For various reasons I might end up in Toronto next year and I’m trying to get a temp check on what life could be like there if I still need to see a specialist or get PT. If anyone knows, pls lmk!

Hi all Hoping someone might have insight/ experience with estrogen cream and TTC. I was diagnosed with vulvadynia many years ago and most of my pain but it has come back after having a baby. I have been prescribed estrogen cream but have been looking at the contraindications and was wondering if anyone has fallen pregnant while using it in the maintance phase. I know you need to stop while pregnant.

Any experiences for resistant yeast? My gyne wants to do a treatment in the office tomorrow, but I’m nervous since i have vulvodynia.

I 22(F) was diagnosed with Vulvodynia today, and am mourning the life I thought I would have. I know there is a ton of information on this thread about people struggling for answers, and treatments. What I could use is people telling stories of the things they have been able to do while struggling with Vulvodynia, and what brings them joy in spite of their struggles. I just want reassurance that life doesn’t end here. Please no negativity as many people coming to this page are also struggling. I just want to spread a little hope today and I pray that everyone here finds some relief and healing in the near future.

Hi,

Hoping someone can help me here. 30F, only recently became sexually active and have been experiencing significant pain at the entrance of my vagina (burning/stinging) at any attempted penetration, and always end up with a tear at the bottom bit of the entrance to vagina - I believe the correct term is posterior fourchette? The bleeding can be enough to stain the sheets immediately after the tear, but it's not internal bleeding.

It's the same at any attempted speculum examination - I just can't go through due to severe 'nerve' type pain (sharp stinging sensation) as soon as something touches the area. It doesn't matter how long I let the tear heal for, any attempted penetration causes it to resurface. I don't experience any particular discomfort otherwise. I'm not on any birth control currently. My partner and I ensure enough lubrication, readiness etc. but nothing seems to help.

Initially I thought it was because of my lack of experience, however, it's been ongoing for months now and I'm at my wits end. What is this tear? Is it really posterior fourchette tearing or another issue? Is there something I can do to prevent it and have a normal sexual life?

Any help is appreciated. TIA.

I’ve had this happen a few times where the exact lubes, moisturizers, and barriers I’ve always used and always provided relief start irritating/burning. Then x weeks or whatever later, they’re fine again. Does this happen to anyone else and do you know why?

Lube burning makes sex a no go, so then I start looking for something to heal the skin so that lube won’t burn - Vaseline, A+D, hydrocortisone (no more vanicream 😭) are all irritating, so then I’m not sure whether to use nothing or keep at it. It’s very confusing! My working theory is microtears right now, but I would think stuff like Vaseline would be soothing…

Are there any Canadian doctors who will perform a vestibulectomy in Canada (whether through public or private)? I haven't been able to find a doctor so I assume my only options are in the US?

So I’ve been dealing with vulvodynia for about a year now. It started after a round of doxycycline and hasn’t gone away since. I’ve been treated for yeast infections, BV, and ureaplasma. I’ve been tested for every STD under the sun and all has come back negative.

Since my initial antibiotics I’ve been on a round of metro, another round of doxy and a round of azrithomycin. Ever since that round of metro I’ve gotten severe irritation between my thigh and vulva with a lot of itchiness, redness, pain and almost like a bruising?? This has been going on now since almost September. I also seem to have tiny cuts in that area of skin as well.

I thought it could be a symptom of potential LS (my doctors are still figuring out if I have this) but I can’t find anything similar online.

Has anyone ever experienced itching / redness and discoloration / bruising between their thigh and vulva? It’s always in the fold. Could this be a stubborn external yeast infection?

Just to preface I was on nystatin - triamcinelone and it didn’t help the external irritation. I’m exhausted at this point bro 😭

Hey all, I struggle with vulvodynia from reoccurring bv and yeast. My body hates antibiotics and I even think that is what caused my chronic issues. I told myself, next time I need metro gel, I’m going to try garlic- I’ve seen studies about how it is actually more effective with less side effects! Link:

Comparing the therapeutic effects of garlic tablet and oral metronidazole on bacterial vaginosis: a randomized controlled clinical trial - PubMed

I live alone and have seen other things suggested in here like ACV or peroxide douche and I’m scared to start doing these things alone at home. I’ve tried eating it orally on the past and it’s helped relive pain but wasn’t a cure. Then I found this video explaining a method of inserting garlic step by step.

