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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 1

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Just diagnosed / Aimtriptyline weight gain!

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Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 2:44 pm

Hello:) So glad to find this online support group site! My symptoms started almost 6 months ago (Nov 2015). Woke up one morning with frequent urination (I've always had frequency since menopause) and never had a UTI before. Fast forward...after seeing urologists, a gynecologist, urogynecologist, NP who specialized in Interstitial Cystitis, 2 cystoscopies, many ecoli UTI's....I feel the final diagnose is correct - vaginal atrophy (started premarin cream 4 months ago) and vulvodynia (just diagnosed with this couple days ago by gynecologist). Symptoms went from frequent urination, to severe burning, to a CONSTANT horrible urge to urinate, to a steady burn (still some frequency, especially when another UTI) on a pain scale from 4-6. I couldn't tell if it was my urethra or my vagina where the burn was coming from! Gyno the other day said there was redness around the outside of my vagina most likely causing the burning (said urethra and vagina inside looked good). Vaginal was not sensitive to touch at all, but I was burning badly after the vaginal exam was over.

She prescribed a vaginal ring, liquid lidocaine that I am to soak in a cotton ball and sleep with it pressed against my vaginal opening at night, and she wanted me to continue on the aimtriptyline I was put on 2 months ago by the NP I saw. I told her NO WAY! Reason being, in 2 months I have already gained 14 lbs! It causes carb and sweet cravings and I am trying not to indulge, but I read that the weight gain from it could also be hormonal related. I know over 50% of women gain weight on aimtriptyline. After 2 months on it and still have irritation/burning (I have frozen ice down there 24/7) I don't think the aimtriptyline is even helping (other then I sleep great). She said it could take longer, but I would like to try the ring and lidocaine without the aimtriptyline because I refuse to gain any more weight! Has aimtriptyline really helped anyone with my kind of burning? Thank you!!


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Re: Just diagnosed / Aimtriptyline weight gain!

Post  emalita on Sun Apr 17, 2016 4:44 pm

Hi and welcome!

Don't you hate that everything is so darn close down there that it is hard to tell exactly what hurts! I've had the same issue with not knowing if it was my urethra or vagina that was causing the symptoms. I refused antidepressants and anticonvulsants from my OBGYN. I was on them as a kid for migraines (including amitriptyline), and I hated the way they made me feel. So, unfortunately I can't speak to them for vulvodynia, but I know a lot of women have given them a try on here.

Have you ever tried a powder supplement called D-Mannose for prevention and treatment of your UTIs? Two of my Naturopaths recommended it to me when I was having UTI issues. It only works on UTIs caused by E coli, but there are studies on its effectiveness on PubMed. So it's not just fluff that only Naturopaths use. It is a little sweet and a little bitter but super easy to take (just mix it with a little water). I bought mine on Amazon for pretty cheap.

My current specialist has me on a bioidentical estrogen tablet vaginally every other night (among other things), but I'm only starting my 5th week of treatment. He said it will take about 2.5 to 3.5 months for me to feel a difference; so I can't comment on how well it's working yet.

I assume all of your tests come back negative for everything? The only thing that stopped my urethra/vaginal burn (also had a weird prickly feeling at my urethra as well) was boric acid suppositories. However, that did nothing for my current pain, but at least I can check one thing off my list.

I hope the ring and lidocaine relieve your pain!!


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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 5:08 pm

Castle 16 Go back to your doctor and ask to be put on nortriptyline 20mg at night.I have been on this since June 2012 with a diagnosis of vulvar vestibulitis. Your story is very similar to mine. It takes a longtime for these meds to work but eventually I hope you will notice a difference. Persevere with the side effects.


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Re: Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 6:29 pm

Thanks for your reply about nortriptyline - did you have weight gain from this med? I know it's just like aimtriptyline. I was hoping the vaginal ring and the liquid lidocaine/soaked cotton ball would be enough treatment because the weight gain has been emotionally upsetting Sad. Really appreciate your responding. I'm new to this site, so not sure how to navigate it all. Not sure if I'm supposed to re-type my subject line in the 'post title' section under Post a reply -so sorry if I didn't do this right! I hope you are feeling better Smile


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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 6:55 pm

Nortriptyline is a more advanced drug and more expensive than amitriptyline. It has far less side effects and suited me more than amitriptyline. I have been on 20mg until last September when my dr up it to 30mg to help with my migraines that I also have. That extra 10 has helped both conditions. I have put on a few pounds. Yes it does give you the munchies as someone else said on this forum.


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Re: Just diagnosed / Aimtriptyline weight gain!

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