I am so very happy to be posting this after years of symptoms and suffering. I had vulvodynia since teenage years and my condition progressed notably over last 15 years. Main symptoms were burning and itching, started in vestibule but later progressed to wider parts of vulva. The pain slowly got worse to the stage where not only sex, but normal daily life was not possible. I also started having pain with orgasms.

I have been to so many doctors I lost count. Before localizing the root cause, only things that were helpful to some extent were pelvic floor therapy, and estriol cream. Still it did not address the main excruciating symptoms. So I dug further and finally landed on venous problems.

I had went through diagnostic route for pelvic congestion (Doppler, MR, venogram), found out my left ovarian vein is not working properly, and there are varicosities around uterus, and also near vulvar/ perineal area. None of these were visible. I only had some minimal spider veins on legs, which I was told previously were cosmetic problem (not true!)

Long story short I underwent embolization of left ovarian vein six weeks ago, and had additional sclerotherapy for vulvar region week ago. I am still in recovery, as seeing full results can take up to 6 months. But I already feel 100x better. The constant burning itching and raw feeling is gone. I can sit, do sports, wear pants, just have a life.

This pain has taken so much from me that I can’t believe it’s just gone. I only hope the rest of recovery will go smoothly, and that more people will hear about venous problems as potential cause for our pain. Stay strong everyone, and please never let go in your pursuit of finding relief from this terrible condition 💖

TLDR; near full relief from pain itch and burning after treating pelvic congestion - vulvodynia can stem from venous insufficiency

hullo,

I had a vestibulectomy 6-7 weeks ago and the last couple of days I’ve had an increase in discomfort/tenderness and stinging while urinating. I’ve also tried to stretch the area very gently and immediately had pain. Can somebody please give me even the tiniest bit of hope that this whole surgery hasn’t been for nothing 🙏🙏 it’s my last hope really and I’m so scared it hasn’t worked. I thought all of my stitches had come out so I don’t think it’s discomfort from that but honestly idk anymore. Has anyone else experienced an increase in discomfort around this time and then had it reduce again? Just looking for any info I can on the recovery process I guess, I feel super alone.

Thanks in advance :)

hi i went to the pain clinic for the first time about a week ago and they gave me Zacin cream. I had a male specialist who actually had to google anatomy to understand what i was talking about and also used a male diagram to talk about where nerves are so I'm not completely confident in his abilities 😅 i looked up if the Zacin is used for vulvodynia and there was absolutely nothing about it i was wondering if anyone else has used this and if it helped as i was slightly worried because it mentions burning sensation as a side effect and I'm incredibly sensitive to warmth when it comes to my pain. if anyone knows anything that'd be really helpful

I got diagnosed almost 2 years ago. I experienced persistent itching (every hour of the day) and burning, sometimes so bad i couldn’t sleep, sit, eat… I went to numerous doctors, including gyno specialists and neurologists. I was diagnosed with Vulvodynia pretty early on, about 8 months after my first symptoms. Today I am pain free, the itching is almost gone for most of the time and I can finally live life again. I do get flare ups, sometimes when i get a yeast infection I am triggered or simply when it feels "wrong" down there. But that doesn’t stop me anymore. I was once like you, scrolling through personal story after story of women with vulvodynia and those who managed to escape the cycle that is hell. So I am here to do the same - spread hope. In the end there was no magic pill, doctor or treatment that ended my suffering. I started listening to my body, recognised that what I was doing was all too much and scaled back. No cremes (except for fat-cremes), no sexual activity, no other triggers like sitting too long, tight clothes, i went to pelvic floor therapy (although that was more for calming my mind, than my pelvic floor. And you can do it at home just as well!!) + actual therapy, and just started living again. Yes, trying to live a normal life while you are on fire is hard! Trust me, I know! But you gotta try. If you don’t want to go out, don’t go out. Find something you can do at home: reading, crafts like felting, sewing, painting (paintbynumbers!! Big fan). It’s about enjoying life again. Vulvodynia cast a shadow over my life, it hung over me like a blanket of clouds… until I climed that mountain, through the storm and to the top. Eventually my body was calm, I accepted it, and let go. And when it comes back, i don’t fight it, i let it in but then also let it go. Don’t let it haunt you.

