35F. I don’t know what to do anymore. I was visually diagnosed with LS by a derm in March of 2024. Went to vulvar specialist two months later and while she agreed I did have 30 percent labial reabsorption, she said that alone didn’t indicate LS and she didn’t see anything else that did. Told me biopsy was what ultimately decided. I’ve had 3 punch biopsies from different spots and then one perineoplasty surgery large tissue sent to pathology. 2 of the punch biopsies came back as chronic mild inflammation. One was also chronic mild and they did some allergy test that showed it was mixed dermatitis basically but not due to an allergen which my gyno said made the result consistent with eczema. Then a few months later the surgery came back as lichenoid inflammation and the surgeon said it could be LS.

I’m stuck in limbo. I need to know what the hell I have. I need to know if I have a vulvar cancer risk. I don’t want to use potent steroids if I don’t have LS. No one can actually tell me what I have it seems. Derm says LS. Gyno says maybe eczema then confirmed it as so with pathology. But then I ended up with lichenoid inflammation and surgeon is back to possible LS. I have labial reabsorption and I have tearing during intercourse but I don’t have the white patches and I don’t itch and I don’t have the cigarette paper skin.

History: I’ve had a “sensitive” yeast prone vagina/vulva since forever. I’d get random itchy nights as a child and I remember crying because it couldn’t be scratched. It would last overnight and then it would happen months later again. I’ve been tearing during intercourse at the posterior fourchette 6oclock area since 18. It was always like paper cuts and it stung and such but was bearable. It’s gotten worse over the last few years and came to a point where I had to call off sex until I got this figured out. I even got a perineoplasty/partial vulvectomy. Didn’t work $5700 later. I have a history of HPV related vulvar, vaginal wall and cervical precancer. So steroids are terrifying for me to use if I don’t need them. I can’t have sex because of the pain and it’s sore for a week after. Haven’t had a regular sex life since April of last year and it wasn’t really even regular before then. I’ve tried it 3/4 times since and ripped so bad.

I’m scared and my labia seems to still be shrinking.

Every day all day I’m thinking about what is happening to me.

35, F, 5’4”, 180 lbs, dont smoke or drink.

I’ve had HPV CIN 2, VAIN 1 and VIN 1. All removed. Obviously some PTSD from it all.

Went to a dermatologist because I was raw and freaking out thinking it was more HPV stuff and she immediately called LS because I had labial reabsorption. She gave me beta augmented. I never once used it due to the fear of it reactivating latent HPV. Obviously the inflammation never subsided. Gyno said labial transportation alone wasn’t indicative of LS but she did note that I had 30 percent reabsorption. I have no white patches. No cigarette paper skin. Looks like a great healthy vulva really.

I’ve had issues tearing at the posterior fourchette since 18. Always been “sensitive” on the vulva since childhood. Prone to yeast and all that since forever.

I had 3 bunch biopsies that came back as chronic mild inflammation. Gyno said last punch was consistent with eczema. Few months later, large tissue sample (from a perineoplasty to try to fix the tearing during intercourse) said lichenoid inflammation. The surgeon who did the surgery said it could be LS but wasn’t definite.

So I’ve had 4 biopsies, some pretty awful pain wise, and none gave any definite diagnosis. Frustrating is not the word for it.

It’s been a couple years now since any HPV stuff has occurred. Testing negative. HOWEVER of course the inflammation and itching and rawness and tearing is still happening.

It’s very obvious that I need to use steroids. I can’t. I’m terrified of the chance of it reactivating any latent HPV hiding in my skin. (As a side note: I was diagnosed with illness anxiety disorder before the precancer and then afterwards residual PTSD was added on. Surgeon referred me for medical trauma therapy.). Obviously this has been a nightmare for someone with my “phobia”.

The problem is that the only thing that will stop inflammation like that is steroids whether it’s eczema or whether it’s LS. I HATE being in a grey area. It’s worst than the answers because I’m in limbo and really so are my doctors.

What do I do?

Do I use the steroids and hope I don’t get an HPV reactivation and then maybe precancer again? Do I treat it as LS even though it might not be? But then what if it is and I don’t treat it and then get dVIN?

As a side note, I used OTC hydro 1 percent recently and it’s actually made me feel better over the course of 6 days. Gave me almost immediate relief by the morning of the first application.

This is my pathology report that the gyno said was consistent with eczema:

Diagnosis – Part A: Skin, vulva, biopsy
Mild nonspecific chronic inflammation in the dermis associated with mild vascular congestion.
Negative for dysplasia or malignancy.
Comment
Immunohistochemical stain p16 is negative, ruling against high-grade dysplasia.
PAS stain is negative for fungal organisms.
There is a minimal to mild mixed chronic inflammatory infiltrate in the dermis associated with ectatic vessels.
A specific dermatitis is not identified.
Eosinophils are not identified within the infiltrate, ruling against a hypersensitivity reaction.
Clinical correlation is recommended.

This so the pathology that was from the surgery I had a few months later:

Final Diagnosis
A. Vulva, perineal, simple partial vulvectomy:
Lichenoid inflammation and dermal edema (see comment).
 
B. Vulva, left, biopsy:
Mild chronic inflammation involving the subepithelial tissue.
Negative for dysplasia or malignancy.
** **
Attestation:
By this signature, I attest that I have personally formulated the final interpretation expressed in this report and that the above diagnosis is based upon my examination of the slides and/or other material indicated in this report.

Diagnosis Comment
In the perineal excision (part A) the histologic findings are not entirely specific however in the appropriate clinical context this may represent lichen sclerosus. Negative for dysplasia or malignancy. Multiple deeper sections are examined on block B1.