Do you have pain from lichen sclerosus? Does the pain make it hard to sit, walk, have sex, and more? Are you looking for things to help manage your pain? Look no further! In today’s blog post, I will discuss pain from lichen sclerosus and what you can do to help manage your pain.
This post is mainly based on my lived experience with lichen sclerosus. In my next blog post, I will discuss chronic pain and lichen sclerosus from an evidence-based perspective. This will include complex vulvar pain that persists even after the patient is in remission and what to do if that is your case.
Pain from Lichen Sclerosus
Pain from lichen sclerosus is a common symptom. While many of us experience pain from lichen sclerosus, that pain presents differently for each person. For example, some folks may rate their pain as mild-moderate. In contrast, others will describe their pain as debilitating and severe. Some people experience their pain every day, whereas others experience it occasionally.
Further, there are different types of pain you may experience, depending on the cause of the pain. Let us go through them!
A common cause of pain from lichen sclerosus is pain with sex. This can be penis-in-vagina sex, sex with a toy, fingering, etc.
One of the reasons sex can cause pain for folks with lichen sclerosus is because LS causes the skin to thicken and become inflexible. Healthy vulvar tissue should be mobile, elastic, and flexible. When the vulvar tissue is healthy, it can stretch easily to accommodate penetration. However, if the skin is stiff and rigid, it cannot stretch and accommodate penetration. Instead of stretching to allow a penis or toy to enter the vagina, the vulvar skin can feel sore and painful and, in some cases, even tear. It is the hardening of the skin that can cause pain with sex.
Some folks experience pain only during penetration; others experience it for days after, even if they have not had any more penetration.
Pain from sex can feel like
- Other (tell us what your pain feels like in the comment section at the end of this post).
If you experience painful sex from lichen sclerosus, subscribe to our YouTube channel. I am doing a whole series on sexual health and lichen sclerosus over there this year.
The skin thickening can also cause the skin to crack or fissure, even if you are not having sex. Vulvar skin needs to be mobile and flexible. Specific movements can cause the skin to crack and fissure when it is not.
Fissures are not always big, either. Sometimes, you cannot see them by looking in a mirror. They can be microscopic tears and fissures, and while small, they can cause a lot of pain. If you have a fissure, it can hurt when you are sitting, standing, or even at rest. You may experience increased pain when you urinate, as the urine entering the fissure can sting and burn (think of it like squeezing lemon juice onto a paper cut).
A common adjective used to describe the pain from lichen sclerosus is burning. I know I have used that term many times when trying to explain my pain to doctors. Some folks experience this daily, and others experience it on occasion. Either way, it is a very unpleasant and distressing experience.
General Soreness & Discomfort
Some folks describe their pain as general soreness or discomfort. It is not entirely burning or stabbing pain, but it is uncomfortable. It may feel raw or tender. You may find that sitting or specific clothing seems to aggravate the pain.
My Experience with Pain from Lichen Sclerosus
Pain was a huge part of my LS journey. My very first LS symptom was painful sex. It began in my early 20s as general discomfort during sex. Over the years, that pain grew in complexity and intensity. I began experiencing burning during sex. Often I would tear during sex – usually around the opening of the vagina/perineum area. Sometimes I would be in pain for days or weeks after having sex. While there were periods of my life where the pain let up, the general trend was that my pain was getting worse as the years went by.
In my late 20s, my pain was constant. Even if I abstained from sex, I was still in pain. I would experience stinging and stabbing pain from my fissures and tears. One time, I was in a group fitness class, and we were doing jumping squats, and as I landed on my feet, I felt my vulva tear open. I was horrified. My underwear and pants aggravated my vulva. I would often fidget in my seat while out with friends at restaurants because my vulva was just so painful, and I could not get comfortable.
Where I Am at with my Pain Now
Thankfully, my LS is in complete remission and has been for over two and a half years. I have not had any vulvar pain since being in remission. My journey to remission took some time, but the pain became less and less as I inched my way there.
In a nutshell, though, the main tools I utilized to help get into remission and reduce my pain were
- Using my steroid medication
- Going to pelvic floor physiotherapy
- (and actually doing the homework my pelvic floor physical therapist gave me)
- Pain education
- Pain counselling and therapy
- Mindfulness and meditation
- Using dilators – learn more about dilators here
- Ice therapy (see below)
- Enrolling in a pain education program and practicing stress reduction techniques
How to Manage Pain from Lichen Sclerosus
The best thing you can do for pain is to treat the vulvar skin by using your steroid medication. Your steroid will restore your skin to a healthier state when used consistently and correctly. It will become less thick/rigid and more mobile and elastic. This will help reduce sensations of tightness and pulling as well as tearing and fissuring. Steroids work to reduce inflammation, and in time, as the skin heals, the pain should start to decrease.