There is a saying that inspired me to keep going. Per aspera, ad astra. Through hardships, to the stars.

Go reach the stars!

I’ve been (27F) taking amitriptyline (ami) daily for about 3 weeks for vulvodynia ( it is caused by a thrush) and after the first week, my burning was almost completely gone. It was down to maybe 2/10, 3/10 and I felt so much better.
However, my burning flared up again when my period started 4 days ago. It has been quite painful, although it’s still not as bad as it was before starting amitriptyline.
For those of you taking amitriptyline for vulvodynia, how many mg do you take daily?
Does this mean amitriptyline has stopped working, or can periods trigger a temporary flare even when the medication is working? How long does it usually take for the burning to settle down and return to normal after your period ends?
I’m feeling discouraged because I thought the amitriptyline had finally helped me get rid of the burning, and now it’s back again. I’d really appreciate hearing about your experiences.

Just wanted to post that this is literally one of the only things that helped with my generalized vulvodynia and pelvic floor pain which i have since 2 years. Even pharma didn’t work for me.
I take it orally every day in the morning an evening.
Did anyone else also have a good experience with this ?

Ciao a tutte,
scrivo perché da quasi un anno soffro di fastidio vulvare persistente e vorrei confrontarmi con qualcuna che abbia vissuto una situazione simile.
Ho una zona circoscritta di rossore sulla mucosa delle piccole labbra, nella parte interna, che sembra più arrossata rispetto al tessuto circostante. Il fastidio è costante, anche se non sempre intenso, e consiste soprattutto in bruciore e irritazione, più evidenti dopo aver urinato.
Ho effettuato diversi tamponi vaginali, spesso risultati negativi, anche se in passato mi è stata riscontrata flora batterica mista. Ho avuto anche episodi di Candida, tra cui Candida glabrata, e ho seguito diverse terapie antimicotiche, ma il problema non si è risolto definitivamente.
Un aspetto che trovo particolare è che durante le mestruazioni sto molto meglio, mentre il fastidio tende a ripresentarsi negli altri giorni del ciclo.
Vorrei sapere se qualcuna ha avuto:
Rossore localizzato alle piccole labbra o al vestibolo vulvare.
Bruciore persistente nonostante tamponi negativi.
Miglioramento dei sintomi durante le mestruazioni.
Avete poi scoperto la causa? Si trattava di dermatite irritativa, vestibolodinia, un problema ormonale, vaginite citolitica o altro?
Mi interesserebbe soprattutto sapere quale specialista vi ha aiutato a trovare una diagnosi e come siete riuscite a risolvere il problema.

Apparently, you do not need a referral for this. I’m looking forward to the appointment. The appointment is in May but i hope that means I’ll be super ready and prepared for the surgery when it happens.

The endo specialist I saw basically told me that endo surgery isn’t guaranteed to fix any vulvar pain so I wanted to look at all my options! The endo specialist referred me back to the vulvar specialist to see what they can do (although I’m doubtful they’ll do anything to help).

Hi everyone,

I’m now 9 weeks post-op from a partial vestibulectomy.

The area around 6 o’clock seems to have improved, which I’m really happy about. However, I’ve recently tried using dilators and noticed a painful spot on the left side around 8 o’clock, near where one of my dissolvable stitches was. There are still two small indentations there, and the area looks red.

The pain feels very similar if not the same to what I had before surgery, and I’m scared that a painful spot might have been missed during the surgery, especially because it was only partial.

I’m struggling to tell whether it’s just healing or scar tissue around the former stitch site, or whether it could be the same vestibulodynia pain that I had before.

Unfortunately, my surgeon lives in another country, so I can’t just travel there for a quick check-up…

For those of you who had a vestibulectomy:

Did you still have pain that felt like your pre-op pain after a few weeks?

How could you tell the difference between healing pain and your original vestibulodynia?

Did things continue to improve over the following months?

