r/vulvodynia • u/cutebunny88 • 19d ago
Support/Advice Itching
Hi everyone,
I have intense itching all around my inner labia and have for over three years. Currently not having any luck with doctors at all. Does anyone have any remedies or OTC meds that could possibly help? I have been using the brand "syren" lidocaine as i am allergic to the good clean love lidocaine. I've also tried a number of other creams like v magic, emu oil, coconut oil, and i feel like any creams just make things more itchy! I've spent so much money on products and at this point i'm just looking for something that works so i can get back to doing some of the things I need to do. Thank you everyone in advance!❤️ Also, I think it may be related to hormones.
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u/Bakingsomecake 19d ago
Which labia, inner or outer?
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u/cutebunny88 19d ago
inner labia, so sorry for not clarifying better!
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u/Bakingsomecake 19d ago
I ask that because irritation/pain with the inner labia can be related to the vestibule, which is a huge clue because vestibulodynia is a common sub-category.
I have hormonally mediated vestibulodynia and neuroproliferative vestibulodynia. But most of my symptoms are from neuroproliferative vestibulodynia.
I have been through all the gynecologists, dermatologists, biopsies, steroid creams, yeast creams, estrogen cream, pelvic floor PT, etc., and it was all trash. The only thing that really helped me was traveling really far and paying a super specialist to get an actual diagnosis and treatment for that specific condition. Which was topical amitriptyline. Still figuring out what my long term treatment situation will be.
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u/cutebunny88 19d ago
Yep, me too. I have done everything and I can't find anyone who will treat me now. I started on the east coast and now am in the midwest having worse luck. I'm so sorry you're experiencing this pain😢
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u/Loose_Classroom3886 19d ago
Have you gone to NSU Florida?
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u/cutebunny88 19d ago
unfortunately it's a bit far though since i'm midwest instead of east coast... i did try the CVVD while i was there and they did not help me
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u/Hot-Minimum7945 18d ago
Has anyone thought this could be Lichen Sclerosis?
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u/cutebunny88 18d ago
at first they insisted that's what it was for like a year and had me on the highest dose of topical steroids it was making things so much worse and then finally i got someone to take a biopsy and they immediately took me off of the steroids because of the biopsy being negative for LS and LP
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u/Fearless-Builder7418 19d ago
Have you tried antihistamines like Zyrtec twice daily and famotidine twice daily as an h2 blocker
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u/cutebunny88 19d ago
hi thank you for your response- i tried claratin as instructed by one doctor but i didn't see a difference. Maybe I should try zyrtec. also, I never knew the famotidine thing. I will have to try and see if it changes anything!!!
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u/Fearless-Builder7418 19d ago
Definitely worth a try it’s the mcas protocol ! Also could consider cromolyn and ketofin. That’s if it’s really to histamine release. Sorry you’re dealing with that though ugh !!
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u/cutebunny88 19d ago
It's okay no worries! Just looking for some suggestions because i feel like ive tried it all! Thank you!!
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u/Fearless-Builder7418 19d ago
Have you seen a vulvar specialist to make sure not a dermatologist issue?
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u/cutebunny88 19d ago
sure have! already have had a biopsy. went to dr andrew goldstein and they couldn't figure out what was wrong with me so they stopped responding to me.
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u/lileina 15d ago
I had the same experience. They’re awful for vulvar itch and anything they view as less straightforward. I would be happy to commiserate or share ideas if it helps lol but no pressure
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u/cutebunny88 15d ago
absolutely! you can dm me if you want :) and yeah basically if your condition is not black and white they want nothing to do with you lol
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u/sweetbaci 19d ago
Also- my dr says there are 4 different allergy meds. Claritin, Allegra, Zyrtec, singulair. Each works for 25% of the population. Try another one. I have vulvodynia and it always flares during allergy season. Dr confirmed she’s super busy at this time with everyone flaring! Last- yes get a compounded Amitryptylene, Gabapentin cream and don’t be afraid to try a low dose antidepressant like Nortriptylene. That was the game changer for me. I was able to come off of it finally. Actually I’m off of pretty much all meds. It has pretty much resolved- just get occasional flares and nip them quickly.
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u/cutebunny88 19d ago
That's amazing! maybe i should try the singular, I take either claratin or zyrtec for seasonal allergies so its possible that it just doesn't touch what I have going on. I tried cymbalta before and it made me really sick, as do some other antidepressants so i'm hoping to kind of steer away from that and go with some other options. Unless i absolutely have to try again! They make me so freaking nauseous!
