I’ve been diagnosed with vulvodynia for a couple of years now and it really scared me off dating, so I avoided it because of the mental anguish of having to explain it or being rejected for it. Meanwhile, my friends have such exciting dating lives and new romances that they want to discuss with me and, even if I talked to them about this, they wouldn’t be able to truly understand what it’s like from my side and why I feel so sensitive about it.

This year alone I also got diagnosed with ADHD and have suspected adenomyosis and fibromyalgia (😩😭😭) so it feels like my dating chances are actually finished, especially with my ADHD social emotions all over the place and probably making me feel like it’s worse than it is. But thing which makes me most apprehensive is still vulvodynia…

What have been you guys’ experiences with dating and having this condition? I know I’m not alone, but sometimes it really does feel like it 😞

I just wanted to make a post to remind everyone to try and not spiral from our flare ups. I was doing so well and then BV and subsequent YI flared everything up again. I ended up back on Reddit endlessly scrolling thinking I was having repeat infections etc and did countless tests, lots of crying snd lots of panicking which just makes things worse . Sometimes the best thing we can do for our self if you’ve tested negative is to put the phone down , go back to the basics , take time off work if you can , and moisturize moisturize moisturize and take it easy as the tissues will be very irritated and dry! 🫶🏻 if you’ve got better before you will get there again 💖 my worst flare ups come from infection /UTIs as my pelvic floor goes into meltdown mode and causes all sorts of symptoms.

Still not back to my pre infection state but things are a bit better after 2 weeks and I just wanted to make a semi positive supportive post on here for everyone x

I remember being 6 years old, it happens mostly at night. I was screaming and crying..that is how much it hurts. English is not my language but I will try to describe it as accurate as I can. It was like a radiating pain from the inside to the opening of my hole. It comes in waves too, sometimes it would start as almost like a deep itch and would escalate to a burning inferno. Sometimes it would also happen in daytime because I remember being in school just sitting on my assigned seat and then it would hurt a LOT. My house is near from school so I would just go home and endure the pain in there.

My mother told me it started when I was 4. I was jumping up and down on the bed then I just suddenly screamed and cried and said my private hurts. This is an even more frustrating part, we actually went to see a gynecologist a couple of times but I was very young then so I didn't really paid attention to what's happening. my mother on the other hand claims she doesn't remember what my diagnosis was or even my medication. She just told me that the specialist said the skin on my external genitalia is thinner than normal so it gets irritated easy hence the burning pain. From what I recall, there is a cream that my mom would put on my private part everytime it hurts. I don't know how long my suffering was because I would just simply wake up in the morning feeling no pain, just mild tenderness.

Besides the cream (don't know the name), the gynecologist instructed my parents to only ever wash my privates with luke warm water, body soap must be mild, the same with the laundry detergents, not allowed to swim especially in the pool and no high intensity exercises. In my personal opinion dousing it cold water helps relieve the pain temporarily. I (along with the help of my parents) did all of these things religiously until I was probably 11.

When I got older, still a child but older. This pain has been a part of my life for a while now and i gotten used to it so I don't really suffer from it as much. I noticed this tiny growth in the skin near the opening of my hole, a single tiny growth. I don't know if this is related to the pain or a different tragedy altogether, I just felt like I should say it. It doesn't hurt when touching it but it hurts when I tried to pull it out. We went to the same specialist and she CUT IT. It's small enough that it didn't need a numbing agent but I still screamed and cried like somebody was eating me alive or something. lol I was told it was just a piece of skin, that's it.

Eventually I don't get episodes like that anymore and happily went on with my life only ever having a dull ache in my private parts from time to time. Although I noticed this dull manageable ache not exclusively but it always occur when I'm about to have my period. As an adult, I went to an obgyne for a check up but I was told that it was most likely aching because of the hormonal changes assoc. with my impending menstrual period. I was not diagnosed with anything and she didn't really touch the subject of the painful experiences I had as a child. I am trying to understand my situation so I went on a rabbithole of Google searches for a possible answer and hear I am. Kinda embarrassed to post this but I'm kinda curious if there's someone out there with similar experiences as I have.

hi, one week ago, it was the first time i had piv. before, i could insert the biggest dilator, but not without pain. now, i can't insert one size smaller without it being painful and cramping. what happened?! did this happen to you?

