I have hypertonic pelvic floor muscles. I’ve been doing good in PFT for 5 months but everytime my period comes it’s back to severe burning!!! Why does this happen?!

Does anyone have vulvodynia or sensitive/pain on their clitoris ? If so, is sex still possible for you. Also any tips and positions that are helpful. Thanks

I am currently undergoing CBT therapy and doing pelvic floor therapy sessions twice a week. The professionals I work with primarily use massages, vibrators, and radiotherapy.

I’ve identified three types of internal vulvar pain: stretching pain (similar to when a muscle is overstretched), trigger point pain, and nerve pain (the kind that hurts regardless of pressure). Additionally, I experience clitorodynia and occasional burning sensations.

I’d love to hear what has worked best for you in managing these symptoms. I’ve had four sessions so far, but I don’t feel like I’m seeing short-term improvement. Any recommendations are welcome.

P.S. I also had vaginal Botox, but I don’t think it made much of a difference.

Hello all,

I’ve been an avid poster on many subs here on Reddit with regard to my vagina issues! This started about a year and some months ago and I have had constant symptoms since. 🙃

The last time I posted about my situation, I had about 3 to 4 females send me a reply with regards to their struggles with DIV and how I sounded quite similar.

Well, I went to infectious disease two days ago. They said I did not have an infection. I do not have an STD and she believes that I have DIV / inflammatory vaginitis. This was without me, mentioning the idea of DIV at all.

She stated that I’m irritated on the ball by irritated on the labia and irritated inside as well on the wall of my inner vagina!! Which I was actually shocked about sort of … shocked because no doctor has said that I looked irritated inside prior to her and I’ve had multiple pelvic exams. But also not shocked because I feel irritated inside and I cannot insert anything without feeling discomfort.

I cannot do the clindamycin inserts because I reacted poorly to them in the past. However, we are going to do the hydrocortisone inserts every day for four weeks and then every couple days for two weeks and then reassess.

She stated that I could use clobetasol for the outside, but I didn’t want to do that because I used clob before (short term, I didnt stick with it:/ bc my skin is already irritated!) and I just feel like my skin needs a break.

So we decided to use a hydrocortisone on the external skin with a higher percentage which I’ve had success with the 2% compounded.

I really feel a little hopeful. I hope this is the answer guys.

Just got a PCR microbiome test back (VIKOR labs done by my gyno): 90% L. iners and 10% E. coli.

Background

• hormonally mediated vestibuldynia,
• recurrent yeast,
• suspected contact dermatitis to topicals,
• desquamative inflammatory vaginitis (DIV)

First of all how can my microbiome be only two organisms? I know that chronic inflammation makes for inhospitable microbiome, but seriously?

I’m not concerned about E. coli - it’s an aerobic opportunist that is common with DIV, comes from your rectum, is out competed when lower pH and inflammation is achieved.

L. iners is a bacteria that colonizes unstable microbiomes, and as an overgrowth can be associated with low pH like 3.0-4.0 (cytolytic vaginosis [CV]). DIV is associated with high pH (5.0+). I am always 4.5, rarely 5.0. I thought DIV was a stretch, but how can I have CV and DIV both?!

My doctor called in the antibiotic Levofloxacin, which I’ve never heard of before. Any experiences with this? I know that antibiotics can also trigger unwanted microbiome and inflammatory responses. It would suck to take it, for my pH to stay high and for my vagina to be recolonized by more opportunistic pathogens and have more problems to deal with.

I have been taking 40 CFU Garden of Life oral probiotics and am wary of intravaginal probiotics BECAUSE of risk of CV.

Hi! :) My doctor has prescribed me a compounded amitriptyline cream to apply it to the vestibule area before going to bed. I was wondering if I should use it even during my period (it usually last 5 days, with a heavy flow only for the first three days).

Given the blood and fluid already present on the vaginal tissue, and always flowing, I don't think the cream will be absorbed properly (as it happen with antimycotic creams during menstruation), but I'm not sure about it. What do you think?

Thanks in advance :)

Hi everyone,

I have a long story, but basically I have struggled with a chronic itching sensation around my urethra for as long as I can remember. I was diagnosed with congenital neuroproliferative vestibuldynia by Dr. Andrew Goldstein and had surgery for it in August. Before surgery, we did the VAT test, which didn't relieve my pain. Dr. Goldstein explained that having 24/7 pain my whole life has caused my brain to form these pain pathways that will take a long time to rewire. After surgery, the pathology showed I had extensive neuroproliferation, but I had no relief. I was told it could take as long as a year for my brain to rewire.