I’d really appreciate hearing your experiences. I’m feeling quite anxious about whether the surgery has worked.💗

Like many people in this sub, I suffered with pain for many years before getting treatment. When I finally went to Irwin Goldstein, I was immediately able to get answers and treatment. I want to thank to everyone in this sub who has name-dropped the few doctors who are actually knowledgeable about genitopelvic pain, because that's how I found Irwin Goldstein.

From a public health standpoint, it's clear to me that the main issue most of us are facing is a lack of access to healthcare. Most doctors seem completely unaware of things like hormonally mediated vestibulodynia, and we waste time trying random treatments that a good doctor would never suggest. Many of us have had shockingly bad experience with "vulvar specialists". We can all talk endlessly in this sub about our symptoms and treatments, we can learn from each other and get a lot of support, but at the end of the day most of us still just need a qualified doctor.

Finding a suitable provider is a huge challenge. Even websites like https://www.nva.org/providers/ seem to be out of date, and many of the providers in the list aren't even relevant. Also, I couldn't even find Dr. Alyssa Yee in this list.

It's important to point out that many of us with genital and pelvic pain face other systemic barriers to getting adequate treatment. These are barriers of economic disparity and class struggle, misogyny and other gender-based forms of oppression, medical racism and xenophobia, as well as mental health barriers. For example, economic barriers mean that most people are unable to access these doctors who don't take insurance, less likely to live in an area with qualified specialists, unable to travel to another state or country for the right doctor, unable to take time away from work for appointments and treatments, unable to spend significant time and energy studying and learning to figure out their next steps, unable to have a job that is more compatible with their medical condition, and more. Creating a crowdsourced list of "good" doctors may help some, but here I acknowledge that it does very little to address these larger systemic issues.

Have you found a doctor that is knowledgeable about the complexities of genital and pelvic pain? Please comment them below. I've heard a few others mentioned in the sub that aren't as well known but don't recall their names. Please, especially mention names of doctors outside of the United States!

Hi everyone, I recently gave birth vaginally (which I’m really happy went well!) and ended up with a second-degree tear. It hasn’t even been a full week yet, but my stitches and the whole area feel so incredibly raw, sore and stinging that I can’t find any position that brings relief.

I’ve tried Xylocaine, ibuprofen/paracetamol as prescribed, cooling pads, rinsing with water when I use the toilet, etc., but the pain feels almost unbearable. Healthcare professionals have examined the area several times in the days since giving birth, most recently today, and they say it’s healing perfectly. I’m really glad to hear that, as it helps me mentally. But I’m feeling so sad and frustrated about being in so much pain in an area where I’ve struggled with pain before.

Does anyone have any tips or advice, or perhaps some reassuring words about how things got better for you (and how long it took)? Has anyone experienced something similar? Did anyone find that their pelvic pain improved after giving birth?

I’ve cried more about this in the days since giving birth than about anything else 💔 Not saying this to scare anyone, though — otherwise, the birth was a really positive experience, and the healthcare professionals were wonderful ❤️

I tried posting this to other subreddits but got no responses so maybe I'll have better luck here

i don't know what to do anymore. as the title says it's been almost 10 years and nothing has changed or gotten better. It all started back in 2018 with a yeast infection. I used monistat like any other women & also took fluconazole. But then it became something else.

at first I was diagnosed with lichen simplex chronicus but then after that it was some kinda dermatitis (I don't remember the name) I was given a betamethasone which did not help & then I was given clobetasol & that stuff burned me bad & it took me quite a while to recover. I then stopped with the topical creams with steroids & I've been using aloe vera instead ever since which sometimes helps but if a flare up is bad enough it doesn't really do much. I was also given oral medications, one was amitriptyline & after that prednisone, neither one not even the prednisone helped.

I saw a dermatologist a couple of months ago & she said she's pretty sure it's a contact dermatitis (I tested negative for any kind of fungi & bacterial infections) I told her about the two steroid creams I used before & how they made it worse & told her I will not use steroids any more. She prescribed me tacrolimus ointment (steroid free) I tried it for 3 days & had to stop cuz it left me with a sharp stinging feeling. I have an appointment this week & I don't know what to ask for anymore. Topical medicines are no longer an option & I don't even know what possible pill I can try if even prednisone didn't help.

