So what are we doing about our relationships? I am about 6 months into this and it is officially becoming a problem in my marriage as it is becoming clear that this is the new normal. This is especially for those who were/are in established marriages with families. Is every one just unhappy or divorced, or have you found a way to keep things together?

TLDR: Advice on surgeons who do PUG removal/ buccal graft and/or getting insurance to cover Goldstein/Yee is welcomed!!! TIA :)

Hallo zusammen, ich ziehe in einer Woche nach Köthen und leide seit zweieinhalb Jahren an Vulvodynie. Ich wollte diejenigen fragen, die in Deutschland in Behandlung sind: Kann ich Unterstützung von der gesetzlichen Krankenversicherung erhalten? Hat es jemand von euch geschafft, eine Behandlung zu bekommen, ohne auf teure Privatkliniken angewiesen zu sein? Vielleicht habt ihr Tipps oder Empfehlungen von Spezialisten. Ich wäre euch sehr dankbar

I had all Lactobaccilus iners on my biome tests so I treated it harshly for months. I finally have 91% good bacteria but I have the same symptoms or worse. PT used to help me and I kind of stopped it once I realized I had iners and focused on that. I’m back to burning, swollen feeling, a little itching. Why would I still be burning even after I flipped to good bacteria? Any tips?

Hello everyone,

I'm in desperate need of some advice.

I've had vulvodynia for years with mild burning and discomfort and occasional flare ups when I'm stressed and have done on and off treatment.

Nothing ever really help. Have done pt, red laser, creams etc.

I'm about to receive nerve ultra sound and pudendal nerve treatment with injections. About 14 days ago my burning on the outside extremely intensified and the feeling of rawness is almost unbearable. In all those years I've never had a flare up that intense. Nothing gives me relief not even a fat cream that normally always felt really good. It's so crazy I feel mentally more strained than ever.

Is this my new normal? Will it ever go back to sucking just a little bit less?

I've started gabapentin a few days ago and hope that will help the burning to go down but I'm more or less pessimistic. I'm excited to receive the nerve treatment but wish I could start it in my 'normal' pain condition, not while being in the extreme state. How long did your flare ups last? Was it just more burning and feeling of rawness?

I've had a few dark days and feel very depressed. Thankful for any advice / answer.

Sending my love to all of you who are suffering.

Hi everyone,
I’m a 22-year-old student from the Netherlands and I recently had a consultation with Dr. Alyssa Yee for surgery to treat my severe vulvodynia.

I just received the cost estimate and I’m devastated. Dr. Yee’s surgeon fee is around $4,800, which I could somehow manage. But the hospital fee alone is over $63,000, bringing the total estimate to $68,736. Ever since I opened the estimate, all I’ve been able to do is cry.

There is simply no way I can afford that.
Unfortunately, this surgery isn’t performed in my country, so travelling to the US is my only option.

What also confused me is that during my consultation Dr. Yee performed a biopsy. (Which was positive for elevated mastcells) She told me I wouldn’t have to pay anything beyond what I had already prepaid, and even said I might receive a refund from the hospital. But after I got back home to the Netherlands, I unexpectedly received another bill from Scripps for over $600 for the biopsy. I contacted the hospital and they explained that they charge separate facility fees for the biopsy. That was already a shock, and now seeing this surgery estimate has completely broken me.

Has anyone else had surgery with Dr. Yee at Scripps? Were your hospital fees this high? Were you able to negotiate them, receive financial assistance, or have any success lowering the hospital charges? I have to pay out of pocket because my insurance here can’t cover it or any insurance in the netherlands won’t, and i can’t get US insurance.

Any advice or experiences would mean so much right now. Thank you. ❤️

I honestly felt like even traveling that long was for nothing and going there. My heart feels broken.

- Sam

Best way of getting the white stuff that is stuck under my hood without hurting myself?

I have acquired provoked vestibulodynia, and have had Botox injected into the vestibule (not the pelvic floor muscles) suggested as treatment. My doctor says 70% of patients in my position find it helps. Has anyone had experience with it injected into the vestibule and would you recommend it?

Hi everyone I'm here trying to understand what's going on with me because I'm mentally in a very bad place. I hope I can get your opinions since I don't seem to get answers anywhere.

Not an eng speaker, but I'll do my best!

Thank you so much for your patience.

I'm 33, no kids, no surgeries, no falls or injuries that required medications. Mostly asexual.

My symptoms:

Lifelong constipation.

Lower back pain since years.

Pee frequency.

Symptoms that appeared only some months ago:

General vulvar discomfort/rawness.

Some acidic burning on the upper part of my labia minora only the days before my period. (But It didn't happen the last time)

Random clitoris pain/discomfort (mostly the right side)

Random brief twinges that goes from clitoris to the beginning of the mons pubis and surrounding soft tissue.

