It Happened To Me: I Have a Rare Disease Which Causes Vaginal Itching, Scarring and Skin Fusing

It began with intense vulvar itching that kept me up at night and caused me to scratch until I bled. My long fingernails were frequently caked with blood and skin as I clawed into bar soap in attempts to clean them.

Nov 6, 2012 at 12:00pm | Leave a comment

I am lying in bed in a post-op room as my mother sits beside me. I am high as all hell and when they ask me what my pain scale is I say “eight,” despite actually feeling no pain at the moment. Even in my drugged state, I am anticipating the emotional pain and fear that is likely to follow. If you’ve just had surgery on your vulva, what’s a little extra Percocet? 

A kind chubby nurse with an ash blonde bob stands above my hospital bed. Her name is Judy. She is talking and I just keep making jokes, dark humor. My mom laughs. The nurse is clearly uncomfortable.  

“Do you feel ready to go home? How’s your pain?” she asks. She is being completely professional but doesn’t quite know what to make of me or the surgery I just had. 

“I feel fine. I can go home,” I mumble, eyes rolling back and forth like a creepy doll. 

“In order to discharge you, I need you to urinate. Think ya can do that?”

“Sure.”

I haven’t gotten out of the stretcher since coming out of surgery about an hour ago and am still very wobbly. While getting up, I accidentally flash my mother but feel no embarrassment. The nurse and I walk toward the bathroom, which -- cruelly -- is down the hall, past the nursing station, and right across from a patient who has about seven family members at his bedside.

Neither the nurse nor I realize this at the time, but during our trek my sweet, sweet mother has been following us, wiping up the large amounts of blood that are falling from between my legs.

As Judy helps me onto the toilet we simultaneously realize that I am hemorrhaging from my crotch. At this point, whatever calm she has been able to maintain vanishes and she is in full-on freak-out mode. She doesn’t seem to understand that the blood is coming from an incision on my vulva -- not from inside my vagina. Her panic makes me panic even more.  I start crying.

My gynecologist who performed the surgery -- a socially strange man in his late sixties who pronounces the word clitoris “clee-toris” and refers to sex exclusively as “relations” -- is unavailable. I guess you just perform a “clitoral hood repair,” as it was described in my pre-op paper work, and go to lunch. 

The only doctor Judy can reach is the resident on-call. Given the number of doctors I saw before getting an accurate diagnosis, my condition is not a major point in medical school. The resident is of course clueless.

I have Lichen Sclerosus. Simply put, Lichen Sclerosus (LS) is a skin disease that is most common in women and which most often manifests on the vulva and anal areas. Its symptoms include white patches, itching, fissures, bruising, scarring, skin fusing together, and narrowing of the vaginal opening to the point where sex can be uncomfortable and even impossible in severe cases. Though the cause is unknown, potential contributing factors include autoimmune problems, hormones, and genetic predisposition. 

While its definition is straightforward enough, the personal hell that this disease threw me into is complex and has been the cause of a great deal of pain beyond its inherent physical discomfort.

My first symptoms of LS occurred when I was about eight years old. It began with intense vulvar itching that kept me up at night and caused me to scratch until I bled. My long fingernails were frequently caked with blood and skin as I clawed into bar soap in attempts to clean them. Because the skin of my vulva was so torn up from both the scratching and the actual LS symptoms, it burned horribly every time I urinated. I felt ashamed, as if I had done something wrong, and was too embarrassed to tell anyone.  

Too frightened to tell my parents, I became resigned to the idea that I was going to die. My silence and secret conviction that I would die lasted about a year before I finally broke down and told my parents. They took me to my pediatrician who easily attributed the problem to chaffing from wearing leggings -- a conclusion that seems ludicrous given the severity of my symptoms. He suggested I rub diaper rash cream on my vulva several times a day, told me to stop wearing such goddamn tight pants, and called it a day.

While the ointment eased my symptoms some, they did not disappear altogether. Another year went by and I continued the pattern I had grown accustomed to -- lying awake at night, convinced I had some horrible incurable disease, and thinking of how sad my family would be when I eventually died. 

The secrecy with which I had been living, combined with the LS symptoms, kept me up at night scratching, worrying, terrified. Late night for children has a quality that speaks to aloneness more than anything else in the world. 

