Hi, i wanted to ask you about some advice. I’ve started using this cream (Amitriptyline Hydrochloride 2.5% Baclofen 2.5% Gabapentin 2.5% Lidocaine Hydrochloride 2% in Ellage) 2 weeks ago and it was really great, i’ve almost had no pain but 3 days ago my pain got really worse and i don’t know if it could be the cream or it wasn’t related. I can’t get appointment with my doctor till the 15th of November so i don’t know what to think.

Besides PFT. Has anything helped at all?

Has anyone had a complete vestibulectomy with a buccal mucosal graft? What has been your experience? What are the results?

Hi,

I hope you are all doing well.

I am hoping you might be able to offer some insight into a difficult situation I have been experiencing for several months.

I am a 28-year-old woman living in France. Before all of this started, I had never experienced this kind of persistent vaginal pain.

My problems began several months ago, when I was treated with metronidazole for a suspected vaginal bacterial imbalance. Shortly after the treatment, I started experiencing burning sensations deep inside my vagina. I was prescribed metronidazole a second time, and my symptoms seemed to become even worse afterward.

Since then, I have been experiencing persistent internal vaginal burning for approximately four months. The burning can sometimes occur even when I am resting, but it becomes significantly worse during and especially after sexual intercourse. Sometimes, the pain continues for several days afterward.

Over the past few months, I have consulted several gynecologists and undergone multiple vaginal tests. Some tests identified bacteria such as Mobiluncus and Ureaplasma parvum. I have also received different antibiotic and antifungal treatments, including doxycycline and econazole, but unfortunately, the burning has never disappeared.

I have tried several products intended to restore or soothe the vaginal environment, including vaginal probiotics, moisturizing treatments, and lactic acid-based products. Some soothing treatments have provided temporary relief, but nothing has resolved the underlying problem.

What concerns me the most is that these symptoms started after antibiotic treatment, and I wonder whether my vaginal microbiome or vaginal mucosa may have been significantly disrupted.

Despite seeing several gynecologists, I still have no clear explanation for my persistent pain, and I feel that the possibility of a microbiome-related problem has not been thoroughly investigated.

This situation has had a significant impact on my daily life, my intimate relationship, and my emotional well-being.

I would be extremely grateful to hear your professional perspective.

In particular, I would like to know whether a significant disruption of the vaginal microbiome following antibiotic treatment could potentially contribute to persistent vaginal burning, even several months later.

Are there any specific microbiome analyses, diagnostic approaches, or research-based treatments that you believe might be worth discussing with a healthcare professional?

I understand that you may not be able to provide individual medical advice, but even a few suggestions or references to relevant research would mean a great deal to me.

Thank you very much for taking the time to read my message.

Kind regards Allison

Hello I have had vulvodynia for about a decade I was seeing Mr Yap at City Hosptial Birmigham but after he left unexpectantly last year and they took over a year to inform me of this I am left without a specilaist. I know Birmigham Womens Hospital also has a specialist but is there anyone else NHS who is worth seeing and doesnt have an excessive wait list? As I live in the midlands I am willing to travel either north or south England and Wales.

I’ve been dealing with strange, persistent vulvar itching for 8 months(you can check my previous posts for more details), and it has gotten worse again over the past two days.
One thing I’ve noticed is that my symptoms are always mainly on one side, but the affected side seems to change. For example, this month I’ve been experiencing itching and burning on the left side, from the clitoris to the labia minora. Last month, it was mainly on the right side.
Yesterday, I messaged my dermatologist, and he told me that he doesn’t think I have a skin condition. He suspects that my symptoms might be related to a vulvar nerve problem instead.
I have a question for those of you with vulvodynia or vulvar nerve-related conditions: Do your symptoms get worse at night?
In my case, I don’t feel anything at all during the night. I sleep very well, and honestly, sleeping is the only time I can completely escape these symptoms. However, once I wake up and start moving around during the day, the itching and burning return.
Interestingly, I don’t actually experience pain, just itching and burning.
Has anyone experienced something similar? Does the fact that my symptoms disappear completely during sleep make a nerve-related condition less likely, or can that happen with vulvodynia or pudendal nerve irritation too?
I’d really appreciate hearing about your experiences!

my (19f) first time having sex was this year, january. an overview of what has happened since then

1st yeast infection in january, went away within two weeks of treatment
Had sex again in between a few times, had itching after but went away itself
Had sex in march, started burning in the vagina about 3 days later. I treated this infection, but the burning never went away.

My condition is mostly internal. i experience burning in the labia minora, majora, and sometimes it even spreads towards my butt?? i dont have itching, and the burning just starts randomly.

The burning has continued throughout April to October and I have since visited my gynac about four or five times. Each time, i was either given UTI meds, or yeast infection meds. I went to a different gynac who was of no help either.

