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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» 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

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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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 …

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

New Member, happy to see an active forum! My story..

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New Member, happy to see an active forum! My story..

Post  Jenn89 on Mon Aug 19, 2013 12:37 am

I haven't really done any research or looked into Vulvodynia much AT ALL since I was diagnosed with it almost 7 years ago. It's been such a long and frustrating thing for me to deal with, and I cry at almost all of my doctors appointments. At my last one, she thought it would be a good idea to see a counselor. I can't picture someone knowing nothing about my condition being able to help me, so I decided to go on a hunt for a site. I was pleased to see that this one seems to be pretty active.

As for my story, I don't remember ever having pain. I used to have trouble inserting tampons. I was finally able to insert one one day when I was about 16. When I went to take it out, it wouldn't come out and was extremely painful to tug on. I was at my boyfriend's (now ex) house at the time and I had to ask him to take me home. I had to tell him it was girl problems.
Then I get home and I have to talk to my Mom, who I don't really share information with anyway. Turns out, I needed to take a trip to the ER. Thank God I got there just before the last female doctor left. They had to give me a few shots of numbing medicine down there to soothe the pain. No Turns out my hymen was very thick and they referred me to see an OBGYN since I never had.
I saw my first doctor who referred me to another doctor, who referred me to another doctor, who referred me to another doctor and so on..... until finally one decided I would need surgery to have my hymen removed.
I believe my hymenectomy was in 2007.
After the surgery I remember being told to sit on ice packs, and that was very painful.
My doctors now think that the surgery was a trigger, but I was already genetically set up this way.

I've tried (I'll be making many spelling errors) lidocaine, halobetasol, compounded ointments, neurontin, an antidepressant, physical therapy, and I'm doing exercises at home. Nothing seems to help. I'm completely hopeless.
It's hard living as a 23 year old with this issue. It's not easy finding a man that will understand.
I ended up breaking things off with my then boyfriend for other reasons, but he was very understanding. And unfortunately I just found another guy who was EXTREMELY understanding, but things just didn't work out.

I guess I just need some uplifiting words and advice, but not lies. I hate when my friends try to say the right thing. They don't really understand. I appreciate their effort, but I guess I just need to talk to someone who's going through it.

Sorry it's so long. I hope some of you still take the time to read it. I really need some support!


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Re: New Member, happy to see an active forum! My story..

Post  Cat_in_Canada on Sun Aug 25, 2013 3:54 am

Hi Jenn,

Thanks for sharing your story. I understand how frustrating it can be to suffer from this condition. I've talked about my condition to two different psychiatrists. My current psychiatrist tries to be understanding, but I'm not sure if she really gets it. However, she is much better than the first psychiatrist I saw, who told me that my problem was that I was trying to have sex outside of marriage, and that once I was married and trying to get pregnant, everything would work out. I thought that was pretty unprofessional and offensive!

I have also had a tampon stuck inside me before. If anyone else has this problem, one thing to try before going to the ER is to drink a ton of water. For me, it is difficult for my muscles to remain tensed when I'm peeing, so that is how I got the tampon out! I don't know if that would work for everyone though.

It can be difficult to find a partner that is understanding, and I'm glad you have had some positive experiences. I think the most important thing in a relationship is to communicate what you are feeling, and to make sure that he understands that the problems you may be having with sex are due to your medical condition, not him.



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Re: New Member, happy to see an active forum! My story..

Post  tinkerbelle2 on Sat Oct 12, 2013 6:58 pm

Hi Jenn, I'm also quite new to this forum and delighted that people actually respond.

Sorry to hear you've had such a rough time. I'm 21 so not much younger than you, and it really is such an awful thing to go through. Things are stressful enough at our age.

How are things with you at the moment? I've tried most of the things that you have too and none have made any permanent improvements. Xx

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Re: New Member, happy to see an active forum! My story..

Post  Nelsonhs30 on Thu Oct 24, 2013 6:35 am

Jenn, my story is identical to yours! Also had the hymenectomy which probably triggered my vulvodynia. Hang in there! Something will work! I'm currently on gabapentin 1000mg and still waiting. Have you taking of surgery? It may be our best option, especially if nothing else was working for you. Stay strong! Personal message me if you ever wanna talk!!


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Re: New Member, happy to see an active forum! My story..

Post  mary jane on Thu Oct 24, 2013 8:22 pm

Jenn, what are your symptoms ?
So sorry to hear you have this, I know what it's like , I'm 26 and feels like I will die alone and in pain
mary jane

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Re: New Member, happy to see an active forum! My story..

Post  Jenn89 on Wed Aug 27, 2014 12:02 am

Wow. I feel like a horrible person! I was so excited to find a forum that was active.. Then i became inactive. I recently hit a milestone though so I thought of this forum and told myself I needed to catch up! Things are still pretty painful. Even everyday things like driving in the car or sitting in a chair get me. The dating thing is still rough. But i have to say, every person that I was saying & told, was so understanding. It's crazy. I've been so lucky! As for my milestone, well, I finally had intercourse for the first time at age 24.
It hurt.
We used lots of lube, it wasn't so bad going in, but he said I was so tense I was pushing him back out. So I had to remind myself to relax and took deep breaths. Every time he would "flex" I would feel tons of pain! So he tried to hold back on that. He coached me through it. Finally after only about 3-5 minutes I told him I had to stop. He pulled out and I just laid there. As I laid there I felt the blood leaving my face and I started to see stars. I was about to pass out. Ugh. I don't know if it was the anxiety, the pain, or both, but it was rough.
I think if I practice more, it'll get better.


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Re: New Member, happy to see an active forum! My story..

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