https://youtu.be/UmzlePlVYag?si=YZmrjSTNW3owxigs

I ended up being way too scared to do it this way. In the video it’s suggested to sleep with it in! The comments show that people really heal from this method. I was worried something would go horribly wrong. I ended up chopping it up, waiting ten mins and with a clean finger, squishing the juice out of the pieces to wet my finger with it. I made sure there was no garlic pieces on my finger and then inserted it inside and held it for a bout a min. I figured if something goes wrong I can rinse it out. You would think this would burn but it wasn’t bad and for me I felt relief and was shocked! This was last night and I did it again this morning before work this time mixing in some water. I feel like 98% of my vestibule burning is gone.

I’m new to this method and came up with my own way I guess, time will tell if this zaps my symptoms away completely this week. The idea that this can replace metro gel for me makes me want to cry of joy.

I’ve seen people write things like “use tea tree oil!” “Acv” “home made frozen yogurt suppository” This is all to ask- when you drop your holistic method that has worked for you, please include exact instructions, mixture ratios, youre specific experiences, links to buy any other things your using, how you are disinfecting things, what to NOT do… etc. We are so sensitive and the tiniest misuse can really throw things off. Im still so scared of boric acid when my gyno suggests it, it made be bleed the first time I tried.

I’m also wondering, does anyone else have a method they’ve tried with garlic since it something seems to be working for me? Has anyone tried the sleep method where you leave it in there with a string? what kind of string do you use? I wish I could do this method with a doctor lol. Or does anyone know of over the counter garlic suppositories are a thing?

If you’ve developed your own routine with methods outside of typical treatments a gyno will give (boric, antibiotic, anti fungal) and can share a detailed step by step guide Im all ears! At this point we all have to be our own doctors and can learn from each-other.

Hey guys, I’ve been on my E/T gel for the past 9 months, and thankfully it’s helped me a lot. However back in September, I got a Bartholin cyst. I actually found and decompressed it on my own, and then went to the doctor and she said everything looked fine. She didn’t put me on any antibiotics or anything. I haven’t had one since, but flash forward to now, I have one again. I thankfully seem to catch them very early and decompress them before it gets worse. But I’m not sure why this is happening. The only thing I can think of is that I obviously apply my E/T gel to the vestibule, and maybe this is blocking the duct? Any one else experience this?

Since getting my desquamative inflammatory vaginitis dx, I’ve been using a 2.5% hydrocortisone cream nightly. It’s been really irritating, but I’m hoping that it will pass.

After one week I noticed sheets of semi opaque film in my discharge. I commonly get that texture when I have a yeast infection and always thought that it was the “cottage cheesy” yeast structures I was seeing. I’m pretty confident it’s never been part of my normal discharge, and it’s not the same as menstrual discharge.

Now I’m wondering if this is skin desquamation (peeling off)?! Does anyone have experience with this kind of discharge with DIV, yeast, or other? What helped for you?

A weekly thread to let us know how you're doing!

Feel free to share how you're feeling, how your treatment is going, or any questions that you might have about it. Anything that you're doing for the vulvodynia counts as treatment, whether it's making an appointment, seeing a specialist, self-care measures or anything else.

Hey all. I have had vulvodynia and vulvitis for a long, long time.

I have chronic pain but now, during intercourse I also experience less sensation. Could that be actually happening or am I numb because it's a mental thing. Anyone had something similar?

(I also plan on talking with my GP and also discuss medication)

I have been using the estradiol cream for 13 weeks now. Seems to be helping. Today I’m on my period, and I feel so irritated right near the entrance again. Do you think that’s from my hormones dropping? What else could it be?

Hi all! How long did it take for you to notice a difference after you started with hormones? I just started taking 100mg of progesterone nightly and Estrogen cream at night to just the vestibule. Trying to find a timeline…thanks!

I am a mess. I have both Vulvodynia and Psoriasis and I have trouble determining what is causing the irritation. This matters because I have different meds for each. When I sit too long at work, I have burning around the opening so I know that is 100% my Vulvodynia. Now I have a prickly feeling which leads to itchiness. It also feels dry so I put some a&d cream on it, but that’s not helping. This is more so around my clitoris or on my lips, not the opening. On a normal day I would think this is my psoriasis. I am super stressed because I used a very very strong vibrator (think like a massage gun) last week and now I am very uncomfortable, but not until 2 days ago so a few days later. Could I have irritated or damaged the nerves in my vagina with the vibrator. Does vulvodynia cause this itchyness / prickling feeling?

