November 2018

It all started years ago, when I was a child. I went to the doctors more than ten times about the same symptoms, seeing different GP’s who always told me it was cystitis or thrush. Sadly nobody noticed there was a difference between my symptoms – itching, burning and white silvery patches - and thrush or cystitis. 

As a small child I remember having to wee in shower as it was so painful to wee. I would cry myself to sleep at night because the itching was so intense sometimes. This condition has stopped me from doing so much, just walking and sitting some days was unbearable. 

In my thirties I had multiple blood tests, swabs and was told it could be early menopause. At the time I didn’t know I actually had a skin condition called lichen sclerosus that wasn’t picked up for years.

Eventually a couple of years ago I noticed a tear in the same area that happens when you have a baby – I just thought it would heal by itself. I had my smear test and nothing was said and came back clear once again. 

Then in 2016 it started to get bigger with raised edge, like an ulcer. So I went back to the doctors, to a new GP. She examined me and at first thought it was herpes, and ask how many partners I had had, I said I’d been with my husband Matthew for 26 years, so it obviously wasn't that.

But then she said it could be vulval cancer. I'm glad now that I saw her; someone else might have missed it again! I was urgently referred to hospital and I was told I had lichen sclerosus and vulval cancer. I had never heard of either condition!

In May 2016 I had the surgery to remove tumour from my perineum, but they couldn’t get clear margins so I had to have radiotherapy. Unfortunately the cancer had spread to my lymph nodes so I then had further two operations on my lymph nodes and more radiotherapy. 

These operations put me straight into the menopause and now have lymphedema in my legs, pelvis and abdomen, among other side effects.

I'm very angry that the lichen sclerosus was missed for so long. If it had been caught five years ago or more, it might not have turned into cancer as there's only a small chance of that happening with vulval lichen sclerosus. If there was more awareness of the symptoms both within the medical community and for the public, things could have been so different.

In online communities, I have found a lot of people have the same thing and they're always told that it’s thrush or herpes, or that they are too young.

Now my GP will know what it is if anyone has similar symptoms, but unless a doctor has seen it, people like me will keep slipping through the net. It's not just affecting older people either, but young people too. I've not missed a smear and they came back clear, so it is important to keep going and questioning your GP if you feel something still isn’t right. If nurses are trained in lichen sclerosus and vulval cancer then lives could be saved!

Just don't be embarrassed. Go to the doctors, and question why you are still having issues. I’m now trying to raise awareness of both these conditions as they are rare and not talked about enough! 

Clare Baumhauer

More information on lichen sclerosus here.

Information on vulval cancer. 

Dr Emma Edmonds on lichen sclerosus.

For support, visit The Association for Lichen Sclerosus and Vulval Health.