I use steroid (tried both Dermovate and Elecon), I use Ovestin, I use Barrier creams and Vaseline, I wear baggy pants and cotton underwear, and I feel absolutely no relief. I am always uncomfortable, always burning. 24/7... I feel so hopeless. Will this ever get better? What else can I do to feel some kind of relief? because this is driving me crazy
I’m officially running out of answers for chronic vulvar + mouth pain and inflammation. Has anyone experienced something like this?
I’m posting because I’ve been dealing with chronic vulvar pain and inflammation for 5 years, along with recurring inflammation/ulcers in my mouth, and I genuinely don’t know where to go from here.
I got these symptoms when I was 28 and I have IBD, but it is currently well controlled, and my doctors don’t think the severity of my vulvar pain can simply be explained by an active GI flare.
My vulvar symptoms include:
Chronic daily burning/pain, often around 5–7/10
Skin peeling/sloughing/tearing
Small raw areas/divots that sometimes have white edges
Occasional ulcer-like lesions
Pain that can persist even when there are few visible lesions
Severe pain after even minor friction/trauma
I also get recurrent mouth ulcers and areas of painful/inflamed oral mucosa
I’ve had 2 vulvar biopsies and 1 biopsy in my mouth with active inflammation, and none have shown lichen sclerosus or another specific lichenoid disorder. The pathology has essentially shown nonspecific/general inflammation.
I’ve also been evaluated by multiple gynecologists and dermatology specialists. At different points, possibilities like IBD-related vulvar inflammation, erosive lichen planus, Behçet’s, and neuropathic pain have been considered, but nothing has really explained the whole picture.
Things I’ve tried
I feel like I’ve tried an enormous number of approaches at this point, including:
Multiple nerve-pain medications/neuropathic pain treatments
Topical lidocaine (which actually made the burning worse), ketamine/amitryptaline/cromolyn ointment
Tacrolimus
Oral ketotifen and cromolyn
Oral amitriptyline, pregabalin, JourvanX, gabapentin, sprovato all for pain
Hormonal/estrogen treatment and testosterone
Pelvic floor physical therapy
Baclofen
Colchicine for several months
5 different types of topical steroids
Opzelura
Dupixent
IBD medications and getting my underlying IBD under control
Dermatology and gynecology evaluations
Multiple biopsies
Anti inflammatory diet
Supplements
Despite all of this, the chronic pain never goes away, and I still periodically get episodes of ulceration, tearing, peeling, and significant inflammation.
The impact on my life has been huge. I haven’t had sex in about 3 years. It isn’t just that intercourse is uncomfortable — my baseline pain and the fear of triggering another severe flare have made sexual intimacy feel essentially impossible.
What makes this especially frustrating is that I can have significant pain even when testing doesn’t show a clear disease process, while at other times I have very obvious visible inflammation/skin damage.
I’m wondering if anyone here has experienced something similar — particularly:
Vulvar ulcers/tearing with biopsies that did not show lichen
Both vulvar AND oral mucosal inflammation
IBD-associated vulvar/oral inflammation despite the IBD being controlled
A combination of inflammatory and neuropathic pain
Severe vulvar pain that persists after the visible inflammation improves
A diagnosis that took years or multiple specialists to figure out
A doctor/specialist who was actually able to connect the dots
At this point I’m open to ideas I haven’t considered, because I’m honestly exhausted and feel like I’ve reached the end of the road with the usual approaches.
I’m following the doctor’s instructions for my suspected LS with the steroid protocol and am on day 17 having restarted a few weeks ago. My symptoms are mostly burning. I was feeling a lot better but made myself worse again because I took a long nature walk. I’d love to be able to take long walks again without making the burning worse. Is there a good lubricant for exercise/long walks? I’m terrified of using anything that will make things worse. Will lubricant even help? Should I hold off on walks and exercise until I finally get into remission?
I just started using clobetasol cream a few days ago, 2x per day. After the first application I started feeling better overall, like I could stand without the itching or burning for the first time in months. But as I’ve used it more times, I’ve been getting more and more burning/itching pain right after application that lasts like 30 minutes or so. This last time it was as bad as I’ve ever felt down there!
Does the post-application discomfort go away? I haven’t been scratching so I don’t think there’s new broken skin to sting. Should I ask to try a different steroid? or an ointment? or a different medication?
DISCLAIMER: not medical advice. See your provider!!
