LICHEN SCLEROSUS

WARNING:  This is not a dinner conversation kind of blog.  It’s an intimate and embarrassing topic for women and their doctors.  I have lichen sclerosus.

Lichen sclerosus (LIE-kun skluh-ROW-sus) is an uncommon condition that creates patchy, white skin that appears thinner than normal. It usually affects the genital and anal areas.

Anyone can get lichen sclerosus but postmenopausal women are at higher risk.   People with lichen sclerosus are also at an increased risk of squamous cell carcinoma of the affected area.

For the past few years, I’ve been itchy and often a bit smelly down there.  I’ve gone to the doctor thinking it was a yeast infection or bladder infection or some such.  Treatment seemed to work for a bit, but this always returned.  It started in Maui so I thought it was due to the heat and sweat and often changed the 100% cotton panties two or three times a day.  To no avail.

This summer it was time for the PAP and general check up in the nether regions.  Lucky for me there was a new Nurse Practitioner at my Doctor’s office who listened to my mild complaints of itching and odor.  Lichen sclerosus. WHAT?  I’d never heard of such a thing and it sounded scary!  Lichen?  Doesn’t that grow on trees?

Lichen sclerosis is a skin condition that exists in an inconvenient gray area between dermatology and gynecology; it isn’t heavily studied.  She prescribed meds for an infection (just to be on the safe side).  She recommended Dove soap for sensitive skin or Cetaphil cleanser.  She also had me use over the counter cortisone cream on the affected area.  The tube says “never apply to genital area” and I had to call her office to ask if I wrote down her recommendation correctly. 

After about a month of that, the itching wasn’t as bad but still noticeable.  She had to do a vulvar biopsy to assure her diagnosis (ouch!).  Next phase of attack was a prescription corticosteroid  cream. 

My pharmacy did not have a generic so my copay was $120!

The following day I received an email from Icon Undies on this very topic!  If I had been diagnosed earlier, I wouldn’t have as many of the gruesome side effects.  75% of patients have permanent scarring or phimosis (yeh, look that one up!  Fusing of the skin around the clitoris).  Another visual diagnosis was “loss of architecture of the labia minor”.  Which means they are disappearing!

It’s a shocking diagnosis and embarrassing to discuss.  But I wish someone had mentioned it to me a few years ago.