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I've just been diagnosed with this horrible skin disorder. It's fairly rare and causes the skin on the vulva to become thin and white and tear easily leaving cuts and blisters. It's so painful and no one knows what causes it and there's no cure.. just creams to relieve it a little. I'm so scared and upset.. I read online that it can cause the holes down there to close up and the tissue to fuse together and that the vagina can become disfigured and some people end up needing surgery. I feel really depressed and upset and don't know why this is happening to me. Does anyone else have this problem?

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I don't have this problem but wanted to jump in and give you a hug! It sounds like something that will require a lot of gentle care to keep in remission, although I'm hoping that now that you've been diagnosed, the doctors can refer you to a specialist that will provide some relief for you.


Are you set to see a dermatologist, or a gynecologist?

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I'm really, really sorry. *hug* This sounds painful and my heart really goes out to you.


I think you need to find a gynecologist who is familiar with this disorder, pronto. Don't go to a dermatologist, they aren't going to see conditions "down there" and they won't know what to do (I may be a little biased but I've seen dermatologists for skin conditions that had an underlying cause and they ALWAYS, ALWAYS made it WORSE!). Seek out a gyno because they will also be able to address the tissue concern as well as learning to avoid sexual dysfunction.


Even if you can't see a speciality gyno in person, you should find one that will work with you over the phone. He/she will still be able to write Rx and even do labs if needed.


Please find someone soon who can help you. The best way may be to start with your own doctor...if he doesn't know, then go online and find out online communities for women who have this. Join one and give some info about your location and such, and someone there may be able to point you to a helpful professional.


Best of luck.

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Hope you get it sorted.i hadn't heard of it of it before but from what I've found since I read your post unless your skin has changed already steroid cream can be effective in reducing inflammation.surgery is quite rare and normally other methods can help.


Let us know how it goes.thoughts and prayers are with u xx

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Actually, dermatologists do diagnose this probably as frequently as gynecologists, because it's a skin condition, and dermatologists are trained to treat and diagnose ALL skin disorders, wherever they are on the body -- and some are mainly or often found on the genitals. A good dermatologist would be as good for this as a good gynecologist (though you can get bad doctors in any specialty).


In order to avoid scarring and closing of the vagina, you have to use devices like dildos to keep the tissue as healthy as possible. So ask your doctor how to avoid these complications and discuss seeing a pelvic pain therapist, who specializes in helping women with these disorders to stay functional.


I agree with Fudgie that you can get a lot of support and help in online support groups for women who have this. Try forums like this geared towards that, and you'll see you are not alone there, and you may get helpful ideas, as well as moral support, from other ladies.


I feel your pain. I have something similar (but not that diagnosis specifically). You should probably get counseling as well (a sex therapist would be best) to help you cope with this, as the psychological pain is even worse than the physical.

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