Hi everyone - feeling so discouraged and depressed. I started Dr. Fowler’s treatment protocol back in January and was told most patients see a drastic difference by month 3-4, well I am there and feel no difference, in fact I have had a flare up for the past month or so that has been so bad I thought it might be a yeast infection but when I treated as such I felt no difference. I just feel like everything I try doesn’t even budge my symptoms and I have tried A LOT. Please comment if you’ve had success with Fowler’s protocol, need some hope.

What is the best treatment for vulvodynia/vestibuldynia caused by chronic yeast infections? Edit: I’ve read that gabapentin cream works but idk

i’m not sure if this is TMI but i am desperate for help or perhaps guidance from someone else who is either going through the same thing or has experienced what i am experiencing before — i’m experiencing UTI pain with no symptoms of a UTI. i’m burning when i pee after having sex(with condoms) or when there has been any contact to my vulva, when i’m on my period, and etc. i don’t have the feeling of having to urinate all the time but i am experiencing the burning sensation after i pee and this usually lasts a few days to a week. i also experience pelvic pain if i sit down for too long/wear tight clothing. i’m taking AZO pills to mask the pain as i can’t function properly without them. i usually take 2-3 a day, everyday for a week straight with a few days break after if i’m not hurting. i have been dealing with these issues for about 5-6 months now and some days are worse than others. i have an appointment next week at the DR to run tests for a UTI just to clear that out but i’m not sure what could be wrong with me. i’m thinking it could possibly be vulvadynia but i am not so certain about it. i am desperate for help.

I have been taking 6 -7 mg Valium for years. My PCP wants to discontinue this because I also take morphine - 15mg IR for severe pain due to severe scoliosis and the pelvic floor issues. I’m afraid discontinuing the Valium is going to make my pelvic floor pain issues worse. Any input would be appreciated.

My doctor appointment is not until a few weeks. Does anyone have OTC suggestions? Im also easily irritated and cannot use vaseline.

Hey all,

Has anyone ever had a bad reaction to bamboo toilet paper? Like, yeast infections? Out of no where, I am getting constant yeast infections and the only thing I changed about 6 months ago was trying bamboo toilet paper because I heard it was good for sensitive skin.

I did this study yesterday and am reporting back now in case anyone else is interested. It's being done at the Medstar hospital in DC that's run by Georgetown University. Here's the link: Study Details | Vaginal Injection of Platelet Rich Plasma for Sexual Function | ClinicalTrials.gov

Essentially, participants will get a blood draw and then get 3 separate injections in the upper vaginal wall. The shots will either be platelet rich plasma (from the blood draw) or saline (the control). Patients don't know which treatment they are receiving.

My big disclaimer for anyone interested is that they don't actually use topical lidocaine like the study posting said. The doctor who did the shots for me said they decided to not use lidocaine because the area of the vagina they inject isn't very sensitive, and that most of the pain would be from the liquid of the injection stretching the skin, which lidocaine apparently wouldn't be helpful for.

I was nervous when I heard that but decided to go through with it anyways in case I was getting the PRP. It ended up being very painful (at least a 5/10 for me) and I was surprised by how much I bled. When she took the speculum out I felt the blood come pulsing down my butt for a couple seconds and there was a decent-sized puddle under me when I got up. The doctor said most patients bleed a little and report their pain level as a 3 or 4, so maybe I am an outlier but I kind of doubt it.

If anyone on here decides to do the study, I would absolutely recommend bringing your own lidocaine if you have it. I think the study is a great idea in theory; I just think they should have planned better for the pain management aspect. Hopefully if PRP starts being used as a treatment in regular gyn settings they will use lidocaine or nerve blocks as a standard pain management!

I love my PT, she is really kind, gentle and patient. She never pushes me too much or gets annoyed if I’m late. She is honestly a gem.

Recently she suggested I purchase a pelvic wand so I can do stretching exercises at home. She told me when I purchased it to bring it in and she would show me how to use it. Cool.

