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Pain from Lichen Sclerosus: The Fundamentals

Pain from Lichen Sclerosus: The Fundamentals

Introduction

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!

Painful Sex

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.

Image of a person with brown skin and short dark hair with their hands on their head with a pained expression on their face.

Watch my video on whether lichen sclerosus thins or thickens the skin here.

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

  • Stinging
  • Burning
  • Soreness
  • Rawness
  • Tenderness
  • Aching
  • Tearing
  • 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.

Fissures

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). 

Burning Pain

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.

Image of a blazing fire representing the burning pain that can come from lichen sclerosus.

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. 

Watch my remission story and how I stay in remission video here and here.

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

Steroids

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.

Have questions about steroids? Check out these two posts I did here and here.

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
  • Meditations
  • Pelvic reset poses
  • Challenges
  • EFT
  • Facebook Community
  • +more!

Sign up today and use my discount code (JACLYN) to get 30% off your first month! I cannot wait to see you there!

Ice Therapy

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

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.

Canadian Storefront

USA Storefront

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.

Conclusion

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:

Email: Jaclyn@lostlabia.com

DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.

Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me if you are struggling with grief and emotions. Simply click this link to learn more about lichen sclerosus peer support calls.

Image of a person with dark brown skin and dark hair wearing a yellow shirt sitting at a desk on a call. The title text reads, "1:1 LS Peer Support Calls, book now".

LSSN Membership – sign up here.

For a more detailed list of free and paid support resources, check out my LS resources page here.

19 Comments

  • Mary

    Thanks Jaclyn for all you do for this population. Your information has been invaluable to me as I found the medical community lacking. Keep up your good work!
    Mary from London

  • Sandra

    Lots of good information. When it comes to pain, now and then my right leg between the arch in my foot and calf of my leg gets a terrible pain like it has been hit with a hammer, and it can last all day, and this is when I’m having vulvar stabbing pain, and painful urination. Is my leg pain part of the VLS?

    I have a June 12th apptmt with my GYN, and I’m wondering if anyone has experience same and what I might hear from him. Bear in my this GYN visit is also my cancer surveilliance, post 3 1/2 yrs G3EEC.
    Thanks for all the information and all that you do.

    • Jaclyn Lanthier

      Hi, Sandra. Thank you so much for reading and commenting. Sorry to hear about the pain in your leg. That doesn’t sound very good, and I truly wish you didn’t have to experience this. I’ve never heard of VLS affecting the legs, but that doesn’t mean it’s impossible. Typically, though, vulvar lichen sclerosus affects the vulva. The leg pain could be a huge number of things. I think it’s definitely worth mentioning to your primary doctor in addition to your gynecologist in case it is not related to your VLS. Another person who may be able to assess leg pain is a physical therapist; they can often determine the cause of pain and treat it. Referred pain is also a thing, which is where you feel pain in an area that isn’t actually injured. For example, if my lumbar spine gets injured, it’s possible I won’t feel the pain in my back, but instead, the pain will refer to the hips and legs, and I will feel it there instead of in my back. So, it’s possible something similar is going on. Ultimately, I would see my primary doctor and have a conversation with a physical therapist and my gynecologist to start to figure out what is going on and how to treat it. With love, Jaclyn

  • Kelly

    Jaclyn, I really appreciate this comprehensive information, as always! Like other LS Warriors here, I found that my doctor provided pretty much no information when she diagnosed me! You & the LSSN are a lifeline. My pain has continued – in a milder form – since remission. The skin is simply really sensitive and I have vulvodynia / vestibulodynia after months of undiagnosed LS (and a bonus pelvic surgery). Lots of burning and aching, and after sex, what feels like rug burn on my vulva! I know it’s going to keep healing, so I’m practicing all your ideas above to provide my vulva and pelvic floor some love.

    • Jaclyn Lanthier

      Hi, Kelly 🙂 Thanks so much for leaving a comment. Happy to be part of your team and lifeline! Yes, can definitely happen (pain persisting after remission and/or also having secondary vulvodynia), you are not alone in that. Unfortunately, it is one of those patience games, because it can take time to settle but you are doing all of the right things and you will get there. With love, Jaclyn

  • Susan

    Hi, thanks for all the info you provide. I am in the UK and your network is great. Reading all the information you provide really makes me understand LS and most importantly makes me feel I am not alone. Initially I did try to find a group in the UK but apart from a Scleroderma site there is nothing. So you suffer in silence.
    So pleased I found your network group so once again many thanks.

