Saturday, June 9, 2007

Lichen Sclerosus, My Story

"Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one''.
C.S. Lewis

This is extremely personal, and some of this may not be appropriate for young children, but please bear with me. I have decided to start talking about a condition that I have been living with for a long time.

I will do my best to provide links to some of the more complicated parts as much as possible.

The condition that I have, that I have been living with for longer than any doctor will admit to, is a skin condition called Lichen Sclerosus et Atrophicus. That's the full Latin name for it. I and others with my condition simply call it LS. Much easier. It is a skin disorder that commonly affects girls and women, but can occasionally affect men and boys. To keep this G-rated, please follow the links for more information on what it is.

Itching is one of the most common, and most severe of the symptoms. Some of the symptoms and visual presentations can lead to questions of child abuse in young girls, which has caused countless issues for parents who only want to help their children.

As a child, I experienced frequent UTI's, a common issue in girls with LS. I recently read an article that linked constipation issues, another problem I frequently dealt with as a child.

The itching went on for a number of years, but was never bad enough for anyone to look into it to any extent, and I probably didn't think at the time that it was important enough to be mentioned. Not that it would have likely been properly diagnosed at the time, for it is still frequently misdiagnosed or ignored even now.

At age 15, I was subjected to some of the worst pain I had ever known, for my first gynecological exam. The people in the waiting room could hear my screams. The nurses just thought I was being difficult, and told me to relax. I didn't know at the time that it wasn't supposed to hurt like that. No one ever told me, and at that time, I didn't want to ask.

After that, I avoided exams like the plague. Even when I had some issues that should probably have been dealt with, the memory of the pain I had experience kept me away. After my husband and I married in 1999, and I became pregnant, the worst of it began. Dyspareunia became an issue that I was unaware of before our marriage, we believe the pregnancy may have been the trigger. My first doctor diagnosed me as "frigid", and told me to go home and relax after I complained to him several times about the intense pain I felt. He could not find anything wrong, therefore he concluded that it was all in my head. As soon as our first child was born, I found a new doctor.

The new doctor, after several visits and a few random treatments to mask the pain, decided that I had Vulvodynia, as well as Vulvar Vestibulitis. At the very least, it was a start. I was given a few more treatments, but they didn't get us very far. It was at that point that the doctor admitted there was little more he could do, and referred me to a doctor who specialized in gynecological disorders.

Upon my first visit, the doctor asked me a very long list of questions about my childhood medical history, as well as the more recent information. The questions went on for an hour, and she even talked to my husband separately. She then told me of her suspicion of Lichen Sclerosus, and explained the disorder. She wanted to do a biopsy to confirm her diagnosis, but even after the exam she was positive that she was correct. A week later the biopsy confirmed LS.

She started me on treatment immediately, and the relief was incredible. I was able to taper off the treatments after a few months, but then I had to stop when I became pregnant again. I started treatments again after the delivery, and experienced one of the fasted healing periods I had had after a delivery. By then it was child #3. Treatment continued until I became pregnant with #4, and again, I used the medications and had a very quick healing time. It was a few months after the birth of #4 that I realized that I no longer seemed to need the medication. I was doing well without treatment, and even since the birth of #5, I have not used any treatments since then.

Knowing what I do about this disease however, I realize that I could experience a flare up any day. So far that has not happened and I can only hope that it stays that way.

I have been one of the lucky ones. Other women have gone through decades of torture, trying harsh therapies that got them nowhere; losing husbands who thought their wives were "frigid" as my first doctor told me; experiencing severe scarring; and sometimes eventually cancer of the vulva. My husband did not leave me, and once the diagnosis was made, I was able to experience a remission.

I have been reluctant to speak to many people about this, because it is such a sensitive topic. It is so personal, that it just does not come up in normal conversation. I think I've only spoken with some of my closest friends, and even that has been limited.

Now, onto the biggest reason I have for speaking up now. Over the last few months, I have been noticing certain symptoms in my daughter. Unexplained itching; UTI'S; constipation, and a few other signs. I am frightened for her, but I am hopeful. If her diagnosis proves to be LS, treatment now will help her later in life. Perhaps she won't have to go through the pain and uncertainty that I went through.

If you, as a woman or a mother, think that some of these symptoms look familiar, in yourselves or your daughters, please get her checked out. If your doctor has no idea what LS is or how to diagnose it, find someone who does. Either a pediatric gynecologist or a dermatologist should have an idea of what you are talking about, but I have run across several doctors who say they know what you're talking about, and then it turns out they really have no clue. To save time and headache, call ahead and ask lots of questions, and if they brush you off, find someone else if you can.

Thank you all for reading if you've gotten this far. My goal in this is to attempt to raise awareness about this condition, and to help spare someone the stress I went through to get a diagnosis.

Here are a few more links with good information about this disorder:

I also want to thank Karen of Swank Web Style who so graciously provided a button for me. She created a very beautiful button to help raise awareness about LS. Please visit her and her colleagues at Swank Web Style and see what else they have to offer. I have liked everything I have seen by them.


brian said...
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Alison Johnston said...

I was wondering if there is someway I could communicate with you via email. I have several questions about LS, and you are the first person I've come across who might be able to help me. Thank you.

Unknown said...
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