r/vulvodynia • u/krunisana • 2d ago
Support/Advice 6.5yrs main symptom vulvar burning, skin issue but can't figure out what's the cause? Advice needed
Hello to everyone here!
I’ve been dealing with this for 6.5 years and I’m honestly at my wit’s end. I’m hoping someone here might have a suggestion or has been through something similar, because the doctors I’ve seen are just as confused as I am.
TL;DR I have a skin issue on my vulva, only redness is visible, I feel constant burning and other symptoms, any kind of lichen and eczema ruled out as well as hormonal issues and all STDs, UTIs and candida. Need advice on what to test next and what could it possibly be???
Now the longer version with all the details u need!
My symptoms: Burning: This has been there from the start
Itching: Started about 1.5 years ago, happens out of nowhere usually
Pain: Sex is painful
Burning: Burns when I pee every single time, sometimes burns out of nowhere, any kind of trigger will cause burning(I will list it below)
Raw/sore feeling: Sometimes it feels raw, almost like I’ve wiped myself with a nail file. I only dab with my toilet paper but it doesn't really make a difference.
My main triggers: Anything touching the skin is an issue. I can’t wear tight clothes or underwear at all. Sitting, especially on hard surfaces causes burning (a donut pillow is a lifesaver). Sweating, exercising, going to the pool, or just tap water (I think the chlorine in my city’s water is too harsh) make it worse. PMS also flares everything up significantly. Stimulation is also a trigger, but two years ago it was possible, it’s gotten worse now and it’s literally impossible to have it. When in an active flare burning will last for 8+ hours sometimes.
The only visible sign is redness. Everything else looks completely normal. The redness is always around the clitoral hood—above it and on the sides, never on the inner lips. Because of this, it feels more like a skin issue rather than a typical gynecological one.
Medical history & what I’ve tried: My symptoms follow the pattern of Lichen Sclerosus (LS) perfectly, but the skin looks too "normal" (though I know atypical cases exist). I had a biopsy done, but it only showed "deep infiltrated inflammation" without confirming LS or anything else.
I’ve seen so many specialists, and everyone agrees it’s a skin problem but can't name it. I’ve tried pregabalin, amitriptyline, laser therapy, physical therapy, and countless ointments. Will not bother u with all that information bcs it's too fucking long haha.
The only thing that ever gave me real relief was a specific routine: 3 weeks of corticosteroids followed by 1.5 months of tacrolimus. By the last week, I had a HUGE improvement—for the first time in 6.5 years, there was no redness. But then, I had to stop everything for two weeks for the biopsy, and the symptoms just came right back. From natural and protective ointments aquaphor has been a life saver, CBD balsam, sage tea and St. John's wort oil.
What I’ve ruled out:
Blood work (done many times), hormones, STDs, UTIs, candida, ureaplasma – all negative.
Doctors don’t think it’s eczema, any kind of lichen, or an allergy (though I’m planning to get allergy testing done in the fall). I’m planning to check for insulin resistance soon.
I know I have other treatments yet to try, but I want to find out what the fuck is causing all this? I want to find the root problem, not just treat the symptoms with dangerous drugs... I’m exhausted and I don’t know what else to test for. Does anyone have any ideas? What could this possibly be? Any advice on what to look into or ask my doctor about would be highly appreciated!!
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u/Old_Bat6894 2d ago
Have you considered mast cell activation? That causes such sensitivities to products like you mentioned. A biopsy could show it but they would have needed to do a special stain to test for it. A round of steroids would have reduced symptoms caused by this. Have you tried antihistamines? I believe i have mcas and antihistamines made a huge improvement in my itching.
Where is your pain located exactly?
Could you actually list the ointments you've tried? I don't want to recommend things you've already tried and ruled out.
Do you have a tight pelvic floor?
