Not doing well need support
Posted , 18 users are following.
Diagnosed earlier this year with LS. Haven't had biopsy, very scared about this whole thing. I am using clobetasol but have to use it every day, most of the time twice a day. This summer with heat and humidity, it has now spread down my inner legs about 3 inches, and along the cracks under my butt cheeks, though not up my butt crack. I don't wear underwear at all most of the time now, but even pants irritate though not like the elastic around the legs of underwear. I have to wear underwear after I have a bowl movement, I have hemorrheids and have some leakage. You can imagine what that's like without nderwear so I have to wear them, and that makes it so this never seems to even start to clear up. I haven't had this a whole year yet where is this going to go? am I going to see this spread to my hairline down to my toes? I am going back to gyn this week and I'm having panic attacks about it. I tried using antihistomine to calm down the itching/swelling, lumps like large zits, flaking, tingling, and all the other symptoms which I think you all must be familiar with. It helps but leaves me very sleepy and I can't do that at work. I thought this would be only around my lady parts now it's spreading alot. I don't think I will ever be able to wear a bathing suit, it looks like my crotch and inner thighs are rotting away, and its going onto my butt area. OK now I'm crying. I'm a mess. Will I die from this? What if this is cancer, will I have to get my whole vagina area removed? I think I would rather be dead. I'm 64 and used to enjoy sex. Now I feel like a freak, and whenever I think about it I can't stand it, I'm so scared. I know I'm a big baby. I have read some of the posts in here and I think I will be spending alot of time on this website. The rest of you seem to be doing Ok with this. How do I cope? I'm already on anxiety/depression meds and have been for years. Sorry about rambling on and on about this but I am really scared.
0 likes, 18 replies
anna13939 janet91272
Posted
Hi Janet,
Although my situation is a little different, boy do I feel for you. I don't know if it helps, but I think we all feel fear. And then there's comfort, and things get better, and then worse, and there's fear again. It's a roller coaster.
Right now I came onto this thread also looking for some hope, and apparently writing to you is kind of helping me. I've been diagnosed with LS for a year now, although have had symptoms and had been misdiagnosis for half a year previous. Oh and I'm 21. So that's just peachy.
It's gotten better, and then worse. Luckily I haven't had any indication of fusing but often I will get micro tears all over my vagina from the littlest touches. Right now it feels like there is a knife blade buried under my clitoral hood that slices up my clit every time I move.
But other times, I have sex! And it's amazing! And I cherish what my clitoris can do and how it can feel and sometimes if I'm lucky, it doesn't hurt at all.
I don't know where I'm going with this, but it's nice to share. On the advice side, I HIGHY recommend finding a dermatologist. The gyn I saw put me on clobetasol but it wasn't great for me. I am now on a routine of alternating protopic and amcinonide ointment (a steroid very much like clobetasol but I'm a Vaseline base) and it has worked so much better. When I have little tears I use plain Vaseline throughout the day so that walking is bearable.
Hope some of this helped
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