I purchase it, bring it to my PT appointment and offers to open it for me. I’m happy because I’m already lying down half naked. She opens it and then with the same gloves grabs a pillow and places it underneath my back. She then proceeds to grab the dilator with those same gloves and touches the tip of the dilator (the part I would be interting) and explains how it would work. I’m beginning to feel uncomfortable because that feels unhygienic but I’m too scared to say something.

She then offers to insert it for me first. I say yes, and it’s not too bad but I can’t stop thinking about the hygiene thing. The session ends fine. I pay and leave but I can’t help but feel panicked. Is this normal? Shouldn’t more care be put into keeping things antiseptic? If it was up to me I would have even cleansed the dilator before using it.

Whatever, the damage is done. I should have spoken up. I’m a little too shy.

So enlighten me please, I’m I crazy for feeling so uncomfortable with this level of hygiene (or lack thereof)? I know I have become quite neurotic about hygiene around my vulva since developing VVD, but idk.

I would love to hear anyone who has had true success with Happy V pre/probiotics stopping their recurring cycle of BV for good? I am 1.5 weeks into taking it and wondering when you started to notice the full effect? Thank you.

I’m still on the carousel of doctors trying to work out what I have. Neuroproliferative vestibulodynia is the latest. Would a pulsed radiofrequency pudendal nerve block work on this? It seems when I google, the only thing that helps, is surgery. How can they test if this is what I have?

What are the symptoms? Does it also include burning stabbing pain?

Dear everyone,

I have been dealing with vulvadynia for 3 years now, I am 20. I did a lot of research because I was done with my symptoms being stalled, and found out that my vulvadynia likely started because of the hormonal pill and then a yeast cream on top of that. Now I really want to try the estrogen-testosteron cream. I live in The Netherlands and at my last gyn i asked if I could try estrogen cream almost 2 years ago now. She replied that estrogen was only for woman in the menopause. That really not motivated me but I am ready to try and advocate myself to get it now!! Has anyone experienced difficulty getting those creams? Do you have any advice on how to get it. I live in The Netherlands and I wonder if the cream exists here? Please let me know <3

Hi! I have been dealing with hormonally mediated vulvodynia/vestibulodynia and hypertonic pelvic floor for almost 3 years now. I’ve been doing better since starting estrogen/testosterone gel a couple months ago to the point where I am able to have sex with my partner with minimal discomfort! Yay! However, because it’s possible that hormonal birth control pills (which I have been off for over 2 years now) started this issue, I want to explore other birth control options.

Do any of you have any advice on or experiences with IUDs you can share? I’m between getting a copper IUD (cause it’s non-hormonal) and a hormonal IUD like Kyleena/Mirena. My doc says IUDs like Mirena are ok for people with my condition, but I’m kind of wary of it or anything with hormones in general. That being said, the copper IUD comes with more cramping/pain/bleeding from what I’ve heard and I want to avoid as much pain and discomfort as possible :/ any advice or experiences would be much appreciated!!

You can see my previous posts about my terrible journey but long story short in Jan I took antibiotics for a uti and this hell began. I’m currently clearof all infections and have been for months. My symptoms are itching and burning on the vestibule, v entrance and clit skin. Right now it’s all insane itching of the entrance and vestibule. My gyno diagnosed me with vulvodynia and thinks it’s psychological. She prescribed lidocaine.

I had high hopes for the lidocaine and held off using it till my symptoms were bad. For some reason the week before and during my period is manageable but the week after (follicular) is hell. I’m in hell week. I tried the lidocaine twice and it did not help at all.

If lidocaine 2% doesn’t work does that indicate nerve related? Could this still be yeast (I’ve tried all the usual yeast treatments).

I’m feeling hopeless and ready to ask for heavy duty sedatives or something because I’m not functioning. Please help.

Hi all! I’ve learned from Dr Krapf that I need to get a pudendal nerve block. Does anyone have a provider for them in Dallas TX that you’d recommend?