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u/krunisana 2d ago
I thought about it but every time I would read ab it, it never really seemed like it’s what I have.. tho I’m so desperate for answers I will test anything, I do have migraines and brain fog caused by it so maybe it is happening bcs of MCAs idk
the burning is located next to clitoral hood, on the left and on the right, I think that is labia majora, and it is mostly all the way to the top and it goes a lil bit down, there’s burning and pain on the entrance,
entrance would always burn or hurt, but with physiotherapy we made that like 6x better than it was, and the more I have penetrative sex the less it hurts. So I def have problems with muscles, and I see great progress with physio
however the skin is already the problem, as I told u that upper part of vulva where I have redness, and when I’m in a flare inserting something would cause burning that will progress all the way up literally in seconds and then the whole area will just burn like hell….
as for ointments, it’s hard to list all bcs there’s so many, half of it I already forgot, it is 6.5yrs of using products after all.. and most of it just burns the skin too, it got so sensitive over the years that there’s such a small number of it I can use. for example hyaluronic acid burns so much and everyone is shocked when they hear that.. and also I would find something that works and then over time it would just start to bother the skin, literally overnight it changes and I can never use it again..
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u/Old_Bat6894 2d ago
Personally I think you can have localized mast cell activation, so you don't necessarily need symptoms all around your body to prove you have MCAS. Mast cells can over react for a ton of reasons, including putting chemicals on your vulva. Mast cells release histamines causing itching, tons of inflammatory chemicals, and nerve growth factor. Since you're so sensitive to any topical creams or even water quality, that makes me think the Mast cells are reacting. If you haven't tried antihistamines already, you should, to see if that helps your itching. I take fexofenadine and famotidine (H1 and H2 blockers) bc they don't make me sleepy. I also had to make all of the following product switches: hypoallergenic/fragrance free shampoo, conditioner, body wash, period products, and laundry detergent, bamboo toilet paper, peri bottle after peeing, and no underwear. I also take otc mast cell stabilizers quercetin/bromelain and PEA. As well as anti inflammatory supplements curcumin and omega 3s bc i have swelling.
I got into the habit of taking photos of my vulva to track my swelling, and I noticed that after I got my wisdom teeth removed and was taking 16 ibueprofen per day for 5 days, my swelling and redness was entirely gone. Luckily I got a photo of it! It's definitely not something you can do long term but maybe you could try this just to see if your vulvar swelling can be mediated by a systemic anti inflammatory med? I showed this to my doctor and she wants to put me on an oral corticosteroid or humira since ibueprofen worked so well. I'm going to do a topical steroid first mostly for insurance reasons.
Have you tried estrogen/testosterone cream?
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u/krunisana 2d ago
hmm I didn’t know it can be localized, honestly u r a huge help rn!!! thank u soooooo much! I tried anithistamines, nixar (bilastine) but have to take 2 in the morning and 2 at night to see any results, it helped with itching but burning is still present- tho I used it in combination with tacrolimus which causes burning for 15 days so it could just be from that…. I had to switch to all things u mentioned too haha I even bought the peri bottle recently and love it 🤣
btw I tried estrogen cream and it didnt help
can u tell me how does the test for MCAs look like?
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u/Old_Bat6894 2d ago
The fact that the antihistamines made some level of improvement is a good sign! And suggestive of mcas imo. You could try adding both an H1 and an H2 antihistamine, they work better in combo. I use fexofenadine and famotidine, they dont make me sleepy at all. I think i already mentioned quercetin/bromelain and PEA, but you could also seek a prescription for mast cell stabilizers ketotifen or cromolyn, oral or topical.
I haven't been tested for it but ik they can test for mast cells in biopsies, you just have to ask them to use a special stain so they can see them.
