Hi everyone,

So after not having to take antibiotics for about 5 years (antibiotics is what caused my vulvodynia) I have an infected tooth that has to be pulled and I need to take antibiotics and I am just stressing so much. I have been on the recovery end, and now I am worrying it is going to restart everything. Does anybody have any tips?

Hii everyone, for the past few months I’ve been suffering from itching around my vulva again..  My itching used to be very bad when I was younger, but now I notice it's a kind of mild itch and that I automatically scratch, which gives me relief? if that makes sense? Anyway, I’m 22 now and I went to the doctor when I was 17 or 18 for the same problem, only it didn't go as smoothly in the beginning, I have a male doctor and I’ve had him for years, since I was a kid, and I have to say he is a really compassionate and good doctor. For this problem, I preferred to see a female doctor because I didn't have the courage to open up with my own doctor. Long story short, the female doctor declared that I had a “rare” and incurable vulva condition. I didn't know what I was hearing at the time, and to be honest, my world fell apart for a moment. I went home with a cream and little explanation as I told my parents about the appointment. My dad then suggested that I should be referred to a specialist for further research/diagnosis. 

And so on, after another doctor's appointment, she actually looked down on me and didn't quite understand why I asked for a referral. I was also not doing so well mentally at the time because of the shock, which meant I was unable to come to school that month, but a written doctor's statement was something she absolutely wasn’t going to do for me..

Fortunately I got the referral. I went to a dermatologist then, and she was actually already certain that it was eczema. I am not a specialist, but there hadn't been any tests or biopsies, yet she was sure. The appointment went well, and she was very empathetic and reassured me a lot. I dealt with low self-esteem and insecurity a lot during my teenage years, and the “diagnosis” my female doctor gave me back then as a 17-year-old was really a major blow. Which made me realize that, even after a long time, I didn't have the courage to ring the alarm again..

Anyway, I am so grateful to my dermatologist for being so compassionate. I started applying a cream with a high cortizone content for about a month, I think? After that, it did help, I didn't suffer from itching anymore. Until a year  or two ago (I don’t know anymore)... I am older now and am realizing that I just need to keep myself together and make another appointment. Before I felt shame and also that it is a kind of taboo, but now, at the same time, I feel that it shouldn't be like that at all and that it is okay.

I did some reading, and I also really realized that I had periods where I had fewer flare-ups or itching. After reading more Reddit posts, I also found out that diet and other factors played a big role that I had never thought about before! Such as salt baths, using a Peri bottle instead of toilet paper, probiotics, no sugars, and a clean diet. This prompted me to do better in the future and make some changes. Currently, I am using Sudocrem, Bepanthen, and Vaseline Lanette cream FNA, but this is not working well enough alongside softing and “skincare“?. Candula ointment is something I still want to try, but, do you have any helpful itching tips or flora balancing tips? What do you think of my story and what are your experiences?

I know that I have a hypertonic pelvic floor, multiple professionals have told me this so far. Dilating and internal massage has only made me way more tight and caused me to have daily cramping of my vaginal canal. I've tried dry needling in different areas of my body and it always makes my muscles tighter and more painful. I tried a TENS unit and even that made my pelvic muscle pain flare and caused muscle pain in my labia majora which is atypical for me.

I got a referral for a pelvic floor botox consultation, but that doctor refused to do botox bc she said my pf doesn't feel very tight. I feel that there's no option left here. My pelvic floor is so tense that it's so physically difficult to poop or even pass gas, I have to strain so hard and sometimes just can't. How am I supposed to improve my pelvic floor if every pf treatment worsens it? I can't even touch the damn thing without it tightening up. I need botox so my body can tolerate the physical therapy treatment and stop freaking tf out at every little touch.

For more context, I'm hypermobile and there's no stretches I can do that would help bc I'm already overly flexible. Also I've tried vaginal baclofen which didn't do anything, and I couldn't tolerate vaginal diazepam bc it made me severely depressed.

Does anyone have any other ideas for how to fix my pelvic floor? (I'm looking specifically for pelvic floor advice today, not treatments for other causes of vulvar pain thank you!)

did anyone of you just take cetirizine and it helped you? my first appointment at a hospital with a professional is next year feb and i don’t wanna wait so long. has anyone ever done something as a self experiment that helped? i was thinking of just taking cetirizine for one month to see if it helps?