I've been tested for UTIs treated for one, everything clear even wbcs after. All started about two months ago with pelvic pain and an urge to urinate more often and feeling like I had to pee after peeing. Can symptoms morph like this for no reason?? I've had generalized vulvpdynia since December and am now stuck with this too :(.

I had a talk with my doctor yesterday about my progress on my medications (lyrica and cymbalta for my pudendal neuralgia, E/T cream for my vestibule pain). I've had pain in my seat bones for a long time because of my PN and the meds and lifestyle modifications are making a difference there, but my vestibulodynia is unchanged after 2.5 months on the E/T cream. I attempted penetrative intercourse with my bf for the first time in over a year recently and my pain level was just like I remembered, even with topical lidocaine. I'm even a bit sore today from wearing tight shorts for about 2 hours yesterday.

My doctor said that we could give the E/T cream a while longer to see if it would alleviate any of my pain, but that a vestibulectomy could be a viable option in the near future. I'm not opposed to it, but I want to make sure I've exhausted all my options first. If I can get my insurance to cover Botox then I will definitely do that, and I also have a testosterone deficiency that I am still trying to investigate. I just saw an endocrinologist yesterday who has ordered extensive bloodwork and is willing to refer me to other places, but I've already been bounced around to so many different doctors in the last year and a half and am not sure how much more I'm willing to do. I believe my pain started as a hormonal deficiency from birth control about 4-5 years ago; it started as a raw, burning pain during intercourse but has slowly morphed into a sharp pain any time the vestibule is touched. I have some pain in my pelvic floor/vaginal muscles as well, but the vestibule pain has always been the worst and the main roadblock to intercourse.

I live at home and have good insurance, and I also work from home and have a very understanding boss, so I think I wouldn't have any trouble with recovery. My PT, who I've worked with for the last year and a half, has said that she typically doesn't recommend the surgery since she knows people who did it and ended up not having any relief, but then again my doctor said that every person's situation is so unique that it can be hard to know what will work for one person just based off of what someone else has or hasn't done.

So, I'd love to hear people's thoughts! Especially if there is anyone out there with the same combination of PN and vestibulodynia.

Hi,

Kinda nervous to post this but I need advice. Some time ago, I had polinidal sinus surgery. It was so chronic, it took 3 different surgeries to correct it. Before I had those surgeries, I had no problems with my vulva.

I have been trying to combat the pain. Has anyone had vulvadynia cause by any surgeries and if you have, have you found a way that helps or even cure the pain?

Thanks in advance :)

Hey, Since February of this year, out of the blue I started having severe burning, itchy and feeling of swelling in my vulva (specially in the entrance of the vagina), vestibule and anus.

I thought it was thrush, I tried everything nothing worked. I did treatment for every thing you can imagine that could cause this symptoms, you name it, didn’t work. Actually most of the treatments made my symptoms worse. I also got tested for all infections, swabs, etc, all negative, three times negative! And then I started to think that it could be related to my brain. When I looked at it, I thought it was red, but now I am thinking that maybe it’s the normal colour, I don’t know anymore, honestly can’t remember how it looked exactly before. And also thought that the swollen feeling could be an interpretation of my brain, and not a real symptom. Anyway, all of that happened when I went on my first trip with my new boyfriend and I was so anxious and so nervous about it, that something could go wrong, I waited for it for so long… Since then I have been having panic attacks because the doctors don’t know what else to do. I am depressed because I can’t do the daily activities I love because everything I want to do hurts. It feels like I am rubbing it against the asphalt/sandpaper. Even sitting, walking, moving, wearing loose jeans, having showers… My last option now is trying to take antidepressants/ medication for chronic nerve pain as I have no motivation to deal with that anymore. I just stay in bed crying all day. But I also saw that some people improved by taking this kind of drugs. I need some success stories to give me reassurance, give me hope that this will work for me too. 🙏🏽

