So I’m five and a half weeks post op and I thought now was the time to write about my experience. of having a hysterectomy – because of cancer and before having children. When I got diagnosed and was looking on the internet for other women’s experiences – all I could find were horror stories and I couldn’t find anywhere a woman was having to have the operation before she’d managed to have children.
I was going to write one post but there is a LOT to fit in so I’ve split it into two. Just so you don’t fall asleep before the end but also so I don’t feel like I’m writing an essay and rush at the end. My story is a positive one and its important I make that come across. So here’s part one.
Every woman I know complains about her periods – they are painful, heavy, go on for ages etc . Having periods suck – its the worst thing about being a woman. BUT pretty much every woman has them . So when you have a period – you don’t know what is right and what you should be concerned about. The internet and doctors tell you that “about an eggcup” is normal – but how do you measure that? Is that an eggcup a day? A whole period? A lifetime? Anyway, I’ve always had difficult periods . Incredibly painful up until I was 20. Then they vanished and then they came back non-stop. My “floods” began back in 2012 – I was on a canal boat with the husband and two friends and it was horrific. I was using numerous pads and still having to change every 20 minutes or so . I bleed through all the bedding and all of my clothes. Plus the pain! I bled so badly that I stood up and it gushed out and ran down my legs and onto my shoes. I thought I was dying!
I went to a GP and he was concerned I’d had a miscarriage and once I’d assured him I definitely wasn’t pregnant he gave me some progesterone tablets and told me that would stop it. Which it did – for the week I was taking them for and then it all started up again so I went to see my normal GP (she’s wonderful!) and I was prescribed some clotting medicine – this did the trick .
So this is how I survived – whenever I started to bleed heavily, I would take tranexamic acid for four days and my periods would stop. For the first two days it was like carnage but then slowly became manageable.
After my second big flood – I arranged to see a gynaecologist. I had been seeing one due to PCOS but we’d fallen out after she’d fat shamed me (read about that here) so I needed to find a new one. My GP had heard of one lady in particular so I used my BUPA cover and went to see her privately . By this time I was bleeding continuously – not heavily but enough I needed to wear a pad every day and change it a couple of times .
I got my appointment with the consultant gyneacologist and we discussed my PCOS and my bleeding. She wasn’t overly concerned about the PCOS – but she was concerned about the fact I was bleeding – she sent me off for blood tests and a scan. The consultant thought I might have a polyp or a fibroid but she wanted to wait for the blood & scan results. Neither of these showed up anything to be concerned about and by the time I went back to see her, the bleeding had stopped. She thought it was likely I’d had a polyp and that had passed – which would have caused the heavy bleeding. She told me to come back if anything started up again and she would arrange for me to have a hysteroscopy .
So this is how I managed for the next 18 months – taking the tranexamic acid when things got too much and wearing pads when the bleeding didn’t stop.
The summer of blood
I didn’t have any more major bleeds and in fact between March and June 2014, I had pretty normal periods. So in July when I began to bleed, I didn’t worry. I didn’t even have any tranexamic acid in the house. The flood began at work – I was in a meeting and I stood up and I felt the gush. This was how my summer of blood began. I took tranexamic acid – it didn’t work. I took progesterone – this slowed it down but didn’t stop it or stop the pain and also drove me insane! I would cry without reason, I hurt everywhere, I felt sick all of time time. I couldn’t sleep. Horrible. My GP signed me off for two weeks . At the end of the two weeks I went back to my gyneacologist – she ordered a scan and bloods. This time, the scan showed something – the radiologist couldn’t say it was a polyp but she suggested a look was required .
Hello hospital my old friend
On 20 August 2014 – I went and had a hysteroscopy. My second ever general anaesthetic and it went fine – was a great experience in fact. My gynea couldn’t find a polyp – she said the lining was thick and “fleshy” but she cleared it all away and sent it off to tested. I was in and out of hospital (private) within an evening. The next day, I felt wonderful! The best I’d felt in ages. No bleeding, no pain. Amazing! By the Saturday (I had the op in the evening of the Wednesday), I felt awful – really bad cramps, bleeding, feverish. I just put the cramps down to the womb going back to its normal size and the bleeding being because I’d been scraped out. And the fever I didn’t really recognise as such. The husband was away for the night and I spent it feverishly dreaming slugs were climbing all over the cats’ bowls. I was also freezing. I remember putting loads of layers on and using the hairdryer to warm my socks and my feet. Yet still I didn’t recognise I was sick. Not until 7am on the Sunday morning when I stood sobbing in the bathroom feeling so terrible and a memory flashed into my head – I hadn’t felt this bad since I’d gotten my post op infection after I’d had my tonsils out. THEN I knew . An early morning phone call to NHS direct, a trip to A&E with my wonderful friend I’d dragged out of bed and two lots of antibiotics later, I was back home – feeling worse. The doctor I’d seen in A&E had said if I felt worse or felt sick to come back in.
