Melina – 63 – Shropshire
Due to a diagnosis of endometrial cancer in 2012, I had a full hysterectomy and oophorectomy. The surgery team removed everything, including the cervix, but left the lymph nodes. When I went into surgery, they said they would decide during the operation if they were going to take the cervix. I was afraid they wouldn’t, and I’d have to come back and have that done separately. It was radical surgery and was followed up by five weeks of radiotherapy.
Before I had the radiotherapy, I was told nothing about the possible side effects. I was first offered brachytherapy, where the radiotherapy would be delivered internally, but as I have very bad reactions to zinc (and the wand that’s used has a very high zinc content) that wasn’t an option. I was told I didn’t even have to have radiotherapy if I didn’t want to, but in the moment you’re so terrified. My husband said “…you should have everything you can to prevent it coming back”, which is always the main fear – so I opted to have it as a preventative measure.
I think it was about a year after treatment that I first started experiencing symptoms of PRD. Firstly, I had the post-surgery issues, and then there were the immediate side-effects of the radiotherapy. I went from being horribly constipated to having diarrhoea and an upset stomach for quite a long time after the radiotherapy – it was more like IBS. But then it all settled down and I thought it was finished with.
Then I had what turned out to be the first gastric attack. We had gone away for a weekend, and I thought I was going to have to go to A&E it was just so painful. By the morning it had gone, but after that I started getting them regularly.
I didn’t discover anything about post-radiation effects until I found a Macmillan pamphlet a year and a half later. I sat and cried reading it. Everything just fell into place because it described my symptoms.
At a check-up I said, “I’m desperate, I’m so unhappy”, and they finally sent me to their senior gastroenterologist. He said, “I’m not going to say it was caused by the radiotherapy, but I see a lot of people like you”. I wasn’t sure what to make of that, but it felt like: ‘You’re not alone.’ That’s when I did all the breath tests and [converted to] the low-FODMAP diet. [FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly.]
I’ve been managing things myself and the FODMAP training the hospital gave me has helped me select ‘safer’ foods. I also use an app – you just type a food into it, and it will tell you whether it’s high FODMAP or not. I’ve learnt that peanuts and walnuts are fine, but cashews are not; blackberries are dreadful, but raspberries are fine.
People are used to me arranging something with them and then having to call them a day before and say “sorry, I’m having an attack” and it sounds like you just don’t want to go. We’ve recently moved to a new area and I’m having to explain it to people all over again when I can’t do something I said I would do.
The biggest challenge is being able to live my full life. I have to think twice before I go on holiday and the thought of being in someone else’s house where I can’t have a loo to myself or a place I can go and be ill horrifies me.
I think really carefully now about lifestyle choices – for example, I wouldn’t want to go anywhere now where I had to travel by train. At least if I’m ill in the car we have all the gear, but on the train, it would be very unpleasant. It does limit what I feel comfortable doing.
We have a very organised car, with a bed-pan type of set up, a pee bottle, wipes, towels, etc. At the moment I’m still relatively limber, so I can actually manage those types of things in the back seat, but I have looked at tent-type of things you can set up [outside of the car]. We use the towels as curtains so that I have some degree of privacy.
I haven’t been given an official diagnosis for Pelvic Radiation Disease, and I haven’t been given any help for the sexual issues. I tried to talk to the hospital staff about the intimacy side of things – the vaginal dilators were useless for me and painful to use. I didn’t really get any help there, although they did talk about reconstructive surgery, but I thought, ‘No way is anyone messing about down there!’ The sexual side is as much to do with the hysterectomy as it is with PRD, but I’m sure the radiotherapy has made things a lot less elastic. Of course, I’m 63, so I could have been having these problems due to menopause, post-menopause, and oestrogen levels anyway. But the radiation played a part, I think, given where it was delivered – but it’s very hard to know.
I went for a check-up and said I wasn’t managing. I mentioned the dilators but they said they hadn’t given them to me so I could still have sex, but just so they could still examine me. My daughter saw what they’d given me and took me to a women-only sex shop, and they were lovely. They give a discount if you’ve had cancer and I bought a set of dilators and lubricants which were much more comfortable. But even with those I couldn’t get really comfortable – it was just too painful. And I think that must have been because of the radiotherapy because it wasn’t the case before.
I found out about the Pelvic Radiation Disease Association (PRDA) online. I wanted to help other people, especially with the sexual side because I am quite open about it and because a lot of women my age wouldn’t have a daughter who would take them to a sex shop!
I went to a group with women who had had endometrial cancer to talk about diet and we all went out for coffee afterwards. So much of those conversations were about the late effects people were experiencing. I thought ‘this is what women need’ – it was somewhere to go and talk together. So, with that in mind, I came to PRDA with the aim of contributing. And then I found I was getting support that I wasn’t necessarily expecting. There is someone whose symptoms are very similar to mine, and that was a relief, to talk to someone else who had the same sort of pain and the same sort of issues. I just recognised it when she spoke and I thought, ‘yes, that’s my experience.’ And I hadn’t heard from anybody else having the same as me and was starting to doubt myself.
Before you have the treatment for cancer, you must sign a consent form, and you think, ‘what alternative do I have?’ I just don’t want cancer. When you think the options are dying or having this, what do you do? You do really fight your corner and try not to be embarrassed about the fact that you are endlessly talking about sex and farts… but I don’t care anymore. It has left me angry enough to be very willing to share this experience, because I just feel sorry for other women out there who may be going through something similar.
Page modified: 3rd March 2022