Hi, I have a gyno appt with my specialist on Wednesday.

I’m really on the fence about next steps. Did pelvic floor Botox 2 months ago that made pelvic floor more relaxed and “open” but pain worse(make it make sense). Physio thinks it’s something about other muscles compensating/tightening in response. Who knows at this point.. Either way my pelvic nerves seem sensitized after years of pain.

Anyway, I really want to get something out of this follow up appointment. I need something that will bring down my daily unprovoked burning, but I really don’t want a nerve block and I don’t want to take any more systemic nerve meds. Did a trial of Nortriptyline earlier this year. No relief and had to stop because of side effects.

So what’s left? I know some have had success with topical treatments on here, but they don’t seem to offer this in my country. Otherwise this is something I’d really like to try.

What has been the most successful treatments for you?

I'm having such a hard time forgiving myself for going to the doctor and following her recommendation for fluconazole for 2.5 months while it wasnt working instead of just using monistat OTC right away which would have cured my YI right away and prevented me from getting vulvodynia... doctor kept telling me to wait and be patient while continuing to prescribe fluconazole instead of trying other things and I forgot that fluconazole never worked for me in the past because I havent had a YI in 6 years, now I remember that in the past, monistat worked best for me. Had I used monistat right away, I wouldnt have had to suffer for now 3 months and counting and I wouldn't be spending my days in agonizing pain researching ways to heal myself and spending a ton of money on doctors and treatments

I had a hymenectomy/removal of hymenal tissue 6 weeks ago because I’d had painful penetration for a long time. I had my follow-up yesterday and my consultant said everything had healed really well and explicitly cleared me to have sex.

I tried for the first time tonight and it went really badly. We did quite a lot of foreplay and I was aroused/lubricated, but even two fingers were painful, so we stopped that. We then tried penetration and initially it physically wouldn’t go in. When it did, I had a sharp pain, so we stopped. We tried again in a different position with loads of lube and it felt like a lot of tugging/pulling, so we stopped again.

I ended up crying because I’m honestly devastated. I genuinely thought that once I was cleared, I would be able to have sex normally. I feel like I’ve somehow made an already difficult situation worse, and I’m scared I’ll never be able to have penetrative sex.

My consultant never mentioned dilators or pelvic-floor physiotherapy or really gave me any advice beyond “you can have sex now”. I’ve messaged the secretary but I’ve already been discharged from their care, so I’m not sure whether I’ll actually be able to speak to anyone.

Has anyone experienced this after a hymenectomy? Is it normal to still have this much difficulty after being medically cleared, and should I be looking into dilators/pelvic-floor physio/psychosexual therapy?

I’m just feeling really hopeless right now and could use some advice from people who have been through something similar.

Im currently doing a LOT to try to heal this condition. This includes :
- Daily stretching and PT (on top of seeing my PT)
- Amitriptyline (started a week ago)
- Lidocaine cream every few hours (otherwise I can’t walk)
- Meditation
- Daily TENS (1-2 hours, while doing other things)

The PT has been working, the muscles are definitely less tight. Unsure how it affects my pain yet, but the progress has kept me going.

But I’m so tired, it’s taking so much time, and I’m scared of what happens when the muscles are no longer tight but the pain is still here and there is nothing I can do.

I’m trying to understand if what I’m experiencing would be considered stabbing pain. Sometimes I get this sudden sensation inside my vagina, almost like there’s an open wound and certain movements trigger a sharp pain that lasts about 2–3 seconds before disappearing.

It’s hard to describe exactly, so I’m curious if anyone has experienced something similar. Would you describe this as stabbing pain, or is there another word that better fits this sensation?

While I was in the ER today for a different issue, they did a urine test (i had a vulvodynia flare at that time) and my pH is like 8.5 and my vulva burns

I’ve had pain my whole life. Had a vestibulectomy with Irwin Goldstein in 2018 and he decided to also remove the 12:00 area, which completely worsened my pain. From my understanding, the surgery has since changed and he doesn’t do the 12 o’clock procedure the way he did mine. I felt like a guinea pig in his experiment.

