Abdominal fistula following hysterectomy

[worrywart]

Hi,
I’m 59 and 5 years ago I had a hysterectomy. I had a history of severe endometriosis spanning 20 years and a suspect mass had been identified. I had massive reservations about this op as I knew my pelvis was complex however the surgeons went ahead and said it would be fine.
Disaster struck - my bowel perforated resulting in an enterocutaneous fistula. I remained in hospital for months. Five years on I have thee stoma bags, a damaged bladder, gallbladder disease and a host of other physical and psychological problems,
I feel massively let down as my health is ruined with no hope of repair. I think there should be far more awareness on complications in surgery, I wasn’t aware the repercussions of a hysterectomy could be so permanent and life changing. The suspect mass they terrified me about was a benign fibroma and had actually been picked up 30 years previously. Did I even need the surgery. Probably not.
Is there anything you can advise that may help me accept this. I feel mutilated as a woman, can no longer have intimacy and my marriage is obviously struggling. Apart from which I am now chronically ill and there is absolutely no support out there for cases like me. It’s rare until it happens to you.
Thank you

[Dr Emma Kirk]

I am so sorry to this. You are extremely unlucky to have suffered this. You are absolutely right, we should make sure all patients are given information on the potential risks of surgery and the risks of not doing surgery, so that they can make an informed decision. It sounds to me that you would benefit from seeing a counsellor or health psychologist. Most gynaecology units have access to services, so it may worth asking your GP or gynaecologist to refer you.

[worrywart]

Thank you for your reply, when I was discharged it was recommended I have psychological support as I had become extremely depressed at the outcome to the point I wanted to end my life. I live in wales where there is a massive hiatus in mental health support. I had numerous assessments but they just kept passing me on as the couldn’t decide what help I needed, did I have ptsd, anxiety, depression - it became something of a debacle of im honest. After four years My husband and I now see a systemic counsellor but I still have difficulties coming to terms with the surgery. There just aren’t any health psychologists on my area which adds to the devastation. At 59 I have 3 stoma bags, damaged bladder, gallbladder issues and a host of other problems. I am unable to have intimacy, go abroad or even have a bath. It’s a living nightmare.