Hello everyone!

With permission from the wonderful mods of this subreddit, I wanted to bring attention to an upcoming event that people here may find useful.

It's Not Just You: Vulvar Pain and Intimacy

This is an interactive seminar (discussions and sharing experiences and general chiming in are encouraged, but by no means required) that focuses around ways to understand and manage vulvodynia. While there's a focus on intimacy, there will be more all-encompassing information there as well. The class is LGBTQIA+ inclusive, and information will be present to help people regardless of if they are cis, trans, gay, straight, or any combination of identities.

For what to expect, here is a write-up / synopsis from the host herself:

It's specifically focused on navigating intimacy with vulvar pain.

I will be doing an introduction piece about my own experience with vulvodynia, and how I was diagnosed. Then talking about other conditions that can cause pain, how they interact with vulvodynia or similar diagnosis, and who/how many people they effect.

How to identify where the pain is coming from (what part of the vulva).

And then:

• Strategies to manage and mitigate discomfort.
• Recognizing triggers and flare-ups.
• An example of a desensitization exercise.
• Longer-term treatment for vulvar pain.
• How to talk about vulvar pain with partners.
• Pre-sex prep.
• Recommended positions and tools to alleviate pain.
• Sex toys and products that may be more suitable for those with vulvar pain.
• Sex hacks for vulvar pain and creative ways to get busy.
• Aftercare and pain management.

Notes:

1. The seminar is at 7:30 pm AST, which is the same as:
   1. 6:30 pm EST
   2. 5:30 pm CST
   3. 3:30 pm PST
2. This class is not free, unfortunately, but is built off of a "pay what you can" model, which allows you to pay a minimum of $4 USD / $5 CAD, or anything above that if you'd like. There's no difference for anything higher, so don't worry about potentially missing anything, it's purely a comfort thing.

^((Edited for mistake in formatting.))

Does anyone flare worse after certain food, drinks, medications, herbs, or supplements or riding in a car (or any kind of vibration)?

So I’m not feeling a lot of burning a little discomfort does anyone get like a Zinj feeling? only last like a second or two it’s happening on my left side.

Why tf are jeans such a flare up cause it’s so annoying I just want to be able to wear cute outfits!!!!!!!!

Hi 🌸 My gynecologist & I think I may have Desquamative Inflammatory Vaginitis and she recently prescribed a compounded Estrogen 0.01% + Clindamycin 2% + Hydrocortisone 10% vaginal gel to be used nightly for 1 month and then reassess my symptoms.

The only issue is that she doesn't have experience treating patients with DIV at all. I'm theoretically her first.

So while she told me to use this gel every night for thirty days, she didn't actually tell me how much to use, and the pharmacy gave me their standard pump bottle with this intravaginal applicator. It's a set dose each time, but it seems like a lot, and I'm worried I'll be using too much each time.

Can anyone who has used this or a similar treatment chime in? I would really appreciate it 💕

My questions are:

1. How much did you/do you apply each time?
2. Did/do you use it nightly or multiple times per day?
3. Did you/do you only apply it inside the vagina or do you make sure to smear it around the vulva & vestibule as well?

I started estrogen 3x weekly, and am having confusing results.

On Monday, it feels relieving. Tuesday and Wednesday go by with ease. Wednesday night, I apply my estrogen and on Thursday morning I wake up with UTI sensations, burning and rawness back in full force. The discomfort lasts. Friday night, I apply a small amount and the burning lasts through the weekend.

Monday comes around again, and I feel relief and Monday-Wednesday go by without pain. This cycle has repeated for the three weeks I've been on E.

Does this sound like something that has happened to anyone else? Does it seem like allergy to the base? Or irritation from the Estradiol itself?

I'm confused. pls help!

