My story, so far...(lengthy)

I'm Hailey, and I'll be 28 years old next month. I've worked retail management and customer service most of my life, and I'm currently a full time student. I've been exposed to high stress environments for the last ten years, and I'm not the type to worry much about anything. I've always believed everything happens for a reason, and in time, "even grass will turn to milk."  

The experience I've had with what *might* be vulvodynia is something that goes against everything I stand for. How can there be a reason that I, as well as all of you, can be challenged with something so painful, and so invisible to anyone who can help. This discomfort, these symptoms, with no outward signs made ABSOLUTELY NO SENSE to me.

As a child, and throughout my adolescence, I was incredibly prone to UTIs and kidney stones. After several UTIs during my youth, I was hospitalized with a severe kidney infection and dehydration. I also maintained a fever of 104.something for several hours. Every time I had a UTI, I was given amoxicillin, and every time I took amoxicillin, I got a yeast infection. Eventually I started requesting Diflucan with amoxicillin to combat the yeast infection. More recently, doctors prescribed antibiotics less likely to give me a yeast infection, because I can't imagine a yeast infection on top of whatever this is.

I can remember having vulvar discomfort since I was 24 years old. I had been sexually inactive for 2 years at that point, and it began with a very localized itch. I had one very small, skin colored bump at the opening of my labia majora. The bump itched incessantly, and if I pinched it, it would bruise and discharge a small amount of blood from the nearby hair follicle. The wound would stay open for days and it seemed to infect the other side of the opening of my labia majora, at the exact spot it rested against with my legs closed. The bumps were sensative to urine and water. The bump would fade and return, never with any outward visibility. Even when the bump wasn't present, I began to develop a chronic itch. After my monthly period, it would clear up for days, weeks, and once or twice, a month or more.

I waited until the symptoms were incredibly discomforting before going to the local heath department. They gave me tests for the most common STDs and everything showed negative. I remained sexually inactive for another year, but still experienced itching. The itching became so intense that I was ripping my skin with my fingernails and damn near scrubbing myself with toilet paper because it felt so good. Of course, I developed a bacterial infection that caused the itch to become even MORE intense.

I returned to the health department several months after my first visit. I no longer had the invisible, itchy, swollen bumps that it seemed to start with. Just an embarrassing, uncomfortable itch. The doctor I saw that time around informed me that my previous STD tests never included a test for herpes. I never knew a special culture was done to test for herpes, and was always under the impression that I'd been tested every year for everything since I was 16. Evidently, I'd never been tested for herpes, and I about had a heart attack right then and there. I know if that's the direction it went in, I'd be okay - the world wouldn't end - but I was TERRIFIED.

The doctor took one look, for a few seconds, and told me that she thought I had herpes. She said, "I really usually tell people that I'm 90% sure without a culture, but for you, I'm only 80% sure. You don't have a classic case, that's for sure." That day, at 26 years old, I went home and cried in my momma's lap. I blamed God, my exboyfriends, the health department and myself. The woman prescribed me with cream and medicine for herpes, but I did not take it. I'd researched enough about my symptoms at that point, and women existed with my symptoms! Women that didn't have herpes! And actually, some of these women experienced extremely intensified symptoms after treating them with herpes medicine. I thought I'd get a second opinion.

I scheduled an appointment with an OB/GYN in the medical district. The doctor examined me and gave me tests for bacterial infections and STDs. She did not give me a test for herpes, because there was nothing to culture. There was no outbreaks, no pimples, nothing with a discharge; everything looked fine. She did notice high levels of bacteria, and gave me an Rx for Flagel and a steroidal topical cream. The cream burned, and did not help at all. The Flagel seemed to help while I was taking it, but as soon as I stopped taking it, the itch returned.

Without the money to keep going to doctors and buying perscriptions, I tried to find a home remedy. I started using different lotions. Lotion seemed to help because it made scratching more satisfying and less traumatic to my scarring skin. I did go back to the gynecologist approximately 8 months later. My symptoms hadn't improved since I finished my antibiotics. I was starting to experience swelling and burning, as well as stabbing pain in and around my clitoral hood and glans. I've never felt any pain or itch any closer to my vaginal opening than that. But, when my clitoris is swollen, it feels like there is a splinter firmly wedged somewhere in there. It makes underwear and sex completely uncomfortable. I was still scratching so hard I was breaking skin, and the gynecologist was able to see that. She could see that I was raw in the area around and above my clitoris, and extending through my hairline at the opening of my labia majora.

She said she could culture the area of skin I broke scratching for herpes (to ease my mind), but it may not be enough to render results. It would be expensive, and its accuracy could not be guaranteed because the skin was broken from a scratch, not an outbreak. I declined the culture and agreed to come back on a day where my symptoms were any worse or more visible, at least. She suggested I look into the symptoms of lichen sclerosis to see if they matched my own.

I finally began discussing my symptoms with a friend, who told me her sister and her best friend had vulvodynia. She said her both her sister's and her friend's symptoms were provoked by using the ONE-TIME USE MONISTAT for a yeast infection. I began researching vulvodynia and found that it more accurately describes my symptoms than anything else I've looked at. Also, in regards to my doctor's suggestion of lichen sclerosis, I found another source that talked about lichen simplex, which also closely matched my symptoms. My doctor also said that our nerves can develop a lifelong "itching" sensation after situations that cause serious, long term itching. In other words, she said if you scratch long enough, you'll itch forever.

So - anyway, that's my story so far. I've found ice and sleeping pills help at night, wearing seemless underwear (regardless of the material) helps during the day, and SPECIFICALLY, Queen Helene's Cocoa Butter Face & Body Cream keeps the area from becoming raw.

Wow, this got long - but it feels great to have it all out in chronological order. I'm going to keep this as a record and bring it with me to my next appointment to see if there's something I forgot to tell my doctor!

Time for a nap.