Sometimes it was so unbearable that I would wander downstairs, crying, where my father would be, sitting at the kitchen table, reading The New Yorker, and reveal my pain to him, but never explain the cause of this anxiety, fear, depression. He tried the best he could to calm me, asked me for the 100th time if I wanted to try meditating, even offered me a beer, and I would eventually fall asleep, only to awake to the familiar, unrelenting pain and anxiety the next morning.    

I decided I would never scratch or rub my vulva again no matter how much it itched. Eventually the skin began to heal in what I noted at the time to be a somewhat strange manner, and my symptoms all but disappeared. Life was somewhat bearable again.

I was virtually asymptomatic for about 15 years. I rarely thought about those painful few years and when reminded of them believed my pediatrician to have been right: tight pants, too much scratching. I was so disconnected from the experience that when, at 23, the itching started again, I didn’t make the connection between my current state and the ordeal I went through as a child. 

So it began again. I went to Planned Parenthood where the nurse practitioner tested me for yeast, STDs and any other vaginal infection. I had none. 

By this point other symptoms has developed -- skin tears and bruising after intercourse being the most disturbing of which. After hundreds of dollars spent and much emotional stress, going back to Planned Parenthood multiple times and being told I had no infection and essentially they could do nothing for me, I made an appointment with a gynecologist I had seen as a teenager. 

She once again told me I had no apparent infection but that my vulva looked a little strange and I should see her colleague, the only specialist in the area on a condition called Lichen Sclerosus. Strangely enough, despite numerous medical professionals and sexual partners seeing my vulva over the years, up until this point, none of them had commented on its appearance as being unusual.  

Upon first examining me, the specialist immediately diagnosed me with LS. Apparently, my case was text book. He noted with some amazement that the skin of my clitoral hood had completely fused over, covering my clitoris entirely. He also explained that my vaginal opening had narrowed, which could cause painful intercourse. Had this been a problem for me? 

I had never had any problems achieving orgasm and had experienced no sexual pain up until recently. My vulva had not changed overnight. What he was seeing was the long-term consequences of a severe case of Lichen Sclerosis. 

While the disease’s progression can be halted through the use of topical steroids and I would need to go to a physical therapist who would supply me with and instruct me on how to use vaginal dilators to stretch my opening (who knew there were physical therapists for vaginas?), the structural damage could only be undone with surgery. I would need to wait for the disease to calm down however, and then we could discuss the possibility of my going under the knife.

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Vaginal dilators in every size, directing the show...or my life.

The thought of having surgery on my vulva was terrifying and I mulled over it for another year. I wasn’t having any loss of sensation that I knew of and no one besides a vulva specialist had noticed mine’s atypical appearance. But still the thoughts nagged at me -- I wanted to look normal and god, what if I wasn’t experiencing as much sensation as others? I decided to do it.

The months following my surgery were extremely difficult. I almost immediately regretted it. Upon first seeing my post-op vulva I was horrified and threw an inconsolable fit, convinced I had been butchered. What had been simply explained by my doctor as a small incision to disconnect the fused skin looked like a horror show.

Of course this was a day after the surgery and my vulva looked nothing like it would when healed. I confronted my doctor angrily about not fully explaining the surgery: He didn’t tell me I would have stitches! He said I would be healed in a “few weeks,” now it’s six?! 

I was extremely angry at him, the medical staff -- including a boorish  nurse anesthetist who had laughed at my desire to have healing statements read to me while under anesthesia, and the world in general. I felt violated and lied to. I became terrified that the doctor had cut a nerve unintentionally and I would never have any sensation again.  

It has been about six months since my surgery. I am fully healed and the sensation has returned. I can see my actual clitoris for the first time in my adult life. I do not have the glowing beautiful vulva of my dreams, but what is that anyway? My vulva looks pretty damn “normal.” 

I will likely have to use a maintenance dose of topical steroids for the rest of my life and contend with occasional flares when the itching seems unbearable. But I know my condition and how to control it. While this is not a pleasant disease or experience, it has been an important one for me. I know what it is to suffer and I know I am not the only woman who has endured this particular brand of anguish. 

I believe LS and other pain disorders affecting women’s genitals, often referred to under the umbrella term “Vulvodynia,” are not nearly as rare as they are thought to be and the general ignorance surrounding them is due greatly to a lack of open discussion regarding female anatomy and health. These should not be taboo concepts and it is only when we treat them as such that women become terrified of their own bodies and ignorance and shame prevail.

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Me today with all the products I have used over the years on my vulva, embracing the experience.

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