Stephanie Dawn… Hrehirchuk

“There’s no way every woman in menopause feels this pain.” I tried to get my point across to my doctor without becoming a difficult patient. “Having sex feels like broken glass!”

Looking back, I wish I had been a more difficult patient. I’d accepted the pat on the head and the menopause diagnosis and then continued to watch my vulva, along with my sex life and marriage, disappear. That was four years ago.

I turned 50 last November and decided that was my year to make my doctor listen. I booked my pap, informed my doctor of all the pain and discomfort I’d experienced over the years and then awaited the results. My doctor called the following week with the all-clear (well, there was cervical ectropion, but that was written off to menopause). That can’t be. I pulled out a mirror and did my own inspection; something I should have done much sooner but was occupied with the perfect storm of divorce, single parenting, selling the family home, and Covid. I did not recognize my vulva. I also did not know the difference between vulva and vagina, part of the great education I’ve received while digging into the details of menopause health.

From The Menopause Centre (Vulva-Vaginal Disorders Specialist & Vulva Dermatology):

The vulva includes the mons (the hairy area), the labia majora (large lips, also hairy), the labia minora (small lips that you can see when you spread the large lips, the clitoris and clitoral hood (the hood partially covers the top of the clitoris), the urethra (where the urine comes out), the vaginal opening, the perineum (behind the vagina and in front of the anus. and the perianal area (Area around the anus).1

Yourdictionary.com defines the vagina as:

The definition of a vagina is the passage leading from the vulva to the cervix…2

So, what was not to recognize? For one, my vulva area was white. I don’t mean grey pubic hairs, I mean the skin was white. It didn’t take long for Google to diagnose the issue. The more I read, the angrier and sadder I became. Sad-mad. Now, I don’t typically recommend using Dr. Google as your healthcare practitioner, however, I’d already told my doc about the pain and that I’d received no relief in years. I needed to get to the bottom of this misdiagnosed issue.

I called the doctor’s office the next day and booked a phone consultation. I told her what I’d discovered. I told her about the changes to my lady parts and that they looked different.

“Well, I don’t know what you usually look like.” Her response was defensive. I was okay with that. This time, I wasn’t accepting the menopause diagnosis. We booked an office visit. Within seconds of her examining me, she agreed with my research and referred me to a specialist. Not before I broke down in tears in front of her. It served no purpose to blame anyone, but I needed to get across to her how, if my doctor had taken the time to listen to me four years earlier, much of my vulvar tissue, and maybe even my relationship, could have been spared.

“Now I need two appointments,” I sobbed. “I need a doctor to treat this condition and a therapist to help me deal with it.”

I will tell you what talked me off that despair ledge the night I dove down the Dr. Google rabbit hole: finding people online openly talking about their condition and what was working for them. I scoured the web for any personal reference to lichen sclerosus. My heart filled with gratitude for those with the courage to speak up. With no apparent cure (in fact, the information online loves to mention this detail, as do many members in online support groups), it seemed up to those who had LS to take up the torch. And we’re doing just that. In the thousands!

By the time I saw the specialist, I’d already been using many of the tips shared online. I’d joined a vulvar lichen sclerosus Facebook group with over 5,000 members supporting each other and sharing resources. I went into this diagnosis feeling scared and alone. I came out surrounded by community. You are NOT alone in this.

In this book, I will tell you my personal story of diagnosis, treatment, and the physical, mental and spiritual practices I use to manage lichen sclerosus while continuing my research towards its origin and healing.

My journey will not be your journey. And there will be elements of LS that are not covered in this book. There is, however, a myriad of resources included here for you to continue your own investigation of LS. My intention in writing this book is to talk you off that ledge of hopelessness, anger, frustration, and despair that I not so fondly remember when I realized I had LS, and to inform and inspire you on your healing journey.

I wasn’t on that ledge for long because I found support, healthcare professionals, and practices that quickly put me on the path to healing. With a 20-year background in personal training, women’s wellness, nutrition, yoga, and meditation, I was well-equipped to develop a plan of treatment. It is equally frustrating, however, to feel as though you’ve made good choices in your life, are educated on wellness and the conditions of disease, and still end up with LS.

It’s not your fault. It’s lichen sclerosus and you can heal the stress of it.

The Lowdown on LS

Whose Vulva is That?

When I first looked at my vulva after my doctor told me my pap was normal, I didn’t recognize it. The skin was completely white. It was also itchy and irritated. I used what I had available: aloe vera from the plant outgrowing its pot in the corner of the tub. Fresh aloe soothed me immensely during the week I researched what else to do. I scraped fresh gel from the leaves and applied it morning and night.

