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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

New Here -- this is my story

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New Here -- this is my story

Post  calidreaming999 on Mon Apr 04, 2016 10:45 pm

Hi everyone,

I am 28 years old and have been suffering from what I think is vulvodynia for 7 years now. It's been a very challenging 7 years Sad Especially listening to all my friends have normal, fun and adventurous sex lives whereas I am too afraid to even have sex for the pain it will cause and all the emotional blocks I have up now. But let me start from the beginning.

When I was 21 years old, my second sexual partner took off his condom during intercourse. A few days later, I had horrible stinging and burning and an incredibly red vulva. I was convinced I had herpes and I was terrified. I went to a clinic where I was diagnosed with a yeast infection. I took the medication prescribed, and all seemed ok.

Except, this yeast infection seemed to set off a chain reaction and my vagina has literally never been the same since. I feel frequent burning and nerve pain throughout the pelvic region -- vagina and buttocks. Through all my research online I was CONVINCED I must have herpes, though I never actually had any sores or outbreaks. In Canada, I couldn't get a blood test but I begged and begged at one clinic where they finally allowed gave me paperwork for a blood test which I took. I had been SO convinced I had herpes and would have to live with it for the rest of my life, but to my surprise the test came back negative for both strains. I don't want herpes, but at least I would have had a diagnosis.

Over the last seven years I have been tested for STis NUMEROUS times. Everything comes back negative, including yeast (although I did just get a positive yeast swab in February which I treated with diflucan). I get very itchy around the pubic/mons pubis area and often break out in what looks like a rash there. Every GP has told me that my vagina looks completely normal and sends me out the door with steroid cream. But none of that helps and none of that addresses the daily burning sensation I feel. For a long time, I stopped going to the doctor and stopped trying to get answers. I was convinced that I was never going to get relief, and that I was never going to find an answer for what I had. I gave up and I was closed off.

Just this year, I ended up meeting a really great guy who was different than any other I had met before. He valued me for who I was as a person, and didn't pressure me for sex immediately the way men in the past have. So of course, I really wanted to have sex with him. But I still had this lingering fear in the back of my mind that I had herpes -- what else could it be, right? So I went back to a new, young female GP. I got another herpes blood test - negative. And another swab. All negative.

Now I am really trying to figure this out and understand what is happening to my body so I can have some type of normal dating or relationship in my life. I forgot how nice it is to have someone in your life romantically, as I just shut down from the idea before. I am currently seeing a naturopath and I'm on a candida diet which has helped to a degree but I'm not sure if it's correlated to the symptoms or if I'm just having less of a flare up at the moment. I've switched to all sensitive skin detergents, only cotton underwear, looser pants, etc. I am taking daily probiotics and using a vaginal probiotic cream that I put on 2x a day topically. I do feel some relief of symptoms, but nothing is completely gone. I'm also trying to get allergy and food sensitivity tested -- the only time I remember having relief of these symptoms was about two years ago when I was on a really big fitness kick. I had cut a lot of things out of my diet and was exercising all the time and lost quite a bit of weight. I lost my period as a result, but I also remember not having any of these symptoms and pains and feeling like I may finally be free. Leads me to wonder if there may be a hormonal tie-in or dietary tie-in, although I have yet to see complete relief from my current diet which is much more restricted than I ever was before.

I am also demanding my GP refer me to a specialist, a gynaecologist, and a dermatologist. She prescribed me antidepressants to help with the nerve pain but I'm too afraid to try them. I have an active social life and like to go out and enjoy drinks with friends (not presently as part of the diet) and I am scared as to how they make impact my moods or personality. I also don't want to gain weight or become drowsy and tired -- I've already given up caffeine to help and I am missing my coffees so desperately.

I just cannot accept that there is no way to get relief and to heal from this dreadful affliction. I also cannot believe a yeast infection could have triggered something like this for so many years now. I try to be a very grateful person but I cannot help but think why me? How did this happen to me? I am very lucky in many ways but this has robbed me of so many years that should have been carefree and enjoyable and I have felt like a broken, damaged woman who cannot offer herself to a partner fully. I know part of the problem is in the way I'm thinking about it, but I can't help but feel that way. It's completely debilitating. I'm also afraid to get too hopeful or excited that something will help because I don't know how I would deal with the disappointment when symptoms came back. It seems like it's too good to be true, to hope that I could one day feel normal again. I feel no pain during sex either -- only nerve pain, burning and itching that is unpredictable as far as I can tell, so for a long time I didn't even know if I truly did have vulvodynia.

Anyway, I had to rant and get that all out. I am really glad to have found an active forum, and I look forward to learning more about everyone's successes and individual situations. If anyone is from Canada, specifically the GTA and has any doctor recommendations or success stories, it would be greatly appreciated.

Thank you.


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Re: New Here -- this is my story

Post  PainBlogger on Tue Apr 05, 2016 8:08 am

Thanks for sharing your story. Vulvodynia has so many different presentations that I think it's really useful that sufferers can read as many different case histories as possible.