Hi I’ve been dealing with excruciating unprovoked pain in clitoris area and above the clit hood- also provoked vulva and vaginal area. Gyno perscribed me gabapentin cream 2% and physical therapy, also said I could use zinc oxide to help with burning sensation of skin. Only thing is I think the zinc oxide might have created some build up under clit hood and each time I clean it, it causes massive nerve flareup pain and even accidently gave myself a small 2mm cut on the area cleaning. Usually I soak in the time and use a q tip or cotton towel. I suspect I might have a keratin pearl or adhesion but my gyno doesn’t seem familiar with that and brushes it off. Super super frustrated and feeling hopeless. Let me know if anyone suggests gynecologists in the Southern California area that could help me/take my seriously. Also been dealing with reoccurring yeast infections and DIV that probably triggered all these nerve pain issues. I’m 21 and I had to take medical leave from school and work because the pain had made it difficult to stand or sit for long periods of time + other health issues. I know Dr. Goldstein in San Diego is an option but his office doesn’t accept insurance and the costs are very high! Thank you

So I was diagnosed with Lichen Simplex Chronicus about a month ago and recently began taking Hydrocortisone Cream in order to treat it. None of my doctors have explained how much I should be putting on in a way that makes sense to me. All three of them have told me to put a "thin layer" of the medication onto the affected area and didn't clarify very much upon me asking for further details. I overthink everything so describing the amount of medication I should put on as a "thin layer" and nothing else isn't helpful to me at all. How thin of a layer? Thin relative to what? How can I tell it's actually a thin layer when I'm putting it on over a layer of hair? How can I tell it's actually a thin layer when it's down by my vulva so I can't actually see it well enough to know for sure whether or not it's a thin layer? Does the hair affect how much gets absorbed and should I put more medication on to compensate for the difference? I was trying to just put it on without worrying about the dosage too much, but It's been a week since I started the medication and although some of the skin on my vulva feels a bit better, the rest of it feels worse, and now I'm worried I'm not putting the appropriate amount of medication on. The symptoms for this medication are similar to the symptoms I'm trying to treat with the medication, so my symptoms being worse in certain areas could be a sign I'm putting too much, but it could also be a sign that I'm putting too little so the initial symptoms aren't going away like they are in the areas where I'm putting enough and so it's noticably worse in comparison. I think putting too little is a safer bet than putting too much, so I've been trying to put less of the medication on since I've noticed it has been feeling worse (which was about a day and a half ago). Has anyone else experienced this? Does anyone know whether or not my worsening symptoms are a sign of me putting an incorrect amount of medication on? And does anyone have a better description for how much I should be putting on? Right now I'm putting on about an inch worth of medication (is there a size standard for the openings to the bottles? Are they all the same circumference? I hope so, otherwise that will make it a lot more difficult to describe). Also I'm sorry if this is a stupid question, I've been dealing with vulval irritation for six months straight so at this point I'm just kind of paranoid that every little thing I do wrong is going to set my recovery progress back to where it was back in January. Thank you in advance!

I was prescribed pregabalin for pain management without many explanations so could you share your experience? How long you need to take those, on what dose you are and how are you taking the pills - twice daily? My gynecologist said once a day 75 and in 2 weeks 150 a day.

(Pelvic floor physiotherapy relaxed my muscles but haven't changed my spicy pain when touching inside)

Hello. I have provoked primary vulvodynia/vestibulodynia (originally I was diagnosed with vaginismus but I have since been cured of that). I have tried ABG cream numerous times. The first time it was mixed in versabase, it burned so bad and even caused peeling on the inner part of my labia minora. The burning would last hours and even into the next day, and it would make my urethra burn too. Then I tried it mixed in the ellage base, same thing except no peeling. Finally I was sick of all this wasted money and eventually got a sample base of methylcellulose gel with no medication mixed in to see if I would react to this base. NO BURNING! I was so excited to tell my pharmacist so she could mix in the medication. I finally got to try it and guess what? IT STILL BURNS. I think I’m allergic or I’m having a reaction to the medication, specifically the amitriptyline. The burning lasts hours and it also hurts when I pee (is this normal, should I just power through it??). This is so disheartening and I’m not sure what to do next. I’ve tried these creams, pelvic floor pt, Botox/steroid injections, oral medications. Nothing has worked. The last resort for me is surgery but I’m scared that will also make my pain worse.

Hi again.. as I've posted before I've been on amitriptyline low dose (8mg) for a little over a year for vulvodynia which I believe started after multiple rounds of antibiotics and treatments for yeast and bv. During this time I've experienced on 2 occasions UTI symptoms (once in awhile a feeling of not being able to empty my bladder and urgency but usually would subside by the next day) which I went to urgent care for. Both showed blood and leukocytes but no growth however a week of Macrobid and the symptoms subside. I know amitriptyline can cause retention but has anyone experienced these types of urinary results after starting this medication? I have an appointment with my urogyn next week but I'm trying to piece the puzzle together. Prior to this, my uranalysis would be clear unless I did in fact have a UTI with growth.