Ik I posted yesterday. But holy fuck. Earlier in the month I managed to get a UTI and bacterial vaginosis so I was bleeding every now and then. It didn’t hurt too bad but definitely made my urethra irritated. I’m almost done with the bv antibiotics but it trigged a yeast infection cuz they do that. Luckily I had fluconezal that I asked for a couple months ago bc I was taking some antibiotics for a non vaginal infection. I feel some relief already bc it’s a strong pill that can treat you with just one or two. But after I finish the bv treatment tomorrow I need to do uti treatment for 14 days :/ which will likely trigger yeast again. And on top of that my period keeps delaying itself. Maybe bc of the infections? But it is and so I have really bad cramps rn. Why is ph balance thrown off so easily? And then my period just makes it more likely.

Im wondering if I can do internal work for pelvic floor muscles by myself since PF therapists don't exist in my country. If yes, can someone tell me what does the therapist do so I could try to replicate it.

i was on topical amitriptyline and am now starting oral amitriptyline. however, due to my mental health i’m also possibly going to be starting an ssri to treat my ocd. does anyone have any experience using both a tricyclic and an ssri at the same time? what was it like?

Hi! , so I’m not sure what’s wrong here. Form the very first time I’ve had sex till currently, I’ve always experienced pain when having a penis or a toy inserted. It’s not even the inside that hurts, it’s always the outside. I don’t have sex all the time with my boyfriend but every time we do and he tries to insert his penis, the entrance to my vagina hurts sooo bad. Once it gets past the entrance everything is perfectly fine, but if we take a 5min break and get bck to it I have to go through that excruciating pain all over again. Sometimes it just throws off the mood for me but I get it bck as we continue. I just dont kno wha the problem is. I thought maybe I just wander used to sex yet but this has happened with past partners and now him as well. It’s strictly just the entrance to my vagina that hurts so bad. Everything inside feels fine so I just don’t know. I don’t have a gyno I’m young under 20 but old enough to go seek one, I’ve never had anyone look at my vagina no doctors or anything. If I have to get this checked I will find a gynecologist but does this sound familiar to any of you?

Anyone have success with a reduction or elimination of oxalate from their diet? My doctor recommended it to me and as much as I love chocolate and Coke Zero I will give them up for the pain to end

hi all, so long story short i have struggled on & off with urinary and vaginal burning/issues for years. I think certain birth controls and meds made it flare up. Recently i had the most painful flare up after a pelvic infection and the pain just never went away. It hurt to pee, it hurt to walk, couldn’t have sex etc. i never thought my issue was my pelvic floor due to having uti issues and it seeming to be hormonal. I finally had enough and started seeing a pelvic floor PT. After the first session i felt relief. I have also had tailbone pain for years that doctors kept brushing off. It turns out my tailbone is hooked and there are issues there as well. Years of urinary issues, constipation, never put two & two together. The muscles down there are so tense and squeezing around my urethra and my tailbone is also pressing on muscles down there. It’s all connected and who knows what came first. The hypertonic pelvic floor or tailbone pain. But I’m just posting to say please please anyone struggling at LEAST just get evaluated by a pelvic floor PT!! It is life changing the relief im feeling and for the first time i have hope this will go away for good. I know there are other causes to vulvodynia but i for sure thought mine was hormonal and it was not.

So I’ve been dealing with discomfort down there for seven weeks now. Some days I just feel dry and irritated, which I think is related to Hormones. Every once in a while after I have sex, my left side close to the entrance burns. I had intercourse on Monday didn’t feel any discomfort really but then got my period and now my left side burns and I’m wondering if i actually have a tear and blood it’s just irritating it. any recommendations? I can’t see anything. I do have a steroid cream press trying to avoid that until I go to the doctor next week.

Last night I casually mentioned to my boyfriend that I always experience levels of pain and discomfort during sex and he was extremely taken aback that I've never mentioned it before. I thought what I experience was just normal and part and parcel of having sex and didn't want to make him feel bad for something I considered to be unavoidable. The pain is not significant enough that I don't enjoy sex or that it's impossible so I never really considered it to be an issue.

