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I was recently diagnosed with LS (*sarcastic cheer*) although actually at the time I was overjoyed to have a name for it. I have pretty bad health anxiety so obviously I was convinced I had some terrible terminal disease, so being diagnosed with this felt manageable in comparison.
I basically had the usual things I've seen on here. I'm in my early 20s and had months and months of itching, treatments for thrush, some for BV, recurrent urine infections, more thrush treatments. Then I went for a smear test and I was in so much pain I couldn't bear it. I finally insisted to my GP that I DIDN'T have thrush and I needed to see someone. She admitted GPs don't know a lot about things beyond thrush, so I got a referall to a hospital (I'm in London, UK) and the consultant was amazingly thorough, took a detailed history, did an exam, and said her clinical diganosis (with no biopsy) was lichen sclerosus. She said when I told her I had had childhood asthma (with some adult flare ups) and ecezma that everything suddenly made sense.
But...I don't have white patches at all. Does anyne else not have any white patches? I can't find any sort of medical website or paper that mentions not having it. I have itchiness (well more like a sharp scratching sensation, sometimes will feel like I have a thorn trapped down there!) that usually comes when I am walking about especially in tight jeans (if I am having a flare up). Also after I've peed it feels a little sore and during contact with any kind of water (though having a nice Dermol bath does feel amazing but only afterwards, once I am out of the water). I think a recent bad cold and serious stress has impacted it and I am doing my best to work my way back up to how I felt after seeing gyno, which was going weeks without any symptoms. Now it's more like days, or hours.
I am going back to consultant in 6 weeks and have so many questions for her. But after all my rambling I also have a few questions for you guys:
1) Has anyone else not presented with white patches and yet been diagnosed with LS?
2) Does water affect anyone else? When I lie in the bath I feel...weird, like it's going right up inside me with no barrier and it feels very raw. I almost have to cross my legs to get rid of sensation. I try not to get any water on it at all when I am in the shower as that just sets it off - and this is whilst using Dermol, not a fancy soap or anything. But I do love a good bath and it ruins the enjoyment slightly.
3) Smear test and sex - these are my two biggest fears with this or any similar diagnoses. I haven't had sex yet but I am anxious about it already. And I am anxious about trying for a smear test again (though my gyno calmed my fears and I am not going to have one until after I've had sex).
4) Flare ups - how long do yours last? I feel like this one started about 6 weeks ago and it doesn't seem to be calming down! Which makes me anxious. Which probably makes it worse. Ahhh.
Thanks everyone. This forum has in turn helped and scared the bejeezus out of me, so I thought I'd finally contribute.
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