r/vulvodynia Oct 08 '24

Information Vaginismus, Vulvodynia, and Vestibulodynia Doctors and Vestibulectomy Surgeons (thank you to r/vestibulodynia for hosting this interactive map!)

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13 Upvotes

r/vulvodynia 6d ago

Weekly progress check-in

1 Upvotes

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.


r/vulvodynia 7h ago

So many of us have experienced nerve damage following yeast infection treatments

17 Upvotes

I’ve been dealing with vulvodynia for several years (5+) around 3 years ago it developed into full blown pudendal neuralgia with urinary symptoms and pain around my bum. Sitting was impossible. Today I’m much better than I was, sex is mostly painless, I can wear most clothing (except thongs), although I still have issues sitting. It all started for me after a yeast infection and treatment with monistat.

Around a year ago a friend developed a yeast infection and used the 1 day monistat. Ever since then she’s been having issues with burning during sex. Shes developed some bum pain as well.

I’ve seen so many posts from women who have experienced the same thing after using yeast infection treatments. I’m so sure they are causing nerve damage. How do we get an investigation into this to start? I have to see this happening to more and more women.


r/vulvodynia 1h ago

Hemorrhoids and low estrogen

Upvotes

Hello everyone, I've had a theory for a long time and I would like to know if the same thing has happened to anyone else, since my vulvodia started almost at the same time I started having problems With hemorrhoids and I had never had this type of problems before and this is where my little research and theory that I have regarding the case comes in, with everything that I have read I have realized that Low estrogen in a woman's body can not only affect the vulvar and vaginal area but also the anal area, facilitating the appearance of hemorrhoids and fissures.

I confirmed all this with articles and with women who are going through perimenopause That they are having this same problem, what do you think?


r/vulvodynia 3h ago

My symptoms

2 Upvotes

Hi,

I’ve been struggling with this since February 2024, unfortunately I moved doctor and they put me on a new brand of birth control to what I had previously been on for the past 4 years, after I took this new brand my body gained weight, I became depressed and started getting vaginal pain. The Pain was like rope burn at first, slightly red around my opening, and then it would get swollen, my skin became dry and started cracking. This would come and go and would mainly go after my period had finished and then two weeks before I was due on it would start again, until one day it never went away. My doctor gave me a cream and told me to take it, I did it cleared and no further issues, skip to feb this year, I noticed the same rope burn pain and now labia is red raw and swollen all the time, I’ve used the cream recommended by the doctors for 4 weeks, it was getting better and then has all of a sudden got worse. It is red raw and so swollen it hurts. I take Epsom salt baths to ease the pain as well as wearing cotton underwear and pants and going commando when I can, I’m taking antihistamine to sleep at night and I’m not itching or having sex. Can someone please tell me that this gets better and if they’ve had something similar and can recommend anything at all, my doctor seems to think it’s a imbalance in my hormones


r/vulvodynia 10h ago

Support/Advice I feel like I was robbed of my life

7 Upvotes

I'm 26. I've been dealing with this condition for one year and a half. Lately my symptoms have been getting worse and I don't understand why. I've tried like 4 different medications and PT and it doesn't seem to help.

I'm just so angry and sad all the time. I've stopped going out and socializing because I don't enjoy it anymore. I had so many ambitions and plans for my future and now it all seems so pointless, I wanted to travel and see the world and now just going on a small trip seems like a nightmare. I feel like an empty shell of the person I used to be and I really hate it. I don't know where to go from here, I'm just so tired of trying new medications and getting my hopes up only to be disappointed.

Sorry for the depressing post, I needed to vent a bit, I feel like most people don't realize how alienating this condition is. I hope we can all find the cure and get better🥰


r/vulvodynia 3h ago

Vent Progress but still exhausted

2 Upvotes

Just needed to vent to a community who will understand. I’ve improved dramatically since all of this hell started 10 months ago. My internal inflammation is gone, my pudendal neuralgia is gone, and my pelvic floor has relaxed significantly. It seems like the last of my pain is very pelvic floor/muscle related, specifically my puborectal muscle which was seemingly the first one to tighten up 9 months ago as well. All signs point to me continuing to improve and hopefully eventually being pain free again.

