A skin disease that can disrupt a sex life
You’ve probably heard of lichens, complex organisms consisting of a fungus and an alga (and sometimes a bacterium) that break down rocks to create soil.
Though lichens vary widely in color and form, most often seen are the white crusty varieties that colonize the surface of trees, rocks and barren soil. This type has lent its name to a little-known skin disease — lichen sclerosus — that typically manifests as white crusts on genital tissues and is often undiagnosed or misdiagnosed before it wreaks havoc on people’s lives.
A related disorder, lichen planus, more often affects the skin and inside of the mouth but can also affect genital membranes, where it can be more challenging to treat than lichen sclerosus.
Although lichen sclerosus can form on any skin surface, it has a predilection for a woman’s vulva and, less often, a man’s penis, and it can so disrupt people’s sex lives that divorce or celibacy is sometimes the outcome.
Lichen planus generally has broader targets, but an erosive form can affect the anal-genital region and other body parts and be as destructive as lichen sclerosus. In addition to pain, both conditions can cause intense itching that, lacking an accurate diagnosis, patients may mistreat with creams and other substances that only make matters worse. Doctors, too, may mistake the problem for a yeast infection and prescribe the wrong treatment.
Furthermore, people rarely talk freely about diseases that attack the vulva or penis, even to their doctors, which delays a correct diagnosis and effective treatment. But even when patients overcome their embarrassment, they often run up against medical ignorance and mistreatment until affected tissues become irreparably scarred.
“When gynecologists do a pelvic exam, they may not even look at the vulva,” said Dr. Anuja Vyas, a gynecologist at Baylor College of Medicine who specializes in these disorders. “Doctors often treat the vulva like a small Midwestern town that you drive through without noticing it.”
And when a woman past menopause complains that vaginal pain has made intercourse impossible, doctors may dismiss it as normal age-related changes and miss the presence of a treatable disease, she said.
Thus, it is often up to patients to make sure they get to a knowledgeable health care provider and get treatment that relieves symptoms and halts progression of their disease.
As two nurse practitioners, Nicholas Wedel and Laura Johnson, pointed out in The Journal of Nurse Practitioners, “Vulvar health is one aspect of women’s health that is often not discussed,” even though “up to 20% of all women will experience significant vulvar symptoms at some point in their lives.”
Yet, they added, “when left untreated, vulvar lichen sclerosus can cause significant physical, emotional and sexual discomfort.”