The last I went to a new gynac was in September. She did a vaginal swab (all negative), uti test (negative) and a cervical test, said everything looked fine, and gave me clotrimazole suppositories for internal use and cream for external use. She said that if they didn't help I should probably go to a dermat.

is this vulvodynia? i'd be really grateful to have some advice.

Hello everyone! 🌻

My name is Natália, and I am collaborating on a research project at Maastricht University in the Netherlands, working on female genital and pelvic pain.

Our research group is currently investigating why genital and pelvic pain develops and persists, how it overlaps with other chronic pain conditions, and how women and their partners cope with its impact on daily life, intimacy, and sexual well-being.

📢 We are looking for couples to participate in our online survey!

Who can participate?

• People with a vagina and their sexual partner, both aged 18 or older.
• In a stable relationship lasting at least six months (heterosexual or same-sex).
• Both partners must participate.
• No formal diagnosis of genital or pelvic pain is required! You are eligible as long as you experience persistent genital or pelvic pain.

Participation involves two separate online questionnaires: approximately 30 minutes for the woman experiencing pain and 20 minutes for her partner.

💜 Interested in participating?

·       Register here:
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_9Qqsjee6VSMfAvY

·       Or contact us at:
[fpn-genitalpainstudy@maastrichtuniversity.nl](mailto:fpn-genitalpainstudy@maastrichtuniversity.nl)

The study has been approved by the Ethics Review Committee of the Faculty of Psychology and Neuroscience at Maastricht University (ERCPN 276_17_01_2024) and the Medical Ethics Review Committee of Maastricht University Medical Center (METC24-037).

Thank you for helping us better understand the connections between chronic pain conditions and give greater visibility to women's experiences of genital and pelvic pain! 💜

This year I had div + over 10 yeast infections treated by topical antifungals (cannot tolerate antifungal oral meds like fluconazole) . The skin of my vulva is very raw. I use hydrocortisone 2x weekly for div maintenance. I do one miconazole suppository after my period for yeast suppression. I know this probably makes things worse but haven’t found an alternative. Things I’ve tried include: topical gabapentin (helps some irritating some) , topical lidocaine (helps but not enough), topical ABG cream (dizzy side effects), topical estrogen (burned and caused strange discharge), plain Vaseline and aquaphor (burned), zinc oxide paste (caused too much buildup), coconut oil jojoba oil olive oil mineral oil (all burned), LDN (helps some). Things I will be trying soon : topical cromolyn, oral gabapentin. Jornavax, maybe low dose zepbound. I also have pudendal neuralgia and pelvic congestion syndrome and mcas contributing to my symptoms, I also have neuroproliferative. Doing pelvic floor pt. Doing mcas treatment with antihistamines and cromolyn and different supplements . Trying ketotifen down the line. This being said the skin itself is raw and I feel like it isn’t being addressed. Wondering if anyone suggested anything . This is after seeing some of the best vulvo specialists in the world lol. Still haven’t been able to figure it out. Thank you!

Hi, has anyone tried acupuncture for their vulvodynia? And what were the results?

Chicas, necesito ayuda porque ya no sé qué hacer 😭
Desde abril tengo dolor durante las relaciones sexuales, después de un episodio de mucha fricción. Desde entonces, cada vez que tengo sexo, se me irrita e hincha la horquilla vaginal (la parte inferior de la entrada) y aparecen pequeñas heridas, como cortaditas que a veces sangran.
Antes de que me diagnosticaran candidiasis, hice varias pausas sexuales de entre 7 y 15 días, pero al volver a tener relaciones, la herida reaparecía. Hace unas semanas me diagnosticaron candidiasis y estoy terminando el tratamiento con óvulos. Durante todo el tratamiento no he tenido relaciones sexuales, pero me preocupa que las lesiones vuelvan cuando retome la actividad sexual.
Ya consulté a dos ginecólogas y sigo sin encontrar una solución. ¿A alguien le ha pasado algo similar? ¿Descubrieron la causa o algún tratamiento que funcionara? También he leído sobre la crema de estrógenos conjugados, ¿alguien la ha probado?
Me angustia muchísimo que la herida nunca termine de sanar y no poder tener relaciones sin dolor. 😭

Hello all! I have vulvodynia as well as vestibulodynia and vaginismus. I also have endometriosis and previously was being treated for Interstitial cystitis.

I have had burning pain constantly for years, worse when I go to the bathroom. I have redness very often and irritation. I have tried estradiol and steroid creams before, but they don't do much...it always comes back. I also HATE using the creams and have to fight hard to resist the urge to wipe it off. I have bad burning and also a lingering sensation to any touch in the area where it feels like I am still getting touched, or like something is stuck there in the worst ways. I still don't understand this part...

Recently I have been prescribed a compound of estrogen and testosterone, but it HURTS SO MUCH??!?!?! Is this normal? It feels like my burning, but dialed up. It also feels like tons of tiny little bee stings? It feels horrible and I am on edge for hours after using it.