Pelvic Floor Physical Therapy
I have said it before, and I will say it again, pelvic floor physical therapists are wizards, and everyone with LS should try to see one if it is accessible. They can help you with a range of symptoms and issues, including urinary frequency/urgency, urinary retention, painful bowel moves, pain with sex, and vulvar pain (yes, some vulvar burning and itch can actually be caused by tight pelvic floor muscles), and so much more.
If you experience pain from lichen sclerosus, a pelvic floor physical therapist is an excellent person to add to your healthcare team. They will teach you techniques and tricks to help reduce your pain. Further, if you experience painful sex, they can also show you how to work with dilators so you can enjoy sex again.
Hatha/Pelvic Floor Yoga
I know, I know. “Have you tried yoga”? The dreaded question we with chronic illness get a least once a month. I have been asked that by doctors, friends, and family members when talking about my pain. And it can be frustrating…but hear me out.
Hatha/pelvic floor yoga, when used in conjunction with your treatment plan, and some of these other tips can be magic.
Personally, I joined Penny’s Pelvic Health Yoga Membership. Penny is a fellow LS warrior, pelvic pain sufferer, and yoga teacher. After living with chronic pelvic and vulvar pain for years, she created the pelvic health yoga membership to address pelvic pain and reduce stress.
Her yoga classes are Hatha-inspired to help calm the nervous system. They are gentle, slow, and restorative classes. This is important because stress is a big trigger for lichen sclerosus.
Penny always shares modifications for each pose so you can find what is best for your body at that moment. The membership teaches you how to relax your pelvic floor and encourages pelvic floor breathing, which is beneficial for pelvic and vulvar pain.
Here is What You Get in the Pelvic Health Yoga Membership:
- Weekly live 45-minute pelvic health yoga class
- A library full of past yoga classes in case you missed any or want to do a class on your schedule
- Breathing exercises
- Pelvic reset poses
- Facebook Community
Sign up today and use my discount code (JACLYN) to get 30% off your first month! I cannot wait to see you there!
Ice packs were my greatest friend for managing my pain (and itch)! While they cannot cure or take away your pain indefinitely, they can really take the edge off at the moment.
I recommend the brand Private Packs. Private Packs are non-toxic gel personal pads designed to fit the contours of your vulva. They come with protective sleeves since you never want to apply ice directly to the skin. Private Packs are discrete; you can wear them in your underwear while standing, sitting, driving, etc. I have had a coffee date with a friend with a Private Pack in my underwear!
If you have pain from lichen sclerosus, I recommend getting 2-4 packs. I like to keep mine in my freezer; this way, I have a little assembly line of packs ready to go whenever I need them.
Click this link to order yours and use code ‘THELOSTLABIACHRONICLES’ for 15% off your first order.
If you want more tips on using your Private Packs for pain, pain with sex, itch, and more, watch this video I did with founder and CEO of Private Packs, Suzanne.
Donut pillows or small, soft cushions can be great if you have pain from LS. They are especially good if you experience pain while sitting. Donut pillows are essentially shaped like a donut – i.e., a circle with a hole in the middle. These pillows are designed to take the pressure off your vulva/genitals, allowing for healing and pain reduction. Some folks dislike donut pillows and prefer sitting on a soft cushion.
If you want a donut pillow, check out my Amazon Storefronts. You do not need to purchase the ones I did, but it can help give you an idea of what you want to look for.
What if Your Pain is Severe
If your pain is severe, call your doctor. I will discuss options for severe pain in my next blog post.
What If Your Pain Persists Even After Months of Treatments
Unfortunately, pain is complex and does not always resolve with steroid treatment. If you have been using your steroid for over six months and are still in pain, or if you are in remission but still experience chronic vulvar pain, there are options! Come back on June 6, 2023, to learn more.
In sum, pain from lichen sclerosus is common. It can feel like stinging, stabbing, burning, rawness, tenderness, or general discomfort. The best way to manage pain is by using your medication correctly. Additional tips for managing pain from lichen sclerosus include ice therapy, stress reduction techniques, and pelvic floor physical therapy.
Let us know in the comment section below if you have pain from lichen sclerosus and how you manage your pain.
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Reach Out to Me
Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:
DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.
FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.
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LSSN Membership – sign up here.
For a more detailed list of free and paid support resources, check out my LS resources page here.