One woman reveals what it's like to suffer from lichen sclerosus

The itchy skin condition affects the genital area. Here's Isabel's story...

Woman crossed legged crotch discomfort
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"The doctor at my local GUM clinic examined me down there and immediately said that I had lichen sclerosus. I had no idea what that was and why I had it," says Isabel, a sufferer from this genital condition, who was operated on the affected area just yesterday.

When she was 48, Isabel entered the menopause. At the time, she was leading a super fit and healthy life style, but she did suffer from an anterior prolapse, which is relatively common in women of menopausal age. Isabel had an operation to rectify the prolapse which went well. But a year and a half after the operation her problems started.

"It started with a really bad itch in my vaginal area", she says. "It was so bad that I would wake myself up scratching at night. I thought it was a bout of common thrush, so I applied the usual cream and didn't think much of it. But the itching continued."

"One day I found there was blood in my knickers. My first response was that of joy, as I thought my periods had come back after a long time, which I was happy about. But then I realised that the blood was caused by me scratching so much."

"Things just didn't feel quite right, so I took a mirror and had a look at myself down there and I was devastated by what I saw. The architectural structure of my vagina had completely changed. The top of my labia had sealed over. I couldn't see my clitoris anymore and my labia had reduced in size by half. It was almost like my vagina was being reabsorbed by my own body. Plus there were white patches everywhere."

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"I had no idea what had happened to me and I completely panicked. I booked myself straight into the local GU clinic. The doctor there was amazing, she examined me and immediately said it was lichen sclerosus. I was told to apply this super strong steroid cream for a month, which was really painful as it thins your skin. I hated using something so strong on such a sensitive area, but it did cure the itching, although it did not unseal my labia."

What is lichen sclerosus?

"lichen sclerosus most commonly occurs in women of menopausal age (but men can suffer from it too). There is also an increased number of cases amongst prepubescent girls. Lichen Sclerosus predominantly affects the genital area, symptoms include itching plus thinning and shrinkage of the genital area.

The cause of lichen sclerosus is yet unknown as more research needs to be done into this. To date, several possible causes have been proposed. Lichen sclerosus might be triggered by a shift in hormones (either during puberty or during the menopause), or by a trauma to the area (in Isabel's case this could have been her anterior prolapse operation).

It has also been proposed that lichen sclerosus is an autoimmune disease or that it might be a bacterial or viral infection. Another theory altogether is that people who do a lot of cycling are more susceptible to it. A possible risk factor for contracting lichen sclerosus is your genetic disposition, as higher cases of it have been reported amongst family members.

When Isabel first heard she had the condition, she had no idea what it was. "So I started to look online and found lots of forums, but the information about what causes it and what you can do about it was confusing. I kept coming across this one theory that states that it might have something to do with the amount of chemicals that enter our body one way or another, either via the skin of fruit and veg, or via deodorant and other beauty products."

"I thought it was worth a try to do a total detox, so I threw away all my beauty products and bought only non-scented organics ones. I also bought organic cold-pressed olive oil and coconut oil which I now apply to the affected area daily. This has definitely helped as it keeps the area moist, but this daily routine is quite inconvenient. When I go travelling for example, I have to take the oil in small containers to go through customs. I also can't cycle or do my spin class anymore, because that sort of exercise aggravates the area. I also need to try and avoid having too much stress in my life, as stress is another factor makes the condition worse. Another complication is that although I can have sex, it's not as satisfying as it used to be."

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"I actually had an outpatient operation yesterday to have the labia unsealed. I was operated on under general anaesthetic whilst the doctors pulled the sealed area apart. I now have to do my utmost to keep the area from healing over again. I have to apply the steroid cream again and keep the area moist at all times. Unfortunately, I don't think that my clitoris has made a reappearance yet. The doctor said it's there but it's very flat, I'm quite disappointed in that and really hope it will reappear soon."

"Having lichen sclerosus is on my mind every day. When I first found out I had it, I was totally devastated. I became really depressed about it and I couldn't talk about it with anyone. Of course I told my friends and they felt sorry for me, but they just didn't really understand. I felt quite resentful for some time and asked myself why this had happened to me."

"What I'd like to emphasise to anyone out there is that if you have any itchiness down there that goes on for longer than a few days, don't leave it. Keep checking, keep looking, you know what normal looks like, so keep looking before it becomes abnormal. Women don't really look at themselves down there as it's not that obvious for us compared to men, but you really do have to keep checking. Don't presume that it's thrush. If I had caught this much earlier on, I might be okay now."

For further information and support on Lichen Sclerosus, please go to the Lichen Sclerosus UK Support Group and the Lichen Sclerosus UK Facebook Group.

Laetitia is a PR manager for a creative agency and a freelance journalist.
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