So I've been struggling with irritation and bleeding all year, basically. Managed to get the bleeding to go away as I figured out it was irritation of my vulva. I'm assuming it started with me accidentally irritating it to a bad point and it just getting to a bad point.

But the issue is, it keeps persisting, and I randomly developed some new symptoms (occasional pain in other parts of my vulva, inner thigh pain around the genital area, occasional pain if I press against something) I'm trying to figure out if it's an extension of the irritation, psychosomatic, or if I'm dealing with something else. I'm currently using vaseline to tamper irritation (which has worked, luckily! but I've heard it's not the best) but I still struggle with it coming back.

I really don't want to go back to a doctor but if I do have to I'd rather go back with some advice. I don't think it's an STI (all tests came back negative + I'm not sexually active nor have abnormal discharge)

So am I dealing with two different issues? The same issue but with new effects? Have I just anxietied myself into a corner? I doubt I have something mega serious but it keeps lurking at the back of my mind! Sometimes I'll itch and bam! Pain's gone. Am I going crazy?

I saw one of the top specialists in the field and have been on a treatment regimen for DIV (Desquamative Inflammatory Vaginitis) and Hormonally mediated vestibulodynia for 7 months and I literally feel worse. I've been having symptoms of burning externally and internal vaginitis for literally months now, have treated for yeast infections twice now and i am still in pain. I am on estrogen/ testosterone gel for the HM vulvodynia and estrogen / hydrocortisone internally for the DIV. My pain was basically provoked and now is unprovoked. I don't know what to do. At the point where I want to stop everything for a few weeks/ month and see if my pain lessens.

Hi there! I'm scheduled for a vestibulectomy with Dr. Rachel Rubin early next year, but I'm having some last-minute anxiety attacks, and I would love some other opinions. Here's my timeline:

1. I've had pain with sex since I became sexually active at 17 years old. It took me a year to successfully achieve penetration, and it was immensely painful. I had never struggled with tampons, but fingers and basically anything else really hurt. I also couldn't orgasm with a partner nor with my own hands.
2. Between the ages of 18-25, I had penetrative sex with a few random hookups and a boyfriend who I dated for about 10 months. It was almost always extremely painful, both internally and at the entrance. I also developed a UTI *every single time I had penetrative sex*, and I started developing UTIs even when I hadn't had sex. I just thought that's what sex what's supposed to be like and it was my responsibility to put out. I think there were maybe 4 times in total that I had penetrative sex with my boyfriend when it didn't hurt (although it didn't necessarily feel good, either).
3. I thought I had vaginismus, and I started looking into pelvic floor PT. I started PT and dilators when I was 23 and did it for about 2 years. I had a wonderful and reassuring PT who helped reduce some of the muscular pain, and I gained better control of my pelvic floor muscles. But I still had tremendous pain at the entrance of the vagina. Felt like carpet burn. After so many years of painful sex and no relief, I gave up on sex and intimacy altogether. Couldn't be touched by a partner. Couldn't make myself orgasm. Libido tanked. Confidence tanked. Retreated into myself.
4. My PT basically told me I had gone as far as I could with PT. If I was still experiencing pain, I should connect with a specialist. She referred me to Rachel Rubin (ironically, it was also the same month Rubin's NYT article came out). I booked an appointment with Rubin (8-month waiting list).
5. Within 10 minutes of being checked out by Rubin, she surmised it was neuroproliferative vestibulodynia (reasons being I struggled since I became sexually active; I had belly button sensitivity; I had been on birth control for, like, four months when I was 18 and that was it). All these years of pain and she had an answer immediately! It was amazing! She also discovered that my clitoris was entirely covered by the clitoral hood.
6. She started me on vaginal estrogen gel to see if it made a difference. Six months after using the estrogen, I came back for a VAT test. Estrogen wasn't working. I also tried using over-the-counter lidocaine, but it stung really bad for 10 minutes before it actually numbed the vestibule area. It didn't feel like a long-term solution.
7. She also did a clitoral adhesion removal (scary and emotional, tbh). After, I could orgasm using my hands for the first time ever.
8. She ordered a lumbar spine MRI to rule out anything in my lower back. MRI came back normal. Did another VAT test, and we decided to move forward with vestibulectomy.

