Three years ago today I had a hysterectomy which has completely changed my life. I had an automated email from a hysterectomy support group today congratulating me on three year anniversary and hoping I was having the time of my life embracing the new found health my hysterectomy had given me………….not quite my experience I’m afraid as I developed an enterocutaneous fistula. Here is my story as to why it was such a negative experience.
Firstly some background – I had a stoma aged 26 for bowel disease. This restored my health and I adapted very easily to life with a ‘bag’. I then however developed severe endometriosis which blighted my life for the next 30 years. A hysterectomy was mentioned in my early 30’s but they felt it was too risky as I had lots of adhesions thanks to previous surgeries plus of course endometriosis which in itself is very inflammatory and causes adhesions. My gynaecologist decided to treat my recurrent cysts by repeatedly aspirating them under general anaesthetic. This was done in excess of 20 times over a thirty year period and it interfered greatly with my working and personal life. In 2010 my gynaecologist retired and I was referred to someone new. After doing a routine MRI he felt a hysterectomy was now essential as the imaging was unreliable; a suspect mass had been mentioned a few times. Whilst he didn’t think it was a malignancy he didn’t know what it was and so the safest thing to do was a hysterectomy. It took him several years and lots of surveillance to convince me this was the best thing to do and in January 2015, the operation went ahead.
It proved to be very difficult surgery. There had been a senior colorectal consultant in attendance owing to my history of adhesions and he had his work cut out separating my tethered bowel from my uterus and ovaries. They managed to ‘get everything out’ but three days later I stood up to find my bowel contents flooding out of my vagina. My bowel had perforated. This was the start of the worst time of my life – the hospital was 90 miles from home, my husband slept in the car on the first night and my life hung in the balance. I was taken back to theatre but a repair to the bowel was not possible as where the bowel had been attached to the uterus, was severely damaged. I was told I would be in hospital for several months and would not be able to eat or drink so that the bowel could heal. I would be nourished by something called TPN, trans parental nutrition which meant I was fed through my central vein. I hated it – I had gone into hospital reasonably well, and now my health was ruined. I was repeatedly told to be positive and be grateful to be alive, which I obviously was, but this was a living nightmare. My husband moved into a hotel, my mother who I’d been caring for had to go into a home. My family were heartbroken as was I. I kept wanting to wake up from this nightmare…..
I left hospital in May 2015 broken and battered. I was by now able to eat and drink small amounts but holes began appearing on my midline scar. These holes leaked fluid which sometimes looked faecal. I was terrified and repeated visits to my surgeon resulted in a small bowel MRI. I was soon to learn I had actually developed an enterocutaneous fistula. Basically where the perforation had occurred, the body creates an abnormal channel from the perforation to, in my case my skin, more specifically my midline scar. One hole became two which became three. I was a nervous wreck, scared to eat or move which seemed to make the output worse. I was told I would need to live with it for at least two years when an attempt at repair could be made.
I found it hard to accept what was happening. I’d gone in for a very common operation in good health. I had a busy life, job and even managed to care for my mother. I ran our home, cooked and cleaned and had a happy marriage. I was the ‘go to’ person for my daughter and sister helping with the children and of course our mother who remained in the home. Now all that had gone and all because of a hysterectomy, I was in denial.
I tried to get some help for the severe depression that was developing but even this was not straightforward with an NHS that was struggling. I basically rode the storm with great difficult, I was frequently ill, had to wear three stoma bags and generally became a very angry, unhappy person. One shining light was my daughter had a baby in 2016 and she kept me going and hopeful this nightmare would end soon and we would get our life back.
In March 2017 I went into have the long awaited repair op. I was nervous but excited to be free of the holes and the bags and the constant infections I’d been having. No happy ending I’m afraid as the repair failed, I developed sepsis and then respiratory failure. I spent 8 days in ICU and three months in hospital again not being able to eat and with the depression taking an even deeper hold. Even though I was so grateful to have survived the respiratory arrest, I was left with a worse fistula than before.
So that was 10 months ago and where am I now. The fistula never healed and I’m told it could be due to the severe endometriosis I had in that area, the tissues have become friable and weak. There is no evidence of bowel disease in the area. As a result of this they cannot give me any medication as there is no underlying disease. I rely heavily on painkillers and live a very quiet restricted life. My general health isn’t great and whereas before I’d shake off viruses and bugs, the same bugs now tend to hospitalise me as the infections take hold and the fistula breaks down.
The effect on my personal life has been pretty devastating, my healthy husband is increasingly angry and frustrated at our situation. We have both now retired and live a very different life to what we had hoped. But I am so grateful to be here, spending time with my lovely considerate daughter, my granddaughter and my nephews who I adore.
I try to make the best of the good days but seem to be constantly searching for answers that don’t exist. How could this happen as a result of a hysterectomy? I’m told ‘these things happen ‘ or I’ve been unlucky but I can’t find many stories like this and it’s the loneliest place in the world. I look quite well and compared to some fistula patients I probably am. Fistula are usually attributed to Chrons disease, or diverticulitis in the bowel or as a result of cancer treatment but none of these apply to me. I can eat and drink, I’m not underweight but I am broken and have totally lost my spark and zest for life. I’m now too afraid of life to live, if that makes sense.
So yes I do wonder where I fit into the happy gang of post hysterectomy ladies as my story has been so so different. I am hoping I will accept things one day and move on but I’m finding it very very hard at the moment. I am sharing my story to raise awareness of the black side of hysterectomy, for me it’s caused many more problems than it solved.