For as long as I can remember I feel a burning/stinging/tearing pain at the entrance of my vagina during and after sex. This can last for a day or two after intercourse where I experience swelling and occasionally small amounts of blood. The pain is worse the longer the period of time before we have sex again. Very occasionally I feel stinging and pinching sensations internally too though I think this is due to the position of my cervix during my cycle.

In the past few years the feeling of becoming aroused has become painful. It used to be extremely pleasurable but it now feels like a heavy, aching and raw pain across my whole vulva. This will subside once I start to have sex but is then replaced with a different pain/discomfort as mentioned above.

It feel ridiculous writing this down and not being fully conscious of it all before saying it aloud to my partner last night. As I am reading this it is clear that I need to address this.

Does this sound like vulvodynia? Where do I go from here?

Hi guys, I had this feeling for a while and then it stopped, but sometimes it comes back out of nowhere. Could this be due to me holding my pee for too long or not drinking enough water, any information would help, thanks

Hello - My 10 year old daughter has had on an off itching and discomfort around her vulva since she was a toddler. For the past 3 years however, it has been constant irritation where she becomes anxious if she does not have a cream of some sort with her at all times. I have taken her to a Gyno who told us she was fine, she did not test positive for yeast and we were sent home with notes to wash with water and use cotton underwear. Neither of which has done a thing. She now refuses to wear underwear says it makes everything worse. She also cannot keep using these OTC creams for relief. I've turned to reddit to try and find answers as Doctors are of no help. I am grateful to anyone who would take the time to answer with their thoughts of what this might be, seems similar to some other symptoms in this feed. Thank you so much!

I posted this in a discord server for Vulvodynia, but think others could relate.

I personally hate that we are seen as non sexual just bc of our condition. Not everyone wants to be celibate with it and I’ve been told to be bc I can’t enjoy the physical. I wish people would stop telling me what to do in that way. I’m an adult and i know my limits. I think not wanting sex due to Vulvodynia is valid as fuck. A lot genuinely can’t be on the receiving end, but I also hate when people act like there aren’t people with it that do want it anyway and act like it’s wrong to pursue it. We just need to be accommodated and have safe partners but. My sexuality didn’t stop (though it feels like it slowly is starting to) my body is just doing this against my will.

I was upset about having this condition but wanting sex and was told to learn to orgasm (I also have anorgasmia, and my clit being uncomfortable/numb doesn’t help) or just not have sex. Why can’t people with our pain just do things enjoyable to us sexually and leave it at that? Even if it’s not our genitalia being touched sex isn’t just a vulva/vagina being touched or about orgasms but the emotional experience. It’s about feeling fulfilled and comfortable

I'm 40 weeks pregnant and saw my midwife today. I've been having some white discharge and and more sensitivity. She said this can be normal at this stage in pregnancy but took a swab just in case it is thrush. In the meantime she advised using just some external thrush cream in case until we get the results back. Then if I do have it to use a gel pessary.

I'm concerned about using thrush cream if I don't have thrush. Will it irritate more? Are there other options that won't cause further discomfort? I'm worried about worsening my vulvodynia but also aware that I need to clear the infection if I do have one before giving birth.

Any advice?

my vulvodynia is genetic, so i have never not once been able to do things like penetrative intercourse or even use a tampon because it hurts too much. i went to several doctors before finally getting a diagnosis and working with various creams, steroid shots (the worst), and pelvic floor therapy (we had to kind of shop around for this, so even that has been a frustrating process). i’ve made some progress, but not a ton, so we had a vestibulectomy on the calendar but the recovery time had been dramatically downplayed to me. i’m a teacher, and so to take off so much time is a lot of work and it’s difficult to get approval for. i’m going to have to reschedule it to likely the summer time after summer school and spend that time recovering. i’m just so disheartened and frustrated that what i was hoping was finally going to at least give a big push to the finish line of dealing with this is going to have to be delayed by more than 6 months and take up my whole summer.