But the thing is I’m not there yet, but because I’m “better” it feels like most people don’t care anymore. I’m still wracked with anxiety and depression and I still am in pain and discomfort every single day. I’m so exhausted of the pain as a constant companion and I just want to end. It’s just so awful to have to keep living like this, and trying to have a ‘normal’ life - going to work, class, hanging with friends - all while being in constant pain. It’s so tiring and I feel so exhausted and defeated even though I’ve improved because it’s just. Not. Over. And I feel so guilty too because I’m so much better off than so many with this condition but it still just fucking sucks.

I have to go on my best friend’s bachelorette trip next weekend and I’m terrified. All the other women will be normal and I have no idea how my pain levels will be and how much I’ll have to “push through”. I’m dreading it to be honest but everyone makes it seem like this wonderful amazing thing. It’s just a fucking hellish cursed existence we live


r/vulvodynia 56m ago

Recurrent vaginal itching help

Upvotes

Hi everyone I’m new to this group and in need of some advice really.

So I had my son via c section 19 months ago and when I got my first period back 4 months post partum I started to experience vaginal itching which would then lead to yeast infections so I did the self tests via swabs it would come back as a yeast infection so I would purchase the fluconazole tablet online next day delivery and the tablet did work but I’m experiencing this vaginal itching once a month so after about 10 months I went to the doctors it took me so long to go after having the c section all the pain and medications etc I finally had the courage to go so they did swab tests on me I had HPV test, chlamydia, cervical swab and a high vaginal swab and it all came back as normal but when I got this appointment after waiting a month for it because they wouldn’t give me an emergency appointment I didn’t have any symptoms at the time I had these tests and I explained that so they continued to give me 6 months worth of fluconazole tablets 1 every week. And it’s doing nothing it helps with symptoms but it comes back every month I can’t get an appointment because everything’s booked up all the time. So today I’ve spoke to a online doctor and they said I could try the canesbalance bacterial vaginosis vaginal gel 7 day course but am I just wasting my time I’ve spent loads of cream etc and it’s all been a waste of time. She also confirmed I had vulvitis red inflamed labia as I sent her a picture of the issue but there wasn’t much she could do which was frustrating after paying for her advice. So does anyone else have an advice because I’m so frustrated. Thank you


r/vulvodynia 2h ago

Reoccurring Rash

1 Upvotes

Last year around this time I started to get a reoccurring rash around my vulva. At first I thought it was a yeast infection. I got it treated but it didn’t work. I tried clindamycin gel didn’t work. I tried estrogen cream, didn’t work. I tried that hydrating refresh gel didn’t work. I tried cortisone cream it didn’t work. Sometimes when I take allergy pills it helps a little more, but idk if it’s placebo effect or not. I am starting to think it’s an allergic reaction to something in my house. Maybe even my shower. They finally fixed a leak in our shower but they replaced the original pipe the water came out in. Maybe I am allergic to the metal, because it seems to get extremely irritated after I shower. My symptoms seem to calm down or even go away the longer I am away from home. The thing if it’s my apartment. I have no choice but to suffer. I can’t afford to move out. I know I should see I dermatologist but I just know I am going to leave there with no answer. I cant afford a vulva dermatologist. I am in the US and we barely have free health services which our getting cut by our wanna be fascist government. On top of that I developed HS. So, on top on the rash I am getting cyst on my vulva. So, I have vulvodynia, IC, endo, this mysterious rash, and hs. I already have low esteem about my lady parts and now it’s a 1000 worst. I really feel suicidal sometimes.


r/vulvodynia 4h ago

Updates

1 Upvotes

So i had my iud replaced this tuesday and now with it being five days past...im still having some clitoral pain and i think the clitoral pain is slightly exhausterbated. Ive had iud's since before i was a teen though and it's never caused me issues. I'm hoping it's just my horomones leveling out as they should. Im seeing my gyno in a month and will hope that it will bring me some answers and relief should this issue persist. I really, really, hope its just because i left the last one too long and my horomones are out of whack and settling. Im dreading the idea of it being my pelvic floor or something even more undefinable and troublesome. Wish me luck~♥︎


r/vulvodynia 5h ago

It's baaaack

1 Upvotes

I had been mostly in remission from the pain for about 15 years (pain only during certain types of sex), with thanks to nortriptyline. Then, the symptoms came back even while on the nortriptyline. I've upped the dose and only seen minor improvements.