It’s really crazy that a micro biome test isn’t just the standard of what you get at the gyno vs just a Pap smear that only tests for some bacteria and you probably end up treating something you don’t have, considering how many bacteria there are and they only grow to be more and more resistant bc of all the antibiotics we have to take… the meds were given are thrown at us and targeting the wrong bacteria only making things worse. Today I learned you can have too much good bacteria??! All this time I’m chugging kefir and taking happy v like the Dr said to.. now I wonder if that’s the problem. These micro biome tests can tell us so much I wish I could take one every week to track my progress or know what my body needs. This is why so many women are in chronic pain for years it’s so infuriating.

Hey all. Giving some PFPT a try. My PT told me to try 25 kegals a day and hold for 5 seconds each. As well as belly breathing exercises. After I do them I feel stinging pain in my vulva. Is this normal? Should I stop or is it part of the strengthening process?

First time posting but have greatly appreciated reading about everyone’s experiences and knowing I’m not alone. Appreciate you reading the below!

A little about me, I’ve been having on and off issues for 10 years. My symptoms have varied over the years and normally a “flair up” last for 7-10 days. I have been told I have re-occurring yeast infections although I’ve NOT consistently tested positive for yeast. I have been put on diflucan regiments that have done nothings and never seem to help. I have been told I have vulvodynia and have gone to pelvic floor therapy which gave me little to no relief, and if anything made things worse. I also end up having discharge with these “flair-ups”

Symptoms: My symptoms are itching, burning, tingling as well as pain during sex. The cycle is light itching to begin and gets worse with more itching, burning, redness, irritation and raw skin for 4/5 days before the symptoms begin to lighten day 7-10. Symptoms only last 7-10 days and sometimes will come back every month, every other month, or I’ll be fine for a year and randomly “flair-ups” will start again.

I just went to a pelvic rehabilitation doctor for a new patient appointment looking to discuss other causes as I have seen so many others talk about vaginitis or low estrogen levels etc. she immediately labeled me with vulvodynia, the external exam was not painful, the internal exam (which I have had many before) was extremely painful but she was pushing so hard. The appointment was 2 hours ago and I am still uncomfortable. She requested I go on a daily suppository of Valium, Baclofen, and gabapentin along with doing weekly injections at three locations that have additional relaxers and nerve blockers in them. This all seems really extreme to me especially when I pushed back on the discharge I experience, and how each “flair-up” lasts 7-10 days. When the “flairs-ups” stop I am able to return back to normal life, exercise and do all my daily functions.

Has anyone had similar symptoms and been diagnosed with something else? Especially looking to connect with people who have “flair-ups” that are like clock work in a sense, or have discharge related.

Going to be trying some other doctors as well. Thank you!

I am diagnosed with vulvodynia for a year(i am 20), suffering from it since i was a child. I have unprovoked vulvodynia, i am not sexually active, my urine and blood tests are normal.

I don't have any hormonal imbalances. But my gynecologist said that my vulvodynia is caused by estrogen hypersensitivity. She recommended birth control pills.

However, my other gynecologist told me that birth control pills may have caused it, and made me stop taking them. So i don't know which one to believe.

I can't sit, i can't lie down, i can't wear jeans. It ruins my life. It starts just like migraine attacks, no appearent reason. I have a urge to urinate, i urinate, then it burns worse and still feel like have to pee. It is a vicious circle. I don't know what to do. Do any one have that pain increasing sensation while and after peeing?

(I am new in reddit, English is my second language so please don't make fun of me :))

Hi guys,

Ive been dealing with provoked vestibulodynia for a while, and I have recently starting trying to do diaphragmatic breathing exercises more often. I didn’t really think they worked at first, but after reading some success stories here and also on the pelvic floor sub I decided to really work on it. However, I’ve noticed that I am feeling sore lately, specifically in the area outside of my vestibule, sort of just in my general groin region. Has anyone experienced this? I’m wondering if it is connected to the “exercises” that I’m doing even though they are not tightening exercises.