I see a therapist to help deal with the emotional aspect of living in 24/7 pain, and she recommended I see a neurologist near me that specializes in ketamine therapy. The neurologist explained that ketamine could potentially help shake up my brain enough to help it rewire. I also have bladder issues caused by endometriosis, so we also have to be careful and monitor how my bladder-pain reacts to the drug, since overuse can lead to interstitial cystitis.

I had my first session yesterday. It was an interesting experience. I could still feel my symptoms the whole time—but it was a neutral sensation. I wasn't bothered by it and I could just sit with it. My neurologist gave me some mindful meditation exercises to practice, and he wants to try to double the dose next week to see if we can get to a place where I don't feel any symptoms during the session.

Honestly, I'm still skeptical about the whole thing. But I just had a consult with Irwin Goldstein. My next steps are either to remove the 12 o'clock and periurethral glands, or to check for Tarlov cysts—either way, I'm looking at more invasive surgery. So this seems like a way easier thing to at least try first. Happy to keep the group updated with my experience if anyone is interested.

I've struggle with this since 8months after having UTIs due to a new relationship.. I'm on Cymbalta (3weeks) now. The bruning pain got a bit better.. but misfeeling is still there and I can't take my mind off it.. :(

Is there anyone who got cured after a similar story as mine? need some positive toughts and hope.. Has someone tried a Mind-Body/ TMS approche?

thank you so so much.

Procedure 1/22. On obturator internus muscle. Now feel burn in the 12 o'clock (clitoris) area. Seeing my MD again in a month. Doing stretches daily in hopes to improve symptoms.

Nothing magical happened yet. Anyone experienced Botox injections? My first time.

hi guys, TW : my first time posting on here lol. I came to reddit looking for answers and i found this community which makes me feel heard, i spent years thinking i was the only girl in the world suffering through this. I’ve had vaginal pains and issues since i was nine years old, im currently 20 and struggling worse than ever. I still haven’t been exactly diagnosed, whether it’s vulvodynia or vestibulodynia. I’m coming on here to share my feelings i don’t know who else to speak to that has gone through this, i’m feeling hopeless and slightly like unaliving.. please any tips or success stories ?? to add on to the suffering, i’m currently on my period and i can’t even wear a pad or underwear thankfully im off of work today and tomorrow so i am in bed laying over a towel, can it get any worse ?? lol this is the worst thing ive ever gone through and i have yet to find a solution.. painkillers don’t work lidocaine cream doesn’t work, im currently in pelvic floor therapy but i just started this month so i cant rlly say it has helped yet, especially during this flare up im having today…

In a nutshell

• 7 months of burning
• gynaecologist diagnosed yeast despite swabs coming back negative
• fluconazole 100 daily since October
• various vaginal treatments including nilstat, canesten cream, canesten suppositories, boric acid, amp b
• Juno results negative for candida and positive of malassezia restricta (only slightly elevated but it’s still there).
• I’m doing all the usually “yeast infection” suggestions (cotton underwear, probiotics, oil of oregano, the list goes on).
• perimenopausal but no MHT at the moment.

I saw the gyno before I got the Juno results. She prescribed Amitriptyline cream thinking it’s now nerve damage. But now I’m burning in the vestibule area and have white discharge again. I’m unsure if I should use the amitriptyline or if it’s the malassezia causing the symptoms. No point using a yeast treatment again as they don’t work against malassezia. I was thinking of using vaginal probiotic suppositories to crowd out the bad with some good - currently have quite high good bacteria but not diverse. I’ve got another Juno on its way to me, a naturopath appointment next week and a gynaecologist appointment the week after.

No AV in this Juno - if you’ve read my previous posts. Suggestions? Thought? Miracles?

Has anyone tried both amitriptyline and nortriptyline who could compare their difference in treating their vulvodynia and as well as in their side effects?

I’m discouraged… For months now, every time I have sex with my boyfriend, I feel a burning sensation at the entrance and inside my vagina, like fire. It happens during and after penetration. It’s unbearable. I don’t have a bacterial infection or vaginitis, nothing like that. My doctor doesn’t understand the cause of my pain. I’m discouraged, and it’s really affecting my mental health…

I have been fighting and treating a yeast infection for 3 months. Out of 90 days maybe 10 of them I haven’t had some kind of cream or boric acid in my vagina. I just finished Amphotericin b suppositories last night that I did for two weeks after I did two weeks of boric acid and also monistat, clotrimazole, and diflucan. I was positive for glabrata 4 times!