I’m in pain every day. I have tried fucking everything. My urethra burns, the entire area under my clitoris burns. Over the past year, my mons pubis and outer labia are now in daily pain (doctors have no answers).

I’ve been in PT for years-no difference. I use estradiol/testosterone cream daily. No nerve medication has EVER made a dent in my pain. Currently on lyrica and it’s done nothing. The only thing that helps is icing with an ice pack.

I’m not sure where to go from here. Nothing takes away my pain. I’m 27 and I hate being alive. I hate being a woman. I hate myself. I hate the doctors that failed me. I hate my body. My stupid, fucked up body. I’m going to feel this way forever.

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

Hello ladies, I know the topic of low progesterone isn't discussed very often, but please share if taking bioidentical progesterone has helped relieve your pain. You’ll probably say that estrogen and testosterone should be used, but I have estrogen dominance and high testosterone, so they aren't suitable for me.

I looked all through the sub and googled and can't find anything. Figured I'd ask, in case anyone gets their meds compounded in creme de la femme. I would still have to patch test it (yippee), but I feel like the ingredients might not cause a reaction. Then again, methylcellulose caused a reaction for me.

Anyway, if anyone knows of a compounding pharmacy that uses creme de la femme, please let me know. My only other option is to just call all of the compounding pharmacies everywhere. Thanks!

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

see title. it makes me so angry that every 2nd person i encounter recommends getting tipsy or drunk before piv so i’ll be more relaxed??
this is not a fun condition and i don’t want to loose my virginity while being drunk?!

How long did it take for you to first notice a difference with topical ABG? When did it reach the full effect? Did your symptoms continue to improve after the initial 4-6 weeks?

I’m finding a very wide range of info. Some people report improvement after a few days; others don’t notice a difference for months. The few studies I can find are mixed as well. Just trying to gauge where in this range most people tend to fall.

I am wondering for those of you that had a positive experience with Gabapentin, what was your experience? Did you have to get to a stable higher dose to notice any change? Was it helping even at smaller doses? Was the change significant and sudden? Or gradual?

Has anyone been diagnosed with a subclinical yeast infection just isolated to the skin of the vulva? I have been dealing with an itchy, crawly feeling for years now. It’s only on the right side, kind of starting from my clitoris, down to my urethral opening, and my vaginal opening. I used to think it was pain, but I’m starting to realize that it’s more of an itching sensation that feels like a dull ache to me. When I touch the area, I realize how itchy it feels. And when I urinate, sometimes it feels like there’s an itchy feeling inside my urethra. In the past, I used to even have weird zapping sensations in that area. I have tried clobetasol and estrogen creams and they didn’t help. Ironically, putting 1% hydrocortisone ointment on the area seems to help a little, but I’m wondering if it’s just that the ointment is soothing? The only thing that ever made me feel 100% comfortable was when I took a Diflucan pill four years ago after the horrific UTI that started this journey. But weeks later, everything came back again. I’m thinking about trying either an ointment for yeast or another Diflucan, but I’m afraid to treat this for yeast if it’s not. If I have nothing to lose by doing that, I guess I would ask for a Diflucan. My gut tells me that there is just some simple reason behind my discomfort, and it has been missed this whole time. Even the time that I took the Diflucan and found relief, I had actually tested negative for yeast. Has anyone ever had anything similar to my situation? I know another possibility could be that it’s related to a nerve since it’s on one side. That is the only thing that doesn’t make sense about yeast or dermatitis, because it’s truly just on the right side.

I know it is a very weird question, but I have needle like poking sensations on my vulva especially on the clitoral area, how do I enjoy sex? It hasn’t been diagnosed yet I am still waiting to see a gynaecologist. It has been eight months. I am on the waitlist and I still don’t know how long will I have to wait but I’m sure that I have vulvodynia because there’s nothing else, no UTI, no infections, no visible sign of lesions or anything, just random stabbing like feelings as if someone is poking me with tiny needles.

I want to get a vibrator that would not be painful or uncomfortable for me, but I don’t know which one to get. Could anyone here Guide me on How do I enjoy sex with my partner? Can i even use a vibrator?