First, let me apologize for the terrible pun, but the topic of today’s blog post needs some levity. And even if you don’t know anyone with lichen sclerosus, keep reading because much of this info is important and might be useful to you anyways, especially if you’ve ever wondered how to center sexual pleasure when you have genital symptoms.
The Basics of Lichen Sclerosus
If you’ve never heard of the skin condition lichen sclerosus, it might be because the condition is rare, affecting between 0.1% and 3% of people. But it might also be because folks still feel shy and awkward talking about anything related to genitals. Here at Sex Sense, we think knowledge is power, especially against sex negativity, so read on.
Lichen sclerosus can affect anyone of any age but is more common post-menopause and in folks with a family history of the condition. It causes inflammation, lightening of the skin, itching, burning, pain and breaks in the skin. These symptoms are usually found on the genitals and/or around the anus, but lichen sclerosus can affect other areas of skin too. Without adequate treatment lichen sclerosus can cause scarring and atrophy (where the tissue becomes thinner) which can in turn cause problems with erection, urination, and intercourse.
We don’t know exactly what causes lichen sclerosus, but it is probably a combination of auto-immune and genetic factors. We do know that lichen sclerosus is not contagious.
Diagnosis and Treatment of Lichen Sclerosus
Usually, it takes a referral to a dermatologist, urologist, or gynecologist to conclusively diagnose LS. But if a primary care provider, sometimes informed by a consultative service like RACE, suspects lichen sclerosus, they can take a biopsy of the affected skin and prescribe treatment to hopefully settle down symptoms. And this is important, because early treatment helps prevent long-term and hard-to-reverse complications.
First-line, gold-standard treatment for lichen sclerosus is a strong topical steroid applied directly to the affected skin. Folks are often hesitant to use steroids, but in the case of LS, the steroid is what the body needs to settle down the inflammation. Once LS is treated initially, folks usually need maintenance treatment (more topical steroid, just less often) to keep symptoms at bay.
LS increases the risk of skin cancer on the vulva. One more good reason to keep up with treatment: early research suggests that maintenance treatment can reduce that risk.
But what about pleasure with lichen sclerosus (or any genital condition)?
Most information available online about lichen sclerosus is quite medical, and that misses something really important. LS can change how a person’s genitals look and feel, so it can also change their body-image and self-esteem. Isolation, despair and thoughts of suicide are common among folks with lichen sclerosus. It is common for folks to think that their sex lives are over.
But this doesn’t have to be true! Folks with lichen sclerosus can absolutely have amazing sex lives.
So can anyone with a condition that causes them changes to their genitals. And really, the ways to do so are relevant for anybody – they are as universally applicable as it gets. It turns out, the keys to a happy healthy sex life are the same for everyone, whether you or a partner have an lichen sclerosus diagnosis, another genital condition, or not.
Tips for a Great Sex Life with Lichen Sclerosus or Other Conditions
Here is a short list of ways folks with lichen sclerosus can reclaim sexual satisfaction and pleasure:
- Be gentle with yourself.
Try to be mindful of your inner monologue and be as kind to yourself as you can. Treat difficult emotions like house guests; give them a cozy space (and maybe a snack) and remember they won’t stay forever.
- Say ‘yes’ to lube, and ‘no’ to unwanted pain.
LS makes genital skin more fragile, so reduce friction with a water- or silicone-based lube with minimal additives. Slow down and focus on what feels good. Don’t push through unwanted sexual pain.
- Reacquaint yourself with pleasure.
Take lots of time to rediscover sexual pleasure, with and without a partner. Use all the tools in your toolkit: curiosity, erotica, sex toys etc. Aim to be an expert in what feels good to you.
- Ask for what you need from your partners, and let them rise to the occasion:
It can be tempting to hide our insecurities and to anticipate rejection from partners. Instead, own your needs and expect sexual partners to be patient and supportive–they will probably pleasantly surprise you.
- Be proactive about sexual health care.
lichen sclerosus is a lifelong condition, so regular sexual health care is important. Build a team of professionals to help keep you healthy. Consider mental health support and pelvic floor physiotherapy.
- Find quality information.
Not everything you find on google is worthy of the space it might take up in your brain. Insist on good-quality, evidence-based and sex-positive information. You deserve the best.
- Find community with people who understand what you’re going through.
Start by checking out these amazing lichen sclerosus resources: Lichen Sclerosus Support Network and The Lost Labia Chronicles.
Thanks for reading and don’t forget to contact Sex Sense if you have any questions.
The Fine Print
Sex Sense is a free, pro-choice, sex-positive, and confidential service. Our team of registered nurses, counsellors, and sex educators offer information and resources on sex, sexuality and sexual health. You can find our hours and contact info at www.sexsense.org.
Please note: This post contains general information that may not apply to everyone. It is not a substitute for professional medical diagnosis and treatment or counselling and other mental health supports. If this is a topic that impacts you, please follow up with questions about your own specific situation. We will answer you privately and provide the appropriate information resources.”