This blog post originally appeared on The Womb Project website which is a side project of mine. Clare Baumhauer has given me permission to share it here to help raise awareness.
"It's hard for me to tell my story; it is personal, but if I can help just one person it will be worth it.
It all started years ago as a child and I easily went to the doctors more than 10 times about the same symptoms and saw different doctors.
I was told it was cystitis, then thrush, multiple times.
They should have noticed there was a difference between my symptoms and thrush or cystitis.
I got fed up with being told the same things. I had the same symptoms, itching and burning, and white silvery patches.
As a small child I remember having to wee in the shower as it was so painful. I would cry myself to sleep at night because the itching was so intense sometimes..
In my 30’s I had blood tests, swabs and was also told it could be early menopause.
It turns out I had a skin condition called Lichen Sclerosus for years and it wasn't noticed. LS has stopped me from doing so much. Just walking and sitting some days was unbearable
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. I had my smear test and nothing was said and it came back clear once again.
Then in January 2016 it had become an ulcer type thing. It started to get bigger with a raised edge.
So in March I went back to the doctors. I saw a different Doctor, who examined me and at first thought it was herpes, and asked how many partners I had had, I said I’d been with my husband 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 conditions!
In May 2016 I had the surgery to remove tumour from my perineum, but unfortunately they couldn’t get clear margins so I had radiotherapy but unfortunately it had spread to my lymph nodes so I then had 2 further operations on my lymph nodes and more radiotherapy.
Which put me straight into the menopause and I now have lymphedema in both my legs, pelvis and abdomen, among other side affects.
I'm very angry 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 - there's only a five per cent chance of that happening with vulval Lichen Sclerosus but if I had been using the steroids and having regular check ups and been aware of Vulval cancer as well as GP's and nurses at spotting the symptoms things could have been so different.
A lot of people have the same thing and they're always told it's thrush or herpes, or they to young!
I'm more shocked than angry that the doctors and nurses didn't know about it, they were actually asking me questions about it because I knew more than them.
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 a lot more younger people are getting it now. I've not missed a smear, they came back clear, so it is important to keep going and questioning them. If nurses are trained in Lichen Sclerosus and vulval cancer then so many lives could be saved! Or in my case might not of spread.
Just don't be embarrassed. Go to the doctors, and question why you are having to go back and forth.
I’m now trying to raise awareness of both these conditions as they are very rare and not talked about!
I’m now 1 year cancer free which I’m lucky and grateful for but all the side affects are life changing and the depression and anger is still there!
Why me? Why not me?
I now need to focus my anger into raising awareness and make sure these conditions get talked about, as cancer charity’s, especially the gynaecological cancer charities, don’t do enough for vulval cancer."
For more information about both conditions check out these links.
Lichen sclerosus UK awareness