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Chronic Pain and Lichen Sclerosus: What is Going On?

Chronic Pain and Lichen Sclerosus: What is Going On?

Introduction

In my last post, we discussed the basics of pain with lichen sclerosus. I highlighted the main types of pain you may experience with lichen sclerosus and how to manage it. Read the post here. In today’s post, we are going to take a deeper dive into pain from lichen sclerosus by approaching the subject from a more evidence-based perspective. Further, we are going to discuss chronic and complex pain from lichen sclerosus and what you can do about it.

The Basics of Pain

Pain is defined by the International Association for the study of pain as

“An unpleasant sensory or emotional experience associated with actual or potential tissue damage”

Saurab Sharma, 2020 (link)

Pain is a personal experience. It is unique to each person. For example, two people with the same injury could experience pain in very different ways (ibid). 

Pain is an unpleasant experience that is impacted by different biological, social, and psychological factors. Biological factors are things like genetics, medications, sleep, etc. Social factors are things like interpersonal relationships, access to healthcare, and work. Finally, psychological factors involve your mental health, emotions, attention, etc.

All Pain is Experienced in the Brain

Alright, we are going to go a little sciency here for a minute, but stay with me; it’s important.

Pain felt in the body is a result of sensory information processing that occurs between your nerves and brain. Your nervous system is made up of billions of cells called neurons. Neurons kind of look like little trees with a trunk and branches. We have neurons from head to toe. Information travels from the brain to the body and from the body to the brain via these neurons. 

In between neurons are tiny spaces called synapses. Synapses are basically little sites for communication. Think of them as tiny information centers. Neurons pass information from one neuron to the next through these information centers via neurotransmitters. For example, if one neuron wants to pass a stinging sensation signal to another neuron, it would pass that information on by releasing a neurotransmitter which would travel across the synapse where it would be received by another neuron. This process of information passing can start from anywhere in the body up to the brain.

When Things Get Complicated

Importantly, there is the possibility for the pain signal to change at every synapse it passes through. For example, the pain signal can be amplified (e.g., the pain signal goes from a 2 to an 8) or calmed (e.g., the pain signal goes from 8 to a 2).  Have you ever played the game broken telephone?

Maybe I’m aging myself here, but I played that a lot in elementary school. For folks who aren’t familiar, you have people sit in a long line. The person at the end whispers a statement into the ear of the person next to them. That person then passes that message on to the next person and so forth until the message reaches the final person. Sometimes the statement is pretty close to the original statement. Other times, the statement is completely different. This can happen with pain signals too; they can go through change along the way.

Image of a kid on a telephone representing the game of broken telephone which symbolizes how sometimes pain signals in the body get distorted.

Interestingly, because all pain is experienced in the brain, thoughts and feelings about our pain can impact our experience of pain. This is why I personally am a big fan of the biopsychosocial model of managing pain. Pain is experienced in the mind and body, so it makes sense to consider pain from all angles when looking at treatment and management.

Chronic Pain and Lichen Sclerosus 

As I mentioned in my last post, pain is common for folks with lichen sclerosus. That pain may present as burning, stinging, stabbing, etc. 

One of the goals of treatment for lichen sclerosus is to manage symptoms and get the patient into remission. Ideally, in time, your symptoms should start to improve (but don’t worry if they don’t improve right away or your journey isn’t linear).

That said, while many do experience a reduction of pain with treatment (usually around the three-month mark onward), some experience chronic pain, even with treatment. 

Further, some folks get into remission and still have pain. This is often due to architectural changes which have already occurred or to changes in the nerves that are causing continued pain. For example, with architectural changes, if you have scarring around the opening of the vagina, this may continue to tear with insertion, causing pain.

What could be going on?

Why Isn’t My Pain Going Away

Unfortunately, there is no easy answer to this. 