Hi everyone,

I've had provoked vulvodynia for 12-14 years. Have tried many things...

3 months ago, I started DHEA inserts nightly and topical lidocaine nightly.

Improvements:

• slightest more interest in sex, some physiological arousal watching movies etc
• not as dry/itchy
• 25% pain reduction

No change in tissue plumpness at all. Still have what looks like vaginal atrophy shrinking, shriveled appearance on the vulva. Still painful.

TLDR questions:

• how long did it take you to notice a difference with DHEA?

• what other treatments do you use with it? I'm wondering if testosterone might be helpful at improving my desire for sex.

• did you find estrogen inserts worked better?? I used to be on them but am sensitive to hormones (migraines) and wanted to see if this would help more.

Thanks so much! Appreciate any suggestions.

Still not sure what type of vestibulodynia I have. Went to multiple doctors, tried estrogen, compound creams, nortriptilyn, physical therapy… and the symptoms wouldn’t get better (pain during first seconds of penetration, burning sensation when wearing tight clothes, stinging pain when touching the area). + developed vaginismus because of the pain the first seconds of sex. Tested hormones and doc said everything is fine even though the pain fluctuates along with my cycle. So I just kinda gave up? Not sure what’s left to do and the weird thing is that when I don’t think about it too much, it hurts less or something? I do experience annoying shit like burning from the lube or stabbing pain in certain positions which is a shame because sex could be more exciting but i’m not complaining since i can have sex. Don’t know where this is going lol. More like a rant I guess? I feel like I’ve just accepted that this is my life and I’ll just have to live with it. Sucks though

Long story short. Had irritation back in may was given metro for bv, developed 2 white bitty patches lower labia minora but went away. Then came back a week later and covered entire inner labia minors both walls. Discharge was normal, swabbed negative for yeast. It’s September now seen gyno who said I have eczema even tho I don’t have it elsewhere. Used steroid for 2 weeks daily then every other week for a month. Came off steroid month ago I was using it in inner labia at the bottom. Week later inner labia and pee area burning very red and white dots inside. 2 weeks ago took a yeast tablet as I had white inner labia coating at the top of labia minora inside ( made a little difference) but now I have actual burning inside and it burns to wee. I don’t think I have eczema more So yeast that’s being left untreated which is giving me eczema down there. Has anyone experienced something like this and does it sound like I have a yeast infection now or am I going through steroid withdrawal. On Sunday the opening to my vagina felt irritated itchy and burny now the whole inside is. Pls help

Super scared right now because up until now, I’ve only ever had vulvar pain when attempting to insert a large dilator. Lately, I’ve encountered the pain while just walking around. It started about 2 months ago, where I would get a horrible stinging/burning sensation when standing or walking. Sometimes it gets so bad that I can’t continue to walk.

It will happen about once or twice every 2 weeks. I used to use estrogen cream as prescribed by my gyno for dilator help. After that, I tried a compounded cream with amitriptyline, baclofen, and gabapentin. The estrogen made no difference for months. The compounded cream made my vulva feel burning/itchy for hours after applying. I used it for 5 weeks as recommended until stopping it. Could this be a side effect from trying the cream?

I need help on how to make the pain stop. Should I restart the estrogen cream? My gyno is stubborn so I’m reluctant to return to her with this issue. I’m seeing a urogyno specialist in January- I’ve been waiting since June. I’m terrified that this is the start of something terrible and that it will continue to get worse. I never wear jeans or stiff clothes that could irritate the area. Most of my undies are cotton though I do still wear thongs.

