Lichen Sclerosus: Any other women dealing with this disease?

Hi,

A couple of questions popped into my mind last night and wondered if you use green tea (bags) and infuse for 5 mins, let it cool and use some of this to mix with the Neem Oil? or do you use green tea extract powder? Also in the morning do you shower off the neem oil & green tea that you applied the night before, or do you leave it and shower that evening and reapply ? Sorry for all the questions but I find the 'routine' the most important in anything I have tried so far. Thanks again for your support, I really appreciate it.

Hello,

I use Green Tea Extract, no alcohol. I leave it on for 24 to 48 hrs. Then wash and reapply. It’s helpful to have a routine that suits you. No worries …I sincerely hope it help you.

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.

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.

I have had lichen for around 50 years.
A number of years ago. I had a major flare. The doctor I saw told me to start using cotton toilet paper. It help me.
Just a thought.
Wish you the best.