Gluten was next. I’d been gluten-free during seasonal detoxes over the years, but I decided to drop the gluten for months, even a year, and see what effect that had on my body. Both of my children experienced reflux and poor sleep when they were little. After many doctor visits and sleepless nights, I pulled gluten and dairy from their diets (and mine during breastfeeding years). Their sleep improved, as did their meltdowns. Inflammation had kept them in discomfort.

My research really began at that point. After reading some posts online, I moved from using aloe vera to olive oil after I peed, since that seemed a popular solution on the web. I kept a tiny jar of oil tucked behind the plant on the tub’s ledge. I applied a small amount all over each time I used the bathroom. Irritation had subsided considerably by this point and I felt as though I was moving in the right direction. Meanwhile, I waited for my appointment with the specialist.

I started to think back over the years of misdiagnoses. All of the complaints that had been written off as menopause. I’d not treated anything as I never knew there was anything to treat. To compound things, I had a cervical spinal injury at age 44, just prior to menopause. I was so focused on healing the spinal injury that I paid little attention to the fact that my body needed extra support with menopause.

As I think back even further, I believe LS has always been part of my life. It just stayed at bay during my peak hormone years, popping up once in a while to puzzle doctors. Once menopause arrived, it became hard to ignore this condition.

What is Lichen Sclerosus?

From Liberty Women’s Health:

Lichen sclerosus (LS) is a benign, chronic, progressive condition affecting the skin of the vulva, which is characterized by severe inflammation, changes to skin thickness (thinning or thickening) and hypo-pigmentation (loss of pigment), scarring down of the vulvar tissues such as the clitoral hood, and loss of vulvar anatomy (including partial or total resorption of the labia minora) if left untreated.1

From the Royal Women’s Hospital, Australia:

Lichen sclerosus (said ‘like-en skler-oh-sus’) is a skin condition that makes patches of skin look white, thickened and crinkly. It most often affects the skin around the vulva or anus. It can be itchy, painful and cause permanent scarring.2

Raredisease.org has this to say:

Lichen sclerosus is a chronic inflammatory skin disorder that most commonly affects women before puberty or after menopause. Although rare, it can also be seen in men. When found in males, the disease is known as balanitis xerotica obliterans.3

You’ll probably see references to the term rare a lot with LS. I don’t know if I’m in agreement with this classification. Yes, I’d never heard of this condition until I went looking for my symptoms, however, a lot of people are surfacing with this diagnosis. So, I checked on the criteria for this label. Here’s what genome.gov has to say:

A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. 4

That could be true. I suspect, however, it is “rare” because it is misdiagnosed. In an online menopause group, a member complained of pain with sex and “my vagina is closing.” While many members jumped in with links to vaginal atrophy and “It’s normal in menopause,” I was reminded of when my doctor misdiagnosed me. There’s ignorance around LS because it is little-known and because it is often awkward to discuss with others, including your doctor. That’s changing, thanks to all the people who are speaking up and sharing their experiences and wisdom.

According to The Royal Women’s Hospital in Victoria, Australia:

Lichen sclerosus affects around one in 80 women. It can happen at any age, but is most common in middle-aged and elderly women.5

Research suggests that the most probable cause of lichen sclerosus is an autoimmune reaction in genetically predisposed individuals.6

Let’s break it down further. Healthline says:

Lichenification is when your skin becomes thick and leathery. This is usually a result of constant scratching or rubbing. When you continually scratch an area of skin or it is rubbed for a prolonged period of time, your skin cells begin to grow.7

Sclerosus according to Miriam Webster:

1 : pathological hardening of tissue especially from overgrowth of fibrous tissue or increase in interstitial tissue also : a disease characterized by sclerosis. 2 : an inability or reluctance to adapt or compromise political sclerosis.8

I could have edited out the last part of that definition of sclerosus, however, I believe the mind/body connection is important in healing, and find it fascinating that the definition includes “an inability or reluctance to adapt or compromise.” I know that’s one of my psychological issues. Is the body also experiencing an inability to adapt to changes: whether through food, environment, stress, virus/bacteria or other causes?

It’s important to note that not everyone experiences itching and that according to The Centers for Vulvovaginal Disorders Lichen Sclerosus Webinar 9, inflammation occurs at the basement layer of the vulvar skin. This raises the question: Is thickening due to scratching/repeated abrasion or other causes?

Root Cause and Remission

I often see the word remission in our LS groups. I’ll take remission but the Scorpio in me is always seeking the deeper truth. I want a cure. Not a drug or surgery. I want to know the root cause. If we understand the root cause, we can stop the condition. Or can we?

Initially, I wondered if LS was a condition of modern times: plastics, pollution, industrial farming practices, processed foods and additives… the usual culprits of today. Or, perhaps, driven by a particular toxin (say, arriving around the time of DDT). When I pulled on that thought, it quickly unravelled. No root there.

