vulva issues

Please consider that this could be lichen sclerosus (LS), a skin condition very little is known about, except that it 'may' have:
- autoimmune aspects, and/or
- Inherited/ genetic traits.
I think if you put my name/"handle" into the Mayo Clinic Connect search bar you may find my prior (& very recent) postings on my now "Vulvar Intrepithelial Neoplasia" (VIN) discovery, which is precancerous, with one possible spot that may be cancerous (another biopsy in a month for that).
Have followed my lichen sclerosus condition for about 40 yrs now, since my 1st gynecologist ID'd it.
Your gynecologist should be able to ID it, either upon exam &/or w/a biopsy. It is mostly found in women, though I've read men can have it too.
It can lead to vulvar cancer, in a minority of cases.
If ID'd as LS, Clobetasol propionate is the ointment most effective to calm it down.
LS is NOT any kind of STD.
Hope this may help you to find the proper medical care for the condition.
Best wishes...

Can you expand on the cysts you referred to? Do they come and go or are they permanent. Are yours painful? My dermotologist said I have cysts under the skin just inside the labia ; mine are very painful. She said it was not part of LS, however, and that in most women they aren't painful. These have only developed within the last year , after I started using the steroids. Two gynecologists were adamant the steriods would not cause this. I took a chart I made listing the 3 steriods I'd used and five possible side effects of the products from mfg. package insert, .. blisters, pimples, skin rash, aceniform eruptions. I would appreciate your reply to the "cyst pain" question?

Yes mine are very painful. But I don't use steroids at all. I have gone back to using my vaginal estrogen and so far so good. We shall see what happens but for right now things are calm and good! But when they do flare up be it herpes or LS the spot and it's almost always in the same spot it feels very much like a cold sore. Toss in urine on an open sore and it's ranks right up there on the pain scale. It also is painful just sitting and it gets rubbed the wrong way etc. For right now this is the first of over 10 days and no symptoms. I want this gone!!!!

That sounds like herpes to me. I am cursed with that too and stress is what triggers it for me. Very painful, especially in the beginning; the Acyclovir ointment I thought helped with the pain; my insurance used to cover but no longer. These bumps or cysts I have now are not HSV. I almost wish they were because those go away eventutally; these appear to be permanent.

You have had years of experience with LS, so can you tell me how long you had to use the Clobetasol before you had any improvement? The majority of women refer to that particular steriod and I know gynecologists always prescribe it too as the gold standard . I never experienced any improvement .

It's wild because right now I have -0- issues but I think I am betting the vagianl (vagifem) estrogen is part of the absence of them. However I have had breast cancer so I really need to ask if this is worth the risk to continue taking them. It's terrible to have this problem and wonder will I ever be able to have sex again? And also the embarrassment of having it and thinking who do you feel comfortable speaking with about it. Thank goodness for these forums where you can be free to speak about things like this without feeling shamed!

Sure. My cysts come and go; I have one that lingers and changes sizes. They can be painful if irritated by my clothing or when they swell up, but it sounds like not as painful as yours.

My gynecologist did tell me cysts like the one I have that lingers is common and can be a response to any kind of “trauma” to the skin. She said there’s not much she knows of that I could do except have it removed, but I decided to observe it to see if it improved, which it did. I’m going to have my dermatologist look at it.

So this sounds similar to what your physician said.

The thing is it’s hard to tell if it is or isn’t caused by steroids. For the fluid-filled type of cyst I just described that I have, I don’t thinks that’s associated with steroids. I thought that acne-like lesions are more associated with steroids and even then it’s more with oral steroids than topicals (I know this because my dad is on long term oral steroids for a different condition).

Even if they are or aren’t related to the steroids or the LS, clearly they’re very painful for you. Were they able to recommend anything to help you with the pain, or do you think it would be better to talk to a dermatologist with experience in vulvar skin conditions? I can understand how it would be frustrating if they’re just saying: “It’s not this thing or the other and usually it’s not painful.” Except you’re you, and they are painful!

@gigipatula. After I was diagnosed with endometrial cancer in 2019 it was recommended that I stop using Estrace. That's a vaginal estrogen formula and although very little is absorbed into the blood stream my doctors wanted me to take no chances. When I started Estrace after menopause it really helped me to try to get back to feeling comfortable again with intercourse. Now I can no longer use it so I use a vaginal moisturizer that is hormone-free and recommended by my radiation oncologist. The recommendation is to use a vaginal moisturizer with hyaluronic acid. Here are my choices:

HyaloGyn (This can only be ordered directly from the company. I like the suppositories).

-- https://hyalogyn.com/

Good Clean Love
-- https://goodcleanlove.com/collections/vaginal-care-collection/products/bionourish%C2%AE-ultra-moisturizing-vaginal-gel-with-hyaluronic-acid-assortment?variant=42220336218296

As I was searching for the above I also ran across this post from Memorial Sloan Kettering Cancer Center that I think is very helpful:

Improving your Vulvovaginal Health:

-- https://www.mskcc.org/cancer-care/patient-education/vaginal-health

I'm in a long term relationship and these changes in our sexual life have been a constant work in progress for both of us. @gigipatula If this a discussion you might have with a new partner in your life then I can understand the difficulty. It could be something to discuss with a mental health therapist so that you can figure out this out.

When do you think you might talk with your doctor about all of this?

Hi! I was advised to use the Clobetasol to manage the LS when it flared up (often related to increased stress levels). I think pretty early on I was also advised - in so many words - there was no cure to remove LS, and the words became clearer after decades with this condition.
Now I am 3-1/2 weeks into recovery from a surgical procedure called "laser ablation (with plasma jet)" to remove the 1st layer of skin in the vulva, due to the diagnosis of "vulvar intraepithelial neoplasia" (VIN II/III), a precancerous condition, with another, slightly deeper biopsy to be taken in < 3 weeks for a more troubling spot, but hopefully not cancerous!
So, in summary, at least from my journey, the Clobetasol propionate 0.05% ointment is for managing, and is not a cure.
Best wishes.

So, LS can lead to vulvar cancer, in a very few cases (< 7 - 9% last I checked), and I may be on my way to that...will see.
BUT, as I have done through my adult life, stay current with your gynecologist appts, be sure you are confident of your Dr.'s knowledge of the latest on these matters, and you should be on a healthy path.
I hope I've been of some help.