← Return to Lichen Sclerosus: Any other women dealing with this disease?

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@murphyt

I just recently noticed some vaginal burning after urinating, so on day 4 decided to take a look. I saw a raw-looking spot on inner labia, so went to women's clinic. The advanced nurse that I saw felt the need to do a biopsy on the spot, even though I had wanted to take a more wait-and-see approach, since it was only day 4. Long story short, I got a call from someone at this clinic who said your biopsy says "lichen." Steroid cream has been called in.

That's it. They hung up. There was no mention of a follow-up appointment to discuss aftercare or anything.

Today is three weeks since the biopsy, and the wound is not fully closed up. I did not have stitches, just the silver nitrate. So, I'm a bit concerned about whether the skin of the wound should have a hole or not. I made myself a follow-up appointment to see the nurse who did the biopsy; couldn't get in with a physician in a timely manner.

So, I have a couple of other concerns. One is that I've been putting the clobetasol cream on the open wound and wonder how it affects the healing process of the actual wound caused by the punch biopsy. Two is that I requested a copy of the pathology report of the biopsy, so I could read it for myself, since the clinic didn't tell me much when they called.

The pathology report says "chronic, lichenoid vulvitis without atypia additional stain for fungal organisms is negative. Sections show a punch biopsy of reactive vulvar squamous mucosa in which there is an intense, lichenoid type chronic inflammatory reaction with an associated spongiotic interface pattern. The chronic inflammatory reaction consistent of plymorphous lymphocytes which dissipate toward the lower aspects of the submucosa. Scattered intraepithelial small lymphocytes are present. There is no obvious squamous atypia or viral cytopathic features. Additional immunostains were performed with appropriate controls. There is a predominance of T-scells do not appear to show an aberrant, phenotype on evaluation of CD3, CD4, CD5, CD7, and cd8. Rare B-cells are noted by CD20. Fungal organisms are not identified on GMS special stain evaluation. The findings are likely nonspecific but exclusion of a possible clinical history of lichen planus is suggested."

It's that last sentence that gets me. Nonspecific????

When this clinic called me, they made no mention of a follow-up appointment to discuss the findings whatsoever. I have since called the clinic to make an appointment to see if my biopsy wound is healing properly, and I plan to ask at this time what is the recommended treatment plan, besides them just phoning in clobetasol cream that says apply twice a day for 2 weeks.

I no longer burn when I pee. And the raw spot I once had, is now a punch biopsy wound, so not sure how the spot would've progressed had it not been punched. Wondering if I should try to find a vulvar specialist or a dermatologist.

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Replies to "I just recently noticed some vaginal burning after urinating, so on day 4 decided to take..."

@murphyt
Welcome to Mayo Connect. I am sure you have read the other comments and realize you are not alone with concerns about Lichen Sclerosus.

I was diagnosed about 4 years ago, and similar to you, they did a punch biopsy to confirm. I am not sure if I ever read the pathology report. Once healed, the biopsy site just looks like a white spot. I am glad you are following up to see if things are healing.

In my case, I will need to use the clobetasol cream long term, not just during a flare up. During a flare up, the provider had me use more often and then once flare up is done I use multiple times a week.

After my initial flare up, I had appointment to recheck in 6 months. Now I see a provider in gynecology once a year to make sure everything looks OK.
It is very important to get the flare up under control and monitor in future so does not get worse.

Definitely ask about ongoing monitoring and maybe make an appointment for 6 months out with provider to recheck.

Yes, my experience is a vulvar specialist is helpful if you can find one. Just to note that lichen planus and lichen schlerosa are not the same disorder. I've had LS for many years and was always treated with chlobetesal, but you will need specific advice on how to use it to minimize risks and how often to be checked for side effects or disorder progression. Some women go into remission and can use alternative vulvar treatments. Hope this happens for you!