I was diagnosed by myself with Google at 56 after 5 gynecologists. Despite being a nurse I had never heard of any vulvar lichenoid diseases. I fused rapidly . It was relentless burning, stabbing ,needle like pain. In 3 months I lost one labia, 50% of other and had clitoral phimosis. The pain of clitoraldynia rendered me unable to function. I ended up losing a job I loved and going on disability. My life is forever altered. I eventually had lysis of adhesions .All activates of daily living are compromised. Depression is a struggle. The lack of education within the medical community does kill women. 60% OF vulvar cancer is undiagnosed lichen sclerosis.
I am not a stranger to the dark
Hide away, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are
But I won't let them break me down to dust
I know that there's a place for us
For we are glorious
I was about 9 or 10 when I first thought that there was something wrong with me. I would find myself scratching my vagina in my sleep. I didn’t feel I could talk about it to anyone. I was too ashamed, I thought I was dirty. In the early eighties it wasn’t something people would openly talk about. Looking back on it now, we had bleached coloured toilet paper and itchy washing powders! I would constantly have cystitis and constant constipation. As I got older I would have to hide my knickers from my Mum, and put them in the bin. They would be worn and covered in blood (not from my period). I found periods impossible ! These really made me scratch. Pads would thoroughly irritate. Friends from school would invite me to stay. I didn’t want to lose them as friends so I would go along praying they wouldn’t notice anything. I’d make sure that all the covers were over me at all times. When I met my first husband sex wasn’t painful at all but my skin would bruise a lot. I went on to having two beautiful children. I always remember the midwife asking me if I was a horse rider, she said my vagina was very tight. As the years went on in my first marriage it wasn’t too bad. But when I got divorced I suffered a tremendous amount of stress and my vagina caused so much pain and discomfort that it become unbearable! My bottom became itchy and patchy too. I had a few relationships but nothing too serious as I was embarrassed they would look at it too closely when it was bad and I couldn’t keep up with having sex on a regular basis as it would cause too much pain. I went backwards and forwards to my my GP only to be told I had severe thrush. Once they even said it looked like Herpes. I had blisters and the skin was covered in thick white patches. No one knew what it was. This happened on many occasions re the thrush but the problems got worse. I kept on getting recurrent urine infections too, including a kidney infection. Anyway I just thought it was thrush right up until at the age of 43 when I happened to be watching a programme called Embarrassing Bodies and there was a lady on there who was diagnosed with LS. I thought to myself, hmm these are all similar symptoms to mine. I’d never heard of LS until then. I spoke to my GPS nurse and she said it could be and that was it. A few months after watching Embarrassing Bodies I had the worst flare ever, it was blistering and so uncomfortable. The vagina had turned completely white and bruised. I even found a red looking boil once! I couldn’t bare to walk or sit down. It was debilitating. I took myself to the sexual health clinic. I didn’t know what else to do. She took one look and said you’ve got LS. Your vagina has completely changed I’m afraid. The labia minora has completely flattered. They also said the clitorus couldn’t even be seen. It makes sense now. I wasn’t going mad, I am not a freak , no wonder I had trouble climaxing for so long ! I felt relieved to be honest. They refereered me to a specialist who then confirmed diagnosis, there wasn’t any need for me to have a biopsy as the diesease had gone too far. I started using the clob and I feel so much better. I still get my bad days but nothing like before. This disease causes not only great physical pain but also mentally damages you. It’s so important for people to get diagnosed early. I have found life better with my LS buddies on the Uk awareness site. It’s so lovely to know that I am no longer alone !
Write something about yourself. No need to be fancy, just an overview.