It’s been one week since I saw my PCP after 6 months of debilitating and worsening symptoms. After examining me, she told me it looked like dermatitis from the steroid NOT the disease worsening. She advised me to only use the steroid on my one white patch by my clitoris and NOT to use it everywhere else. After one week, I feel literally 100x better. My one LS spot still itches, but the redness, chafing, and BUMPS everywhere else is gone. I CAN WALK AGAIN!! She told me that the steroid is highly effective on LS skin, but my healthy skin does not tolerate it one bit. I can’t describe the relief I have after 6 months of debilitating symptoms that got worse and worse over time. Once again, not giving anyone medical advice, but if your symptoms are not improving after months of treatment, see your doctor.
Hi! Can I hear about your anal symptoms please. I have suspected LS in the vulva area (symptoms dating WAYYYYYY, WAY back blamed on yeast always) and now the anus has decided to tag along. Issue is, I had two vulva biopsies in a place that was irritated right inside the opening in the front. I do not know the technical term right there. Both came back negative for LS and positive for a type of dermatitis which flared INSANELY after using a steroid for suspected LS. I am having such a hard time finding a treatment that doesn't make me worse. Derm #1, I have 2 and the second is my friend, says I visually look very much to have LS due to atrophy and scarring.
Anywho, my anus started getting funky in spring/summer and never has before. I have internal hemorrhoids and I know those symptoms well. This is different. I was starting to feel "swollen" and having to manually separate my cheeks when I would have gas. Hard stools were making me bleed and tear slightly. Pooping was NOT fun but it wasn't severe as fissures I would read about either.
All of a sudden in July, I got random stinging pains like someone was pouring gasoline on a cut at the anal entrance. Then add in BAD burning in August. I only had a little itchiness once; burning has been the main symptom. The past month has been awful in the rear. I saw a colorectal surgeon the other week who told me I look ANGRY in there. She'll put me under Friday to take a biopsy and fix my hemorrhoids plus a skin tag. Not sure it's a good idea other than the biopsy as I don't wanted any extra issues so debating that part.
I am nervous about what to treat it with because I got this awful dermatitis from the Clob and Tac. Ugh.
My original question, before going on a rant, was what anus symptoms you have. I am mostly having burning and the stinging feeling of alcohol being pouring on me around the rim which brings a sharp sting along. I feel raw and rash like. The doctor prescribed an oral steroid that did nada. Other possibility is just dermatitis there but after this long? Hmmmm. Wouldn't the LS has settled by now if just a flare? Hmmm. Vaseline may soothe slightly but isn't helping the major issues. Any help is appreciated! Thank you! :)
I started betamethasone 0.1% two weeks ago for suspected lichen sclerosis. Overall my symptoms are improving with the ointment - less itching and fissures. My skin also seems less swollen and puffy. However, the white patches seem to be getting worse - is this apart of the healing process or could the inflammation have been hiding the white patches?
23F and diagnosed a couple months ago. I have been using clob and following the standard routine.
I recently left my partner of 3.5 years, which was challenging. I am currently seeing someone new.
This is my first experience having sex with LS. I am a hypersexual person. Sex is important to me, to say the least.
The first couple of times were fine, although I noticed some pain in certain positions. The next time I had some bleeding. Last time, I had some internal pain that took some time to recover from.
Is this from LS? This has not been a problem for me in the past. I feel so insecure. Ashamed. And most of all, depressed. To be blunt, sex is really one of the only things that gives me dopamine.
Is it just like this forever?
Has anyone else experienced this before I wonder if it’s due to LS and if there’s anything I can do about it. Sometimes when I go pee after that my vulva especially the area around my urethra is irritated. It’s a very weird feeling I had since aaaages, it’s not really burning or hurting but it just feels veryyy uncomfortable, like I just want to hide myself it’s so weird. Has anyone else experienced this before, I believe it’s from my LS. Clob sadly is not helping with that :///
hi there - has any woman ever experienced tsw after applying topical steriods down there? I used a medium potency for 1 month and then stopped suddenly back in March after having a bad yeast infection (i was not educated or informed by my doctor about how to taper properly). if so - what were your symptoms and how long did it take you to recover? I'm now in month 7 and it started off really intense with itching and burning, now the itching and burning is not always bad, but sometimes it flares and it gives me nerve pain in my legs also.
Thanks for any advice/thoughts as looking for reassurance!
When I had my initial consultation with my doctor, the first question she asked me was whether I’d noticed any spots in my mouth. I know it can also appear on your legs and chest, but how likely is it to spread to other areas, or does it usually stay contained to one area?
Getting it in your mouth sounds like a whole other level of hell. Its not like you can put ointment in your mouth