Lichen sclerosus (LS) was described for the first time in 1887. Since then, many synonyms have been in use, notably 'Kraurosis vulvae,' 'vulvar dystrophy,' 'white spot disease,' and 'lichen sclerosus et atrophicus' or 'guttate scleroderma.10

So far, the root cause is more like a root soup and each person’s ingredients are unique. On the long grocery list of possible items, the LS soup appears to include any number and combination of these ingredients:

1. Hormone imbalance (low estrogen)

2. Autoimmune disorders

3. Bacterial, parasitic, fungal infection at some stage of life (reports of borrelia: Lyme disease). I had amoebic dysentery in my 20s

4. Food intolerances or allergies, leaky gut

5. Genetic predisposition

6. Issues processing oxalates or histamines

7. Physical, mental or emotional trauma (for me, this is the least understood and the factor that correlates with “inability to adapt” mentioned above)

A 2017 article in Clinical Advisor had this to say about other autoimmune issues:

The exact etiology of lichen sclerosus has not been ascertained; however, evidence points to an increased likelihood of an autoimmune and genetic component. In a study of 350 women with lichen sclerosus, researchers found that 21.5% had 1 or more autoimmune-related diseases, 21% had a family history of autoimmune disease, and 42% had autoimmune antibodies. The most common autoimmune diseases associated with lichen sclerosus are autoimmune thyroiditis, alopecia areata, vitiligo, and pernicious anemia.11

Just because you have LS, doesn’t mean you have or will develop a second autoimmune condition. As far as I know, LS is my only one. For those of you who have already been diagnosed with an autoimmune condition, it can be comforting to know that you’re not alone in this double diagnosis. I see it reported in our online support groups.

What’s in a diagnosis? There is education and information, community and a common treatment protocol. But, don’t be too quick to identify with your diagnosis. Continuing to tell the body it is sick, or allowing the victim to become the dominant archetype in your life has little benefit. There is an imbalance in the body/mind/spirit. Regardless of what popular medicine names it, the goal is the same: Restore balance.

From Mild to Severe

When my son was born, the nurses gave me ‘popsicle pads’ – sanitary napkins with a bit of water added to them and then put in the freezer. Let me tell you, those pads were pure heaven for relieving the pain of childbirth. I used them again after my daughter was born. That time, I added calendula water to the pads to speed healing.

Pushing a person out of your body causes substantial pain, inflammation, tearing and burning. But at least you get this adorable little human to take home with you, and once you heal, the pain does not return until you have another little human.

While comparing the discomfort of lichen sclerosus to childbirth might seem extreme, some people with LS experience excruciating pain that returns again and again. Others, myself included, are fortunate to experience mild to moderate symptoms.

What are the Signs and Symptoms of Lichen Sclerosus?

Cedars-Sinai identifies the common symptoms that may be included with LS:

• Vulvar itching (very common)

• Anal itching, bleeding, or pain

• Pain during sex

• Skin bruising and tearing

• Blisters

• Easy bleeding from minor rubbing of the skin

• Pain or bleeding when having a bowel movement

• Trouble urinating or pain with urination 12

The challenge is that each person experiences LS differently. I suspect there can also be other issues happening alongside LS that may not be due to LS.

There was a poll posted in one of the online LS communities asking about the top symptoms experienced by its members. These were the top 10 signs and symptoms as listed by group members:

• Itch

• Burning sensation

• Redness

• White patches

• Fusing (architectural changes)

• Paper cut-like sores

• Inflammation

• Painful sex

• Shooting nerve pain

• Swelling

The list was actually 25 items long and included other items such as blood blisters, frequent urination and throbbing pain. Again, we see a soup of ingredients and not all of them may be LS related.

What are the Symptoms of Lichen Sclerosus in Children?

It saddens me to think that little ones are dealing with this condition and how challenging it must be for a parent or caregiver to figure out.

The symptom list for children varies slightly from the previous list from Cedars-Sinai. According to The Royal Children’s Hospital Melbourne, these are the main signs and symptoms of LS in children:

• Itchiness

• Constipation (due to painful cracks in the skin around the anus)

• Pain when urinating

• Red and inflamed skin at the beginning, that later looks like white, shiny, wrinkled or thickened patches 13

How do you know if it’s lichen sclerosus?

There are other causes for vulvar itching. This is the complex part. Symptoms may or may not be due to LS. There may be no LS involved at all, or there may be LS alongside non LS-related issues. A specialist will diagnose lichen sclerosus from a biopsy or a visual inspection.

Since vulvas are kind of like snowflakes, no two are the same, it can be challenging for your family doctor to spot changes. It’s important for you to notice changes and report them to your physician. Ask to see a specialist.