If you have lichen sclerosus and are experiencing chronic pain, even after using your treatment correctly for over six months, there might be something else going on. For example, your pain could be caused by

  • Hypertonic pelvic floor/overactive pelvic floor (where the muscles are too tight and cannot relax)
  • An accumulation of smegma and hair underneath the clitoral hood (keratin pearls – see here for more information)
  • A yeast infection (see my post on how to help distinguish between yeast infections and lichen sclerosus here).
  • Central sensitization
  • Pudendal neuralgia (a condition where the pudendal nerve becomes entrapped, causing pain in the entire vulvar area)
  • Vulvar neuralgia (nerve pain on the vulva)
  • Congenital neuroproliferative vestibulodynia (pain in the vestibule that has been there since the first time you had sex or tried to insert a tampon)
  • Acquired vestibulodynia (pain in the vestibule that began after an allergic reaction or severe yeast infection)
  • Hormone-mediated vestibulodynia (vulvar pain due to hormones)
  • Atrophic vulvovaginitis (where the skin thins as a result of long-term use of hormonal birth control and/or menopause)
  • Sexually transmitted infection (e.g., herpes, trichomoniasis, etc).
  • And more

(Goldstein, Pukall, and Goldstein, 2011).

Remember, having lichen sclerosus doesn’t mean it is the one and only source of any/all vulvar symptoms. You can have LS and a secondary condition; some folks have more than two.

If you have any of these conditions or want me to create future content looking at this more in-depth, let me know in the comment section below!

Refractory Lichen Sclerosus

Refractory lichen sclerosus is lichen sclerosus that does not respond to gold standard treatments like Clobetasol. 

If you have been diagnosed with lichen sclerosus and have been treating with topical steroids for more than 12 months and have no improved or are getting worse, you may have refractory lichen sclerosus.

Since, in this case, there is no improvement with treatment over 12 months, there can definitely be a massive pain component.

Learn about three questions that need to be asked when considering refractory lichen sclerosus and what can be done about it here. We will have more in-depth content on refractory lichen sclerosus in the future – stay tuned!

Treatment Options

Treatment for these conditions varies. Getting a proper diagnosis first is critical. Once the doctor can narrow down and understand the type of pain they are dealing with, only then can they put you on a proper treatment plan. 

For example, if your pain is nerve related, your doctor may explore topical creams such as lidocaine, oral medications such as Elavil (amitriptyline) and Neurontin (gabapentin), pelvic floor physical therapy/biofeedback, or nerve blocks. If your pain is due to neuroproliferative vestibulodynia, your doctor may inject a medication called interferon-alpha if it is caught early (ibid). If it was caught later, they will explore topical anesthetics like lidocaine, antidepressants and antiseizure oral medications, capsaicin cream, or even surgery.

Image of a person squeezing out ointment from a tube representing lidocaine or other pain compounded medications that can help with chronic pain and lichen sclerosus.

Almost all treatments, however, will involve pelvic floor physical therapy, stress reduction techniques (get my Stress, the Vagus Nerve, and LS webinar on sale here), counseling and lifestyle changes. 

What to do if you Have Chronic Pain with Lichen Sclerosus?

If your pain from lichen sclerosus is chronic – more than 3 months – despite using your medication properly, it is time to call your doctor. Here are some tips I recommend when approaching a doctor about this topic:

Tips for Talking to Your Doctor

  1. Create a timeline documenting when the pain started, what you’ve been diagnosed with, and how you have been treated.
  2. Track your symptoms and note things like what helps the pain and what makes it worse. Include details about what the pain feels like (e.g., searing pain, stabbing, numbness, achy, etc.).
  3. Tell your doctor that this has been persisting for over 3 months, despite using your medication properly and consistently. When explaining you use your medication properly, share how often you use it, how much product you use, how you apply it, and which areas you apply it to. Tell them you want to explore what could be causing this chronic vulvar pain and what options you have.
  4. While you are waiting for a diagnosis, ask what you can do to manage the pain in the interim. Specifically, ask if they can prescribe a topical anesthetic such as lidocaine. If lidocaine does not work, ask if they can prescribe a a compounded topical pain medication. Commonly, these compounds include Neurontin (gabapentin), and Elavil (amitriptyline).