Idk if the Amphotericin worked bc when I started it it caused increased burning that I had the ENTIRE TIME.

My question is, can burning and irritation/stinging linger after doing such aggressive treatments? One of the cultures said “few yeast” idk why my symptoms are so bad. No itching. It just BURNS so bad. I had ureaplasma that I treated at the same time and I tested negative 3 weeks later.

2 years ago I got a yeast infection from antibiotics. Since then my skin is inflammed and raw. Its mostly the labia minora. I've seen so many doctors and noone could help me.

I've tryed like 10 different cortisone creams, estrogene creme, antifungal cremes, vaginal antibiotics, lactic acid... Nothing helped. My last idea was that my pelvic floor may be cramping from the pain and is not giving it enough blood to heal or so. But it hasnt healed even a bit since over a year.

Has anyone any idea what else I could try? I'm at rock bottom... The pain has destroyed my nervous system and made me so chronic ill I lost everything. I cant even stand up anymore without fainting. I rly need help

I have had Vulvodynia for 6 years since last spring I have not been able to wear jeans which I love them I can only wear skirts and leggings and/ or only wear the jeans for a short time. I’ve tried to use bike shorts underneath and that doesn’t seem to help so idk what to do

Hey all.

I got diagnosed earlier this month w/ PFD + vulvodynia & vagismus. I’ve been seeing a wonderful PFPT since early January & she’s been great. I’ve had sex 3 times since the diagnosis w no issues. However, i had sex for the first time in 1.5 weeks last night (finished being sick and on my period). We used a lube that was recommended and it BURNED so bad. Now today I’m having an awful flare up. It hurts so bad when I pee.

I have OCD and my brain tells me that somethings wrong & I actually don’t have vulvodynia, I have some infection that couldn’t be found, and it’ll never get better. (To give context, I have had BW, 2 ultrasounds, gyno exam, countless urine tests, etc). Please do not comment saying it could be an infection bc it triggers my OCD really bad.

I just need to vent. I want support. I feel like I’ll never have a good life again. Can anyone tell me if it will get better? I’m in recovery but have never felt so close to a relapse in my life.

I had a diagnosis with provoked vulvodynia about 14 years ago - penetrative sex has always been very difficult for me. I had various treatments at the time but nothing was particularly effective. I'm now thinking about going back to my doctor and starting again, however one thing I'm struggling with is I had a traumatic PT experience. I found it brutal and very difficult and I ended up stopping after a few sessions. I was wondering if anyone was willing to share what a positive PT experience would look like?

supposedly 100% natural fiber, undyed, unbleached, hypo allergenic. Not super expensive.

As part of finding treatments I’ve been trying to describe where it hurts but does anyone else find this elusive?

My vestibule for sure. around my urethra and vaginal opening can hurt sharply to the touch. But also be unprovoked, in an achey way.

My labia minora hurt when they get dry or I wear more rigid pants. I had an epidermal cyst on one labia and it was a bitch. Sometimes I even wonder if the hood of my clit is sore.

When I pee it hurts as I release my pelvic floor, but only around my urethra. Sometimes this area pulses pain at different times in the day. OTC Azo pain meds for UTI didn’t touch it all. I’ve done PFPT, but don’t know how urethral muscles can be accessed.

Deep pain/discomfort with sex at very specific angles which I think is just my rectum, bladder, or cervix not wanting to be involved. No doctor is alarmed about this.

Intravaginal pain when I have an inflammation flare from DIV (diagnosed). But this pain is even hard to pin point as it’s all close to my bladder, urethra, vestibule!

I tested positive with the QTip test, but not sure where. I just want to be able to represent all this well to doctors. I’m afraid they’re missing something as I keep not getting better :/ Any advice?

I think I have been struggling with vulvyodina and I do not know who to turn to. I am a college student and all of this started after I wore a period thong. I wore it, took it nap, and when I woke up my period cane in pretty heavy. I felt a little itching on my vulva but this isn’t uncommon for me during my period and usually goes away at the end and certainly just a usual pms symptom. However this time it did not resolve after a shower and it persisted to the point of burning and swelling. My vag was red and itchy and nothing helped other than ice. I went to urgent care where they diagnosed me with a UTI and treated me with macrobid.