Other info- I stopped using my topical lidocaine/gabapentin/ amitryptiline cream a few weeks ago due to a yeast infection and am going to start back up, but I am aware that stopping this has probably also not helped any pain lol. Just curious if anyone had any thoughts on this. Thanks!

Looking for advice on what anyone has done to clear enterococcus faecalis. I have tried oral augmentin, vaginal compounded nitrofurantoin and the bacterial load continues to go up and now is showing no lactobacillus. This has caused horrible vulvodynia symptoms. Any advice is welcome!

I’ve been sent around to doctors and specialists for the past 8 months.

I had a uti which has caused pudendal nerve pain. Burning / stabbing / can’t sit down or wear pants. Continuously for the past 8 months. It is very hard to live with. I also now have tailbone and lower back pain.

My doctor doesn’t believe a uti could cause pudendal neuralgia.

My physio thinks my muscles and pelvic floor are tight causing irritation to the nerve. So I have been working diligently with her every week for 3 months. With little relief.

I just went to a pain gyno and she thinks my muscles / pelvic floor aren’t tight? And it’s more that the nerves have gone haywire.

Who do I believe?? And where to go next? I am on gabapentin which offers mild relief. I have had a steroid pudendal nerve block which didn’t do much either.

So lost and in pain everyday.

Hi all. My gel is combined in methylcellulose base. It’s five months old. I read from Dr krapf it can expire after 4-6 months. Has anyone’s Dr told them to get a new one after a certain amount of time? I’m wondering if it’s working less well contributing to my pain?

Hi everyone, I am in literal hell of earth pain. Every time I try any base with the estrogen and testosterone on the vestibule I make it 10x worse. Has anyone found success and relief of their vestibulydinia pain from applying testosterone to thigh? I’m hopeless these days. 9 years of this shit. Thank you

My jaydess (aka skyla) IUD is about to expire and I'm tempted to not replace it.

Has anyone found that removing their hormonal coil took away their symptoms? I'm still not sure what the cause of my vuvlodynia is.

Little bit of background: my vulvodynia is relatively new, since the start of the year, and freshly diagnosed. It started after using a bad shower gel for shaving (my bad) followed by 4 weeks of using clotrimazole cream I shouldn't have used really. I thought it must be eczema/contact dermatitis since I get eczema on other spots of my body but every Dr I saw said it wasn't dermatitis and must be vulvodynia. They also said it isn't lichen planus or sclerosus. It manifests as a dark pink/red area between my inner labia down to the vaginal entrance and it burns/hurts. It sometimes gets slightly itchy but I take antihistamines every day that prevent that. I also had some redness and slight itching/pain around the perianal area. The treatment plan I got would work for dermatitis as well so I'm just following it.

What's worrying me now is, that the doctors told me my Bartholin's cysts are unrelated to this, but I've not had them before until the last few months. I've had two on my right side, and currently one has appeared on my left. I've taken antibiotics for the previous two and they disappeared. They haven't got particularly big but enough to cause discomfort. But I'm wondering if this common with vulvodynia? Is this just because the area is inflamed? Or could there be an infection they're missing? I've tested negative for yeast, BV, and all STDs. I've ordered a ureaplasma test by myself which I was positive for and I've ordered and taken the antibiotics with my partner, but I don't feel like this is the cause.

I went to a doctor that actually knew and helped me with what was going on. I need to take a bunch of tests later to rule out other conditions and then start treatment. I’m hopeful that it may go away, doctor prescribed me flavoxate hydrochloride to help with the pain and it made my burn significantly better, although I didn’t have a UTI (a test ruled it out). Try not to loose hope, go to a doctor who actually knows about this, my gyno didn’t know and gave me the contact of another gyno that actually knew the condition. I was hesitant because he was a man, but I was in so much pain that I went. I don’t regret it, there are ways to get better, not every treatment will work but I’m sure someday we’ll all start te feel better!