The last of my stitches have dissolved/fallen out after my vestibulectomy just over a month ago, and I'm so excited to report that my vestibule doesn't seem to have any painful spots anymore! The reconstruction around what used to be my worst spot, the 5 to 7 o'clock region, looks a bit lopsided, but it doesn't hurt! I can't believe it! I'm also working my way through my set of 6 dilators as recommended by my doctor (just tried the 3rd one and it was tight but doable), and I'm going back to PT starting next week. Things are looking up!

For those "freed" of pain or discomfort from using medicine (I mean fully rid of it), what age did you start taking it? And how long does it last? How often do you use it? Is there moments you have to go off meds? While I'm not planning on it myself, I'm curious just in case I ever get worse. And for those still on the journey of recovering, is there relief or success in meds?

I’ve noticed that there’s not a lot of action on this page (disappointingly.) I just wanted to make people aware of another, more active resource. I’m in a few Facebook groups (not sure if I’m allowed to post names) but they’re vulvodynia support groups and very active. I know we love the anonymity of Reddit but if you’re looking for other supports online, I recommend trying that route as well! I’m hoping more people in those groups will come over here too. I figure the bigger the support community, the better, since a lot of this issue is a mystery, with unique aspects specific to each individual who has it. (Those group rules tend to follow the ones this group has, so nobody can say treatments will never work or certain ones only work, etc.)

Hi, I have been on amitriptylin for a while now on 50mg for managing pain. It’s been great, no issues.

I saw a mental health doctor for depression and he suggested upping it to 100mg for both pain and to treat my depression.

That was three weeks ago and as of three weeks ago I have noticed my pain come back. Thought it was maybe thrush so did the fluconazol, pessary and cream, no improvement.

Has anyone else been on this high dose for both and found it didn’t work? Is it all in my head? Please advice of any experienced. Thank you.

Hi Guys, I need some support. I’m planning to get pregnant in the next couple of years but I’m so afraid of birthing…

I have vulva pain , left side primarily sometimes. Doctor assumes that it’s due to my left hip Labrum tear, the surgeon advices surgery so that my symptoms can improve

I’m still contemplating about the surgery as my hip pain is barely noticeable

I’m pelvic floor is weak, I itch a lot especially during intercourse and then my clit feels aroused sometimes.

I’m not sure if I have to get the surgery before pregnancy and if a tight pelvic floor or all of this just means that natural vaginal birth is not an option

I guess I’m asking for your support and positive stories and suggestions on how to approach this correctly

I have a good PT, but she WILL NOT stop talking about trauma and the mind body connection as if I’ve never heard of it before. I am in somatic therapy and have done extensive research on trauma and the body, which she knows. I have shared with her and had my therapist share with her that it is not helpful for her to say things like “trauma can have a lot to do with pelvic floor problems and chronic pain in general, did you know that?” Over and over and over When I KNOW THAT and she knows I know that and I’ve told her that while I completely recognize her intentions are good, it’s exhausting to be told something I already know and am already working on with other licensed and experienced providers.

I just need her to focus on the PT PART!! Bc trying to be my psychotherapist too and ignoring mine and my psychotherapist’s pleas for her to stop is actively harming my care and my ability to relax in our sessions. I understand that she feels “she would be negligent not to tell me” but I already know and it feels like I’m being ignored as a real, full human being who has clearly expressed my needs and my existing knowledge and had them corroborated by professionals.

Does anyone have this issue?! At this point it feels like a disregard for consent for her to keep on saying this thing I and my therapist have begged her not to and explained clearly why. Even though she doesn’t have bad intentions, it reminds me of a lot of medical gaslighting I’ve experienced in which me expressing my needs is ignored and im treated as uninformed, stupid, or untrustworthy and my efforts to express my need for care is met with this claim that it’s in my head, and i have explained this to her. Ironically, this is giving me MORE medical trauma. Like if I asked a PT to stop pressing down hard on my leg or something without telling me and they just kept doing it, that wouldn’t be okay either, even if they did it for other patients m and they learned it in school. My last PT had no problem not lecturing me about this, but she moved away and good PTs are hard to find.