I am uncertain as to whether it was the macrobid or my period ending that stopped the itching. But it soon came back before my next period and during. I started having random twinges, shocks, feeling of burning and itching that felt like it was under the skin. I would check to see if I had a fissures or sores or anything despite urgent care telling me it wasn’t hsv or an std. I have some of the same symptoms in my thighs and anus and the pain usually ramps up in the days before my period, during and goes away with my period. I have these symptoms whether or not I have a yeast infection or bv. sex also feels like blades and has become increasingly painful as I can help but tense up. Even without the pain I’m more tense and it takes a while to even get it in. I’ve went to planned parenthood but they keep telling me it’s yeast or bv and when i use the bv gel, it BURNS and doesn’t help. I’ve been examined multiple times and there are no sores, cuts or anything to swab so i understand why they think it’s one of the two.

I don’t know who to turn to anymore and I don’t think this is in the right caliber for medical services at my school. My symptoms also line up with DIV, Aerobic Vaginitis, and Atrophic Vaginitis. However, The absence of smelly discharge and weird discharge along with pain seem to line up best with vulvyodina

You know that feeling when you're about to try something normal, like sitting down or wearing jeans, and your body says, "Nah, we're not doing that today"? Vulvodynia, the gift that keeps on giving... except it's not a gift. More like an unwanted guest that never leaves. Can we get a collective "Oh, the joys!" anyone? 🙄 #SupportSquad

I’ve recently learned about how low-oxalate diets can help a multitude of illnesses/symptoms, including pelvic burning. Has anyone tried this? Did it help? I am currently using a topical steroid on the vestibules, but it hasn’t really helped.

Has anyone had damaged skin from over and aggressive wiping using baby wipes? I've obviously stopped using baby wipes and wiping the way I was, but how did you heal? My clitoris and the skin around it is especially affected and sensitive.

I’ve had a vaginal yeast infection with glabrata for exactly 3 months. No treatment has worked. I just did my last Amphotericin b suppository tonite. The burning got worse after I started them two weeks ago. It burns like I had sex dry without lube and it stings. Is it normal to have discomfort like this from antifungal local treatments? I don’t want to put anymore meds up there. Boric acid for two weeks prior to this didn’t work either .Will it take a while once I’m off this dreadful medicine to notice improvement? I got it from back to back antibiotics for uti and ureaplasma. I’m only 37.

I saw infectious disease today and she said to wait two weeks after I’m done with this medicine to see if I feel better and if I don’t I have to take oral Voriconazole. I am in so much pain. I can’t concentrate. I can’t have sex. No relief in 3 months. I can’t take this anymore 😭

Does anyone else here have pain at the urethra opening? Mine is extremely painful, swollen and irritated 24/7. I have to rinse when I pee and then that creates dryness. I do have IC, but Doctors cannot figure out whether this pain is from Vulvodynia or the IC… any advice? any positive stories with estrogen cream?

I just got over a yeast infection and am feeling SO much better. My pain has been at a 0 since monday.

Today i went shopping and tried on some clothes - nervous about triggering a flare.

I think since i was so nervous about keeping it clean and triggering some sort of flare, I kept on checking to make sure it was clean and looked okay.

I took a shower afterwards to make sure I am fully clean and my CLIT looks Bright red. In not sure if I manifested this on myself. It’s not painful or itchy, just red. Is it because i was checking on it and touching ? or did I trigger something. I am so mad at myself

Hi! Currently pregnant and I have suffered with vulvodynia for many years. Now Im looking for positive birthstories! Im nervous that my condition will get worse after birth or that I will tear due to my tightness.

Please share how your birth went and if your vulvodynia got better after 🌸 no nightmare stories 🌸

Okay, so I lost my virginity in December, and I’ve had sex again recently. The issue is I expected my first time to be painful; I even bled afterwards, but my second time having sex hurt. Honestly, it felt just as painful as the first time but a bit more bearable. I’m honestly worried that I don’t have enough vagina depth or something is wrong.

Just started on 25 mg after seeing some good reviews on this sub and r/MCAS. My vulvar pain is probably hormonally mediated and inflammation from yeast, contact derm, and auto immune response (I also have diagnosed DIV).

Other OTC antihistamines didn’t do anything for me, so I’m giving this one a go. How long will I have to take it before I know if it’s making a difference for my vulva? The internet says it works within a few hours for itching/anxiety. My doctor said to try it for a month. My main concern is that it was exasperate dry skin.

Any experience with this? Thanks