The “Rare” Autoimmune Disease Every Menopausal Woman Should Know About

And tell their doctor about

“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. 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.

Lichen Sclerosus: Body, Mind & Spirit Practices to Heal the Stress of LS

What happened next?

I looked up my symptoms online and called my doctor back to explain what I thought I had. She’d never heard of it. By the time I saw her in her office, she agreed with my self-diagnosis and referred me to a vulvar health clinic in Calgary. The gynaecologist there quickly diagnosed me with vulvar lichen sclerosus (VLS, or what most refer to as LS).

I do a disservice using “menopausal” in the title of this article. While most women diagnosed with LS are menopausal, many are in their 20s, 30s, 40s and even kids as young as three or four. Lichen sclerosus is a chronic inflammatory autoimmune condition that occurs in genetically predisposed individuals, including men. It is a life-long condition that is often masked by hormones. There is no recognized cure. LS also comes with a 3–6% increased vulvar cancer risk. While some sources state the number of individuals diagnosed with LS at 1 in 1000, according to The Royal Women’s Hospital in Australia, LS affects as many as 1 in 80 women. Keep in mind, this is an often misdiagnosed condition.

What you need to know

Signs and symptoms of lichen sclerosus:

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

  • 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 

And while menopause alone can come with a host of challenging symptoms, there are a range of vulvovaginal conditions that cause immense physical and emotional pain every day. Not all are LS. A gynaecologist or dermatologist can help identify LS through a clinical biopsy or visual diagnosis. The vulva may appear white or shiny. There may be areas of thickening or scarring. Each person’s experience varies. There are mild and severe cases.

LS is often difficult to discuss with family and friends, even doctors. For many women, shame and embarrassment accompany the diagnosis. The pain and stress involved can be nearly unbearable for some. In 2019, one Canadian woman sought compassionate death due to the physical and emotional stress of LS. When I read Janet Hopkins’ words in an article in Dying With Dignity from January of 2021, they made me aware of just how severe this condition can become for some.

“This is the worst pain I have ever experienced… I go out very infrequently now. This is a very personal and private issue and difficult to discuss with anyone, but if I had colon or breast cancer it would be more tolerable to talk about.” 

— Janet Hopkins, Dying With Dignity

We need to open the conversation. I’m not a doctor. I have LS. I’m grateful to be symptom-free at this time. It has, however, taken much of my energy, time and focus over this past year. There is much we know about LS from the medical community, and a large amount of information that comes from those who live with it and work to find relief every day. There is much we still don’t understand. What is important today, is that we are aware of LS and take the embarrassment out of the equation so that more accurate diagnoses can be made and women can find support and treatment.

Many have found relief through lifestyle changes, with or without the use of the prescribed potent topical corticosteroids. Those with LS may also see pelvic floor therapists, urologists, sex therapists and oncologists, along with their gynaecologist or dermatologist. The condition must be monitored and managed for life.

Symptoms can be mild and many with LS are in remission. However, some, like Janet Hopkins, face excruciating pain daily. Flaring of symptoms can happen for no apparent reason and often leave the person desperate to discover the trigger. There’s more than hope for those with LS, there’s help. First, we need to open the conversation. Awareness is key.

I could have written about any topic more comfortable to discuss than LS, but that wouldn’t help the woman whose doctor just told her that the excruciating pain she feels with sex is just menopause.

No one should have to suffer in silence.

Find out more about LS in Lichen Sclerosus: Body, Mind & Spirit Practices to Heal the Stress of LS

The above information is not intended to diagnose or treat any medical conditions. Please see your healthcare professional.

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