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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

» MAY HAVE FOUND A CURE- PLEASE READ
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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

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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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

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 …

Comments: 4

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



Comments: 8

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.

Comments: 0

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


I'm New! and recovering from surgery

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 1:19 am

Yes, there is a list on nva.org but you do have to join which costs $40ish but if you don't have the money you can put in a request to have the fee waived

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Re: I'm New! and recovering from surgery

Post  lonelyone48 on Sat Mar 08, 2014 1:46 am

Ok thanks!

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:52 am

Wow, your doctor sounds awesome!
Unfortunately, in Canada, I can only go to a gyn with a referal from my family doctor. The gyn she sent me to seems to understand this stuff very well, but I've had so much difficulty with him over the years because he doesn't communicate well, can be arrogant, and his staff is even worse.

At one point, several years ago, I went back to my family doctor and asked if she could refer me to a different gyn. I'd had enough. And she did. Unfortunately, that new gyn knew nothing of vulvodynia, and I got bounced from doctor to doctor, wasting time and left to feel like I was some overly sensitive crazy woman.

So exasperated, I finally went back to my original gyn. He and his office seem to have improved a great deal regarding relating with people, but still no where near what you're describing! I mean improved means now if I call and leave a message, they will actually call me back MOST of the time. And when I called to ask questions before my surgery, they actually put me thru to the doctor the second time I called. This is a huge improvement for them.

For me to feel comfortable, I really need to have more information.. or at least to have been told some kind of general thing like 'your body is going to do strange things for weeks after surgery, but don't fret about it unless you're running a fever or... whatever.'  But I got none of that, and on good days, I figure it's all gonna be okay. On my bad days I fret quite a bit about what I don't know/understand.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:58 am

Does the list of specialists from nva cover only the US? Or does it also include major cities in Canada and/or other countries?

Chrisk

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 6:18 am

Chrisk,

That sounds overly frustrating! It was really hard to get in to see this doctor but once I finally did I have had first class treatment. They can't/don't always call back right away, but  they always do and if I need something they make sure that I have it.

I'm not sure about the list, I actually found out about it from my specialist so I didn't need to search through it, or even join the association. There are a lot of helpful articles/pamphlets on the website though if you have time to search through them and you don't have to pay a dime. I know there was another place that I ran across a way to search for doctors that had knowledge of vulvodynia but I can't think of it off the top of my head--I will do some looking/thinking for you. I truly think it is essential to have your doctor available to you, especially for something like this-where there aren't many places where you can look for valid information, etc. and I am sorry that your doctor is just not providing you with this.

I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Are you noticing any of your odd symptoms going away? I would say that it is completely normal to have odd poops for a while after a surgery in the rectal area and also for a little while after taking pain meds too, but they should straighten themselves out after a while, probably a good while. I still feel exhausted and can't bend over! My rule of thumb with worrying about things is, a) if it's getting noticeably worse, or b) if it is persistent, bothersome, and not improving, I will call my doctor.

shanabanana999

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sat Mar 08, 2014 3:40 pm

Dr trabin in west palm beach florida. I think everything you're feeling is normal just wait til you're fully recovered until you start to worry...

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sun Mar 09, 2014 2:35 am

shanabanana999 wrote:
I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Thanks! I found the websites you mentioned. That's exciting! I'll give a call on Monday to ask about their programs and if they have a database of specialists, etc.

As for my symptoms, the burning pain is slowly calming down, but the odor is getting worse. I've had a day or two now when I otherwise feel pretty good, but am still getting fatigued easily. I'm less worried as time goes by.. starting to look forward to the 6-week mark (I'm not quite half way there.) so that I can maybe start physio and get back to it!

Thanks to everyone who's responded to my questions/comments/concerns. Your responses are so very much appreciated! I can't thank you enough.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sun Mar 09, 2014 1:38 pm

Honestly I wouldn't change doctors now. You made the commitment to be with him others are going to be reluctant to see you until you've healed.

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Re: I'm New! and recovering from surgery

Post  Chrisk on Mon Mar 10, 2014 12:09 am

yes. agreed

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Re: I'm New! and recovering from surgery

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