Testosterone is arguably more important for vulvar pain than estrogen, u could consider trying estrogen and testosterone cream. Here's a great research article about it https://www.sciencedirect.com/science/article/pii/S2050116115300106?__cf_chl_rt_tk=luUTbyb3Mf8pykPa7y6GWXIkf7skxszOzDB2gxN3iLQ-1779971412-1.0.1.1-KUdVra5kZ8TLAe8tBZYKdq85kUvqiCO1PdhHM3cWsB4
Also, usually its the base of creams that are irritating, not the medication itself. You can get your prescription creams sent to a compounding pharmacy, and ask the pharmacy for samples of plain bases to try before buying a whole tube of the medication. It's dumb af but most commercial vulvar creams have irritating ingredients in them lol. Personally, the only bases i can tolerate are Hydroxyethylcellulose or methylcellulose gel, with no preservative. It's literally just plant cellulose and water. I ask for them to add lactic acid to ph balance it to 4.5 tho. I like the consistency a lot too, it dries down quick and feels like nothing. If they give it to you and it's too thick you can just request they adjust the formula and make it a bit thinner. I tried every other commercial base out there and I had negative reactions to all of them.
Also ik you mentioned that pt has helped you a lot. A tight pelvic floor can cause swelling and burning bc of the restriction of bloodflow. Do you think your pelvic floor is still tight currently or did you reach a healthy state w it? You could add a topical muscle relaxant baclofen or get pelvic floor botox to help that along.
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u/krunisana 1d ago
I would say I reached a healthy state, however when I’m in stressful situations it tenses up again so I have to pay a visit to physio
thank u so much for finding the time to share all this! it truly means a lot<3 gotten more useful information from u than I did for these 6.5yrs from doctors… I will look into everything, and I hope that u found some peace with ur treatment🫶🏻
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u/Old_Bat6894 2d ago
Also forgot to mention you could also order a juno/evvy test to get a really great comprehensive look too see what's going on with your microbiome, maybe there's an imbalance there that is causing issue!
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u/High_regardz 2d ago
It could be one of your nerves coming from your back or sacrum. Pudendal, genitofemoral or ilioinguinal.
Try estrogen / testosterone cream even if your hormones come back ok.
Test for ureaplasma.
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u/krunisana 2d ago
tried the cream it didn’t help, ureaplasma came back negative multiple times… I already ruled out any kind of nerve problem but I can check again with a different doctor, sometimes that changes things🤷🏼♀️ thanks tho every advice is appreciated
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u/BooFrau 16h ago
Agreed. Just started this miserable journey in post menopause with burning sensation at 6:00 position vag entry. As I have tried and failed most topicals, my MD is doing a pelvic/sacrum MRI as when he offered me a acupressure cushion, my symptoms completely disappeared. In addition, I am fused at L5S1, so it could also be a failure above or below this level. Like everyone else on this forum, I want to ID the source of the problem. In the meantime has anyone had any success with red light (vag wand or mats?). Hang in there vag vixens (NOT victims)!
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u/Bakingsomecake 2d ago edited 2d ago
Your story sounds so similar to mine. Check into hormonal vestibulodynia and neuroproliferative vestibulodynia. Yes, even though you said you ruled out hormones. Most doctors seem to be completely unaware of these conditions, but they're pretty common. If you can, go to a specialist like Dr. Irwin Goldstein. Get the book When Sex Hurts.
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u/krunisana 2d ago
already read the book, am far from america so sadly it’s not possible to visit such doctors :( also we already ruled out anything nerve related, will check the hormones again, thanks
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u/Bakingsomecake 2d ago
Okay got it. I want to help if I can. How did you rule out anything nerve related? Just curious because neuroproliferative vestibulodynia is hard to diagnose and is usually arrived at by exclusion. Also did you check your free testosterone?
