I am honored to host another guest post about Lichen Sclerosus. After the first guest post I published, I met more women with this incurable skin condition. If we can share these stories, maybe we can shed more light on this disease. And maybe, just maybe…we can prevent other women from suffering the way so many women have been. Guys have no problems talking about their penises. Why should our vagina problems stay within the confines of our underwear?
Let’s start talking about our vaginas. And the conditions that aren’t as uncommon as we think they are. Lichen Sclerosus, dermatitis, vulvodynia, and vulva cancer. These conditions are real. They are painful. They are debilitating. They can ruin how women feel about themselves and their femininity. We need to find effective, long-term cures.
Please…read Donna’s story:
When The Itch Doesn’t Go Away
Few things are more uncomfortable and embarrassing than a persistent itch between your legs. Most women are familiar with the feeling of a yeast infection, but with proper treatment that goes away. What happens when it doesn’t go away? When you cut down on sugar, use only gentle soaps and laundry products, wear looser pants and cotton underwear but you’re still miserable? When you’re waking yourself up at night with bits of flesh and blood under your fingernails; cringing when your husband tries to be amorous because your nether regions burn like fire during sex and not in a good way? You know you shouldn’t scratch but you do it in your sleep and wake up to tiny cuts that burn when urine passes.
That was my life 15 years ago. I went to gynecologists and GPs until my insurance wouldn’t pay for any more. I was treated for recurrent yeast infections, bacterial vaginosis (BV), bladder infections, and hormone loss; none of which made any difference and those treatments often created more problems. I even wondered if I had developed an allergy to my husband’s sperm because sex made it so much worse. When I finally got the courage to look at myself with a hand mirror the entire region was bright red, inflamed, irritated.
I recall watching TV with an ice pack between my legs when my husband asked why I was no longer interested in sex. He thought I didn’t love him and was making excuses. I would jump out of bed afterwards to hold a cold hand-held shower between my legs as I cried, but he didn’t seem concerned about my feelings. I showed him the redness and irritation and he just said “Go to a doctor.” Like I hadn’t already been to a dozen of them! Our marriage had its issues but this drove a very deep wedge between us. I no longer felt like a healthy sexual woman and, because he was attractive and extroverted, I feared that he would go elsewhere for satisfaction.
Out of options, I went to the local free clinic where they took one look and told me I had genital herpes because of the red irritated areas with blisterlike itchy spots. I knew I had not been unfaithful and believed my greatest fear had come true and my husband had infected me with an STD. He denied it but between our poor communication skills, each of us coping with negative self-esteem, and because he had been unsupportive of my health problems, I doubted him. I’m not saying this is what destroyed our marriage but once trust has been lost it’s very hard to get it back and we eventually divorced.
Years later, after moving to another state, I was scratching myself relentlessly when I decided to get out the mirror again, only to see an angry dark splotch on my outer labia. After googling “dark spot on labia” and convincing myself I had melanoma, I saw a gynecologist. He performed a biopsy right there in his office. I was on pins and needles for two weeks until I went back and was told I had lichen sclerosus and the dark spot was from broken blood vessels underneath the skin from scratching. I was just so grateful it wasn’t cancer that I was not very concerned. They gave me a steroid cream and a computer-generated handout, said to come back in 6 months, and that was it. There were no instructions on using the cream. The steroid cream did sting a bit but eventually the itch abated a little. The instructions on the box were to only use it for 2 weeks, so that’s what I did. After that I used it sparingly when I itched, which was still pretty often. Next time there was a different gynecologist at the office. He said I had “fused” but I didn’t know what that meant. He was barely able to insert a speculum, which hurt unbearably. I have a good pain tolerance, having had natural childbirth, but that speculum was torture. He went on to say my clitoris had been obliterated by the fusing and it was because of progression of the lichen sclerosus, in which healthy tissue is replaced by unhealthy and abnormal scar tissue which tears easily and then scars back together, causing fusing. For the first time I realized this was very serious. He offered estrogen cream to help with the fusion but it caused even more irritation so I didn’t use it for long.
For the first time I took a proactive approach and began doing research on the internet. I found a group of others with lichen sclerosus and realized I had never been properly instructed on the use of the steroids. I got a strong prescription steroid ointment instead of the cream (it has fewer ingredients that can irritate) and used it twice a day, every day for a month. For the first time in 15 years the itch completely stopped. I had grown so used to it that I hadn’t even realized how awful it had been until it was gone. I was then referred to a dermatologist to be sure it hadn’t progressed to vulvar cancer, which can happen with uncontrolled lichen sclerosus. She admitted she was unfamiliar with this uncommon disease, but she consulted with other dermatologists and prescribed me the male hormone testosterone to attempt to alleviate the fusing, which by now was so bad I could not have a pelvic exam at all due to my vagina being fused nearly shut.
Now, a few months later, with proper care and treatment the itch is gone, the swelling is gone, the burning when I urinate is gone. The testosterone has plumped up the tissues and begun to unfuse the damaged areas. There is still discoloration and I must be very careful with dietary and environmental triggers or I’ll get a flare-up. I don’t know if I’ll ever be able to have sex again, but I am in my 50s so it’s not a huge issue, though the thought of living alone for the rest of my life because of this disease is discouraging. I never did have herpes, and when I emailed my ex-husband with that information he replied, “I always knew that Donna, because I never cheated on you.” We had other problems but I wonder if I had been properly diagnosed and treated at the beginning, if we would still be married now.
That’s why I want to share my story, so that other women need not go through this horrible life-changing experience. Lichen sclerosus cannot be cured, but it can be managed. If correctly diagnosed and treated early on, there need not be architectural damage to your genitalia. Because this is a little-known disease many doctors and nurses are unfamiliar with it, but thanks to the internet we can each be proactive and knowledgeable about our own health. Don’t be afraid to get a hand mirror and do a self-exam every month when you do your breast exam. Don’t be afraid to seek out another doctor, and another, if you are not getting the care you deserve.
On this journey of self-discovery I realized that as a child I was taught that my genitalia were dirty, shameful, disgusting. Nothing could be further from the truth. I had a friend in high school who said she loved getting her period because it made her feel womanly and feminine; I had been told it was a curse. I have learned to overcome these early misguided teachings and love my body, all of it. My lady bits were capable of giving me and my loving partner exquisite pleasure over the years. My female organs also blessed me with a precious daughter. Now that this part of my body is fighting a disease I send it loving thoughts and gratitude instead of looking upon it as something nasty or bad.
I am an older lady and enjoyed good health in my youth; however this condition can affect young people, teenagers, even young children. It mostly affects females, but men and boys can get it as well. I hope to bring some awareness of lichen sclerosus by telling my story. It can be stressful and painful but it is not contagious, it is not sexually transmitted, it is nothing to be ashamed of. It is an autoimmune skin disease that causes silent suffering for countless people around the world. I am one of them.