The Craziness Of It All – Liz’s Story

In July 2013, I was down in London for a friend’s big birthday and had a wonderful weekend staying with relatives. We arrived home happy and tired on the Sunday night. At 3am I was awoken by a pain in my stomach. At first I thought maybe it was food poisoning, or a stomach bug but the pain increased and I ended up crying out for help. I got back to the bedroom and asked my husband to call an ambulance thinking that so much pain may be a burst appendix, or that my umbilical hernia had got blocked, or something.

I was 49 and had been through 6 years and 10 tries of IVF. We had eventually ended up being successful at having a baby. Our daughter was at this time only 6.

The ambulance crew arrived and were also concerned about appendicitis as the pain seemed to be in my stomach, but having gone through IVF, I said I thought it was coming from my ovaries. I’d had a bad case of Ovarian Hyperstimulation Syndrome (OHSS) during the 6 years and this pain seemed vaguely familiar, only far more intense.

I was rushed to A & E with blue lights and dosed with the maximum amount of morphine. Once I arrived, I was monitored and then left alone for a while. When they returned they said it wasn’t my appendix but they weren’t sure what it could be. Next they thought Diverticulosis, then I was put on a bowel ward. I had a CT scan 3 days later (which was the best they could do, as some people had been in hospital all week and were still waiting for their CT scans.) It showed a blocked bowel and some masses near my ovaries.

Of course the word cancer was bandied around, although the MacMillan nurse who came to see me said that, although the blood tests showed raised cancer markers, these were low enough for her to believe it wasn’t cancer.

The ward I’d ended up in was the gynae ward, and was the one I’d lost two babies and nearly lost my daughter in, when I’d had a massive bleed two weeks after I’d miscarried her twin. They had tried to give me a D & C, but as I still felt pregnant, I’d refused. It did not have good memories for me. I was discharged after a week as my white cells had dropped to 16,000. I did not feel ready to leave and told the lady consultant that I was in a lot of pain and did not feel right. She told me “The body will heal itself if you give it a chance, my dear.” Needless to say I found her patronising and a bit stupid!

I went home only to return the next day with a high fever and in tremendous pain. It took 8 hours before I was readmitted to the same ward with Sepsis. My white cell count had shot straight back up to around 30,000 and I was in agony again.

I fell on my feet next, as the hospital’s best surgeon (in many people’s opinion, now mine too)was assigned to me. He dealt with Oncology and Gynaecology and was a Consultant in both fields. An ultrasound was performed which showed I had two masses on my ovaries. Both were bigger than tennis balls. I was told that they were badly infected masses and they couldn’t be certain of what they were till they operated, but that they needed to get my infection levels down before they could operate. My white cell count was at 28000. I was on antibiotics and the Consultant discussed my options. There weren’t any. I needed to have everything removed including my cervix. He told me he would do a vertical incision and would need to open me up properly to check what else was going on and that this was the only effective treatment.
I was 49 and had been amazingly fortunate to have had my baby. I wasn’t likely to have been able to have another even though I would have dearly loved to replace her miscarried twin with a sibling, so for me the choice was a non-event, out it would all come.

I asked about the time scale and he said ideally it would be on his return from holiday in September, but the waiting list for hysterectomies, even for cancer patients could be much longer, so he wasn’t sure. I did some asking around and realised that I could see him, at the private hospital on the same site, in the ideal time frame and decided that, as you need to feel positive about the operation to stand the best chance of recovery, I would go private. Luckily I had private health insurance and I reckoned it was about time it paid for itself. I had the operation when he returned from holiday.

He came to see me after the operation and told me that what he’d found when he opened me up was a real surprise. Firstly there was no cancer, huge relief! Secondly I had one of the worst cases of endometriosis that he’d seen in his 30 year career. Suddenly so much made sense, all the pains I’d complained of over the years and been told were “in my head,” or were a “spastic colon” or “a touch of IBS.” The blocked tube the IVF doctors had been quick to tell me was the result of an STD “you must have caught in your younger days” (to which I’d replied that as I’d never had unprotected sex and always come up clear in the tests, I doubted very much.) It all fell into place.

Apparently my bowel and rectum were badly misplaced and so was my cervix. The reason my bowel was blocked was because my rectum was actually upside down so I’d been fighting gravity every time I went to the bathroom. I was told there would be scarring, from where the lumps of endometriosis were removed, but that everything was now where it should be and given time and NO hormones of any sort, (even creams), hopefully would be ok. The operation had gone well as far as the hysterectomy went. He had also given me a very nice scar that skirted round my belly button and looked ok. (Well for an overweight nearly 50 year old anyway.)

The problems arose 3 days later when I had still not been able to produce a movement of any kind. The doctor on the ward decided to try some radical ideas to get me moving. I had suppositories, drank disgusting litres of gunk and finally after nearly 7 days, I suggested that I’d had enough of her weird and wonderful remedies and asked for Picolax, which worked on the second packet. I was allowed home.

I was surprised by how hard things were as I hadn’t realised how often I used my stomach muscles . It was hard going at first but I kept a diary and saw how much better I was every day.

I also didn’t have the predicted menopausal symptoms for 6 weeks after the op. On my penultimate visit to the consultant, I was asked about it and blithely replied that I wasn’t having any problems and was glad I’d got away with it. Famous last words….. The symptoms began the following week. I had night sweats, hot flushes and mood swings. At times my thoughts were irrational, so much so, that I even attempted to take my own life one night, mistakenly thinking that I wasn’t a good enough mother for my daughter and that my sister would do a better job of bringing her up! Crazy but it made complete sense for about 13 hours.

Things seem to be settling down a bit now, in March, but I felt it may be helpful to others to share my experiences. I was lucky to find a great doctor, Mr. Athavale, who gave up his weekends to check in on me (and that was both as an NHS and a private patient.) As a footnote I received a letter at Xmas saying that I could come in for my pre-op exam in January. I had been in so much pain in September when I’d had the op, I doubt I could have lasted till Xmas let alone the New Year, so I am extremely thankful that we had the means to use a private facility. I shudder to think how long I may have waited if it hadn’t been a potentially cancerous case.

I am glad I had the operation as I am starting to get my life back to normal, but don’t underestimate the emotional side. Get help if you start feeling down and if you ever think of taking your life, just remember my story and think, is this just hormonal craziness? Please.

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in my own words book coverNow 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.

2 comments

  1. Just to let you know that I had my op on Friday. Unfortunately although I was down for keyhole surgery I came round in recovery to be told That the fibroid was too big and they had had to do abdominal surgery instead . I was naturally disappointed as the recovery time is longer but having just arrived home after 3 days of excellent care in our city hospital I am glad it is all over. I feel tired but am looking forward to the summer when I can get back on my bike with my friends I am also relieved to get rid of the bleeding , headaches and backache. Can’t wait to have the staples out on Wednesday. For all those who have operations booked in the next few days good luck . It will be worth it.

  2. I am going for a hysterectomy soon I am too going private I meet with my consulted on Thursday and I am hoping to have the op soon after that but not sure how long the wait is, I suffer with depression as it is and I am worried about the aftermath of the operation, but when I have my monthlys I can not do anything I am in so much pain like you I could only have one child but I am a foster carer so I need to be active and my periods stop me from doing this, I really hope your on the mend and thank you for sharing your story xx

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