question

Hi Arlee, I don't think it is necessary to have a biopsy.I was diagnosed with similar symptoms to yours more than 3years ago I was only referred to a Gyni when I developed a sore which didn't heal. This was removed about 3 weeks ago. The Gyni is fairly sure it is not malignant , I won't go back for the results until February

but am quiteconfident in the result. It is a frustrating disease but reasonably controllable you just settle to getting on with it eventually(not so easy at first).

I use coconut oil with syndicate a weaker steroid which can be used daily once you have graduated from the initial weeks of Clobetasol. Good luck.

Hi there, a biopsy will only tell you what you already know, and that is that you have LS.  Often a biopsy irritates already sensitive skin causing more problems.  Any experienced doctor should be able to give you a visual diagnosis of LS.   Perhaps you are hoping that it isn't LS.   But, you have had your diagnosis and from what you have said it is LS. I know it is hard to come to terms with.

Hi Arlee,

I live in Canada also, in Ottawa. I go to a Vulva Clinic at the Riverside Hospital. They took a swab, which is less invasive than a biopsy, and with that they were able to see that I've have had LS for 5 years which I didn't know. So, look to see if you have a Vulva Clinic in your area. Google Vulva Clinic and your area to see. Once my LS settled down, I still use clob 3 times a week, which I want to reduce eventually, I also take a full bath with 1/4 cup of borax on the alternate 2 days. I am now stable. Hope that helps.

Yes, we're not far, a couple of hours away. It's too bad you don't have a Vulva Clinic, but it looks to me like you're being prescribed the right way. That's how I started. Clob often at first tapering down to 3 times a week. Also, on the alternate 2 days I apply Premarin inside the vagina with an applicator and introitus around the opening and on the labia. That keeps it supple. Yes, I had it for 5 years (no symptoms at all) and discovered it in 2016 when I started to get that awful itch and got the shock of my life when I looked -- the grey/white color, splitting of the skin, etc. A pea-size amount of clobetasol ointment fixed that pretty quick. The Vulva Clinic showed me how and where to apply it. Reading up on it more, I discovered if you soak in a bath of warm water for 20 minutes before applying clob, it softens the tissue and rubbing the clob gently around to a slow count of 10 helps the tissue to absorb the clob. That's to help the clob go as deep as possible where the disease lives. Also, on the alternate days to clob I soak in a bath with 1/4 cup of borax. If you decide to try it, try a very small amount first to find the right amount like maybe 1 tbsp and work up, or try 1/4 cup of baking soda which is milder. I get mine at Metro in the laundry section. I also got a perineal or perin bottle which I fill with 1 tsp baking soda and rinse with that after using the bathroom, pat dry, and then use Emu Oil. I found these Perin bottles at the Shoppers Home Health Care which is usually before Shoppers Drugs. I'll be looking into getting some Hemp oil because it is anti-inflammatory and what we have is an inflammatory disease. I'm also looking into anti-inflammatory food. I just read an article on Brazil nuts being very beneficiary for LS because of the selenium they contain. Unfortunately, I can't show the link here. But if you ask the question with my friend google, you'll find it. Make sure you mention LS with it. I agree that they shouldn't stop taking new patients, but we are at their mercy it looks like. Yes, it is frustrating. In the meantime, don't give up, check with the hospitals to see if they have a Vulva Clinic. It may not be advertised as such in your city. Hope this helps. 

No, the Vulva Clinic only prescribed the Clobetasol and the Premarin. It depends on the doctor. Some will be lenient towards alternative methods, others will not be. I found the borax treatment in this thread on this site, so I thought I'd try it. Right now, I'm trying to combine the two methods, eventually going fully borax and alternative methods. It is a dilemma though because I've heard it said that the use of Clobetasol prevents cancer with a few studies that I've seen, but then it thins the skin, so a minimum pea size amount must be used. Very frustrating when you see different opinions. 

I don't know about the Emuaid. I haven't tried it. When you say success, do you mean no more pain, burning, or itch or unfusing? Except for the itch at the initial discovery which disappeared quickly, I've had no pain or burning. I have had two flare-ups, one from sugar but not for a long time now. And even with those flare-ups I only felt hot down there and red skin but no burning or pain. I have fusing. My labia is half fused and the Vulva Clinic told me it's permanent. I'm trying to see if I can gain success with that. So far, I have not. I also use a dilator. I use it once a week to keep open as I don't want to totally close.