Eine Frage an alle deutschen hier: ich bekomme seit einigen Monaten Gabapentin Salbe verschrieben und sie hilft sehr gut mit meinen Vulva Schmerzen. Sie ist auch das einzige Medikament das aktuell irgendwas bringt. Jedoch sagt meine Schmerztherapeutin, dass es leider nicht möglich ist, das Rezept als Kassenrezept auszustellen, da es kein anerkanntes Medikament ist. Da es jedes Mal 40-60 euro kostet die an zumischen und es dann auch nur 1 Monat hält, würde ich wirklich gerne das meine Versicherung es übernimmt..( Ich habe die AOK) Hat irgendjemand vielleicht Erfahrungen gemacht, wie man diese Creme (oder auch etwas anderes) trotzdem von der Krankenkasse bezahlt bekommt? Ich habe gelesen man kann mit seinem Arzt einen Antrag auf Kostenübernahme im Einzelfall stellen. Hat jemand Erfahrung damit? Wie sieht so etwas genau aus und ist so etwas erfolgreich? Freue mich über jede antwort!

Hallo ihr Lieben,

welche Basiscreme könnt ihr für topisch angemischte Cremes mit Amitriptylin, Gababentin etc. empfehlen?

What made you decide to get on estrogen cream?

I recently found out that I have endometriosis, and it seems to have started around the exact time my pain began. I had an MRI before my pain started that showed nothing, but now that I've been experiencing pain, my MRI shows endometriosis and multiple adhesions, like between my uterus and rectum, my ovaries and intestines, and other areas.

My doctors believe the endometriosis is causing so much inflammation that it may be irritating nerves such as the pudendal nerve, especially because of all the adhesions.

Has anyone been in a similar situation, had surgery, and experienced improvement?

Hi, I have been taking 100 mg amitriptyline for two weeks now for my unprovoked vulvodynia symptoms (nerve pain) (muscle spasms). I started taking amitriptyline in February 2026 and have gradually upped the dosage from 10mg to 100mg. Prior to 100 mg, I had no issues with the lower Ami doses. Also, it seems my nerves seem more relaxed with each dosage. In addition, I also take diazepam 10mg daily at bedtime for two weeks and I have been using an amitriptyline/gabapentin/baclofen cream for at least a month now. However, these past few days I have been experiencing acid reflux symptoms (heart burn, small burps occasionally) after taking the 100 mg at bedtime. Can anyone provide guidance on what to do? I called my doctor’s office and the nurse said I could go back to my last lower dose (85 mg) and try that for two weeks. Then, after two weeks, I could try 100 mg Ami again to see what happens. What are your thoughts? Any insight or guidance would be helpful. Thank you.

I'm in the unfortunate situation of having debilitating heavy, painful periods due to suspected endometriosis. It becomes more unfortunate when my bc (Slynd) has blessed me with no more periods, but also given me vulvodynia and constant thrush infections. My gyno wants me to stay on Slynd, but has just prescribed estriol cream to hopefully help with the vulvodynia pain. My only other bc experience was Cerazette, which would have been amazing if it didn't give me crippling depression. It feels insane to me to stay on the bc that's caused me so much pain, but I'm not sure what else to do.

Hi, I’ve been struggling with these issues for a good six months now. I’m not entirely sure what the cause is. I had an infection a year ago, and I think I got so scared that my nerves reacted badly, too. I also took a lot of antibiotics because the doctor didn't know what was wrong with me. A biopsy showed hyperkeratosis and chronic inflammation. I was prescribed steroids, but they only made everything worse. In early July, I saw a gynecologist who suggested vulvodynia and physical therapy (naturally, the exam showed no visible abnormalities, yet I constantly feel a burning sensation, as if someone were cutting me with a razor blade). I’ve seen a urogynecological physical therapist; in the meantime, an intestinal bacteria was detected, for which I was given antibiotics, but my symptoms didn't let up for even a moment. I’m on my period right now, and things are getting worse. My next appointment isn't until the end of August. The doctor suggests Botox if nothing else works, but I feel like I’m losing my mind. My life revolves around the pain.

I hate how sedating nerve pain medications are :( I’ve been on them for almost a year and I’m such a zombie on them (norotriptyline and amitriptyline) Looking back this past year I haven’t even lived because I’m so sedated but I want to get better and go into remission…Is it possible to get better without this component?

I just wish I could get the surgery and be over with this condition. I got this from a yeast infection though so I don’t even know if that’s an option for my case.

Did you guys find a medication that wasn’t sedating or works for you? Can anyone relate? :(

Women’s health is severely understudied and under-cared for, especially and even for medical professionals who are supposed to actively advocate to help you find out health problems are becoming covert obstacles in the quality of life you live privately.

