First off, 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 information is important and may be helpful to you anyway, especially if you’ve ever wondered how to focus on sexual pleasure when you have genital symptoms.
Lichen Hard Basics
If you’ve never heard of the skin condition lichen sclerosus, it may be because the condition is rare, affecting between 0.1% and 3% of people. But it could also be because people are still embarrassed to talk about anything related to genitalia. Here at Sex Sense, we believe that knowledge is power, especially against sex negativityso read on.
Lichen sclerosus can affect anyone of any age, but is more common after menopause and in people with a family history of the condition. It causes inflammation, bleaching of the skin, itching, burning, pain and breaking of the skin. These symptoms are usually found on the genitals and/or around the anus, but lichen sclerosus can also affect other areas of the skin. 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’s probably a combination autoimmune and genetic factors. We know that lichen sclerosus is not contagious.
Diagnosis and Treatment of Lichen Sclerosis
Usually, a referral to a dermatologist, urologist, or gynecologist is required for a definitive diagnosis of LS. But if a primary care provider, sometimes informed by a consulting service like RACEsuspects
lichen sclerosus, they may take a biopsy of the affected skin and prescribe treatment to relieve the symptoms. And this is important, because early treatment helps prevent long-term and difficult to reverse complications.
The first-line, gold-standard treatment for lichen sclerosus is a potent topical steroid applied directly to the affected skin. People are often hesitant to use steroids, but in the case of LS, the steroid is what the body needs to calm down the inflammation. Once LS is initially treated, people usually need maintenance therapy (more topical steroid, just less often) to keep symptoms at bay.
LS increases the risk of vulvar skin cancer. One more good reason to follow up on treatment: early research suggests that maintenance therapy may reduce this risk.
But what about pleasure with lichen sclerosus (or any genital condition)?
Most of the information available on the Internet about lichen sclerosus is quite medical, and this misses something very important. LS can change the way a person’s genitalia look and feel, so it can also change their body image and self-esteem. Isolation, hopelessness and suicidal thoughts are common among people with lichen sclerosus. It is common for people to think that their sex life is over.
But that doesn’t have to be true! People with lichen sclerosus can have absolutely amazing sex lives.
So can anyone with a condition that causes changes in their genitalia. And really, the ways to do this are relevant to anyone – they’re as universally applicable as it gets. It turns out that the keys to a happy, healthy sex life are the same for everyone, whether you or your partner have been diagnosed with lichen sclerosus, another genital condition, or not.
Tips for a great sex life with lichen sclerosus or other conditions
Here is a short list of ways people with lichen sclerosus can regain sexual satisfaction and pleasure:
- Be kind to yourself.
Try to pay attention to your inner monologue and be as kind to yourself as you can. Deal with difficult feelings like house guests. Give them a comfortable space (and maybe a snack) and remember that they won’t stay forever.
- Say yes to lube and no to unwanted pain.
LS makes genital skin more fragile, so reduce friction with water or silicone based lubricant with minimal additives. Slow down and focus on what feels good. Do not force unwanted sexual pain.
- Reacquaint yourself with pleasure.
Take plenty of time to rediscover sexual pleasure, with and without a partner. Use all the tools in your toolbox: curiosity, love, sex toys, etc. Aim to be an expert at what feels good to you.
- Ask your partners for what you need and let them rise to the occasion:
It can be tempting to hide our insecurities and wait for rejection from partners. Instead, your own needs and expectations of sexual partners to be patient and supportive – you will likely be pleasantly surprised.
- Be proactive about sexual health care.
Lichen sclerosus is a lifelong condition, so regular sexual health care is important. Create a team of professionals to help you maintain your health. Consider mental health support and pelvic floor physiotherapy.
- Find quality information.
Not everything you find on google is worth the space it can occupy in your brain. Stick to good quality, evidence-based and gender-positive information. You deserve the best.
- Find community with people who understand what you’re going through.
Start by checking out these amazing lichen hardening resources: Lichen Hardener 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, counselors and sex educators offers information and resources about sex, sexuality and sexual health. You can find our opening hours and contact details at www.sexsense.org.
Note: This post contains general information that may not apply to everyone. It is not a substitute for professional medical diagnosis and treatment or counseling and other mental health support. If this is a topic that affects you, please respond with questions about your own specific situation. We will reply to you privately and provide the appropriate information resources.”
