vulva issues

Possibly Lichen Sclerosis. Check the symptoms. It should be monitored by your doctor. Thr Dr. Prescribed... Taro Clobetasol 2 x per week. There is a very informative Facebook support group. Also check on Instagram for specialist in this skin condition Dr Jill Krapf

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!

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.

I finally have an appointment, unfortunately not until June, with a gynecologist who specializes in painful, more unusual vulva problems. Will check for cancellations she may have before then. I'm hoping she will have some answers about this. Doctors are much too quick to diagnosis a condition based on what is most familiar to them. But when 15 minutes is all the time you get with doctors, in todays environment, there's no time for a much more. I was insistent the doctor I saw last month listen to what I was saying. They just don't listen or discount what is being said to them too often. So irritating..

Hi, Thank you for being open about this, it's helpful, and I don't have contact with doctors who want to help. What is the Loratadine? and what is it used for? It seems like youre saying it's an antihistamine. I take oral estrogen and have for 20 years, but don't know about a vaginal estrogen. is it a prescription, and what is it called?
I contracted herpes in the late 70's and haven't had many outbreaks. I can guess when my stress level is high enough to bring it on, like a move across country. But being familiar with the dease doesn't make me sure that's what this first commentor has.
The first time I was told I had vaginal atrophy I told the doc he was sexist, lol. Now I have more information but it is a terrible name. Having atrophy doesn't necessarily mean there is a itching symptom. When I have had itching, or irritation, I have been tested for a infection (not sexually transmitted) and treated with antibiotics. It is hard to get rid of completely and many older women live with a bacterial infection without being treated. That is sad to me, it doesn't have to be tolerated if we can find doctors who will keep looking for answers too.

Are you on estradiol vaginally? A lot of what you describe may be dead cells sloughing off. My discharge requires a pantry liner. And then if you get an additional vaginosis it’s hard to detect. Because it seems your ordinary discharge is a bit more. I use Vagifem twice a week. Kind of pricey but I loath that icky cream.

I finally have an appointment, unfortunately not until June, with a gynecologist who specializes in painful, more unusual vulva problems. Will check for cancellations she may have before then. I'm hoping she will have some answers about this. Doctors are much too quick to diagnosis a condition based on what is most familiar to them. But when 15 minutes is all the time you get with doctors, in todays environment, there's no time for a much more. I was insistent the doctor I saw last month listen to what I was saying. They just don't listen or discount what is being said to them too often. So irritating..

You are so brave, that sounds incredibly painful. So far, I've refused to even have a biopsy, but think that is what I'll be doing next .

Best wishes to you on the next biopsy.

@alju Appreciate your reply and your well wishes!

May I recommend that you request your doctor use a numbing cream BEFORE the pre-biopsy injection to ease the pain of the injection - which for some of us is the only painful part of the very important process?

I'd ask you to verify the actual name, but as I was lying there I heard my kind GYN ask her assistant to get out the "HurriCaine" gel to numb the area. I see that is a name for an oral gel, but whatever the name, the numbing gel is both a psychological and physical balm.

It is over quickly, and communicate with your doctor during the process, as she/he should expect, to gauge how the numbing is going, and making sure you are at minimal discomfort, if any.

I hope this may help, and let us know if you'd like to follow-up with us here to see how it goes. Staying ahead of these things is calming, as is reading reputable sources (*.gov, *.edu sites, and *.org sites that are for professionals in the field).

Hugs, too!