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u/nubpod23 19d ago
Safflower oil
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u/cutebunny88 19d ago
thank you i'll have to give this a try, for some reason all the oils i've tried that other people use here make the itching ten fold. it's like adding moisture just makes things worse
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u/Serenityph 19d ago
I sometimes get some relief from Gold Bond medicated anti itch powder
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u/cutebunny88 19d ago
i'll have to give it a shot!!
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u/Serenityph 18d ago
Good luck it gives me temporary relief. My theory is the menthol shocks my nerves and confuses them.
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u/nubpod23 19d ago
I strongly advise you try out a histamine-low diet, use, e.g, the SIGHI food lists: HIT > Downloads
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u/islandoceanbeach 18d ago
Hopefully you can get that referral. I feel like the urogynecologist that I saw had way more info and did a more thorough internal exam. I also got a ton of printed info that she went over with me. The right doctor who LISTENS is key!(it took me 5 months to find one after seeing my PCP, 2 nurse practitioners and a gyno)
Also…. Have you tried Hydroxyzine? It’s sort of like benedryl but it helps calm both itching and anxiety. It helped me sleep better when the burning was at its worst. It’s a prescription. Google hydroxyzine for vulvar itching.
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u/cutebunny88 18d ago
I have tried hydroxyzine, which didn't help and made me groggy, then i tried gaba and was up to 900mg with no improvements, again just super out of it and tired. Then they suggested cymbalta, tried that and it made me sick. Then they figured they'd focus on my back issue to see if it would help, I had an ESI and also tried tramadol for pain, esi made pain worse and i can't take opiates they make me puke!! Even with anti nausea it made me feel so icky. I see people have mentioned amitriptyline, which is one i haven't tried yet so maybe that's what they'll decide to do next?
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u/islandoceanbeach 18d ago
It’s frustrating when you’ve tried so many things! Yes to the grogginess here too. Sleep was so difficult as was sitting. I did get a cushion off of Amazon that helps if I’m going to be sitting for long periods of time. I really hope you can find the answer & ways to deal with it that work soon! I don’t know what mine suddenly stopped but as mentioned I’m doing vitamins, PF phys therapy, vaginal compounded estrogen(Estridol caused burning), and seeing urogynecologist. May be a combo of all the above. Also no alcohol, soft drinks and trying to cut out sweet snacks. It’s been exhausting!! I wish you luck and hope someone can help you unlock the source of your discomfort. I have read about ppl going to see a neurologist….
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u/cutebunny88 18d ago
Thank you so much. I have heard about the neuro route and it might be something i'll have to do. I do have a cushion too and it does help with sitting!! And i did estrogen for a bit but again did not help my symptoms. So im not really even sure what the cause of all of this is. Luckily dont drink but gonna miss my pb balls, lol!!
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u/Loose_Classroom3886 19d ago
Have your doctor call in a prescription of Ketotifen oral compound capsules. I started with 3mg at night and now at 6mg. I don't where u live. But I use apothecary options in Chico Ca
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u/cutebunny88 19d ago
Thank you. I'll have to speak with her. She's only my PCP but is aware of what's going on. I can't find a specialist to treat me
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u/Thedollysmama 19d ago
Who’s your gynecologist? Or dermatologist? I go to Enloe women’s health and my gyno referred me out to UCSF because she’s not comfortable dealing with vulvodynia. I’d love to not have to drive to the city
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u/cutebunny88 19d ago
currently i don't have anyone. I just moved, and i also got married and am on new insurance that's questionable at best because i have to get referrals from a PCP to do literally anything at all! I'm waiting for responses from a gyno and I also have back issues that they think could or could not be related to some of the pelvic pain i'm having (although i'm just currently concerned about the itching.)
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u/Loose_Classroom3886 19d ago
How old are you? That is very important to know
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u/Loose_Classroom3886 19d ago
Ok, just checking it is not post menopause. My gynecologist is in Exeter Ca. However it was prescribed initially by a dr at Stanford, as I was treated for CFS, but ignored my mcas workup, but did prescribe Ketotifen, I had stopped it work an allergy test, then horrible uncontrollable itching. I was able to have my local gyn prescribe it, She is gone, and my PMD does it. But pharmacist label.
It as mcas stabilizer and antihistamine. I take oral capsules. I am fortunate to be a nurse and have that ability to teach docs to prescribe medications that are compounded.1
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u/Loose_Classroom3886 19d ago
OTC meds will not help
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u/cutebunny88 19d ago
I'm not looking for something that's long term. I'm looking for someone to treat me but in the meantime i'd like to be a little less uncomfortable...
