I Have A New Diagnosis

Some of you are aware that I’ve been dealing with genital pain and swelling, centered on my clit and labia minora, for about 2.5 months. I had mobility issues (both in walking and in sitting in most chairs), and had to take time off work for that and for multiple visits to three separate doctor’s offices. There were tests, and a lot of wondering what was wrong, and a lot of ruling out of things.

At one point I tested positive for a yeast infection, and we thought all of the trouble might be traced back to some kind of stubborn fungus. I took a lot of antifungals and I began to adjust myself to the idea that I’d be fighting recurring fungal infections for the long-term. But, it turns out, that was not what was causing most of the symptoms.

The biopsy of my labia done on Monday came back positive on Friday, for something called lichen sclerosis. Lichen sclerosis is an autoimmune-related inflammation of the skin, usually of the genitals. It can happen in bodies that have vaginas, penises, or any combination, at any age, but most often happens in folks with uteri and vaginas after cessation of menstrual cycles (I’m not there yet, but I’m probably early perimenopausal). Lichen sclerosis symptoms often include recurrent itching and pain, and thinning and wrinkling of the genital skin. There’s potential for easy breakage of the skin, the labia shrinking in size, and for the build-up of significant scar tissue.

I’m still learning what this means for me. There’s no way to know for sure now what my LS will look like over the years. The debilitating pain I’ve had these months is from *untreated* LS, and now we *know* what it is. I’m feeling both sadness and relief about this. Our next treatment goal is to get the uncontrolled inflammation under control, with daily use of steroid cream. After some weeks/months of that, we hope to be able to taper me down to maintenance levels of various medications. There are hormone creams that can help with the skin thinning, and should there eventually be scar tissue build-up, there are laser and cryo procedures that may address that well. It’s a chronic illness, that may cause trouble for short or long periods of time, and/or may go into remission for years. I will be dealing with the possibility of LS flaring up and causing pain and changes to my genitals for the rest of my life, and I will make daily decisions to either address it if symptoms are present or minimize the possibility of flare-up if they’re not. My family and docs and I will need to keep a closer eye out for certain vulvar cancers, which I have some elevated risk for. The LS will undoubtedly have a long-term impact on my sex life, at the very least giving us pause to decide what activities are best for me at any given time. Hopefully, though, the complete moratorium on any action between my legs that I’ve had for the last 10 weeks won’t be the norm. I may also soon have fewer times of profoundly reduced mobility; if they come again, they should be at least much fewer and farther between.

I’m a bit terrified, and right now I’m quite sad. But I’m relieved – we’re ALL relieved – to finally know what we’re dealing with. I am optimistic that this can be managed well. It sounds like a lot of people respond well to the treatments and procedures available. It also seems that I found a knowledgeable doctor that caught this much earlier in the scarring process than is common. Maybe there was an upside to this starting near my clit, and causing such a high level of pain so quickly directly from inflammation, rather than low level vulvar itching and scarring happening over a longer period of time.

I’m so tremendously thankful for a family that’s supportive and encouraging and funny and loving. I’m thankful that creativity is already a major element of my sex life, which makes a satisfying future sex life a lot easier to imagine. I’m thankful that’s it’s not a more dangerous problem. I’m thankful that my job is flexible enough to not have been threatened by these difficult few weeks. We’re lucky to have the resources to pay for my medical care out of pocket (I have no insurance). I’m tired and sad and in pain still. But I’m better than I have been for weeks.

Published in: on July 13, 2013 at 2:31 pm  Comments (1)  

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  1. i’m so sorry that you have to deal with this; but i’m glad you’re learning about it relatively early, and feeling optimistic about managing it! *offers hugs*


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