CLARE’S JOURNEY
After 38 years of symptoms I got a shocking diagnosis.
From the age of around 5, I remember being really sore and itchy especially at night. I would cry when peeing as it would sting and burn.
From the age of 9 to 43 I had visited the doctors multiple times with vulval symptoms of itching, sores, blood blisters, tears and pale/silvery skin to be told it was cystitis, thrush multiple times, menopause symptoms and even herpes.
In all those visits to the GP I was only looked at once and had a swab for thrush in my 30’s which came back negative to an infection so was sent on my way with still no diagnosis.
At around 40 I noticed a tear that wouldn’t heal and over the next couple years it turned into an ulcer but I didn’t want to go back again to the doctors after all the other times. After all my smear tests always came back ok and the nurse never said anything looked wrong.
A couple months later the ulcer grew much bigger so I had to go back .This GP actually asked to look and she said I need a biopsy so 2 weeks later I went and had 3 biopsies taken.
10 days later I got the shocking results of not just one but two diagnoses! Lichen sclerosus and vulval cancer.
The next few weeks was a blur of blood tests and scans and waiting for my treatment plan. In May 2016 at 43 I had surgery to remove the tumour and a sentinel node biopsy. Unfortunately they couldn’t get clear margins because the cancer grew aggressively between my scans and surgery so I had to have 25 sessions of radiotherapy over 5 weeks. At that time I was told it was stage 1 but after my radiotherapy finished I still had a swollen lymph node on my left groin so they decided to operate and take some nodes out to test . 6 nodes were removed and 3 were cancer so now as it had spread it was stage 3.
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I had lots of problems after my second surgery with infections and more surgeries so spent a month in hospital and then I had to have radiotherapy again and this time 33 sessions over 8 weeks on all the remaining lymph nodes on both groins and abdomen.
The radiotherapy was the hardest part of my treatment and has left me with many long term side effects including instant early menopause, lymphoedema in my left leg, vulva and abdomen ,pelvic radiation disease, fatigue and nerve damage. It was a hard time for not just me but my family as my treatment took 14 months . It’s been hard because you don’t go back to before and have to change what you thought the future was going to be like.
I still have lichen sclerosus as there is no cure as it’s a common chronic skin condition which because it was left undiagnosed and untreated turned to cancer. Once you get over the guilt and start to think you can have a quality of life and get help for all the side effects and reach 5 years remission you can plan ahead again which is hard as you feel like a ticking time bomb.
I was just approaching my 7 years remission when at my 4 monthly check up I needed biopsies again as I had a sore area that wasn’t responding to steroids and unfortunately in May 2023 my remission came to an end and I had my 5th surgery as pre cancer (dvin) and cancer was found .
They got clear margins with the cancer however not the pre cancer (dvin) so I’m monitored every 3/4 months and next month I have my yearly scans and check up and hopefully will be my 3rd year in remission again . My consultant did say my 5th surgery probably wouldn’t be my last, for now I take it 4 months at a time.
During my treatment I had time to look into both LS and vulval cancer as like most I had never heard of either. I was angry that I had been misdiagnosed for 38 years! Why wasn’t it picked up during my smear tests, to be told nurses and most doctors don’t have any training in vulval diseases. We know vulval cancer is rare but shouldn’t mean it’s not talked about or given the awareness it should!
LS was thought to be rare but it’s just rarely recognised. I wanted to do something and put my anger somewhere and help others so I started support groups and did all that i could to raise awareness and get change! 8 years on I am tired of fighting for both but I won't stop!
One of the things I had been involved in is the LS resource which is a guide to help both those with symptoms, a diagnosis and for health professionals as this was something I wish I had to help me.
What needs to change is that we are told to check our vulva and to get to know our normal and then any changes to see a doctor and one that looks at the vulva and if treatment doesn’t help to refer for tests.
Don’t ignore that itch and please don’t be embarrassed to get any signs and symptoms checked.
Remember if in doubt get checked out .