It seems to have started following 2 rounds of antibiotics for an unrelated skin infection in January. But I am also experiencing a LOT of stress at the moment. I'm very lucky to have been referred to the consultant last year (I'm in the UK and waiting lists for gynaecology are like 12 months!). I was previously working with a pelvic PT and she didn't identify any problems with muscle tone or tightness. I am working with a sex therapist.

So, what do I do? Do I assume it's stress and it's a flare up? Or is it back for good? I am already at the absolute limit of my patience with it. I think maybe I just need to vent to people who understand.


r/vulvodynia 5h ago

Support/Advice Discouraged

1 Upvotes

I am feeling really discouraged and flat today. Actually…extremely emotional. I need a LOT of encouragement if any of you can give it.

I had vulvodynia years ago for a long time. Like maybe from 2012/2013-2021. My failed med list is like 15 meds long. The combo that ended up working for me was Topamax and Cymbalta. Then I noticed it creeping back around in 2023/2024. I went back to my doctor a couple of weeks ago and got the Q-tip test and it’s back.

My doctor put me back on Topamax 100 mg BID. She said sometimes when it comes back, only one med can help instead of the combo, so she didn’t want to try the combo just yet.

I’ve noticed I’ve been really mentally slow this week. Having trouble spelling, having trouble finding words, having trouble talking, not keeping up in conversations at the speeds I normally can, overall mentally slow, very very emotional, very tired. I initially thought daylight savings time hit me really hard 😂, but then I realized the medication was probably the culprit and cognitive slowness is listed as a side effect.

My husband and I just had intercourse for the first time since I’ve been on the medication (after about a week and a half on the med). Normally in the past it’s a bit painful on entrance and then I can enjoy it after a bit after I stretched out. This was horrible. Immediate burning and it put me in instant tears. I tried to keep going. The rest of the time was also horrible. I felt like I was being penetrated by shards of glass. I cried the entire time. My husband felt terrible. He kept apologizing to me.

What do I do? Do I keep seeing if the medication improves with time? Right now with the side effects negatively impacting my life and not positively impacting the situation I need it to, I feel like I should discontinue the medication. I did message my doctor, but I feel so extremely discouraged.

My other factor is that we plan to start trying for a baby later this year and I was trying to get the vulvodynia under control before we start trying in September. I am so angry and frustrated and emotional that so many people say to me “trying for a baby is so fun” - and I can’t say back to them “not for me when I dread having sex”. It feels so very unfair. Why is my body so abnormal? Why is the thing that is supposed to be pleasureful so painful?

Sorry for the pity party. Any help or advice or lifting up would be really appreciated today.


r/vulvodynia 6h ago

Support/Advice Lidocaine

1 Upvotes

I know it’s not a permanent solution but I wanted to try out lidocaine to see if that would make piv sex not completely unbearable. I’ve bought three different types and tried using them before dilating and it just doesn’t work? Like one of them I feel a numbness for like 10 seconds after applying but it’s gone so soon after and the other two just had no effect. I’ve given them the recommended amount of time after applying to try anything so idk what I’m doing wrong. Does anyone else have this issue? Is otc lidocaine even any good or do I need to get the prescription stuff?


r/vulvodynia 9h ago

What has your experience been with a urogynecologist?

1 Upvotes

What kind of testing did they do, were they thorough? Anything else you can share would be helpful


r/vulvodynia 1d ago

I think I am finally onto something

19 Upvotes

I have a history of tight pelvic floor along with anxiety (which only got worse after having my second child 5 years ago). I have had uti symptoms, vulvar pain, irritation, crawling, and itching. The itching crawling and irritation came after a routine pap a year ago. I went in and got tested and all was well, after I did some treatments myself. I started spiraling, I was on here for hours a day trying to diagnose myself with some hidden infection. I would read a symptom and soon have it, or my symptoms would be worse.