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u/ZZZRiSaysHi 19d ago
hey, itching like that for that long sounds like absolute torture I’m so sorry :( i know how it goes and you are not alone. do you scratch, or rub at all?
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u/cutebunny88 19d ago
I try not to scratch or rub because it just makes it worse. I've had a biopsy that came back inconclusive. When this all started they had me on a heavy dose of steroids for suspected LS because that seems to be the diagnosis they throw around for itching. Well i don't have LS and probably shouldn't have been using steroids. Not sure if it ended up making things worse. With everything i've learned in the past few years, I have a feeling it may be hormonally related, but it's really hard to get doctors to listen and take you seriously. Every appointment i leave disappointed
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u/Traditional_Sky_9064 19d ago
Do you have any other symptoms or new symptoms after the itching? Might wanna try yeast infection cream if you haven't ON the skin bc it's possible to take a med for it and it do nothing or very little for the skin sometimes!
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u/cutebunny88 19d ago
it's been going on for three years so unfortunately not a yeast infection but thank you!!
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u/Traditional_Sky_9064 17d ago
I was just saying because I've burning for 6 years and half of it was a yeast infection that wasn't cured with oral meds is all! Right now I'm trying a cream for a different disorder but the topical helped with irritation from the yeast.
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u/cutebunny88 17d ago
Damn that's crazy! Unfortunately I don't think that's the case for me but i'm glad you were able to figure it out!!
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u/cutebunny88 17d ago
the itching that i'm having and the itching i've experienced with yeast infections are very different, which is why i suspect it's probably not that
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u/cutebunny88 19d ago
thank you everyone for all of your responses!! I truly appreciate everyone taking the time to help me
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u/Serenityph 19d ago
Long shot but have you tested for ureaplasma
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u/cutebunny88 19d ago
No, it has never been mentioned to me or discussed by anyone i've seen before
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u/Serenityph 18d ago
Oh I can give you a fact sheet. It's worth ruling out. It is a sexually transmitted bacteria that requires a PCR test to detect. There are 4 strains. When you do a deep dive it's surprising how many women have it. A killer itch with no visible skin changes is a common symptom. But of course it's just something to test and your case may have nothing to do with it. And or you can have more than one thing going on.
I have had Ureaplasma but I also have an itch from a couple of dermal issues.
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u/cutebunny88 19d ago
unfortunately i'm having trouble finding a doctor willing to do anything at all. I've been through countless gynos and vulvar specialists with no luck. Now am stuck waiting for places to call me back but it doesn't seem likely and i'm also not sure what specifically if anything they will be able to do for me since most places have turned me away at this point due to providers being frustrated with not being able to give me any info/figure things out for me. Hoping for the best but at this point I feel like I'm going to have to figure something out with no doctors. I can't keep living like this
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u/thidwickmoose 19d ago
Itching is my primary symptom. It’s awful. I’ve had the best luck with pelvic floor PT. Mine seems to be caused by pudendal neuralgia.
For topical things to help with just symptom relief, my gynodermatologist prescribed me Tacrolimus, Estrogen, and a numbing cream with lidocaine, ketamine, gabapentin and Amitriptyline.
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u/cutebunny88 19d ago
Mine as well. It drives me absolutely up a wall. I did do pelvic floor PT and that helped with the pain (these doctors literally know nothing, one thinks my back is connected to my vaginal pain, one doesn't, other one says it's not possible, one wouldn't treat me until i had back surgery. it's a mess). But the itching seemed to continue during and after PT for me. Three years ago the itching was a lot worse. Or maybe i've just come to tolerate it more i'm not sure haha. I'm hoping i can get in with someone soon to be able to prescribe me medications and truly try to help me get some relief. I'll keep this in mind!
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u/thidwickmoose 19d ago
One other thing I forgot, is that my dermatologist has me use Vanicream shampoo/conditioner and body wash. I could use different shampoo/conditioner, but not if I was using those products in the shower as she didn’t want anything with scents, additives etc on any vulvar skin.
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u/cutebunny88 19d ago
already have been doing that since the beginning. I was also tested for allergies and have heavily avoided fragrance/allergens with no change unfortunately :( Also not sure if you enjoy the vanicream shampoo but i wish i could use something else!! Lol
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u/CoolkiddoK210 19d ago
Hey! You should do a pcr test to rule out any type of yeast infections and BV infections , STDs, ureoplasma and mycoplasma (if you have not done it yet ofc) and based on your result if you positive on something to ask for a sensitivity test to check which medicines are responsive. Do not try to take medicine randomly as this can cause irritation or extra problems.
