Hi, My name is Emma Norman and I have Lichen Sclerosus. I was diagnosed at 22 years of age but my symptoms started during childhood (my first recollection was being 5 yrs old and screaming in a classroom)
I stayed away from boyfriends and sexual intercourse because inside I knew something wasn’t right but I was too embarrassed and ashamed to go to the Dr. I figured he would just tell me it was in my head or something similar.
I decided to go see my Dr when I was 22 years old following a discussion with a boyfriend at the time. I had tried to have intercourse but was never able to have penetration due to the excruciating pain.
He had a look at my Vulva and decided to send me for a smear. This was when I heard the sole shattering words from the nurse “were you abused as a child? I can’t even get the smallest speculum in as your too small”
I went home and broke my heart, sobbing uncontrollably. I plucked up the courage that night to get a mirror and look at my Vulva. I was bruised purple, red, white, crinkly, had lost my labia minora where it had fused to my labia majora, my clitoris was buried under skin, I was itching and burning like I was on fire. It was the most horrific sight I had ever seen.
My Dr referred me to a gynaecologist at my local hospital where I met the most amazing consultant. He biopsied me and within a couple of weeks I had my diagnosis, Lichen Sclerosus. He didn’t know enough about it to treat me and so I was referred to a specialist at a well-known London hospital. This is where things took a turn for the worse.
The ladies treating me (one with large pointed false nails whilst doing internal checks) decided to admit me for 3 days and start a dialator treatment to widen the opening of my Vagina. Now Dialators come in packs of 8 sizes. Size 1 being as small as a little finger - size 8 being as big as an ‘average’ penis. At no point was I in control of any of these dialators being inserted into my Vagina!! On the first day she started with size 1, then size 2, then size 3. I was bleeding and in agony and crying. I was burning trying to urinate and it took me a good hour at least to urinate once. On day 2 she used size 3, size 4 and went to try size 5 with me begging for mercy. This was when I contacted my consultant back home and told him what was happening. To say I was being discharged with an apology within an hour would be pretty accurate. In fact he used my ordeal with all female patients using dialators to educate and ensure it was never repeated again.
From there on I was referred to a Gynae oncologist who knew very little about Lichen Sclerosus but was very experimental. I had 3 clitoral hood separations, which never lasted long as the skin always grew back over within a few months, 2 skin grafts with a plastic surgeon which I have to say lasted years so was a better treatment long term as well as countless biopsies for pre cancer cells. I was put on Dermovate from the first appointment with her and have used it ever since (approximately 12 years now).
I must point out that there were some very dark times during the early stages of diagnosis. Times when I felt like a freak, like I wasn’t good enough, worthless, suicidal, in a deep depression and that I would never be able to have a child of my own due to this incurable condition.
Flash forward to 5.5 years ago when I welcomed my beautiful daughter into the world via c section and things couldn’t be more different now.
I won’t lie, sex is unbearably painful still so I still avoid it. But those thoughts and feelings of hopelessness, of not feeling worthy or not wanting to live have gone.
Now I have turned those feelings into passion. A passion to make a difference to many women, Men and children who have Lichen Sclerosus, the ones who have been diagnosed but aren’t getting the help they need and the ones who are still being mistreated for Thrush time and time again, the ones who don’t yet know they have Lichen Sclerosus and need immediate treatment starting.
That is why I run support groups for women and men with Lichen Sclerosus, it’s why I have started the awareness website, Facebook, Twitter and Instagram pages. I want to spread the word and get the symptoms out to as many people as I possibly can so they can get the diagnosis they need. I want medical professionals to have training on Lichen Sclerosus and Vulva Cancer. I want Leaflets in all surgeries and hospitals. I want children to be taught about Lichen Sclerosus in Sex Education lessons at school. I want more research and better treatments. To have stem cell treatments available on the NHS. These are my goals and i hope you will join me in making these things happen.
