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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» 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 …

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

One year with VV/ Where my pain is now

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One year with VV/ Where my pain is now

Post  mars215 on Fri Aug 24, 2012 1:33 am

Hi all,

My name is Mars and I was diagnosed with VV/IC/and Pelvic Floor Dysfunction about a year ago... I've been living with the symptoms for about 18 months... but I'm glad to say that my pain has gotten A LOT better. I hope this story gives some of you some comfort...

About 18 months ago, I contracted a UTI that wouldn't go away. My primary doctor gave me 3 rounds of antibiotics... they made me feel sick and even though my cultures would turn up negative after, my body didn't really feel the same. The pain started in my left pelvic area, kind of by my waist... I wasn't sure what it was and when I would go to my doctor, she didn't really know how to deal with it... I noticed that the pain was worst after eating food or drinking (anything). At one point, I felt pain following a drink of water, and the pain actually followed where the water was going. Weird. Anyways, my doc finally referred me to a urologist and it was there that I got my trio of diagnoses. At that time, I had provoked VV... so I didn't notice the pain unless there was contact. But a month later, I started feeling a burning/stinging sensation down there and I thought I had UTIs again... the cultures were always negative, and thank God my uro didn't prescribe antibiotics until she received the results of the cultures. The pain was worse after eating anything acidic...stress... sitting for long periods (which is tough bc i'm a student)...any kind of sexual activity (even just being aroused)... tight clothes... and before/during my period. I would say that in the beginning, i would be in pain for 75% of the day... everyday....the worst being a level 9/10... the best being a 4...

I started treatment in November; first, a topical cream called traumeel that helped with inflammation and pain. A few weeks after traumeel, i started on vaginal valium suppositories. These changed everything. They targeted my highly tight and wound up muscles down there. I was a little bit apprehensive about the valium, but it gave me such relief and i found my pain decreasing significantly. At the end of december, I started pelvic floor physical therapy... basically, imagine a clam tightly shut... that was my hoohaa... the pt helped me to relax and re-train my muscles so that i could relax them when i felt them tightening up. my muscles and tissues started improving... they weren't overly tight all the time, so the quality of the tissue got better and i think that helped with the pain. When i wasn't with my pt, i was using dilators at home, to help stretch and exercise the muscles... i also worked out my core muscles (everything is connected, ya know?) at pt and at home.

I completed my pt in about 4 months (10 sessions?)... and right around the same time, my uro decreased my valium from every night to every other night... a month later, she decreased it again to every 2 nights... and now, i only use them as needed...maybe once a week. At one point, i was getting trigger point injections of traumeel... these were really painful (for about 5 seconds) but they definitely brought relief... my insurance stopped covering them though, so i haven't had them done in a while.

Physically, i feel much better... i go days without having a flare... and the worst is still what i described above (stress, period, sitting)... but i've been able to manage the pain and my own reactions to it. I'm not sure if i will ever be 100% but i would say i am at about 85% and very thankful... Mentally, it was super difficult and I lost my sense of self, self-esteem.... self-confidence in my body (this issue deserves it's own post)... but i am slowly starting to find healing and beauty again. I gained a lot of weight throughout this whole ordeal, but I recently made it a goal to lose it... i didn't want to punish my body... i wanted to nurture it back to health... so i started yoga about 8 months ago, and not only has it helped me become stronger and leaner, it has also helped me manage my stress and anxiety. i HIGHLY recommend doing a gentle, restorative yoga to help with VV.

So here I am, about a year since I was diagnosed... I have come a long way with my body... first HATING IT... then learning about it.... soon understanding it... and now, appreciating it (it's not perfect, but it's mine!). I know that the treatments I mentioned above may not work for everyone... but i'm hopeful that there will be something out there to give you relief... I think the number one thing is finding it in yourself not to hate your body... being able to make peace with the pain... and being able to find a way to manage your life with VV... each day, i try not to envy other people who have normal hoohaas... i try not to be angry at my body when i'm in pain... and i try not to bring myself down...

I hope this post helps... feel free to message me or ask questions... take care everybody <3



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Re: One year with VV/ Where my pain is now

Post  Loulou on Sun Aug 26, 2012 11:56 am

Hi Mars

Thanks for sharing your story - its great to hear some good news!

I totally agree with you about doing gentle yoga. I have found it really helpful in getting my pain down and it makes me feel better overall, as if my body is getting stronger and therefore better able to help heal itself. And like you, making friends with my body again just makes me feel happier.

Hope your progress continues.


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Re: One year with VV/ Where my pain is now

Post  mars215 on Sun Sep 09, 2012 12:29 am

Thanks, Loulou. Wishing u all the best Smile


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Re: One year with VV/ Where my pain is now

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