    • Jaclyn Lanthier

      Hi, Susan. Thanks so much for leaving a comment; I appreciate you. I’m thrilled to hear that you found the information helpful. I honestly think education is fundamental for helping with anxiety and fear. And, of course, knowing you aren’t alone is very healing. So glad you found us! With love, Jaclyn

  • Karen

    I am so very grateful to have found your support network. A real lack of physician & advanced practice nurse knowledge in this area, in the treatment. After doing a lot of digging in legitimate medical journal articles & educating myself as well as my care providers, for over a year, I have found that keeping my vitamin D level at the high end of normal range, (75-80) is significant in eliminating the burning pain. I did read that patients with autoimmune disease require much higher levels of vitamin D. There is hardly any patient information on this disease out there! Best management for my tissue tears is psyllium(Metamucil), which I add to breakfast smoothie. I found this information on a Nurse Midwifery site, out of Washington state, for management of post-delivery tears. No tissue tears in over 6 months.

    • Jaclyn Lanthier

      Hi, Karen! Thank you so much. That’s incredible. 6 months no tears is certainly worth celebrating! So happy you found what works for you 🙂 With love, Jaclyn

  • Ellen

    Hi there! I really appreciated this post as I often only hear about “the itch” (and am really looking forward to your next!) In July 2022 my LS kicked off after a yeast infection and then after months of misdiagnosis/mismanagement, I was later diagnosed with vulvodynia as well. I struggle to identify when the pain is from LS, vulvodynia or a bladder infection. After 3 assumed bladder infections that came back fine, one dr now thinks I have interstitial cystitis as well, but I’m starting to wonder if the pain/urinary discomfort could be from LS inflammation and not IC. (I have done pelvic floor therapy since Jan. but have only learned deep breathing.) Any advice on how to separate LS pain from other pain (vulvodynia or urinary pain) would be amazing. I’m not even sure if LS inflammation can cause urinary discomfort? Can it? It’s all so confusing. Thanks again for all that you do!!

    • Jaclyn Lanthier

      Hi, Ellen. Sorry to hear you are struggling with all this. It’s hard enough just to have one condition, but harder still if there are potentially multiple. This is actually a very complicated question and there is no straightforward answer. Briefly, briefly, LS may cause some stinging and burning when you urinate if you have fissures on the vulva, but in itself, urinary pain is often separate. If fissures are the culprit, then you may want to start using a peri bottle when you urinate and apply a barrier cream to the fissured areas before and after. The best advice I have would be to see a specialist to help disentangle overlapping symptoms and to see if there are additional diagnoses that need to be made. Vulvodynia requires a specialist. If the LS isn’t active – i.e., if there are no active signs of LS – then vulvodynia is a possibility, but even when it’s vulvodynia, they need to then figure out if it’s hormone-based, nerve-based, etc. It’s hard to disentangle symptoms, and many doctors struggle with this, which is why as they point I would recommend a vulvar specialist. Still possible it is IC, but I cannot say for sure nor can I diagnose it. IC usually comes with pressure in the pelvis and abdomen and pain in the bladder and pelvis, whereas if it’s from LS, it’s usually more from fissures and open sores.

      Sorry there is no simple answer here; I really wish there was. I hope that helps a little. With love, Jaclyn

  • Cindy

    I am so grateful for all the information that you share. You have given me so many tools to fight LS. I know I will be okay at some point. Some days are longer than others. I’m looking forward to being normal again.

  • Cindy

    I am so grateful for all the information that you share. You have given me so many tools to fight LS. I know I will be okay at some point. Some days are longer than others. I’m looking forward to being normal again.

    • Jaclyn Lanthier

      Thank you so much for sharing. We definitely strive to empower folks. Some days are definitely harder than others, but you are not alone. Thank you for your support and comments. With love, Jaclyn

  • Joanne

    Newbe,
    Been using cobolasol for 3 months. I am using it 2x a week
    Seems to feel worse after the biospy and was told I have VLS
    Burning, rawness, sourness and inner thighs and pelvis pain comes and goes
    The peeing is all over the place. Seems the hood shrunk a bit along with the clitoris

    • Jaclyn Lanthier

      Hi, Joanne. So sorry to hear you are experiencing this. Definitely check in and reevaluate how you are treating with your healthcare provider, especially to find out what’s going on with the thights/groin. Some tweaks to your treatment plan may be able to help. If you are concerned about your urination, I also recommend chatting with your healthcare provider to see what can be done. With love,

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