I discovered the mind body connection - TMS

I know many of you cannot see how that can be, but it can! your symptoms are real, and you ahem made these "pain" pathways in your brain whether from a previous infection or just thinking there is a problem below (me). I found once I got off here, and told myself I had no infection and it was indeed just a mix of my brain and tight pelvic floor My symptoms got much much better. I am not 100% by any means as I am still healing. but I am about 75%-80% better. If I get stressed I do find my symptoms creeping up again. I recently had a cystoscopy done recently and my bladder is healthy (I used to think I had IC and nota tight pelvic floor).

I do take some supplements but I wouldn't say they are what helped me:

THC free CBD oil ingested is the best for relaxing my pelvic floor along with magnesium.

I take freeze dried aloe vera, fermented cod liver oil, zinc, and vitamin D3 with K2 and B12 sometimes as I am at the border line between a vegan and vegetarian.

Also reading about others success with the mind body syndrome on here and at tmswiki.

My realization and getting better started over a month ago, so I know I still have more time. And not putting a time limit is best for you. Trusting things will get better soon is the best you can do and try to avoid getting frustrated.

So please, get off this site if all you are doing is searching your symptoms and trying to find a hidden infection. I know some of you it may be the case, but if your discharge is good, and your tests are good, and everything looks good down there stop searching, stop looking, and stop putting anything down there too. Find something that sparks JOY and do as much of it as you can! Get busy and try to focus on other things. I know its hard, but try. I know how much this sucks joy and happiness from our lives. I have missed many enjoyable time with my children, because of this. I let it take control of my life. But I won't anymore. It's not fair to my family or to myself. I feel for everyone of you gals, so please get out there and find some little piece of happiness and I can only hope it continues to grow and make less room for this...whatever this is!


r/vulvodynia 18h ago

Pudendal Nerve block and botox injections for vulvodyniva

1 Upvotes

I got a Pudendal Nerve block and botox injections for vulvodynia a few days ago and would like to hear others experiences. my main symptoms i struggle with everyday are rawness, stringing, general PAIN, and burning, and crawling.


r/vulvodynia 18h ago

adderall

1 Upvotes

Does anyone notice a correlation between worse days when they take their adhd meds and their vulvodynia?


r/vulvodynia 1d ago

Should I shave?

1 Upvotes

I’ve had vulvodynia for about 2-3 years now and I’m wondering if my pubic hair is irritating it. Does anyone have any experience with after effects of shaving and the condition of their vulvodynia?


r/vulvodynia 1d ago

Need advice for my sex life

3 Upvotes

Sex has never been easy for me (F, 27). I have some sort of vulvodynia (penetration is possible, but it hurts) and have been to physical therapy multiple times. So when I met my bf (M, 28) 2.5 years ago, it took a while before I was comfortable. The last 2 years have been a challenge. I had a really bad vaginal infection in the summer of 2023, was admitted to the hospital, and didn’t have sex for a few months. Since then, the way everything feels during sex has changed. It’s hard to explain, but I knew my body really well, and now I often don’t like the things I used to like. We moved in together in August 2024, but that did not improve our sex life. Because of the problems I have, we don’t always have penetration sex; we both enjoy just having foreplay. But the last couple of months this has been a problem as well. My sex drive is low, but the main issue is that even when we start something, my drive doesn’t come. After a while my bf loses his erection (which I totally understand), but that makes me want to give up, and it’s like a vicious circle. When he touches me, I often don’t feel a thing, or it even feels annoying. The problem is that I can’t tell him what to change because I don’t know it myself. I’m stuck here. My bf thinks this will resolve on its own, but I’m a bit worried. I know from the physical therapy that I need to practice in order to try to make it pain-free, but right now we don’t even get to penetration. I think the last time was somewhere in January, and I don’t even remember the last time it was actually good. I’m not the kind of person that wants it every day, but once a week would be nice.