Although I do feel confident it's the right decision, and I'm so grateful for Dr. Rubin, are we moving forward with the vestibulectomy too early? Are there other vestibulodynia solutions you think I should have explored with her before scheduling a vestibulectomy?

Please refer to my story in the posts. I literally have had every test multiple times. Urine, yeast, BV, microbes, stis, biopsy, test for hsv, pap. The only thing I ever tested positive for is 89% lac cripetas (the rest was normal) and on a culture done by the doctor I tested positive for KP and Ecoli. Twice for ecoli in urine and lots of bleeding. I took the meds they did not do anything. Ive done so many medications, abx, cream, inserts. This has been going on for a year after having protected sex with a friend who is clean. Symptoms are daily: Redness, itch (not insane), UTI like symptoms (burning or feeling like I still need to pee after the fact), bloating, chills at times, lower belly discomfort at times, my discharge is copious its color is white/yellow/grey. (I dont have BV) I have back pain at times and hypertonic floor issues because of all this !!!! But thats not the reason for all this !!!!!! (PF) My vagina ph is normal 4ish.

I am thinking this is either PID, embedded uti or ….. I don’t know.

Ive seen gyne 4 times, FP so many times its embarrassing, walkin doctor, sti doctor three times, I was emerg x 2 and bc of my persistence I did get a referral to Infectious disease who isnt sure. I go back to see her Jan 20th bc she was unable to do a pelvic at the time based on be being in my period. She did get me to swab for ureaplasma and myoplasma, which ai already had done and pretty sure they were negative. But I took the treatment anyways.

There is literally something wrong and I don’t know what it is. Im sick of thinking about it and obsessing. Im sick of feeling of uncomfortable. I cannot have sex either because afterwards it burns so bad to pee I feel like I could die.

I haven’t tried since the last time bit Ive used vibrators and the burning shit happens.

I also had a ct to rule out PCS as well as an ultrasound sound on my bladder. They were suppose to scan my kidneys and never did.

Any suggestions??????

Been dealing with this for over 3 years. finally was able to get my hormones tested and everything came back good my doctor wanted me to do a transvaginal ultrasound, but I wasn’t able to because of my insurance. But I did tell my doctor that I tore agian same same area even though I’ve been on this hormone cream and she told me that I shouldn’t be tearing anymore so she asked me a question about if I was ever SA. I told her yes and she made the connection that she thinks that from my assault is the reason why I’m tearing in vaginal opening.

She thinks I’m holding onto a lot of stress in my pelvic floor and when I try to have sex, I’m holding the tension there which causes me to tear every time.When she did my examination she said I was very tight and need to relax.I never tore until I was raped. I never thought to put the trauma together, but I think it could be the cause because I am able to dilate with dilators but having sex with an actually penis hurts to much.

I’m now on Celxa an antidepressant she thinks this will help and relax me if I do try to have sex and she wants me to see a sexual therapists. Has anyone been put on antidepressants to help.

i’ve been on 50mg of amitriptyline for 12 weeks now and noticed no relief so my doctor told me to start taking 100mg a night for 3 more months and see where we are at. My other doctor recommended Cymbalta and told me she’d send a script. Idk if i’m being too impatient with amitriptyline but i feel like i would have noticed a difference by now! has anyone needed a really high does of amitriptyline?

Burning and pain

Hi everyone this is hard to share but I have no idea what to do.

I recently got a new partner(1 month) And I’ve only been with one other guy before who I know was clean and my new partner tested earlier this year as clean(hasn’t been with anyone since)

I’ve had an incredibly painful vagina since our last time having sex. I have a few red bumps around the bottom of the opening and to the side and it’s very red an swollen, and feels like burning and is very itchy.

Doctors here are so bad and won’t see me for an appointment till next year really. So I’m between booking a very expensive private doctor/gynae sexual health, or just going to a and e (I’m based in the uk) I think I might just go to the hospital tomorrow, but I’m not sure what to do, do they even take you in? When I say I’m in incredible pain, I mean I can’t walk without crying, it’s incredibly sore. And I have no idea what to do. Please advise if you can, it started about 1-2 days after sex so I’m pretty convinced they are related. (100%)

Hey everyone, I’m wondering if there are folks with wisdom about premenopausal estrogen.