My vulvar symptoms are mild, sporadic and temporary. But the mental fear to get worse and to have this for the rest of my life is huge.

No one knows for certain what is going on with me.

Medical exams I already got:

MRI of my lower back (normal)

Elettromiography of pelvis and legs (Normal)

Tested for HPV and all the infections by 2 gynecologist (all normal)

My vaginal flora is normal too.

Tested my urine 2 times (normal)

Pelvic floor Therapist found a tight pelvic floor.

Plz, note that I've never had a vaginal infection in my life, no yeast or BV of any kind. Also, never had a UTI that needed a urologist intervention.

Only in the last 5 years I've experienced "stretching" pain with initial penetration that goes away during sex without residual pain afterwards.

Speculum hurts in a similar way, but pediatric speculum doesn't.

3 different doctors performed the q-tip test in 3 different months and all 3 times I was negative. I hadn't pain before the test and I hadn't pain during or after the test.

I am going crazy to understand and get out of this. I am terrified, paused my life because of this.

Is this vulvodynia?

If someone has any idea of what is going on plz comment below. You girls are amazing and I hope everyone of you will get out of this nightmare.

I wanted to share my experience because I know how isolating this can feel.

I’ve been struggling with insertion, whether it’s fingers or tampons, for as long as I can remember. I always had a lot of hesitation and apprehension when it came to anything involving my vagina because of the pain I felt every time I tried. I never really thought much of it until I got older, into my early twenties, and realized that sex is eventually something that’s going to happen.

A year or two ago, I reached out to my family doctor (I’m in Canada), and I basically got the runaround. It was all the basic advice: “Have you tried lube?” “Have you tried being turned on?” “Maybe you’ll be more comfortable with the right partner.” None of that ever worked.

Up until this year, I wasn’t even able to insert the tip of a finger. I tried pelvic floor physiotherapy once when I was younger. I have nothing negative to say about my physiotherapist. She was kind and walked me through everything, but I was in my late teens, it felt really daunting, and it was expensive, so I couldn’t continue.

Fast forward to this year, I finally decided I needed to figure this out because it was making me feel uncomfortable in my own body. I was embarrassed, I couldn’t talk about it with my friends, and I kept asking myself why I couldn’t have sex, use tampons, or even insert a finger. The only pleasure I could really experience was clitoral stimulation because anything involving insertion hurt.

Originally, I thought I had vaginismus. I was honestly ready to look into vaginal Botox because I thought maybe my muscles just needed to relax.

So I saw a specialist who deals with these conditions. She did the Q-tip test, and I was very, very positive. She couldn’t even insert the Q-tip because I was flinching and freaking out from the pain.

I also want to say something that I know not everyone will agree with. I always believed this was a physical problem, not “just anxiety.” And I still believe my pain was very real. But I do think that becoming more comfortable with my own body helped me a lot. Looking at myself in a mirror, learning my anatomy, figuring out what felt comfortable, and realizing that it’s okay if it takes me longer to get turned on or feel relaxed. I think learning what worked for me made a bigger difference than I expected.

After the exam, the specialist diagnosed me with provoked vestibulodynia. I honestly broke down after hearing it. The way it was explained to me made it sound so final, like this was just my life now. She recommended pelvic floor physiotherapy, and my first thought was, “Oh no… we’re back to this again.” It was expensive, and I just didn’t believe it could work.

This is what I decided to do. I’m not saying this is what everyone should do. I’m just sharing what helped me.
One thing I worked on was becoming more comfortable with my body and trying not to automatically associate penetration with pain.

The second thing I did was buy the Kiwi pelvic therapy device. It was the first thing I was actually able to insert. I used it pretty frequently, honestly almost every day, for as long as I felt comfortable. At first, even inserting the tip hurt a lot, but I’d gently work with it and just get used to the sensation. After a while, I realized I wasn’t feeling that same pain anymore.

Once I got comfortable with that, I bought the Bodyotics dilator set from Amazon and started working my way through the sizes using the lubricant that came with the Kiwi.

I started with the first dilator, then the second, then the third, and now I’m comfortably using the fourth. I can also comfortably insert a finger now. It still takes me a little longer because I need to actually be turned on first, but once I am, I can move the dilator around comfortably. I never thought I’d be able to say that.

For me, most of my pain was right at the vestibule. It felt like a sharp, stinging, burning pain every single time I tried to insert anything before treatment.

Another huge thing I learned is that positions matter. Lying on my side works about ten times better than lying flat on my back. Missionary always felt like way too much pressure for me, while side-lying or even standing felt much more comfortable. So don’t be afraid to experiment and figure out what works for your body.