Some Important Notes

With respect to number three, if your doctor refuses to do testing and will not help, request they mark down on your file that they refused testing and treatment. If they say, “it's just lichen sclerosus, use your steroids”, respectfully ask for a second opinion. Check out this international list of lichen sclerosus doctors here. Further, if your chronic pain case is complex and beyond their expertise (this may be the case if you are talking to your primary care physician or general physician), ask to be referred to a vulvovaginal specialist.

You may also want to request a second referral for pain counselling and support.

I can help you with appointment prep on my 1:1 LS Peer Support Calls which you can learn more about and book here. I have created mini-appointment prep sheets with folks on calls to help set them up for success and manage their anxiety.

Conclusion

In sum, pain is unique to each person. While pain from lichen sclerosus should slowly resolve after a few months of treatment, some folks find their pain persists well beyond the three or even six-month mark. If your pain persists for months despite using your treatment, you have chronic pain. Chronic pain with lichen sclerosus should always be investigated. Your doctor may need to revisit and tweak your treatment plan. Alternatively, you may have a secondary vulvovaginal condition that is causing chronic pain or you may have refractory lichen sclerosus. If this is the case, it’s important to get a proper diagnosis so that you can get on the right treatment plan.

If you want to learn more about chronic pain and lichen sclerosus, Ashlie Crew (pelvic floor physical therapist) gave an excellent talk on this topic at the 2022 LSSN Holistic Healing Summit. To watch that talk (and access all other 2022 Holistic Healing Summits) you can join LSSN's LS membership here.

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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".
Book a call with me

LSSN Membership – sign up here.

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

Sources Cited & Consulted

Goldstein, A., Pukall, C., and Goldstein, I. When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain. Da Capo Press, 2011.

Malhotra A, Mackey S. Outcomes in pain medicine: a brief review. Pain Ther. 2012 Dec;1(1):5. doi: 10.1007/s40122-012-0005-4. Epub 2012 Sep 29. PMID: 25134934; PMCID: PMC4107859.

Saurab Sharma, 2020. “International Association for the Study of Pain (IASP) Updates the Definition of Pain”.  (link)

Pain Education Program – Sinai Hospital, Toronto, Canada

5 Comments

  • Sandra

    Jaclyn,
    I keep learning more and more from you. I have just done my 1st vulva check, and not as thoroughly as you have described, due to getting scared. I am beet red, with white patches, and thicken areas, and the labia on the right side has like a line, like a break or fold, and I definitely have the figure 8. I have been having problems voiding, I have too, but it won’t come unless I am trying so hard it is like my anus is position for a b.m. — I have gotten my GYN chart notes which say I have architectural change, and
    agglutinations . Lately, I have started to have pains like needles inside are being pushed out in my vulva.

    I am treating as if in remission, but am I? As things continue to change, and I was officially DX 10-2019, but in Dec 2019 DX Endometrial cancer and surgery Jan 2020 and radiation March 2020 . I get tongue tied in my exam room with my GYN, Any ideas on how I can get over my inability to talk with my GYN like I can write and engage in conversation with you. I keep getting told to start treatment x 2 for 14 days, and Path has indicated I scratch too much, but I don’t during the day, it is always at night and I am up 3 to 5 times each night to void, which I am told comes with age as the bladder shrinks. I don’t understand this pelvic floor therapy at all. I have read your free book and thank you for it Thank you for thoughts! – Sandy

    • Jaclyn Lanthier

      Hi, Sandy. This sounds so painful and I hate that you have to deal with all of this. You don’t deserve any of this. Insofar as if you are in remission, I cannot answer this; clinical remission can only be determined by a trained clinical who can tell after examining the vulvar tissue. Sounds like you may need to try a second opinion with a new doctor/a doctor who is more specialized in vulvar conditions as you could have something additional going on in the genitopelvic area. LSSN has a PDF on preparing for your next doctor’s appointment which may help with overcoming anxiety at the doctors office – get it here: https://lssupportnetwork.org/5-must-haves-to-make-your-next-doctors-visit-the-best-one-yet/
      I also have a video on this topic with Dr. Chauhan you can watch here: https://www.youtube.com/watch?v=f9IueZgHm-8&t=8s
      With love, Jaclyn

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