I know its not directly vulvadynia, but the same area and can it be the cause?
My doctor have referred me to a specialist, I have neurological problems in my body, but have all my life had trouble pooping. My doctor think it might either trigger my vulvadynia or be the cause of the pain. So I just thought I would share, excited to see if this is the root of the problem in this area.
I have a chronic condition (mainly urinary urgency/frequency and pelvic discomfort) that is present almost every day.
Something really strange happens whenever I get a viral infection like the flu or a bad cold: my usual symptoms almost completely disappear. It’s as if my body temporarily “forgets” I have this condition. Once I recover from the infection, the symptoms gradually come back.
Has anyone else experienced this?
I’m also curious if anyone knows what this could indicate from an immunological or neurological perspective. Could it suggest an immune system issue, neuroinflammation, mast cell involvement, central sensitization, or something else?
I’d love to hear if you’ve had a similar experience or if you’ve come across any explanations.
Had to say it.
Hi everyone,
I've been having severe itching for over 12 years. My current OBGYN says I don't have the classic signs of LS. over the past 10 years we have tried multiple kinds of cream and ointment. absolutely, nothing has helped. the itch has always been in the same place, and doesn't move. there are definitely weeks where it is significantly worse and unbearable. the only thing that I have found that has worked for subsiding the itching is a cream that numbs the area (the vagisil itch cream). the problem: after I get out of the shower, I have a very distinct white patch that I can see, but I'm a very pale person and it's not always visible unless the area is damp. over the past year it has gotten significantly worse and the area has gotten a little bigger. because I don't have the classic signs, they have been unwilling to give me a punch biopsy. but I can't live like this anymore. It's affecting so much of my life.
I started looking for a specialist, I made an appointment for New York City but after some extra research a lot of reviews come back negative. some saying that it's a scam. so I'm looking for recommendations. has anyone in the tri-state area of NJ, NY and PA seen a specialist that they liked or felt gave them answers?
For people with clitoral adhesions or Clitorodynia could you describe your symptoms as I’m confused to what my problem really is.
My gynaecologist said I have adhesions but maybe also clitorodynia but I don’t know what the difference in pain would feel like between just adhesions and combined with clitorodynia.
My pain is when the area is touched or if fabrics that aren’t cotton touch the area it’s uncomfortable. Also when my pubic hair grows out of feels like a stabbing pain to my clit.
Any response is appreciated
Hi everyone, I'm new here. This is my story:
2 months ago my labia was itching on ine side and I thought it was a yeast infection. I had one before, like 10 years ago maybe. I used over the counter treatment and the itching was gone overnight.
2 days later, the pain started where the itching was before. And it hasn't left, it's been 8 weeks now.
The pain is one sided, on the inside of my inner labia. It's always there, sometimes more of a mild discomfort and other times a very sharp pain. It burns sometimes, or stings. Or it feels like something on the inside is dry and twisted? Hard to explain. I can't bike anymore, and sitting makes it worse as well. Walking and laying down is fine, just discomfort but usually not painful, unless I've been sitting a lot before.
I take the pill so was able to put off my period but last week I had to let it happen and it was horrible. It felt like acid pouring down on my insides.
Besides the continues symptoms I also sometimes have anal discomfort: itching or throbbing pain. Or I have a deeper pounding pain somewhere else in my vulva area. Or my labia itch out of nowhere. Or the whole down there area feels somewhat numb but burns at the same time.
But these symptoms come and go and are usually brief.
I saw my general doctor (huisarts in Dutch) 3 times now. Got tested for yeast, BV and general flora: everything was normal. The speculum exam was extremely painful. It took more than a week for the worst of that pain to go away.
They told me to use over the counter zink-oxide lotion, that burnt me horribly. I also tried vaseline-lidocaine, which helped briefly but the whole area burnt afterwards and my discharge (which has been normal) got weird. I tried a vaginal gel which helps a little bit and at least doesn't hurt me.
Today my general doctor agreed to a referral to a gyno. The wait list is 70 days.... and they might refuse the referral.
She looked and poked with a cottonball stick, which hurt a lot in a specific area and she said she saw redness. Than she adviced lanette lotion which again is just an over the counter lotion. Nothing to actually help with the pain.
I am desperately looking for help and advice in general but if anybody reading this is from the Netherlands, I would be so grateful for your specific advice.
Thank you in advance.
Experienced the worse yeast infection pain back in august 2025, waited too long to treat, eventually took diflucan afterwards. Had pelvic discomfort and irritation since, burning, and yellow discharge. I have been back to the doctors and they do not see an active infection. Did evvy test long ago and 30% disruptive bacteria bv, I didn’t take an antibiotic though at the time. My symptoms seem to fluctuate, some days aren’t too bad, while others are terrible. Whenever I have an exam, they do not see anything. It seems I feel more irritated before and after my period(around ovulation). I’ve tried good clean love moisturizer which burns when I first use it, then seems fine, but I’m still irritated and worried if my vaginal tissues are inflamed and sensitive. I got a referral for pelvic floor therapy, but haven’t made an appointment yet, worried about vulvodynia or any other chronic pain issue. I feel overwhelmed and honestly stuck by fear which is what led me here it seems. I know it doesn’t make sense, I’m in a freeze response. Does this get better? Concerned about my intimate life and overall vaginal health.
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.
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!)
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
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?
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!
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)
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.
What made you decide to get on estrogen cream?
Hallo ihr Lieben,
welche Basiscreme könnt ihr für topisch angemischte Cremes mit Amitriptylin, Gababentin etc. empfehlen?
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? :(
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?
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.
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.