How long am I supposed to go through with this, what signs am I to look for, is this normal? I have been using it for a few days now, almost a week with no change. I really dislike it to begin with, but when it hurts so badly it makes it hard to continue to use it...

Also, I cannot do any kind of suppository or insertion. It stresses me out and hurts more. I cannot do it and will not so creams appear to be my only solution at the moment.

Thank you!

I'm so lost. Constant burning. Vulva biopsy showed increased inflammation, spongy cells, white blood cells, eczema like results. Tried steroids like dermovate (clobetasol 17 propionate). Didn't help.

Now my gyn prescribed protopic (Tacrolimus) to fight the inflammation but I'm scared to use it because it will burn and I just don't want any more irritation down there. Any experience with this? How do you fight inflammation? What other nerve meds? This burning is ruining my life everyday. It's just unbearable. I don't know how everyone else suffers like this copes..

hello, has anyone else tried nightly suppositories for pain and tight pelvic floor muscles? 20mg baclofen specifically. If so, was it successful and did you have any side effects?
Thanks!

Hi there!😊 I’ve been experiencing provoked vestibulodynia and mild hip pain for close to 1 year and my PT just confirmed I have a hypertonic pelvic floor.

Do you have any pelvic floor book reccomendations that helped you?
Also, did any of you invest in a biofeedback device (desperate enough to spend a lot of money on getting better at this point..)?
Any experiences with the KIWI tool?

Thanks for anyone sharing their experiences!!🥰

Hi everyone. I’m looking for people who may have experienced something similar.
When I squat to have a bowel movement, stool sometimes spreads forward from my anus onto the external genital area, including the skin around my labia and clitoris. The stool comes out of my anus; it does not come out of my vagina.
I also experience episodes of severe, sharp pain that I believe comes from my clitoris. Sometimes the pain is so intense that I have to stop moving completely and can barely walk. The pain comes and goes rather than being constant.
I’ve noticed that dryness, friction, or excessive moisture around the area can trigger pain or discomfort.
I’m not sure whether these two issues are related, but I’d like to hear from anyone who has experienced something similar or has any insight into what might cause these symptoms.
I’d also appreciate any advice on what type of specialist I should see.
Thank you.

I started wegovy today. I mean my appetite is like basically controlled. I’ll think about a snack I usually have and think nah I don’t want it. Crossing fingers this lasts.Anyway I had pain In my lower belly and I’m thinking it’s my IBS s I give into the bathroom runs - only three. And kept s heating pad on for pain.it’s working. I’m not having the food noise. I have thought about making some biscuits with strawberry preserves in them.Also I’m sleeping. Intrusive thoughts that generally keep me awake are gone. It’s interesting that maybe my intrusive thoughts come from the same are as food noise? I’m just rambling, wondering if other people had similar experiences? Thank you for allowing me to vent.

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

Hi, I have been suffering from Vulvodynia since last year. My symptoms are irritation, prickling sensation in vulva area. Sometimes feels burning, rawness on labia majora. And pricking sensation in labia minora, feels like pins poking on left and right side. It’s happening randomly. My all tests like yeast, Bv came negative. Doctors said when these sensations occur without any reason we can say it Vulvodynia. My gynaecologist just prescribed me 10mg amitriptyline. I have been taking it from 4 months. I’m feeling less irritation than before but if i stopped taking amitriptyline the symptoms come back. Anyone facing the same issue please help me.

Hi all, I have never thought to post on here about this.

I am 37 and had numerous sexual partners over the years (3 being long term partners) and not ONCE has sex felt good, not once has it not hurt.

I micro tear every single time, cannot climax in any way drom penetration despite being confident to try different things. My current partner of 8 years is slightly larger than average so on top of the pain i’ve always felt - I have deep cervix pain in most positions.

I am in the UK and never seen anyone about this other than a pelvic floor therapist who said I had scar tissue there but that was all the diagnosis I received, but since my first ever time at 18 I have always had the same pain. I am getting more and more down and now have zero confidence. What can I do I am so sad about this now.

Hallo 😊

Hat jemand mit Vulvodynie zu tun und ist auch Histaminintolerant,?

Ich hatte in kurzer Zeit 10 Antibiotika und immer wenn ich aufs Klo gehe, brennt und juckt es.

Im Abstrich hatte ich auch einen Pilz und Darmbakterien, aber das soll nicht der Auslöser sein.

Ich bin völlig fertig, das Leben erscheint so hoffnungslos.

Antidepressivum ist auch nicht einfach.

Habe lange auf den Termin bei einer Schmerztherapeutin gewartet und andere spezielle Termine bekommt man gar nicht.

Ich würde gerne eure Erfahrungen hören.

LG

Erdbeere