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u/cutebunny88 19d ago
I have already ruled out bv, yeast, stds and stis, the only thing i haven't heard/ been asked about was the ureoplasma and mycoplasma so im definitely going to be mentioning that to someone! but based on some of the research i did about it this morning my symptoms don't really line up with ureoplasma :/
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u/CoolkiddoK210 19d ago
That’s good that you did the tests. You should definitely rule out ureoplasma and mycoplasma just to be sure it’s something else.
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u/CoolkiddoK210 19d ago
It cause itchiness like a yeast infection not just in the urethra
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u/cutebunny88 19d ago
i've had quite a few yeast infections throughout the years and have also had one during this whole ordeal and it's a totally different type of itching sensation for some reason! this itching that i have going on doesn't feel like a yeast infection to me!! totally still going to check on that
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u/CoolkiddoK210 19d ago
Many infections mean also many medicines so that maybe has made your nerves sensitive. If you get tested negative to ureoplasma for example could be this. Pelvic floor therapy helps
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u/cutebunny88 19d ago
like i have no urinary symptoms whatsoever, urethra is not itchy, just pelvic pain/discomfort and itching on labia minora. Pelvic pain may be coming from slipped disks in my back but i haven't gotten any answers really. Still definitely going to look into this though since you're the second person who mentioned it
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u/cutebunny88 19d ago
at one point one doctor mentioned possible cytolitic vaginosis but then told me there's no treatment and she can't help me lol
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u/Zuzubaby410 19d ago
What state in the midwest? I might know a doctor for you
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u/cutebunny88 19d ago
Oklahoma!! That would be amazing. If worst comes to worst i'll eventually be able to travel out of state to get care. just currently looking for something that's close
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u/No_Dawn_No_Day 19d ago
Could it be possible you have some kind of fungal infection? Have you had a biopsy done or taken a micro biome test?
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u/cutebunny88 19d ago
yes to biopsy and yes to tests i have been tested for everything and was negative except ureaplasma which two people did mention and I will be looking into getting tested for it
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u/cutebunny88 19d ago
nobody has ever said anything about ureaplasma being a possibility to me yet so it's worth a shot
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u/islandoceanbeach 18d ago
Have you seen a urogynecologist who specializes in Pelvic Floor? I have found that extremely helpful along with compounded vaginal estrogen cream. I also added magnesium, B complex, a vaginal probiotic and vitamin D to my supplements daily. After 5 months of horrible burning in the vestibule and pelvic clenching and heaviness I am symptom free for the last week. I’m also three weeks into pelvic floor PT.
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u/cutebunny88 18d ago
I've tried pelvic floor PT and unfortunately I did not see any improvements with pain or itching but I did feel like I was a bit less tight. The therapist I was seeing was lovely and she basically told me until I have a proper diagnosis I can't get any further in terms of seeing results from therapy :( i am planning on going back though, as i did feel like it helped with the tightness but i wish it helped with the pain and itching
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u/islandoceanbeach 18d ago
Also, a pelvic floor urogynecologist can provide Botox injections which can help some people. I had my bladder checked and also my exam Found that I have a stage 1 vaginal Prolapse. My regular gyno and PCP did not fund or feel Anything during an internal exam but this specialist did. I finally feel like I’m getting somewhere. I hope you get to someone who can find out the source of your pain/discomfort🙏
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u/cutebunny88 18d ago
thank you so much, i'll have to see if it's possible to visit that type of specialist with my insurance/ if they even let me freaking get in. Been waiting for a gynecologist for three months now. And that's just a regular one not even a specialist
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u/islandoceanbeach 18d ago
See if your PCP can refer you that way ins should pay for it. Getting to the right specialist is key.
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u/cutebunny88 18d ago
she definitely can but i've been waiting on a gyno referral for 3mo and another for about 2 so it just takes a really long time and im not sure when ill get in
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u/cutebunny88 18d ago
well maybe it might have to come from the gyno actually since it's a specialist in that department it may have to come from a regular gyno and not PCP i'll have to check
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u/Dtcamanpushp002 18d ago
Glad you finally found relief. Crazy how often people get dismissed.