I’m 26F, started having sex just 7 months ago, and immediately had a series of UTIs and yeast infections that eventually blurred into unprovoked general vulvodynia. This week diagnosed with desquamative inflammatory vaginitis.

When I started having pain outside of infections, I started seeing a pelvic floor PT, did all the yeast lifestyle changes, and also started using topical estradiol. I was taking spironolactone, an antiandrogen, to treat my hormonal (suspected PCOS linked) acne. My doctors suspected that spir was decreasing my estrogen local to my vulvar tissue despite healthy serum levels, and thought estradiol could help us decide if I would discontinue that drug.

I used it externally on my vulva only every day for a week, and then biweekly for just over month. My vulvar pain stopped about 4 weeks after I started. However, I also had two really heavy periods - nausea and faint feeling while bleeding heavily, and two week long PMS that made me really anxious/insecure. It came out of nowhere. I wondered if PT was making the difference for my pain, and stopped taking estradiol. Within a month, my pain came back to daily, and my last period was back to being tolerable. Two weeks ago I stopped taking spironolactone and am hoping over time, higher testosterone will lead to higher estrogen

All my doctors say that topical estradiol should not have systemic effects at such a low dosage. I would like to use estradiol again as it’s a first line treatment for DIV, and it helped in the past! Has anyone else experienced these symptoms in premenopause?

I’m also just curious. When I was first prescribed spir, I was on 100 mg/day which cut my menstrual cycle from 36 days to 14. Since ovulation can’t happen that fast, I stepped my dose down to 25mg/day, the “lowest effective dose.” Since estrogen accumulation is necessary for ovulation, I’ve assumed that spir had impacted my estrogen so severely that my body never had enough to trigger a cycle. What does it mean about my body if I can’t tolerate high doses spironolactone or topical estradiol?

Further, if anyone has experience dosing estradiol during premenopause to avoid estrogen dominance/imbalance, I would be interesting in trying out a cycle-based dosage plan that could help my DIV/vulvodynia without causing bad side effects.

Currently only meds using (E/T cream) For reference the peeling is in mucosa not external

Hi all,

I've been dealing with this condition for about 6 months (maybe longer but its only been severe recently) and unfortunately I happened to also be uninsured during that time. I started a new job and should have insurance back next month.

However, I'm really concerned that I still won't be able to pay for the care that I need as I have low income. Without going into all my health details, I believe that a hormone cream & pelvic floor therapy are my best options right now, and that's what I want to try.

I'm in the process of choosing my healthcare plan at work - I'm very blessed to have many to choose from. Do you folks have any tips on what to look for in the plan details to make sure these treatments would have decent coverage? (I'm in the US.) Any other tips on navigating insurance/our fcked up healthcare system as it pertains to female health is very much welcome!

My nightmare is that I would take on an expensive monthly premium only to find out that I still can't afford healthcare for this condition, and am stuck with it for another year. Any advice is appreciated <3

My vestibule in getting better with amitriptyline may be it will perfectly cure one day . But my vestibule skin is not heal yet from one year . Its tiny cuts or peeling of skin .sometimes white discharge also . I already took so many antifungal Antibiotics antivirals whole year .what can I do for skin healing ?

Has anyone been prescribed this?

I have not been diagnosed with vulvodynia, but it’s been discussed repeatedly as a possible cause of my symptoms. My symptoms include: Hyperawareness/hypersensitivity of the genitals (mainly clitoris), burning/tearing sensations at the opening with penetration/insertion/arousal.

I also struggle with odor and discharge, but I’ve been told those are just my new normal.

I’ve failed all attempted treatments. Including: Five months of weekly pelvic floor PT, amitriptyline (oral), estrogen/testosterone gel, topical lidocaine, topical gabapentin, montelukast. Nothing has even provided relief.

At my follow up visit today, I was encouraged to try taking histamines like Zyrtec or similar. Additionally, I was prescribed a compounded gel of Cromolyn and Amitriptyline, but I received a call from the specialty pharmacy notifying me that for 45g it will be $230.

Has anyone else been prescribed this compounded gel? Or even either medications separately in topical form? I haven’t yet messaged the doctor to see what other options I’d have that may be cheaper, but I wanted to see if anyone has had success with this treatment.

Thank you!