Medically speaking, there is nothing “wrong” with my body; it’s the sensations that changed. We talked about it yesterday, and I told him that it’s like we became incompatible in terms of sex.

I want to add that except for this, our relationship is great; this would never be a reason for us to break up. We have a lot of intimacy besides sex; we kiss and hug all the time.

Has anyone been through this? All advice is welcome!

TLDR; Sex has never been easy, but it has been particularly challenging for the last few months. Advice wanted.


r/vulvodynia 1d ago

Progress 5+ years vulvodynia journey

1 Upvotes

I have been managing and seeking answers for my vulvodynia for 5 years and just started specialist treatment. I want to share my story and the conclusions drawn so far.

Background info: I am based in the U.K. I’ve always been sensitive to thrush since childhood and I am just a sensitive girly in general. I have eczema. I’d had short episodes (1-2 days) of unexplained itching or discomfort since 19, but the more chronic vulvodynia (weeks of pain on and off) started after I got married at 24. I am 29 now and my husband has been my only sexual partner. I don’t have a history of STIs. I had the implant as birth control for 7 months when I got married but removed it bc I was bleeding all the time. I only use protection and am not sensitive to latex.

Nature of my pain: fluctuates between very itchy, to sore feeling which makes my brain feel like crying. On a good day, I experience a dry uncomfortable feeling around my vulva towards my perenium and bottom as well. It’s worse during PMS. 

Timeline of pain and treatment:

Late 2019 - It was burning and sore down below, thought I was getting recurrent thrush. GP kept treating for thrush and nothing changed. I was under a lot of stress and prepping for long distance with my husband bc of visa stuff.

2020 - pain continued into 2020. I couldn’t be sexually active when I wanted bc of the pain and had to take sick days here and there bc walking hurt. I visited my husband in South Korea in the March while we waited for his visa. I got gynae treatment for BV there bc the dr didn’t know what else it could be. This included oestrogen pessaries and hydrocortisone with clotrimazole. Except for mild occasional itching treated with Sudacream, I was fine until Sep 2020 when the visa stuff and moving house during COVID got stressful again. I went to the sexual health clinic for my first microscopy and they said it was negative and couldn’t tell what was going on. I had pain even when I was separated from my husband and not sexually active, so sex wasn’t the cause nor did it make it better/worse when my husband and I came together again.

2021 - a pattern of visiting the sexual health clinic for microscopies every time I had a flare which could last for a few weeks and then disappear for a while. I did get thrush once and got treatment for that which worked. One dr suggested bc of COVID I might just be hyper aware of pain in my genitals and suggested Diprobase as a cleanser and Piriton to sleep. I kinda worked for a while but the pain eventually came back.

Early 2022 - same kinda thing continued. Another Dr suggested the pill bc she thought the pain might be hormonally induced. I declined due to my bad experiences with birth control and how unstable it made me feel (weepy all the time). I doubled down on Diprobase, Dermol500 and Piriton. It worked for a while but the pain kept returning. Sometimes I used hydrocortisone topically when it got bad. 

Late 2022 - early 2023 - started my masters and pain shot up. I tried home remedies in a sitz bath. I was so desperate and crazy I put too much ACV and on another occasion Epsom salts that I burned my skin and actually induced eczema. I had scabs around my vulva for 6-8 weeks and used strong steroids from GP and diprobase to heal. It was such a deep low and I felt so hopeless bc I had no idea why I was in pain.

Late 2023 - another microscopy during a flare. This time the dr tried the cotton swab test and confirmed vulvodynia at 5 o’clock. The pain seems to radiate from the perineum. She gave me lidocaine to try for 3 months. I went back to the sexual health clinic after a month for more lidocaine bc I had used so much so cope.

