lichen planus/sclerosus nightmare!

**lafemelle** · 04-24-2010 04:29 AM

To follow up on the endless posts I have created regarding my chronic symptoms, the most recent "diagnosis" is that I have lichen sclerosus, or possibly lichen planus since I have a horrible vaginal discharge as well as redness and irritation.

My doctor prescribed an immunosuppressant cream and after a week of using it, my symptoms significantly worsened so I have to call him next week to have him refer me to a specialist he's worked with.

What I'm hoping to find is anyone who has ever had or is educated on lichen planus or lichen sclerosus. The first line of treatment for these conditions is usually a corticosteroid...and what I'm wondering is how long the corticosteroid usually takes to make a significant difference in the symptoms of either of these conditions. I ask because earlier this year a different doctor put me on a corticosteroid treatment, and after 3 weeks of using it I felt it *may* have been working, although it wasn't a noticeable enough difference for me to be sure or not, so I stopped using it. I'm wondering if I would have continued using it longer than those 3 weeks if my symptoms may have began to improve more noticeably.

If anyone has any knowledge or experience on dealing with these conditions, please let me know anything you can...I'm at the point of desperation in a 2-year battle in which I'm slowly losing the will to keep fighting.

**Sarah001** · 04-24-2010 01:29 PM

Hi there, I have problems of extreme soreness that the doctors think might turn out to be one of the lichens but at this stage they haven't tested me yet. Have you had a biopsy done to get a definite diagnosis? That's my next step as far as I know and it has to be with a dermatologist who specialises in the genital area so if you haven't had one you need one.

The steroid cream can take 6 weeks to make a noticeable difference and has to be a strong one so normal 1% won't cut it. After 3 months of using it twice a day they drop you down to a couple of times a week for maintenance. I've read alot about the subject and there's several women online who mention wheatgrass cream has worked pretty well for them so perhaps that might be worth a try? Lichen sclerosus and planus are sometimes related to the immune system being overactive and sometimes not so I suppose the immunosupressant treatment will only work if it is. I haven't read anything about it being associated with excessive discharge though.

It's so distressing having these kinds of symptoms so I understand why you feel so down about it but if you haven't got a definite diagnosis yet that would be the place to start.

**lafemelle** · 04-24-2010 09:39 PM

The excessive discharge is a common symptom of lichen planus (but not sclerosus). I have had a biopsy done--I was diagnosed with VIN1, but it was the results of the biopsy that made my doctor prescribe the corticosteroid, because she believed (based on what she saw) it was a dermatological problem I'm experiencing rather than any kind of any infection or imbalance. I have begun seeing a new doctor who agrees with this prognosis. The corticosteroid I was given is only a 1% though, so maybe if I go ahead and see this specialist I can discuss that more with her and see if I should give it another go or try a stronger one altogether.

Thanks for the response, I am glad to hear that it could take several weeks on the steroid cream--makes me have a little more hope that if I can manage to have a little more patience there might still be something that will help...