My symptoms have not gone on as long as yours but started with a UTI and thrush at the same time. Nearly two years later and I am a lot better. I saw a gynaecologist (who was not very helpful), a women's health/specialist pelvic pain physiotherapist, and a pain management consultant (anaesthetist who specialises in chronic pain and the one I saw has an interest in pelvic pain). The physio and pain management doc were very helpful. I used lidocaine gel at night for eight weeks and that did help somewhat but I was still getting a lot pain both provoked and unprovoked. After trying pregabalin and amitriptyline with little success, I've been on duloxetine for the last six months or so and my pain flares have reduced significantly.

I've also cut out all fragranced products that have any contact with my skin down there. So no perfumed bath products, sanitary products or toilet paper. No fragranced detergent on any clothes or towels that I use for the lower half of my body. I've changed my diet to cut out tea, coffee, carbonated drinks, artificial sweeteners (as much as possible), and citrus fruits/juice. I was getting a lot of bladder/urethral pain as well as vulval pain.

I know the prospect of trying antidepressant drugs can be scary, but you can always discontinue taking them if the side effects are too much to tolerate.

The other things that have helped me are acupuncture (expensive but worth trying as the only side effects are the occasional small bruise) and dilator exercises as instructed by the physiotherapist to reduce pelvic floor muscle tension.

Even six months ago I felt very hopeless and that I'd be stuck forever not able to enjoy life and have a full relationship again with my husband. But I truly believe now that I can get at least 90% better, so well enough to do everything I want even if I have some low level pain from time to time. People do get better from this, it just can be a long road to find the combination of treatment that works. But don't give up looking for that combination.


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Re: New Here -- this is my story

Post  emalita on Tue Apr 05, 2016 1:21 pm

I'm so sorry to hear that you have been in pain for 7 years. I've only had my pain for about 2 years now, even though looking back my lady bits were never 100% pain free. I can absolutely relate to the despair that comes with not being able to be intimate with a partner. I have been with my fiance for almost 12 years now, but I haven't been able to be truly intimate in about a year. Makes me feel like less of a woman Sad I've read articles about having to find new ways to be intimate when there is vulvar pain, but honestly just the thought of a sexual act causes discomfort because it only reminds me that I'm broken.

One of my OBGYNs prescribed me gabapentin in a compounded cream because she assumed the pain was nerve damage since nothing was ever showing up on a wet mount. I purchased the Rx but chose to never use it. I just know in my gut that this isn't a nerve issue for me. I won't write out my whole story here since I have it posted already, but I finally found a doctor who used a more advanced testing method to determine the health of my vaginal flora (he believes that vaginal secretions cause a great deal of vulvar pain). I am only on week three of my 4+ month treatment plan with him, but I'm trying to be hopeful.

If your pain is caused by damaged or overactive nerves, antidepressants and anticonvulsants seem to be the treatment of choice for most people. I had taken antidepressants as a kid for many years and hated that they made me feel numb emotionally. So I was extremely hesitant to use it, but if you decide to give it a try, see if you can get them compounded in a cream. That way it shouldn't have such a negative systemic impact.


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Re: New Here -- this is my story

Post  calidreaming999 on Wed Apr 06, 2016 1:35 am

Thank you guys for the support! I didn't realize that you could get the gabapentin as a compounded cream. I will ask about that when I go back to the Doctor on Thursday. I have struggled with some depression and anxiety issues in my life and have always managed without any anti depressants and I am just too afraid for how it would impact my moods. Not to mention from reading other experiences, it just seems like it has so many negative possible side effects. I appreciate both of you sharing your experiences with me. Looking back, I realize that I also had an undiagnosed UTI that traveled up to my kidneys because it was undiagnosed. I've also suffered from irregular periods for a very long time, though they've since regulated. I had another UTI this January. I wonder if my pelvic region is just extremely sensitive and all of these issues are working together to make things tougher for me.

I hope that we all stop suffering soon Sad


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Re: New Here -- this is my story

Post  emalita on Wed Apr 06, 2016 2:53 am

UTIs are so horrible. Do some research on a supplement called D-Mannose. The pure form comes in a powder that you mix with water (tastes slightly sweet and bitter - super easy to take). I had found out about it when looking for natural UTI cures, and both the Functional Medicine Practitioner and Naturopath I met with recommended it. It only works on UTIs caused by E. coli bacteria, but that is the most common cause. There are actual studies done about its effectiveness on PubMed; so it's not just something only natural doctors use. I've read about people using it to cure UTIs as well as prevent them. Hopefully that can help keep you UTI free if that is still a concern of yours, and it would hopefully avoid the need for antibiotics, which I know got me into the situation I'm in now.

My Naturopath had recommended seed cycling to me to regulate my periods/hormones, which I've read some great success stories on. However, my cycles are super regular; so I didn't want to mess with the one normal thing I had in my life Smile


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Re: New Here -- this is my story

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