Why I'm Speaking Out About Lichen Sclerosus

Shhhhhh!
“You cannot talk about it!”
“It’s shameful.”
“Nobody talks about it!”
“You are too young to have that!”
“It comes from being abused as a child.”

Yes, I have heard it all. Every one of those sentences above have been said to me when I have tried to discuss my condition with doctors or family.

To look at me you would never know that I have struggled from early childhood.

The need to itch has always been there. I was made to feel ashamed for touching myself when all I wanted to do was scratch the constant itch! Private parts are private and not to be touched or discussed. I was raised in the early 1980’s not in the Dickensian era.

Underwear that was not cotton irritated me, but the irritation was put down to my allergy to nylon and quickly and quietly replaced when I complained of being sore.

The following years of suffering in silence were due to the burning caused by sanitary pads in my teenage years, and don’t even mention tampons!

To most young women tampons are a way to keep on enjoying an active life when your period starts, but for me tampons were items of torture that I avoided at all costs.

I just thought at the time the sanitary pads caused the burn like marks and blisters were normal and everyone suffered like me, in silence.

The pain got so bad that I resorted to wearing folded cotton cloths instead and would wash them out in secret. I was ahead of my time as reusable sanitary pads are all the rage now!

I wore folded cotton cloths not because I was being eco-friendly back then, but because little did I know, I had lichen sclerosus.

I went through my teenage years soaking in baths at every opportunity and wearing no underwear when I could get away with it. I enjoyed being naked, not because I was a rebel but because it helped ease the pain and also helped with the healing of the fissures caused by scratching, sanitary pads burns or friction burns from garments being tight.

When I eventually became sexually active I was suddenly aware that I was not like other women.

I was naturally neat and tidy, I was asked if I had surgery!

The truth was because I had lichen sclerosus from such a young age, I did not develop like a normal teenage girl when I went through puberty. I got my periods but no changes took place in my female genitalia apart from very sparse sprinkling of pubic hair.

“Women would pay a lot of money to look like that down there.”

Believe me when I say, they would not want all the pain and suffering I have had because of this little talked about condition.

Intercourse was painful and left me torn and in agony. I thought every woman felt like me. The topic of sex was never discussed in my home or in my school, even in sex education “act of copulating” was glossed over very quickly to avoid any unnecessary embarrassment on the part of the teacher. I guess because we were not invited to ask questions or told what our genitalia should look like or more so, what to do if it didn’t.

I eventually became pregnant and gave birth, very painfully to my first daughter aged 22. I have to say I have never seen so many doctors and trainees come and “have a look” at my genitalia. I felt like rare exhibit in a sideshow.

My thoughts are and were, “let them look!”

If it helps just one other woman then, all the stares, sharp intakes of breath, along with the endless questions were definitely worth it.

I collected what was left of my dignity from the bucket by the door, where I left it on my way into the labor ward.

My husband always knew I was “delicate” and often though I was saying I hurt or I was sore just as an excuse.

About a month after the birth of my first daughter I was seen by my gynecologist who explained that the healing process was not as it should be and the birth was so traumatic for me because he thought I had lichen sclerosus.

He was sending me to see a specialist, where I would undergo a skin biopsy to be tested to confirm his theory.

The biopsy was painful because I was numbed by local anesthetic by needle in my genitalia. I am not ashamed to say I screamed very loudly, much to the embarrassment of my husband, as all the waiting room could hear.

A biopsy was taken from two places of concern and stitched.

The healing was slow and painful as the sites of the biopsy were opposite and the stitches would catch as I walked if I did not wear extra padding to separate the two knots. The results were back in a few weeks and the gynecologist that took the biopsy, informed me that I did indeed have lichen sclerosus.

The gynecologist had invited two of her colleagues to join my consultation as I was so young to have this condition and explained that this was rare.

My gynecologist, a dermatologist and another gynecologist asked if it was OK to “have a look.”

I consented once again. Young women like myself or even children could have lichen sclerosus, and if these doctors knew what the signs of lichen sclerosus looked like, then they could help ease the suffering of a girl like me.

Twenty years have gone by since my diagnosis, two more daughters and another biopsy have since taken place.

I continue to get flare ups, tears and fissures. My perineum has totally gone due to constant tears and scarring, the skin fusion is gradually getting worse.

But at least I am now aware of what I need to do to maintain my lichen sclerosus and know I can visit a doctor and discuss any concerns. Although most doctors still refer me to a specialist as they have never seen a young woman with this condition or seen the condition at all.

I have a few dark spots but a close eye is kept for any change, as the chances of developing cancer of the vulvar are higher with lichen sclerosus.

Mainly the treatment is with steroid cream, and recently I have been given antihistamine to help me not scratch while I sleep.

Keeping the area clean and dry, rinsing after using the toilet and only washing with emollient.

The air is best free flowing so long flowing clothing is ideal, so the world is not aware you walk naked amongst them!

I also have lidocaine if the fissures get too painful.

No perfumed body wash or luxurious bath products are used as they can irritate. Most importantly, the management of this condition is by using the steroid cream as directed, moisturizing, being aware of any changes and not being afraid or ashamed to talk to your partner, family and doctor about any concerns you may have.

I have lived all my life with lichen sclerosus and know that the silence that surrounds it is not helpful. I have made my daughters aware of my condition. They know what to look for themselves and we can only hope they never have to struggle alone with this as I did.

Education is the key to this condition no longer being a taboo subject.

Lichen slerosus doesn’t just affect ladies over 50, though this is the most common.

Lichen sclerosus can affect men and women of all ages, including children. Lichen sclerosus doesn’t just affect skin of the genitalia.

Lichen sclerosus is not an STD and you can not “catch it.”

I personally don’t know anybody with lichen sclerosus and had to search for help, support and advice and found that the people online I have chatted with, who are just like me. I find relief in the knowledge that I am not alone with this condition. It helps to talk and stop the stigma of not talking about our genitalia and conditions that may affect it.

Even if you have no firsthand experience of lichen sclerosus, it is priceless to those of struggling with it if you show kindness and compassion. After all, we are all human.