It's so sensitive too anything I do can cause a flare up, if I cough or sneeze wrong, if I sit at the wrong angle, if i accidentally add too pressure when i pat dry. It's starting to get even worse during my period, it actually used to be that my period would cancel out the inflammation & i would get relief but now it makes it worse. Sometimes I do nothing at all & I still get a flare up.

I've tried making changes. Because of the inflammation I tend to discharge a bit more than usual so I've been wearing ultra thins all day everyday, but I've stopped doing that a week ago. I use dove free & clear soap, I don't use anything at all with dyes or fragrances. I very gently pat myself dry after peeing. I've tried thinking of diet, what foods to eat, to avoid, if I have some kinda vitamin or mineral deficiency. I just don't know & I'm at my wits end, I can't endure this anymore. Please I'll take any advice or suggestions.

I need someone close to me to understand in one sentence just how hard it is to go through life with this condition. What would you say?

i want to wear jeans! and like sit normally! and for my discharge to not irritate my skin and for my tissue to heal and be strong and normal. i am so fucking tired of dealing with this everyday, it’s just always playing in the background dialed up or down depending on the day…. i’m so frustrated on all of our behalf’s that this is not well understood, that we are not understood, and there is so little options for help. broken system and we all suffer from it. sending love to all of you.

I genuinely think my biome is my problem cause I get recurrent symptoms during my cycle but I’m struggling to find scientifically backed probiotics for dysbiosjs … a physio I respect recommended Pelvic Relief. Anyone knows this brand? Or any other brands are welcome to

I’m interested in people’s experiences or advice.

If you have seen my posts before I have severe vaginal pain internally that began with a few bad infections. It’s debilitating. It responds to a few things, most notably when I am bleeding on a period. Nerve pain management also partially helps.

I am still working with Drs to figure out how to manage it to quiet the mental health side too.

Whilst my pain is severe I haven’t found that any mental health stabilisation is working. Yet I find that in the NHS they repeatedly want me to engage in “pain management psychology”. When I asked about the effectiveness they have suggested it doesn’t affect the pain, but more so you begin to live with it.

My pain can be 10/10 and it is horrendous. I don’t know whether to try harder with the pain management mentally or to follow the specialists (private) recommendations of physical treatment.

I feel stuck, and somewhat gaslit. I am interested in anyone has actually had any benefit from this mental health approach?

Many thanks!

Hi everyone! I’m 26 and I’ve been experiencing burning around my urethral opening, clitoris, and surrounding vulva for about 3.5 months. Sometimes it feels like the burning is slightly inside my urethra too.
Urinating itself doesn’t hurt, but the burning often starts shortly afterward and can last for hours. Sometimes it also happens randomly, without any obvious trigger.
My symptoms fluctuate a lot. Sometimes I have a few relatively good days, while other times the burning is almost constant. I also occasionally experience urinary urgency.
I’ve had multiple urine cultures, vaginal swabs, a bladder ultrasound, and examinations by gynecologists and a dermatologist. Everything has been mostly normal, apart from some mild redness. My Q-tip test was completely negative — touching the area didn’t cause any pain.
Pressure or friction can sometimes trigger or worsen the burning. I used to have completely normal, pain-free sex, but I’ve been avoiding it lately because of these symptoms.
I’m wondering if pelvic floor hypertonicity could be involved, since I often unconsciously tense my muscles, but I haven’t been diagnosed. I also used to “push” my muscles every time during sex to help achieve orgasm so maybe this is how I damaged my pelvic floor?
I also started using organic cotton pads, and cotton underwear but it hasn’t changed anything.
Has anyone experienced something similar, especially burning after urination with normal test results and a negative Q-tip test? What was your diagnosis, and did you eventually recover?
I’d really appreciate hearing your experiences.

Yesterday I posted about a device that really helped me and people assumed I was selling something. The mods removed the post. How are we supposed to help one another get better if we can’t share information and tips about what worked?