What is Lichen Sclerosus?
Lichen Sclerosus is classified as a rare noncurable condition. Researchers are split between it being an autoimmune disease and/or genetic. It can manifest in anyone from toddlers to the elderly, although popular belief is it hits postmenopausal women the most.
Men are at a lower risk of developing LS. One man for every ten women is affected. Most men who are afflicted are uncircumcised.
Since LS is often misdiagnosed many suffer and develop worse symptoms and conditions. Often times when we are finally properly diagnosed we are not given much information. Consequently, we don't exactly know what we are dealing with and what LS can do.
What are the symptoms of Lichen Sclerosus?
For an in-depth explanation click here.
Common Symptoms:
- Itching (mostly at night)
- Burning and soreness
- Fissures, nonhealing legions, and blood blisters
- Excessive sweating between your legs
- Chronic urinary tract or yeast infections
Severe Symptoms:
- The fusing of the labia
- The fusing of the clitoral hood
- Valvular scarring
Secondary Symptoms:
- Depression
- Isolation
- Fatigue
- Anxiety
- Loss of relationships
- Pain during sex, urinating or having a bowel movement
- Valvular cancer
Is Lichen Sclerosus common?
Although listed as a “rare” disease we, the women who have it and some doctors who treat it, believe it is more common. Lack of getting a proper diagnosis the first time means there is a large segment of the population walking around with LS unknowingly.
Listen to what The Association for Lichen Sclerosus and Vulval Health have to say in their LS Manifesto.
How did I get Lichen Sclerosus?
Researchers do not know what causes LS. The current leading thought is that LS is an autoimmune disease with a genetic and/or trauma-induced component.
Just know it is not a sexually transmitted infection or contagious. You did not do anything that made you get it. It was just bad luck.
The good news is there is a whole community of women that have been where you are and are ready to support you. Reach out to us whenever you are ready.
Can Lichen Sclerosus be cured?
As of right now Lichen Sclerosus is incurable but can be managed with proper medication.
Is Lichen Sclerosus contagious?
No, Lichen Sclerosus is not contagious. The current leading thought is that LS is an autoimmune disease with a genetic and/or trauma-induced component.
Is Lichen Sclerosus a sexually transmitted infection?
No, Lichen Sclerosus is not an STI. The current leading thought is that LS is an autoimmune disease with a genetic and/or trauma-induced component.
Can I die from Lichen Sclerosus?
You cannot die of Lichen Sclerosus. Unfortunately, LS does turn into Vulvar Cancer in 1-5% of women because they were not treated properly in time.
Hear about Clare Baumhauer who developed VC after going untreated for 40 years or read her story in her own words.
Can you live a normal life with Lichen Sclerosus?
The short answer is, yes. The long answer is you will need to manage your symptoms, physical as well as mental, and have a circle of support.
The hardest part of being newly diagnosed is not knowing what questions to ask or having someone to talk to. You are not alone! There is a whole community of women who want to help and support you.
If you don't find the answers you are looking for here feel free to ask us.
What causes Lichen Sclerosus to flare up?
This disease affects everyone differently. What might cause your flareups may not cause mine. So pay attention to your body and you will start to learn what your triggers are.
That being said, some of the most common opinions are:
- stress
- diet
- irritants like soap, detergent, bubble bath, shower gel
- the fabric and tightness of your underwear
- urine left on your underwear
- sex
Check out this piece on stress and flareups.
Does stress increase Lichen Sclerosus flareups?
Although there isn't much research on this topic, the public opinion amongst us who have Lichen Sclerosus is yes.
Click here for more information and 10 tips to cut down your stress.
What if my corticosteroid treatment stops working?
If your topical treatment stops working notify your doctor ASAP. Do not leave your Lichen Sclerosus untreated.
Your doctor should figure out what is happening and discuss your options with you. There are alternative medical treatments available but you should be fully informed before choosing that route.
Listen to this episode with Dr. Elizabeth Eden discussing the MonaLisa Touch, a CO2 laser treatment.
What is the proper way to take Clobetasol?
Will Lichen Sclerosus affect my sex life?
LS can make the skin thin causing it to tear easily. As it heals the tears can scar and reduce the elasticity of the skin.
Having sex can be painful if you are suffering from tearing or scarring.
Please talk to your partner and explain what is happening to your body and how you are feeling about it. It is possible to come up with new ways to pleasure each other if you communicate and try new things.
Check out this link for a more information.