Hysterectomy and Endocrine Problems – Mary’s Story

Although there were a few setbacks on the way to surgery, my surgery and initial recovery went far better than expected. Because of various existing health conditions my hysterectomy and unrelated bowel reconstruction were done under a single anaesthetic with two teams of surgeons at a specialist centre some distance (90 miles along country roads) from my home. I was discharged exactly a week after my surgery.

Three days after I got home my blood pressure started to drop and soon reached a dangerously low level. I’d had endocrine problems in the past so I knew what was happening, and what needed to be done. The emergency doctor came straight to the house and after a brief examination; he took baseline bloods and gave me an injection (a massive dose of drugs that acts as a cushion until more appropriate treatment can be started) then arranged admission to my local (very small) general hospital. I had suggested a larger hospital but he ruled I was not well enough to travel so far in safety. No ambulance was available so I went by car.

On arrival at the local hospital I was admitted to a general ward, which was both busy and quite dirty. I complained the toilet was not clean and was handed a cloth with which to clean it! This was just a few days after surgery and I had a barely healed wound.

I handed over the findings of the emergency doctor and the endocrinal crisis pack that I carry. My blood pressure was taken – very low. This was the only time my blood pressure was taken during my time in this hospital. I was not allowed food (and more important drinks) until I had seen the doctor. After 4 hours I saw a staff doctor. He phoned a larger hospital for advice and told me they would need to do x, y and z. I said I knew that already as it was an immediate requirement as stated in my emergency pack – he had not been given this and my situation was obviously well out of his depth. I asked for fluids and he looked shocked – with my endocrine crisis I should have been given lots of fluids to keep me hydrated and I was now at risk of kidney damage. He took another blood sample and took that sample and the ones taken by the emergency doctor to the lab. Nothing else happened for a further two hours when I buzzed for a nurse and asked what was happening. “Oh, you have been discharged. I’ll find your letter.” So during my six hours in hospital I had scrubbed a toilet, had my blood pressure taken once, had a single blood sample taken and had risked kidney damage. I went home.

The next day my GP phoned very early – probably as soon as he got in. He said I was to come down to the surgery immediately, dressed or not, and we had to park in the space marked reserved for emergencies. My DH was to use a wheelchair to bring me in. I wasn’t feeling too well at all and my GP gave me another massive dose of support drugs by injection. He phoned the local hospital and then the larger hospital. It was decided that I would continue with daily jabs until a specialist could see me. Later that day I had abdominal pain and took up residence in the loo. The trips for the daily jabs became a nightmare as the abdominal pain got worse and in desperation my GP and my DH decided to phone the unit where my surgery had been done. I was re-admitted. The drugs I was being given had to be discontinued as they were affecting my blood chemistry and my blood pressure fell again. I was confined to a bed with cot sides.

Samples showed I had picked up norovirus and a call to the local hospital confirmed they had an outbreak in the ward both before and after I had been there. Great.

After a lot of blood and other samples had been taken I was asked if I wanted to stay in or go home. I elected to go home – a big error on my part.

The following day I was still in pain. I took the maximum dose of painkillers, used heat pads, and a TENS machine. I tried to sleep. By the next morning I was suffering the most pain I had ever experienced. My DH rang the specialist unit and they said to come right in. I was rushed into the gynae A&E and then off for scans. I am not sure how many people can get into a standard ultra-sound booth but we were certainly playing sardines as one person after another was called to have a look the screen. They found a partially blocked kidney, an internal bleed and a massive collection. My temperature was rising and it was decided that the CT scan would have to be done immediately.

During my scans the paperwork had been done for me to be re-admitted to the ward. I no longer had a choice as by this time as my temperature was dangerously high and I was starting to fit and hallucinate. An emergency call went out for a specialist radiologist to insert a drain into the collection. This was successful and the collection was found to contain about a pint of grot. The drain was left in place. I had drips inserted in just about anywhere you could imagine (and a few places you can’t!) – but I only have the haziest memories of this time. I was told later that things were very much in the balance and could have gone either way. Luckily I pulled through and was discharged after another week.

I still had both the endocrine problem and a blood chemistry problem but they could be held in check with bed rest until I saw a local endocrinologist and haematologist. I was only to be allowed out of bed to visit the loo until I had been seen.

When I got home I found I had missed the endocrinologist’s outpatient appointment at the local hospital – it had been scheduled for whilst I was in the specialist unit. My DH phoned to explain but was told that as I had missed the appointment I would be put on the bottom of the waiting list. So two months after my hysterectomy I am still waiting for my endocrinology and haematology appointments. I can and do sit up in bed although it makes me very light headed. When I stand my blood pressure falls so much I faint. I need a wheelchair to get to the loo and back.

Am I pleased with the hysterectomy and glad I had it done? I think the surgeons did a brilliant job and regard the scar is a badge of honour. I have made a formal complaint about my local hospital and have had the standard letter back. I will be taking things further – to the SPSO if necessary. The tests I have had done indicate big problems within my endocrine system and my own knowledge tells me this will not wait for months to be sorted out.

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in my own words book cover 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.