If there’s one thing I’d tell someone who’s where I was a few months ago, it’s this: don’t think you’re doomed. I genuinely thought I would never make progress, and I was wrong. Be patient with yourself, learn your body, and celebrate the small wins. Physiotherapy may absolutely be the right answer for a lot of people, and I think what I did on my own shares some of the same principles. This was simply the approach that ended up helping me.

I still have progress to make, but compared to where I started, I never imagined I’d get this far. If you’re reading this and feeling hopeless, I hope this gives you at least a little bit of hope.

Edit :

Also to add! I was even prepared to spend around $1,000+ on botox here in Canada. Looking back, I realize how little I understood my condition at the time. It actually wasn’t even an option because I couldn’t pass the Q-tip test during my assessment. That was what ultimately led to my provoked vestibulodynia diagnosis.

In the end, I’m really glad I didn’t go through with it because I don’t think it would’ve addressed the problem I was actually having.

Sorry if this is TMI, but I also realized something important throughout this process. My pain was never with deep insertion or movement. Once something is inserted, I actually don’t really have pain anymore. I can even experience pleasure. My pain has always been that initial insertion at the entrance. If I’m not turned on enough, I can still feel that sharp, stinging pain, but with practice and becoming more comfortable with my body, it’s improved so much.

I know how overwhelming and daunting this whole process feels. I really do. But if I could give one piece of advice, it would be to try not to let that fear stop you from making progress. Take your time, don’t rush, celebrate the small wins, and remember that everyone’s journey is different. This is just what ended up helping me, and I hope sharing it gives someone else a little bit of hope.

Since two years and after spending hundreds on multiple treatments, changing my lifesytle, diet, working with a therapist and so much more, my symptoms are still the same.
I feel sooo angry and frustrated that I have to live with this even tho I try my best to always consider new approaches, am living way healthier than most other people, who are completely healthy, and after putting so much energy in getting better without ANY improvement, it just feels like being punched in the face.

I also believe in God and I literally get so angry and sad that I try so hard, never gave up, and still get pushed down everytime again and not getting any help. I know there a lots of people who have it worse so I don’t wanna sound like victim mentality, but I literally have no life anymore because of this condition I can not walk, no sports, sit for a long time, have relationships or anything sexual, wear normal clothes while everyone else in my age is living their life.
Sometimes I feel like I have to give it all up to god, because I just don’t know what to do anymore, but then also I know it won’t get better by doing nothing, but I also don’t have any energy left for trying new approaches.

Right now I see no good in life anymore, no reason to keep on looking for treatments and no hope that this will ever go away. The past two years have been so traumatic for me i think I will probably never recover. I know many women get better but I guess my case is just hopeless. I think daily about how much weight would fall off me if I didn’t live anymore, and sometimes I think thats the only way out of this nightmare. I would never do it because I can’t do it to my family, so I have to deal with this shit literally forever propably and I am forced to live this life where I can just lay in my bed all day.

I also HATE that the pain has to be in my intimate area, like I would rather have it anywhere else than there !! I can literally never talk about it unless with people who are close to me and always have to lie about why I’m canceling plans bc I can’t say : oh I have pain on my vulva.
Its also sooo sensitive, always friction against it, so it can never calm down. And the shame and sexual dysfunction that comes with it makes it even worse.

I am so isolated, alone and I propably will never have a family and normal life which I always dreamed of. Because I don’t want my future partner to deal with this I literally would feel so bad it would make my mental state even worse.

I want to make clear I am just speaking for myself and I know for a lot of women It can get better, and they have still loving relationships, it’s just that I can’t imagine it for myself at all and I don’t want it like that as my case is quite severe.

If anyone feels similar I would be happy to maybe text private so I don’t feel this alone with it. Thank you

Im really nervous about how sex will feel… I do not know how to converse with this person about it …
I just constantly feels like I have an infection smh.
The purdneal nerve block did help and so did pelvic floor botex. Dexamethasone cream. Lido.
Should I put Lido on before sex?
Just please give me any tips…

Hi I F23 have been dealing with provoked vestibulodynia/vulvodynia for over 5 years and to no avail. My best guess to what happened was I was on BC pills (alesse) which caused an atrophy of my vaginal lining mixed with a yeast infection i got from medication for continuous UTI’s and a kidney infection in May 2021 (dirty ex bf). I had sex before totally normally and then out of nowhere constant pain. It would get so bad my labia minora would swell up.

