Living with Lichen Sclerosus: Amy's Story

LS, also known as Lichen Sclerosis, is a chronic skin disease that primarily manifests around the genitals. Symptoms include burning, flaking, itching, and in more severe cases, even open sores, blisters, and bleeding. This condition can lead to scarring and growths, making the problem even more painful and complex. Unfortunately, there is a great deal of stigma surrounding this condition, causing many people to suffer in silence. Amy shares her personal story to raise awareness about LS.

The first signs of LS

Amy remembers that as a young girl, even before her period, she frequently suffered from yeast infections and bladder infections. She was constantly itchy and experienced a lot of discomfort. These symptoms worsened when she got her period. "When I started having sex, I noticed something was wrong. I was tearing and bleeding almost constantly during sex, which was often accompanied by yeast infections," Amy says.

The long road to a diagnosis

Sadly, Amy was diagnosed with LS just a year and a half ago, after a long and difficult journey. "As a child, I was often at the doctor's and was always given an ointment to take home. Once I started having sex, my symptoms were attributed to the sexual abuse I experienced between the ages of 13 and 15," Amy explains. "It was never really taken seriously until I had a bad Pap smear and had to go to the gynecologist. During the follow-up Pap smear after surgery, the gynecologist discovered white spots and indicated that I likely had a skin condition."

Daily struggle and its impact on life

The symptoms of LS have a major impact on Amy's daily life. "My vulva burns when I ride my bike or wear tight pants. Even when I sit on seats that don't dent, it feels uncomfortable and burns terribly," says Amy. She only discovered these symptoms weren't normal when she researched LS. "I always thought every woman experienced this, but it turns out that wasn't the case."

Amy emphasizes that general practitioners often lack knowledge about LS. "My mother is a physician's assistant, and she's only just now realizing how many women come in with symptoms that could be LS, but which are often not recognized by their GP."

Treatment and relief of complaints

Amy treats her LS with a combination of hormone ointment and greasy ointment. "I use the hormone ointment for three days in a row, and the rest of the time I use greasy ointment. This helps relieve the symptoms and makes everything feel a bit smoother," Amy explains. Although hormone ointment isn't always popular due to the potential side effects, Amy does find that it keeps her symptoms under control.

Living with LS: Sexuality and Relationships

The impact of LS on Amy's sex life is significant. "I haven't had penetration in five years because I tear and bleed constantly. But I think with a lot of patience, time, understanding, and plenty of lubricant, it should be possible," says Amy. She emphasizes that oil-based lubricants are best used with LS, as other types are often drying.

Advice for others with LS

Amy advises women who suspect they have LS to see their GP and ask for a referral to a gynecologist. "Don't let the GP make the diagnosis, because their knowledge of LS is often too limited. A gynecologist or a vulvar clinic has more expertise."

In addition to medical treatments, Amy also uses LottePads. "I take the pill continuously because of endometriosis, so I haven't used the pads during my period yet. But when my pelvic floor is more active or I'm wearing tight pants, I do use them. They provide more cushioning and act as a cushion, without the cramped feeling of disposable pads."

Amy emphasizes the importance of good products and knowledge about LS to alleviate symptoms and break the stigma. "It's crucial that women know they're not alone and that there are solutions that can improve their lives."