Guest post by Clare Baumhauer
Finding out you have cancer is hard. Being diagnosed with a cancer I’d never even heard of, after so many years of being misdiagnosed, was much harder.
I’m 45 and now know I’ve had Lichen Sclerosus since I was a child. For years, over and over again, I was told I had cystitis, or thrush. Most doctors didn’t even bother looking at me.
It’s hard and embarrassing going to your doctor or nurse, but I kept going back many times over the years. Eventually I got to the stage where I thought burning when going for wee, and being sore and itchy on my vulva, was normal – especially seeing all the adverts for creams to treat that kind of thing.
I had a tear in my perineum which didn’t heal, and went for a smear test. It came back fine, like all the others I had attended, and the nurse didn’t say anything, so I brushed it off and carried on.
Then, late 2015, I noticed the tear had turned into a small sore. I kept putting off going back to the GP because of all the other times I had been. I thought as I’d had my smear test, and that was all clear, then everything must be fine.
By January 2016 the sore was getting bigger and by March it hurt to sit so I made an appointment with a different GP. At first she said it was herpes, and to told me to go to a GUM clinic. I wouldn’t have gone anyway, but after telling her I’d been married 25 years she looked again and said actually it could be vulval cancer.
I was referred to a gynaecologist for a biopsy, and three weeks later I was sitting in a room being told I had both Lichen Sclerosus and Vulval Cancer.
I hadn’t heard of either condition, and was angry to find out that LS has a 5 per cent chance of turning to cancer if left untreated for many years. I was so upset that it had all that time to spread, and has now left me with only a 40 per cent chance of surviving five years or more.
Just because vulval cancer is rare, it shouldn’t get less awareness and research. Both LS and another skin disease, vulval intraepithelial neoplasia (VIN), can be prevented from developing into vulval cancer if diagnosed early. If my condition had been diagnosed much earlier, there would have been far less chance of it turning into cancer, and it would have minimised the chance of spreading to other areas of the body.
After joining support groups, I found I wasn’t alone in being told it was thrush, cystitis, or any number of other things. Most of the women I’ve spoken to assumed that when you have a smear test it checks for other gynaecological cancers, and that a nurse would recognise any worrying symptoms. But unfortunately they are not trained in all these gynaecological conditions and, particularly as both LS and Vulval Cancer are more commonly diagnosed in menopausal age, it is often missed.
Even for some women who are diagnosed with LS, it is not taken seriously enough. Many GPs and gynaecologists don’t even inform their patients about the cancer risk, or about the need to have check ups at least yearly, and use a steroid for the rest of your life.
It’s not the doctors or nurses’ fault. We need more awareness, training and money spent on these conditions in general practice surgeries, as many women have to wait months for an appointment with a specialist dermatologist or gynaecologist.
For the last year I have been campaigning along with Emma Norman, who also has LS, and together trying to raise as much awareness as possible. We hope to make radical changes on early diagnosis, especially as vulval cancer doesn’t yet have its own awareness week/month, and gynaecological cancer awareness month tends to focus on ovarian and cervical cancers.
Many of these campaigns only discuss the main two, which most women have already heard of. Even when there is a chance to help raise awareness, charities, doctors and health pages too often talk only about HPV, cervical cancer and smear tests, and don’t include any mention of vulval or vaginal cancer. That’s despite the fact HPV is also a risk factor in some vulval cancers, and having had cervical cancer also puts you at more of a risk.
After Clare submitted her guest post to Hysterical Women, I also pitched her story to Broadly. You can read my feature on lichen sclerosus for them – featuring Clare, as well as experts in gynaecology, oncology and dermatology – here.