To cut a long story short – I did have an infection. I was treated ridiculously poorly by every department I encountered on my return visit to A&E and I was hospitalised for three days due to the infection. But this was it yes? I had been unwell enough? Ha! No quite .
The worst is yet to come
Two weeks after I’d had my infection, I was due to go back to work. But finally – the results of my biopsy were back. I walked into my gynea’s office thinking I was going to be told it was nothing that loosing some weight wouldn’t solve (answer to EVERYTHING when you’re a fat girl) and walked out with a potential cancer diagnosis. Basically my results had been reviewed by two pathologists and both were unsure – including one who is one of the leading pathologists in the UK. It was likely the fact I’d been taking huge amounts of progesterone had skewed my results but to be better safe than sorry, I was going back to have another biopsy but under urgent care at my local NHS hospital.
The unknown journey
The biggest difference I noticed between NHS and private care is not the level or standard of care you get but how much you are told what’s happening. With private – I guess because you are a paying customer – you are told “you are going to have a scan for x reason.” “These blood tests are to tell us y”. That doesn’t happen with the NHS. I got back from holiday with my next operation already booked in – with lots of demands about how to ensure I have it. My first appointment with the gynea oncologist consultant involved me having to have an internal scan without warning (and it being discussed in the middle of the waiting room with me!). I wasn’t told much else. I read the results of the scan because I was given the paperwork and had to walk back to where my consultant was. It read “womb lining <5mm thick (measuring 25mm) looks hyperplasia in appearance.” whatever that meant. I should have known then that I was going to spend a lot of time asking “why?” and being on the defensive. It’s probably easier if I bullet point what happened next:
- I was booked in for my operation – and told I would need to stay the night as they would put me on IV antibiotics to prevent me getting another infection. But only my consultant and I appeared to know this! I spent my whole time in recovery explaining “I get post op infections, I need to stay in for antibiotics” .
- I was asked by the ward sister if I’d had an operation in last six months, three hours after coming out of surgery!
- I kept receiving phone calls about scans and MRIs but had no idea what these were for and why. In fact my MRI and CT scan were booked for the same time and if I hadn’t enquired about why I wouldn’t have had one of them.
- I wasn’t told I would need to have a cannula in for both scans – until the day . I then had to endure someone trying to get them in!
- I was fat shamed 10 minutes before my operation by the anaesthetist – who asked me what I was doing about my weight! She then got shirty that I was abrupt with her “you took offence when none was intended” “no, you assumed I would just take it when you questioned me about my weight when it has nothing to do with why I am here” .
- I was told I needed to have my results discussed at St Thomas’ and was given an appointment time. Two hours before that appointment it was cancelled because “as you don’t have cancer, then you don’t need to see us.” !!!
And I’m sure there was more that I’ve blanked.
I was ready for my results. I was confident that it was nothing to be worried about . After all, I’d been told it wasn’t cancer. WRONG (kinda)! I had pre-cancer – I had something called complex atypical hyperplasia and I had two choices:
1 – take 16 times the amount of progesterone I was on in the summer (you know when I felt like I was going insane) for three months. Be bioposied again. If the hyperplasia was under control, loose eight stone, try and have IVF. If the hyperplasia wasn’t controlled – have a hysterectomy.
2 – have a hysterectomy.
The consultant wanted me to decide there and then – he also assumed that I would go for option 1 . I didn’t – I needed to talk to my husband . I needed a second opinion. I needed to research it further.
Here’s what my research found:
- Hyperplasia means you are infertile. My womb was not a healthy or hospitable environment for egg implantation. Getting pregnant naturally was impossible. Getting pregnant and staying pregnant through IVF for someone with hyperplasia? – 1%.
- A third of all women with complex hyperplasia were found to have cancer once they’d had their hysterectomy.
- Taking the progesterone was basically a way of clearing out my womb – I would have more horrendous periods over the three months of taking the progesterone.
- The hormone therapy only works in around 18% of cases. The rest end up having three months of hell and then having a hysterectomy.
- I would be given around a year to loose eight stone and try and get pregnant – throughout that year I would have a biopsy every three-four months to ensure the hyperplasia was still under control.
None of the above sounded positive. I decided to be logical – even if they didn’t find cancer, I had to think about my periods. Did I really want to spend potentially the next 20 years with periods like I had been suffering? The chances of me getting pregnant seemed slim to none. We had already discussed other ways to be a parent.
So after a second opinion – where my original consultant was as logical as I was. I decided to have a hysterectomy. At 35 years old and without yet having children. To me it seemed like a non-brainer. As it did to pretty much everyone else we discussed it with. Everyone fully supported my decision – this made it easier.
. .. to be continued