave of hopelessness. I still get fatigued and still have all the allergies I always did but in myself I do feel so much better, but it did take me a couple of years. So it is still quite early days for you. The one thing you can do to keep postmenopausal endo at bay is to maintain a good weight as the main source of oestrogen is fat tissue. I do lapse from time to time but do my best to exercise and keep as trim as possible. All the best. xx


Thank you Lindle - the surgery complications came as a massive shock as I wasn't expecting it and I'm still having problems, I am overweight so I need to sort that out and generally start looking after myself a bit better as in exercise. My body had a hammering but I hope the worst is behind me now, thanks again xx


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