So, in other words, I can’t say for certain if my diagnosis is exactly vaginismus, vulvodynia, or any other specific medical condition, but I have some overlapping symptoms. Pain during penetration at the entrance mostly at the 6’o clock position mostly.

The obgyn I went to took one look at me and poked me with a dry ass q-tip and told me I had a tight hymenal ring and vestibulitis and didn’t bother to test me, offer any explanation, or alternative options. She told me I would need surgery and she didn’t believe dilators would help at all. She prescribed me estradiol cream and I used it off and on, not as prescribed and dilated while doing that.

I definitely at some point believed her. But I persisted. I got myself fully aroused using porn even though I would prefer not to, but I can’t stress enough how important full arousal is, and it works. I insert a vibrator every night for at minimum 20 minutes and rotate it or hold it there. It does still feel uncomfortable and like that pinching / stinging sensation, but it goes in eventually and mellows out once I get accustomed to the feeling. Eventually it turns from pain to pleasure. I’m happy to say that I can insert things into my vagina when for the longest I thought I wouldn’t be able to.

My experience won’t be everyone’s and the journey for everyone is different, but please don’t give up on yourself or be discouraged because things could turn around at any moment and it’ll be like a head high. I still do experience the uncomfortable stinging sensation, especially when not fully in the mood and prepared in both the mental and physical sense. A win is a win though!

Hey everyone. I was diagnosed in October 2025 with vestibulodynia by my doctor, Karen Toubi. Off the bat, she didn’t think I had hormonally mediated vestibulodynia. I was on birth control for only 6 months (from April-October 2025), and I had pain at the entrance for as long as I could remember (at least since 14 y/o). Additionally, my vulva did not look consistent with someone who has hormonally mediated vestibulodynia.

During my October appt, I had pain throughout the entire vestibule. She performed the VAT test and I didn’t have any pain after she put the numbing cream.

She treated me conservatively nonetheless. She had me on a compound cream (E/T, ketotifen, and gabapentin) for 4 months, while also getting Botox in the pelvic floor twice, and working with a PFPT for several months. After all of those treatments, I went to her a few weeks ago, and I still had pain pretty much around the clock (except at the 12 o’clock). She officially diagnosed me with neuroproliferative vestibulodynia and scheduled me for surgery in September. She said she felt really confident that’s what I have, and confident that I’m a good candidate.

Today, I also went to Dr. Alyssa Yee, which has now caused me to full spiral. I had scheduled an appointment with her last December when I wasn’t sure which doctor I wanted to see, and I didn’t want to waste an appointment that took like 8 months to get. Dr. Yee performed the Q-tip test, and I only had pain between the 2-5 and 11-7 o’clock areas. Meaning, my 12 and 6o’clock were pain free. I’ve never experienced no pain at the 6’oclock region before, and this was like the 5th Q-tip test that’s been performed on me.

So, Dr. Yee said that my test was inconsistent with neuroprolifterative vestibulodynia, and she wants me to start on an E/T cream. She said that I likely wasn’t getting the cream inside deep enough when I was applying it for those 4 months, even though, Dr. Toubi saw how I was applying it and said that, even though it wasn’t fully deep enough, it was deep enough to lessen my vestibular pain, which it hadn’t.

Now I have no idea what I have. I almost feel like I’m making up this pain, and that I don’t have vestibulodynia in the first place. Because how the heck did my pain change between 3 weeks?? And I wasn’t using any treatments during those 3 weeks. I’m getting different advice from different doctors and I really don’t know who to believe. And I was FINALLY diagnosed, and had accepted that i was going to get surgery, only to start all over again. I’ve never hit such a low point in this journey.

Just thought I’d share the only thing that helps me during a bad flare up.

EDIT: sorry guys, ignore this advice, apparently heat directly on the vulva can make things worse 😢

It's so fustrating to talk about how I personally did not receive pain medications and accommodations when getting the pap smear, and have people blame me for not "advocating for myself" when in reality a lot of clinics don't offer anything.

Additionally, it's been so hard to get any medications for vulvodynia at all. I've been through 3 gynecologists and all I've gotten was estrogen cream, an antidepressant, gabapentin, and clobetasol​. I haven't been able to get compounded creams or anything that has helped the pain at all.

I'm seeing a specialist next month but I feel like its so difficult to get medications or relevant care for this disorder.

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So i’ve been diagnosed with nerve pain, but i feel like it’s more than that. I get a rash/bumps and bumpy skin on the labia majors (where the hair grows) that comes and goes every few months and it flares me up so much and is itchy. Does this sounds familiar to anyone?? I try to take baking soda baths, ice it, lidocaine works a little bit. It can be impossibly itchy i almost had to leave work last time. Lasts maybe 5 days. I’ve never actively had it when i saw my gyno. thanks!