Doctor experiences
Posted , 19 users are following.
I was diagnosed around April this year. Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition. Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....
3 likes, 131 replies
Pixel_Pixie Guppy007
Posted
I actually diagnosed myself. When the severe itchy clit started happening (a couple years after my hystorectomy and I was no longer doing hormone therapy) the only thing that gave me even the remotest bit of relief from the itching was a hot bath. But that would only stop the itching for a few hours. Eventually when I realized this wasn't going away the next thing I did (like I often do with manyof my medical questions) was hop online and do a bunch of research. It actually didn't take too long to figure out what I had. Once I did figure it out I went to a walk in clinic (my doctor had retired and it is very difficult to get another one... waiting lists can be months or years long where I am) and I told them what I had. The doctor I saw that day was female and she agreed with my diagnosis and prescribed Taro-Clobetasol at 0.05% which is a topical corticosteroid cream. Within a minute of using it the itching stopped. She warned me not to use much and to use it as little as possible. So now I only use it for flare ups. When I need more I just go to the walk in clinic and ask for it. It's usually a male doctor and they don't ask much or say much. They just write the prescription. Even the female doctor I had didn't tell me much of anything about it. I had no idea about the fusion even being a possibility until I lost my clit (and incidentally the itchy clit stopped itching after it fused, now I only deal with the tearing, grey patches, painful sex, etc, etc). ....I should clarify, I didn't lose my clit, lol! It's still there, it's just that the hood has closed over it.
I don't know of anyone else that has LS and up until I got it I didn't even know it existed. So I have no idea how well the doctors here know about this condition.
hanny32508 Pixel_Pixie
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Morrell1951 Pixel_Pixie
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A 50 g. tube of clobetasol should last you a year. It's better to use a tiny bit once or twice a week than to wait for a flare. I've been using it for over a year now and my flares are very mild and short-lived.
I have no expectation that baking soda will un-fuse me. Very young women may hope for surgery or one of the new experimental treatments but after age 60 I believe atrophy and fusing are irreversible. Hanny here has had a dilation procedure to open her enough to pee.
Watch that painful sex – that's what triggered the bad flare that finished me off for good.
winifred02134 Morrell1951
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Guppy007 Pixel_Pixie
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I am sure I read somewhere that there is a procedure to reverse your clit closure, not sure where I read it but maybe its something you might want to look into...
Best to you.
hanny32508 winifred02134
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Morrell1951 winifred02134
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Nice try, Taro, you're not quadrupling your income from moi!
winifred02134 hanny32508
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hanny32508 winifred02134
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anna80050 hanny32508
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hanny32508 anna80050
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Morrell1951 hanny32508
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sheila49099 Morrell1951
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water colours was my medium.
hanny32508 Morrell1951
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hanny32508 sheila49099
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Morrell1951 hanny32508
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Guppy007 Pixel_Pixie
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anna80050 Guppy007
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Yes I am! in fact have 2 shows coming up soon. I am an abstract artist!
Guppy007 anna80050
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