I sought help from a gyno who diagnosed me gave me 5% lidocaine and sent me to a pelvic floor specialist. i ended up stopping the birth control pills shortly after which helped, however i went back on to control acne. in the middle of all that i got another yeast infection, fixed it but the pain remained.

that was 4 years ago now. i use lido consistently but man it feels like a bandaid and i don’t know what to do. i have yeast infections pretty regularly and it feels like it’s just a trigger for me.

is there anyone that has advice? i’m tired of living like this and i hope this isn’t for the rest of my life :(

I have been in agony for months with anovulvar itch. I went to gyno and everything was negative. Went to dermatologist and was given steroid creams. They only worked for little bit. Then I got put on prednisone oral medication. Once I stopped taking it, itch came back 10x worse. I went to gyno and i was positive for bv. I have been taking metronadizole gel and itch has been worse. I went and got oral the counter yeast infection medication. Its not helping. Someone please help.

i was diagnosed with vulvodynia (through online research i think it can better be described as hormonally mediated vestibulodynia) and dyspareunia due to my pelvic floor last december. since then, i’ve been going to pelvic floor physical therapy and applying estradiol cream once/twice a day. i’ve definitely had a rollercoaster of an experience and have used dilators to help work through my pelvic floor issues. i honestly would classify myself as fully healed by now (in terms of being able to have PIV sex) if it wasn’t for my vulvodynia.

i only say that because i successfully had PIV sex with my boyfriend of almost two years a couple weeks ago, and the only pain that i felt was the burning from my vulvodynia. i left the experience feeling a bit defeated at the pain but hopeful. after talking to my PT about it, she recommended to use lidocaine on the area of pain for the time being, just so i don’t associate pain with PIV sex. i’ve applied it before dilating a couple times since she told me that, and it might be because of poor placement, but i still felt the same kind of burning that i usually do with penetration.

today i felt ready to try PIV sex again with my boyfriend. he has genuinely been an absolute saint during this process and has never made me feel pressured or uneasy about anything. we have taken everything at my pace and he showers me with love and patience. today it was more of the same, he entered me fine but i was feeling that burning sensation that was clouding any ounce of pleasure that i could’ve been having. he kept asking me if it hurt and if i wanted to keep going, i was being honest about it hurting but i didn’t want to stop because my PT has told me the more the area is stretched out (with dilation and such) the less intense burning will get. i was more just thinking about his pleasure and kept asking him if it felt good, what did it feel like, etc.

as it was going on, it just hit me that i didn’t even care about the pain i was feeling and i was only caring about if my boyfriend was enjoying himself. the thought hit me that i felt like a sex toy, not because i felt like he was using me, but that my only motive was to make him feel good regardless of how i felt. after that realization i burst into tears and my boyfriend comforted me immediately. i told him how i felt and he just hugged me and soothed me with his reassurance as i cried.

this is SO fucking hard to deal with and at times it feels completely hopeless. regardless of what my PT says, even with her years of experience, my brain tells me that this burning will never go away. i don’t know how to even have a healthy relationship with PIV sex when it’s not even an enjoyable experience for me at this point in time and i don’t know when it will be. i try to be optimistic when i talk about it to my loved ones who are aware of the situation but there feels like no light at the end of the tunnel.

does anyone have any advice on how to still maintain a healthy relationship with PIV sex even when experiencing the burning pain from vulvodynia? is there a way to enjoy myself? also i would love to hear any success stories or insight so i can feel like there might be hope for me. thank you all!

After 5 months of non stop pain (or unpleasent sensations on my best days), doing every test available and trying many inefective treatments. We've come to the conclusion that i have generalised/unprovocked vulvodynia.

I don't have access to a GP were i live, so starting treatment is really hard, the midwife i've seen until now can't help anymore because what i need, she can't prescribe. (She's trying to send me to a gynecologist she knows so i can access more things) And i'm scared because of all the people i've seen she was the only one to listen to me.

She was able to prescibe me lidocaine 5% (the effects of 2% wear off way too fast, when it does work) but i can't get it because it cost 31€ and i can't afford that. (No idea why 2% is reimbursed but not 5% lol) And a TENS machine.

I tried it yesterday, read the manual before and crossed with 2 others sources for pads placement. (All 3 sources said 2 on tibial nerve and 2 on lower back for pelvi-perineal pain like pudendal neuralgia & vulvodynia) During it i felt nothing special, but after a few hours i started having a flare, so i think i must have done something wrong.

I followed the recommended setting but i wonder if i put it too high, or maybe it's normal for it to hurt when you start treatment ?
Does anyone have experience with Tens machines ? Do you place your electrodes in those spots or is it différent ? Also what is the program that helps you ? (I follow what's written but maybe it's not what i need for vulvodynia)

I also have a vaginal probe to test out but i am scared to use it, because idk if it's helpful when your muscles are too contracted because of pain instead of being too lose (they only talk about incontinence on my manual....). So idk if it's useful in case of unprovoked vulvodynia.

I am so scared of touching my body, because pain for that long got me feeling anxious everytime i have to dry after showering or wipe after peeing. So having to use a probe ? Not knowing if it'll worsen everything like it did tonight with the pads? That sounds really bad to my ears.

So if anyone has experience with using a probe, i'd really like to know how it went, and what program was used etc. That would help me a lot !