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u/cutebunny88 18d ago
Yeah it definitely sucks waiting :/ I just wish i had a diagnosis is all, but yeah being turned away is just what i expect going to these appointments now
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u/Best-Buddy1086 18d ago
If creams keep making it worse, your skin might just be super irritated right now. Since you think hormones could be involved, maybe ask for hormone testing or even a skin swab if they haven’t checked already. I know a few people who started using Happy V probiotics while trying to calm recurring irritation and imbalance issues. Really hope you finally find something that gives you relief soon.
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u/GIGIBates 18d ago
This may be way off the mark but ....I have a rare autoimmune disease called lichen planus. I had horrible symptoms for the first 18 months and then they stopped. This included chronic vulvar itching internal and external They only thing that helped me was sitting on an ice pac. Then the disease went dormant for 12 years UNTIL I was given steroids for back pain which caused psychoses,vulvar itcing hair loss GI symptoms (For six months) THEN.... I was given Gabapenton 300 mm three times a day plus diculfinac for knee pain and my symptoms kicked in AGAIN (for five months) All my tests were negative. Then my OB/GYN NP suggessted I have drug indiced licehn planus. When I did my research every thing I took to relieve my symptoms were causing it!! I manage my symptoms now by scrutenizing every thing I take instead of hoping it will help me I can avoid taking harmful meds and creams. Lichen planus can be diagnosed with a punch biopsy. It was very confusing at first beacause culpret drugs drugs affected me for months...not days. An autimmune disease often attacks mucous membranes and may be part of your diagnosis?? KI am now symptom free.
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u/cutebunny88 18d ago
unfortunately I've had a biopsy, and it was negative for lichen sclerosis and lichen planus :(
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u/GIGIBates 18d ago
How frustrating that so many women have to deal with these "mystery diseases" Have you tried sitting on something cold?
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u/cutebunny88 18d ago
I know right!! Biopsy just came back as "showing irritation" but nothing conclusive.. i actually do use peri cold packs and they help sometimes!! i also tried baking soda baths but again not really much of a difference, it's like it doesn't wanna be bothered!
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u/Hot-Minimum7945 18d ago
I’m trying to get into an oncology gynecologist. Was told I might have what looks like Lichen Scoliosis from gynecologist. If you’ve only had 1 biopsy for Lichen that was negative I would have a second one. This is what it sounds like. I’m scheduled for a second biopsy June 3rd.
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u/cutebunny88 18d ago
Yes biopsy was negative and i don't have any appearance of changing skin or anything like that. Even when im itching, there's no redness or irritation.. I will have to see if they'll redo the biopsy, but it was done by what is supposed to be a well known and prominent LS clinic.
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u/Hot-Minimum7945 18d ago
My rule of thumb is 2nd opinions even on biopsy. I have an ulcer growing on the left. I chose a Vanderbilt graduate who only took off the top of the ulcer which was dead skin. Lichens was ruled out. Lol went to 2nd opinion and this Dr. took a picture and showed me the signs of Lichens which she said I now have. Looking for an Oncologist gynecologist to do the biopsy to remove all of the sore. This is after 11 months of itching redness and a sore that showed up 8 weeks ago. Sorry you have to go through this. You must persevere and get a diagnosis.
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u/cutebunny88 18d ago
I completely agree! it was hard enough to get the first biopsy, and with them telling me I have absolutely no skin signs reassured me that the biopsy was correct on being negative. Also, at the beginning they thought it was LS before a biopsy and had me on clobetasol which made things so much worse and i feel like it damaged my skin even more. That's another reason i thought the first biopsy was correct, because the treatments they were giving me for LS were not working
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u/Hot-Minimum7945 18d ago
Please schedule another biopsy. The Lichens has been untreated for 11 months and the ER doctor told me (I thank God for her) that the sore can be vulvar cancer. I will find out soon. The stories I’m hearing are so sad. NEVER give up on finding a diagnosis. The mental strain of not knowing is what takes us down. Face the giant and don’t stop till you have an answer. 🥰
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u/cutebunny88 18d ago
although i'm highly doubting its lichen since i have 0 skin changes or skin symptoms, and when they did treat me for LS it made things worse, ill still try to get another. I kind of have a feeling it may take more time.
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u/cutebunny88 18d ago
and this all started with me getting the birth control nexplanon i've always heavily suspected hormonal but again having trouble getting doctors to listen!!
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u/cutebunny88 18d ago
the biopsy was negative for LS and LP but not positive for anything either.. all the results said were "irritation of the vulvar skin" meaning it's irritated but they have no idea why
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u/moodywrites 19d ago
I use honey pot anti itch spray and water wipes together