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u/krunisana 2d ago
they just dismissed it bcs this started when I was 17 and not since birth (I guess ur born with it?) also I tried many different nerve pain meds and supplements for nerve regeneration which didn’t do anything.. they could be wrong honestly it was hard to find a doc who knows what they’re talking about 😭 but every single one of the specialists I visited (which was a lot, also in 3 diff cities) were sure that skin is the main issue.. I went to physiotherapy and it helped with my muscles so I def had a problem there too, but that treatment truly did wonders, as for my skin well the only thing ever that worked was just corticosteroids and tacrolimus/elidel (but symptoms come back when I stop using them)
I tested testosterone alongside estrogen and progesterone, everything came back normal
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u/Bakingsomecake 2d ago
1) Sounds like they were focused on congenital neuroproliferative vestibulodynia (from birth). However there is also acquired neuroproliferative vestibulodynia. You can acquire it in many ways, but for me (and countless others) it was the medication for treating a yeast infection. (A trigger causes mast cells to release nerve growth factor, which causes you to grow a huge excess of nerves.) You could have this condition - many of us in the sub do. It's kind of hard to diagnose and treat. Please keep that on your radar if you haven't ruled it out yet!
2) Did you check your calculated free testosterone? Most doctors aren't aware so they don't know to check for this. For example, my regular testosterone level comes back as "normal" from the lab, but when you factor in that SHBG binds to a lot of it, it turns out my "free" testosterone is very low. This is actually quite common but again most doctors aren't aware.
Hope this helps. I'm sorry that your specialists haven't been able to help so far. I hear this a lot from people tbh so I'm not surprised. There's just such a lack of expertise in this medical area.
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u/ugaGal1988 2d ago
I used monostat otc 30 yrs ago for yeast. Happened to me. Burned the hell out of my skin. Bakingsomecake is spot on….. RachelRubins group is where i got my treatment. I couldnt see Rachel (bummed) but saw her counterpart. Did not love her sadly…. Regardless the acquired neuroproliferative seems like my diagnosis. I refuse to get the surgery….. im not certain they can cut out enough of the burning tissue….. hope this helps
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u/Bakingsomecake 1d ago
Yep, Irwin Goldstein told me he thinks Monistat in particular is the #1 cause of acquired neuroproliferative vestibulodynia.
Have you tried anything like ketotifen or capsaicin?
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u/ugaGal1988 1d ago
I thought about suing the makers of monostat. They owe me 30 yrs of my life back
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u/Bakingsomecake 1d ago
Yeah I'm in a similar boat. I'm sorry. Hoping you can get some treatment that works now that you have a diagnosis.
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u/ugaGal1988 1d ago
Ive not tried the cap yet. But trying ketotifen. It makes sense it would help as an anti histamine
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u/ugaGal1988 1d ago
Are you better? What is your age? Im 61
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u/Bakingsomecake 1d ago
Topical neuromodulators are working pretty well for me right now. My symptoms aren't insanely bad most of the time, so I think I'm a less extreme case. But I worry that the effect will fade over time and eventually I'll have to get surgery. I'm not sure about the long term. I don't want to say my exact age online but I'm in my 30s.
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u/krunisana 1d ago
hmm it makes sense bcs I treated UTI for almost 3 years, and yeast for a few months, after that I never had any of those again but the symptoms just stayed the same.. I will def test it out thank u for pointing it out!
and I think I tested only for regular testosterone, I had no idea there are others omg, thank you so much
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u/Senior_Software_2452 1d ago
This might sound stupid but pretty natural and can’t hurt even if it doesn’t work. I have a skin issue too (but mine is diagnosed as lichen simplex chronicus) and after adding liquid D3 K2 vitamin to my daily regimen, I noticed my vulva inflammation go down.
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u/ugaGal1988 2d ago
MCAS perhaps. Look into ketotifen clinical trials for this pain. I was prescribed it recently in a compound with estrogen and testosterone. Going really slow with it as it burns me as well. Ugggg.
There is a belief the nerve endings are overgrown with our disorders. Just saw a specialist in DC and they are looking at this treatment. Goldstein ( one of 2 brothers) who wrote a book about these disorders has started a clinical trial on ketotifen Blessings. Hope my info helps