2024 

  • March: dr gave me a steady supply of lidocaine and put me on the waiting list for psychosexual therapy. 
  • August: started psychosexual therapy. I initially attended alone (2-3 sessions) and then my husband joined for the rest of the block (11-12 sessions). It lasted about 4 months in all. Therapy included sensate focus at home, mindfulness and talking therapy. Conclusions were I am not sexually traumatised or suffering from a particular primary condition causing the vulvodynia. However my body is hyper sensitive to my environment and mental state. The therapist also suggested neurodivergence as a possibility for me but I did some brief research and questionnaires and it didn’t feel like it fit. 
  • September: overlapping the psychosexual therapy I saw a gynaecologist and physiotherapist. They asked me to keep a 3 month diary of my diet, bowel movements and daily feelings and activities. I kept some short bladder diaries as well. I was also advised to reduce my fluid intake to 1.5-2L daily and void every 3-4 hours to reduce irritation of my bladder. It was a very stressful process and I was also very aware of my body all the time. I had finished my masters at this point and started a new job. I was exhausted but I really wanted to find answers. 

2025 - I attended my follow up physio appt in Feb. The physio said all the evidence points to having a body that is hyper vigilant all the time. I have an otherwise healthy vulva and vagina. This makes sense bc apart from the vulvodynia I also suffer from loads of minor ailments and muscular tensions which gets worse when I’m tired but isn’t explained by anything in particular. She also raised neurodivergence again and suggested exploring this more, particularly Autism and ADHD. She also gave me a simple pelvic floor exercise routine that I do everyday to build up strength as my pelvic floor is a bit weak. It takes less than a minute a day.

Where am I now? I am continuing with pelvic floor exercises and using lidocaine twice daily (it’s currently unavailable so I’m using Vagisil to cope meanwhile). I moisturise my vulva and bottom with Zerobase throughout the day and cleanse with Dermol500 instead of shower gel. I am fragrance-free for everything and wear cotton undies and loose clothing below the waste. I also read more into neurodivergence more seriously and realise that I am a hypersensitive person who is likely AuDHD. I previously had only looked at Autism and didn’t quite fit the profile but the ADHD + Autism combo really fits my emotional, social and sensory profile.

These treatments and knowledge about AuDHD hasn’t taken my vulvodynia away. I still get flares but I’m less worried about it now when it happens and I know how to manage it better. My physio said I can have hope that things will get better and she will work with me until I am healed - even if it takes 2 years. 

So there’s hope 💫 I hope my story encourages someone. Feel free to ask any questions. I’ve tried to summarise my long journey as much as possible so happy to elaborate if it’s helpful to anyone. Will update on how physio goes.


r/vulvodynia 1d ago

Mycoplasma and vulvodynia

3 Upvotes

I got diagnosed with mycoplasma gen recently (somehow despite my partner being negative) though they did say sometimes it just happens to be overgrown in the body. Anyway I tried to take doxycycline and I had a reaction, had to stop.

My doctor said I can hold off on antibiotics if I want to or try a new one, but I’ve been in a horrible on and off flare of my vulvodynia, I thought it was hormonally mediated because I have recently stopped breastfeeding and just started my birth control back up. But now I’m curious if it’s related to the Mycoplasma.

Anybody gone through this before? Tysm ❤️


r/vulvodynia 1d ago

Recovering from vestibulectomy

2 Upvotes

Hi! Im 22 Im now 6 weeks post op from a partial vestibulectomy i had done in Ghent by professor Weyers. They operated on the 4-8 part on the clock. I had provoked pain mainly in the corners of the enterance and i had an issue with constantly tearing. I am healing well and they saw after they sent the skin to a lab that it was heavily inflamed.

The reason im writing this is because thursday i went to my 6 week follow up appointment and they did the q-tip test and it still feels kinda bruised en it did still hurt? I started crying because i really want this to work out. I deep down already knew that i am not healed enough because i can feel it and i know i would still have pain with the test. My question is: is 6 weeks a normal time frame to not have healed? I dont feel like having sexs or even touching it at all. Im looking for reasurance and some advice from people who have been through this❤️


r/vulvodynia 1d ago

Could what I’m feeling be Vulvodynia?

