Doing the job I do, I get to meet many women, all with a story to tell.
I met this lady and was blown away by her bravery, determination, motivation, drive and selflessness. Clare Baumhauer is an exceptional woman, despite her own Lichen sclerosus/vulval cancer (LS/VC) journey, she has selflessly set up Vulval Cancer UK Awareness. She is a strong, empowering role model for many women. Clare has consented to share her story to help all women, in the hope that they can get the right diagnosis, at the right time.
Clare, can you please tell me about your awareness group?
I started my Vulval Cancer UK Awareness (VC) support group first and later joined a Lichen Sclerosus (LS) group and met Emma Norman, who runs the LS group. I was already raising awareness on my Instagram and Twitter, but we joined together and started the Facebook page – Lichen Sclerosus/Vulval Cancer UK Awareness and website 2 years ago. We also started our #knowyourvulva yearly campaigns to further raise awareness.
How did you become aware of VC/LS?
The first time I heard about VC was when the GP said I could have VC after many years of being told I had thrush. Looking back to being a child of about 5, I had vulval itching and was told I had cystitis even though the GP didn’t examine me. My symptoms came and went over the years, but I still went to see many GP’s in my 20’s and 30’s multiple times but was told I had thrush every time. Then finally a GP did a swab which came back clear; so a blood test was taken and this didn’t show up anything untoward. So, I was told it was probably early menopause symptoms and sent on my way with no support, advice or anything. I had regular smear tests, this was when I had white patches on the vulva and a tear and nothing was mentioned by the health professionals.
I went back after a tear in my perineum wouldn’t heal and had turned into a ulcer which got bigger and bigger, I was 43. At first GP said it was herpes and to go to a GUM clinic. I was shocked so she asked how many partners I had, and I said just my husband since the age of 18. She then looked again and said it could be VC, so I was urgently referred for a biopsy which showed LS and VC, again I had never heard of LS either. Looking back, we realised I had LS since a child so left undiagnosed and untreated turned to cancer.
What triggered you to start VCUK Awareness?
As I hadn’t heard of either conditions and no one I told had either, including many health professionals; I started to look on social media for advice and didn’t find anything at first. I then came across a gynaecological charity on twitter which didn’t do much for VC and then found 3 more charities, but they didn’t include VC. So, I decided to start my own awareness group. My first story went viral and many women contacted me to say they had similar symptoms to me and after seeing my story went back to the doctors and mentioned LS which got them diagnosed after years of being told thrush too. I had to keep going and give VC and LS a voice.
What advice would you give women?
To look at their vulva at least once a month so you know what’s normal for you and report any changes you see to your doctor. If any treatment you are given doesn’t help then go back, and ask to be referred to a specialist as I don’t think that thrush is as common as they may think, as it could be LS.
What practical tips can you share?
Check your vulva and keep a diary and photos so can note and compare any changes and what could be causing any flares. If diagnosed with LS then use a emollient regularly as well as a steroid. No one should use perfume products and wear white cotton knickers.
CHECK YOURSELF OUT LADIES