Chronic vaginal itch - bv, yeast, ureaplasma, now lichen scerlosus

Hi Susan -

Yes, she wrote me a script today for a cortisone cream so I can see if that helps. It's crazy this came oit of now where, and i already have herpes too - its a mess

Is it normal to have LS but no white patches? Maybe i should have her do a biopsy to be sure? I guess i'll know soon if the meds work.

I have exhausted all other things it could be or possible treatment. I'm just still not sure bc it doesnt "look" like LS, but i have the symptoms of it.

does anyone with LS also experience a weird feeling, it feels like the inside of my vulva is weeping. It's not sweat, its a slight secreation.

thanks

Thanks Beverly - You can also see my comment below to Patrica for more info on my case. I'm wondering if I have low estrogen as well, I'm really just at a loss!

My story has been crazy - Basically, in Aug of 2017 I had tell tale signs of BV - went in, tested positive for that and treated it. However, I kept having symptoms and then I started having extreme itching and burning externally, but I kept testing negative for BV, Trich, or yeast.

I took probably 10 rounds of different antibiotics in 2018 - non of which helped. Then I started a bunch of different creams, vitamins, probiotics, etc. Nothing helped, still. Although, there were definitely times were it was a bit milder, and then times where it was literally driving me mad. It also wakes me up in my sleep. I had just broken up with a long time boyfriend and then this happened, so I've spent the first 2 years of my 30s dealing with this daily and unwanting to date bc I feel disgusting and horrible. It's severely impacted my mental health and I was having suicidal thoughts in the fall of 2018. I've come to better terms with it now, but I still would like to know exactly what is going on with me. It's just so extremely frustrating.

My current symptom is itching around my clitoris, down the sides of my vulva and then to my anus as well. She said thats the "figure" of LS, but she found no white patches. I'm a bit stumped!

Thanks for listening

Hi Patricia -

I'm so sorry you're in that much pain 😦 It's so awful! Mine isn't quite that bad, it's just extremely itchy at times, and sometimes its pretty mild. I guess I'm just confused because the doctor didn't see any white patches, but my 'figure 8' itching is in line with it. She said she couldn't say it was LS 100% because I don't have the white patching. I think I might ask for a biopsy. I've already ruled out yeast, BV, etc by 3 different gynos. This has been a year and a half of 20+ appointments and so much treatment with little to no relief.

I'm also only 30 years old and this seem to pop up right when I had BV. So I feel like they still might be missing something? I feel more confused than ever! Gonna keep up with the steroid cream and see if it helps! To clarify, my symptoms are all external at the moment - focused around my vulva and down to my anus.

Patricia, I notice that you've seen 3 GYNs...but have you seen a dermatologist.

I just happened to have an appt with my Derm doc last week and mentioned my diagnosis and what the GYN had said. I was amazed at how conversant Derm was with LS...she had had previous patients and had a whole different perspective...from the perspective of "skin" rather than "GYN". She chatted with my GYN and together, they came up with a modified treatment plan. One thing she was adamant about was seeing me every 3 mos...and the other not just using steroid to treat flare-ups...but as a routine. She says the risk of damage from the flare-ups is much greater than the risk of damage from the steroid.

I felt like there were 2 things going on 1) treating LS as a skin disorder and 2) that she has newer education on LS (she's pretty young).

It really might be worth talking to a dermatologist.

Ooops...I meant my reply to "Hannah"...

Snappy, I have been seeing a gyn (vulval skin specialist) and was told to use the steroid as needed (not clob); not to be concerned about using it too often. I have never had a flare up fortunately, but it feels as though there is definitely less of me than there used to be. Over the winter I had what I can only describe as a sort of buzzing feeling on the clitoral hood. Only the steroid keeps it in check.

Will be seeing the doc and the 24th. She is leaving the practice so I am in a panic over that.

Did your dermatologist say there any new meds on the horizon besides steroids? Did you talk supplements or diet with her?

