Anonymous Guest Post: Lichen Sclerosus: A life sentence

Today I present to you, my friends, a guest post. As you’ve probably noticed, I don’t usually have guest posters. But, I couldn’t turn this friend down. She has been diagnosed with a condition that doesn’t have a lot of givens. It’s called Lichen Sclerosus. Without further ado, I present to you…my friend Anonymous (she isn’t comfortable sharing her name but she wants you to know, it could be any of us from anywhere).

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As far back as I can remember, I’ve always been itchy down there. Down there…the vaginal area. I never thought much about it because it usually went away after a couple days. Sometimes, it wouldn’t come back for years or sometimes it would strike around the same time I was PMS’ing. Sometimes, there didn’t seem to be any reason whatsoever.

When my youngest child was around 2, I was at my yearly checkup and my doctor ended up doing a biopsy. The skin on the outside of my vagina had some white patches, she told me. Which, is a common occurrence when Lichen Sclerosus is present. About a week later, my doctor called to tell me the biopsy came back negative and she gave me a high five over the phone. Because, no one wants to be diagnosed with Lichen Sclerosus, it’s a horrible condition…she said.

For the next ten years, I went about my life. Sure, I still dealt with occasional bouts of extreme itchiness, but I was getting used to it and its inconsistencies. Some days, weeks and months were better than others.

This past summer was a pivotal turning point in my life. The itching became uncontrollable and unbearable, although still inconsistent. It was always the worst at night, I’d go sit on the toilet and scratch it with wadded up toilet paper. Inevitably, it would tear skin around the vagina creating a horrible burning when anything came near it.

I was now familiar with Misery, it had taken up residence in my underwear.

The last straw coincided with my most recent yearly gynecological check up. Two birds, one stone.

The amount of itching had reached epic proportions. The amount of scratching I was doing had surpassed epic and moved on toward whatever is bigger than epic. And, it’s a vicious cycle, the itch/scratch thing. Because, the more you scratch, the worse the itching gets. There’s no victor in this war.

I’d wake up in the middle of the night, writhing in agony because of how badly it itched. The amount of damage done by the amount of scratching done..was horrendous. Daggers sliced during urination and honestly, any type of touch, due to all the scratches created on and around the vulva. I was becoming terrified because the Internet searches were telling me I was dying.

Finally, the day of my gynecology appointment arrived. I was freshly showered and, unfortunately, I didn’t put any hydrocortisone cream on so, freshly itchy, too.

I was led to the examination room where I wailed out a tale of my vaginal woes to the nurse, who scribbled what I was telling her into my file for the doctor to read when she came to see me.

When my doctor arrived, she buried her nose in my file, grunted a few times and then looked at me with a super serious expression before sitting down in front of the patient which was housed between my legs.

She asked me some questions as she did the pap smear which, in retrospect, kept me relaxed and I didn’t feel a thing.

Then, she grabbed a hand mirror and handed it to me so I could see what she saw. While I was looking at the reflection of my private parts, she pointed out some concerns she had. I was covered in white patches along the vulva and down toward the anal region. Coincidentally, those white spots are the exact locations of where I was itchiest.

She told me she strongly suspected Lichen Sclerosus and that this time, she was positive the biopsy would confirm her suspicions. I was presenting all the tell-tale signs of this condition. And what a condition it was. Not pretty.

Her biggest concern, when it came to Lichen Sclerosus, was the elevated risk for cancer of the vulva. Because, the white spots become scars and then those scars can become cancerous if left untreated. So, once the results came back from my biopsy, assuming they were positive for the condition, she was going to have me start an aggressive steroid cream therapy which should stop the itching and allow the condition to lessen. Perhaps helping it to go into remission. But, remissions don’t last forever. However, Lichen Sclerosus does.

I wanted to know if I could give it to my husband. She assured me that it’s not contagious. It’s not an STD. However, it’s a permanent condition without a cure. In fact, I found out that doctors don’t really know all that much about Lichen Sclerosus. Some thoughts lean toward it being caused by an autoimmune disorder. Which..I have. I have a thyroid condition that is in remission. I’ve had it for years. Some researchers say it is possibly caused by a lack of sex hormones in the area. I have no clue about that. Some researchers say it’s genetic. And, I do remember my mom having a constant itch she was scratching. Also, there is thought that it is due to some sort of trauma in the area..maybe child birth?

Lichen Sclerosus can affect both men and women and even children. It’s not always in the genitals, either. It could surface anywhere on the body. For men who have LS, it usually appears on the foreskin, which can be removed and therefore, it gets rid of the condition. In children, they usually outgrow it. In women, it generally occurs post menopausal but based on the few articles I’ve read, that hasn’t been the case. Many are diagnosed with this condition in their teenage years and have a constant, long-term battle on their hands.

Symptoms of Lichen Scleorus often mimic other conditions and therefore, it is a very misdiagnosed condition. Extreme itching around the vagina and toward the anus. General discomfort in the affected area. Smooth white spots appear on the skin around the affected area which can become scarred, wrinkly patches. Bruising and tearing easily. Pain during intercourse due to sensitive skin.

Friends and readers of Melissa’s blog, if you are having any of these symptoms, do a self check. Hold a mirror in front of your genitals and inspect it. If you notice white patches and have had itching, call your doctor and schedule an appointment. Because, if this condition goes untreated, it changes the architecture of your vagina and can make urination and sex exceptionally difficult. Also, LS increases your chances for cancer of the vulva by 5%. That might not seem like a lot but anything over 0% isn’t worth a risk when it comes to health.

1 in 60 women will be diagnosed with Lichen Sclerosus. Right now, there is no cure but there are great treatments. Heavy-duty topical steroid creams, sex hormone creams, immune modulating medications and also, it appears that there is a promising stem cell therapy being researched.

No, Lichen Sclerosus isn’t going to kill me. It’s not going to disable me. It could disfigure my vaginal area but that would only kill how I feel about myself. It’s not cancer, although it increases the chances of it. It’s not a life-threatening disease.

But, it’s real.

And, it’s uncomfortable and sometimes unbearable.

The effects of it can range from moderate to devastating.

Yes, it can be embarrassing to talk about, even with your partner. Because, it’s in a ‘private’ area and we just don’t talk about these kinds of things.

The problem is, if you don’t talk about it, it could get worse.

And trust me, you don’t want it to get worse.

If you have an itch, you need to talk about it with your doctor.

Chances are, it’s nothing.

But, why take chances when it comes to your health?

Here is a bravely done video which is what helped me with wanting to come forward and talk about this horrible condition. And, here is another video about LS.

Thank you, Melissa. For letting me share my story. There doesn’t seem to be a lot of information on the Internet about Lichen Sclerosus, even though it seems to be a growing diagnosis.

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