Years of bowel disease and endometriosis had left me with a very sticky, complex pelvis. I reached the age of 50 and an MRI indicated I had ovarian cancer. This proved to be incorrect but my consultant was becoming increasingly concerned at the state of my insides and how the suspect masses presented on ultrasound and MRI’s. So much so he recommended a complete hysterectomy as otherwise I would live with this uncertainty for ever.
This was four years ago – I was warned the surgery would be complex owing to numerous operations for bowel disease and endometriosis but on the basis the scans was no longer reliable, they assured me this was the best option.
I put it off for a year then my mother had a massive brain haemorrhage. Life again become very difficult and when she eventually came out of hospital, I helped care for her so my health problems took a back seat again.
At the end of 2014 however I had had enough, I felt I had to out myself first for once. The menopause had arrived and I was having the usual problems but HRT was not an option whilst I had these suspect masses inside me. I decided to go ahead with the hysterectomy which was scheduled for January 15.
I went to a specialist hospital 70 miles from home and had top surgeons – the gynaecologist was to be assisted by a colo rectal surgeon as they knew adhesions were likely to be a problem. I had my reservations up to the very last minute and felt I was about to make a massive mistake in having the surgery …………..
I came round from the op feeling awful and totally spaced out. I was in intensive care as I had lost a lot of blood. A few days past and I was still very confused and feeling awful. I was encouraged to walk a little and when I stood up, the floor quickly covered with a green liquid. I had a leak in my bowel. The consultant who had operated on me was away – things however moved very quickly. A perforated bowel can become life threatening in a short time – I was hooked up to all kinds if antibiotics and painkillers, my temperature soared and I was hallucinating. My husband was by my side and looked heartbroken.
The consultant came to see me the next day and a return to theatre was scheduled. He said he would try and repair the leak but it was likely he would have to leave it repair naturally as I was too ill for more major surgery, he said it could take 3 months to heal. I was in shock.
The night before the second op was due, I lay in bed in a lot of pain despite the morphine pump. With each bowel spasm, liquid poured out of my vagina. I could not believe what was happening to me. I thought I was bleeding to death as I felt the warm liquid gush out of me. It was 3am and I called the nurses. Two nurses attended and they spoke little english – they washed me and change the bed. I asked what was happening and they said they would call the doctor. It was the longest night of my life. Every time the drip alarm beeped, the woman opposite thought it was her phone and kept shouting for it to keep quiet. It was surreal and I so wished I had never had the surgery.
I went to theatre the next day and they put in drainage tubes to drain away the bowel contents into two bags attached to the drains. I was told to be prepared for a long hospital stay – at least 3 months. We were all heartbroken – we lived 70 miles away so visiting was a nightmare. My poor husband and daughter were exhausted. I could barely move because of the pain. The hysterectomy had seemingly been very difficult but he had managed to remove everything. It seemed so irrelevant – I just wished I could turn back time.
I spent the next 11 weeks in hospital. I could not eat so was fed through my vein – each night I was hooked up to a bag of liquid that was to nourish me. I could drink small amounts but the more I drank, the more the seepage came out of my vagina which I hated. So I limited my fluid and then had urine infections which were so painful.
I had periodic CT scans which showed slow progress. I developed a further hole on my abdominal scar and occasionally bowel contents would seep from there too. I became so depressed I wished I was dead – dramatic I know but I felt I had ruined not only my life, but my husbands and daughters too. I had been unwell most of my adult life but had kept putting things off until I lost weight, or finished work or various other reasons. The long days I spent in hospital made me realise I may have missed the boat, as what if I never recovered from this – I had ruined my life…………
As the weeks past I became stronger. The gynaecologist came to see me and assured me the histology had been fine – no cancer. He was however so disappointed my bowel had perforated and appreciated my distress. One of the reasons I had agreed to the hysterectomy was so that I could maybe have HRT so that I could enjoy intimacy again – I was very painful down there. Now my bowel contents were coming out of there – it felt so hideous and so wrong. I could not cope with it.
On a few occasions they started trying to feed me. Soup, ice cream etc but it resulted in the vaginal seepage increasing so I became afraid to eat. I had visions of being on the special intravenous nutrition for the rest of my life. I had been told if the hole did not heal I would need more surgery but there were no guarantees of success as my insides were such a mess. I prayed daily and I started listening to meditation apps on my iPad. I found they helped when things got too much for me. The ward was noisy and busy – every week people came in for massive operations and then were discharged. But I remained and became more and more despondent.
The weeks passed and I started to feel better. I had been moved to my own room which helped as I had better sleep. I started to eat small amounts of yogurt and crackers with no significant increase in the seepage. I also had special protein drinks to replace the intravenous feed. I looked well and was even allowed home at weekends. I went to the hairdresser and felt normal. I started to fight back and focused on coming home – I forced myself to walk the hospital corridors to increase my stamina. I was so homesick – I just longed to be at home with my family.
After 11 weeks I was discharged. I had a CT which showed improvement – the vaginal connection had all but healed which was brilliant news. This gave me confidence to eat and my appetite came back which aided my recovery no end.
I have now been home for 2 weeks. I am eating well and things are settling down but I am nervous of every pain or spasm. I am still anaemic and get tired easily but that is to be expected. I have shared my story to reassure anyone else who may find themselves with this RARE complication of hysterectomy, that there is hope.
I could find very few positive stories online – in fact the stories I did find made me so depressed. But I did heal without the need for more surgery and I feel pretty good. The hysterectomy took a back seat in all this. At the moment I don’t seem to be having any ill effects of having a complete hysterectomy but I am 5 years into the menopause so my gynaecologist said I should not notice any difference. Intimacy has not resumed – my gynae wants to see me in 2 months when I am fully healed and we will discuss HRT if necessary. I am glad the suspect mass has gone but it seemed a very high price to pay when my bowel perforated. I hope I will continue to improve and eventually be glad I had the hysterectomy – at the moment it’s early days. I was told however that had I not had a scheduled hysterectomy and gone in as an emergency I could have died – I am very grateful therefore despite the horrible experience we went through.
Now available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.
Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.