Beverly,

Hi,

1. One of the issues discussed between by GYN and Derm was whether or not to do steroid all the time or only with a flare-up. GYN originally said, only when there is a flare-up. But, Derm said, use a lower power of steroid (Betamethasone), but use it routinely 3 x per week...to avoid flare-ups before they start. She'd be willing to go even lower dose than Beta, once everything is under control.
2. Then based on a comment of another user on another thread on this site, I asked her about using an immunosuppressant (Tacrolimus is the one mentioned by another user on this site). My Derm read some of the research and liked the possibilities of that, so, she's proposing that we spend about 3 -6 mos just with the steroid, then look at reducing the steroid while adding Protopic (immunosuppressant). Interestingly, my husband mentioned that he had had an eczema issue on his face. He couldn't use the normal protocol for that for some reason, so they tried the protopic. He had precisely the reaction that the other poster did with immunosuppressant and LS. Eczema disappeared and never came back...If LS, is in fact, an autoimmune disorder, then an immunosuppressant. The drawback to protopic/tacrolimus is that it does sting when you first put it on...wonder if premed with lidocaine would be ok???
3. One other thing that Derm said is that contrary to your gut feeling, your skin in the ano-genital area is tough...it is made to be resilient. It is made to bounce back...childbirth and all that. It is filled with nerve cells, but it is good skin. I thought that was an interesting concept.

Hi SnappyCat -

Yes! I actually did see a dermotologist (as well as an allergist, GI doctor, literally everyone I could think of) about a month ago. This was prior to the potential LS diagnosis I got yesterday from a UCLA specialist. I could go back and ask him about that diagnosis, good idea!

Yes, she told me to use the steriod cream continuously. At least for a few months, then maybe test not using it until it flares up again.

Again, I'm just trying to figure out if LS is really what it is since I don't have the tell-tale "white patches".

I'll follow up with the Derm again with this LS knowledge. Thank you 😃

Snappy, are you saying someone posted having used the Tacrolimus for LS and it never came back? If so, that is very interesting. I have read about these meds re various autoimmune diseases, but not specifically for LS.

The problem is they can suppress your immune system to a dangerous degree resulting in your body being less resistant to infection in general.. and those infections get will be harder to treat.

Did the dr. say if there any studies being done with these drugs for LS?

There are different categories and quite a long list of them, but I have no idea what their differences are. Tacrolimus is a calcineurin inhibitor (something to do with T cells). Protopic is the topical version of tacrolimus and is used for eczema (not sure if it's used for anything else).

Re that skin bouncing back I believe a lack of estrogen (after menopause) causes atrophy which thins and weakens the skin. That was my issue and hormone cream used regularly restored the area to a degree. However I was told in my case the lack of estrogen brought on my LS, but am not sure if that's factual rather than theory. Using the hormone cream does not impact the LS once you have it.

People present so differently I don't think the absence of white patches means no LS. If you're willing to undergo a biopsy I'm surprised the doc hasn't recommended one. I didn't have one because my gyn was apparently convinced based on a visual exam. I was shocked by the diagnosis as I went to see her because of an internal itch; nothing external.

Hi Beverly -

Yes, I'm shocked too since I've gone to 20+ doctor appointments over this - I would think she would do it! I didn't realize that was an option. I might ask for one to be sure! Thank you ladies, this has been a long weird road!

hannah, is your insurance co willing to cover that many appointments? Even with my my co-pays that would come to thousands, but I'm not sure if my insurance would cover all those appointments unless my GP were referring me to all of them. I've just switched from an HMO to a PPO. Did anyone have a theory or a treatment plan?

The other option would be a Functional Medicine person who would treat you probably via diet and supplements. Have you considered that? I'm in FL now and found a dr here, but he charged $800 for the appt plus $100 a month to be his patient. I passed on that. Thought I might check with an acupuncturist once I'm home.

Hi Beverly!

Yes, I've been very lucky and had no issue with the amount of appointments I had. I have an open access plan via Cigna and it's a great plan that allows a lot of flexibility.

Oh, I'm interested in what an acupuncturist have to offer or would say about this! I definitely should start adjusting my diet for this - sugar is killing me!