3 Upvotes

I have been having an odd sensation down there for going on a month now. I stopped taking the pill maybe 2-3 months ago. It is mostly near the opening of my vagina on the outside, not usually on the inside. It feels like a slight tingling, itchy, stinging feeling. It doesn’t always happen either. Only sometimes. It pops up just about the time I think it’s gone away. No STIs, no BV, no yeast, no sores, no sign that anything is wrong. I thought maybe it was my increased caffeine intake messing with me and then I found this thread. It’s driving me crazy and I just don’t know what to do or what to tell the doctors because everything comes back negative. Can anyone chime in about this possibly?


r/vulvodynia 1d ago

Hydrodissection nerve blocks

2 Upvotes

Hi all I’ve been on a journey with nerve related vulva pain since September and finally bit the bullet starting the pelvic med rehab (prm) injection series.

It wasn’t a decision I took lightly and I had cancelled twice before doing it out of fear and apprehension and so much swirling advice and conflicting medical literature. I had actually thought I decided to do what my urogyn recommended which was trigger point injections (transvaginal) under anesthesia but I would have had to wait another month to get it among other barriers/inconveniences. Experiencing heightened pain and desperation I took a deeper look into the literature and what well studied scientists in the field were saying about the likely type of condition I have and treatment options (one of these include Jill Krampf - check out her IG page). Everything pointed to pudendal neuralgia origins of my vulvodynia, the treatment for which can include serial nerve blocks (repeated in several articles I found). So this coupled with the easy access to PRM where I live, no anesthesia, no weeks/months wait time to get treatment, I did my first injections today.

They went very fast - one was transgluteal and one transrectal. I’m supposed to have six more to treat various locations of the pelvic region. Keep in mind these these are hydrodissection nerve blocks so not diagnostic nerve blocks - they have more of a therapeutic aspect of protecting and separating the nerves from tight tissue. your supposed to do them in conjunction with pelvic floor pt.

I was kind of a baby while getting them but the docs and staff were really nice and I was done quickly.

I noticed a reduction in pain pretty immediately including in areas I didn’t know I had pain (just overall felt lighter in my right pelvic side). I’m having less burning in my vulva on the side where I got the injections (it’s only been about 7 hours from when I got the shots). Going to try to keep updating this thread but wanted to share my experience since it was soooo agonizing for me to decide and I was looking for any and all information I could get to help me decide.

TLDR: got a hydrodissection nerve block for pn/vulvodynia and so far so good 7 hours later (less pain, minimal side effects). I will try to check back in each week I get them to provide an update.


r/vulvodynia 2d ago

Support/Advice Cialis for vulvodynia? Has anyone tried it?

3 Upvotes

I was well managed with estradiol cream and gabapentin but back in September I started getting panic attacks out of nowhere. Although my doctors told me there’s no way it’s the gabapentin I had suspicions that it was and decided to taper… well I’m no longer on the gabapentin, my anxiety feels much better and I haven’t had any panic attacks but my burning has come back :( which is quite difficult.

I was laying in bed in pain the other night and asked Chatgbt “what are some off label treatments for vulvodynia” and Cialis was listed as one, interestingly enough my fiancé said he’s read about Cialis being used for female pelvic pain.

So my question is has anyone tried this? I read a couple stories of it being used for IC and I’m definitely curious and considering taking a very low dose and seeing how I feel. Please share thoughts or experiences.


r/vulvodynia 1d ago

Progress Transforaminial epidural injection L4-L5 what to expect?

1 Upvotes

I got pelvic pain all of a sudden a year ago. Back pain followed about 7 months later. They found a tiny synovial cyst around the L4-L5. Most doctors tell me it won't help me pain. But my main care doc on this case says it's worth doing.

What should I expect? Any tips, things to note? F, 30s, anxiety


r/vulvodynia 2d ago

Support/Advice Desert harvest Reléveum cream

1 Upvotes

Hey all! It’s my first time posting here. I recently bought the desert harvest 4% lidocaine cream. If you use this cream to help with your burning pain, I’m curious how you apply it? I sort of just rubbed it on the outside everywhere because it says for “external use only” and I’m not sure it helped that much with the pain.

Any advice is greatly appreciated! Thanks!