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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

Mon Oct 16, 2017 2:22 am by Sagewoman

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

going downhill

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going downhill

Post  Remi88 on Sun Jul 29, 2012 10:56 am

After being pain free for a few months it was obviously too good to be true. To think that i could take a couple of pills a day and get on with my life. The pain started coming back in september last year and has been constant since. I have a job in retail management and every day I'm there I feel as though I'm putting in 60%, I have no energy or enthusiasm. I feel that the V is finally getting the better of me and that it is only down hill from here. My boyfriend is patient and understanding. Right now he is over seas and will be there for 2 months. I find myself incredibly emotional and teary without him here. And since having the V I have become a weak and insecure wreck. I am afraid that with him being away for so long he will realise how much of a burden I am. We have attempted to have sex a couple of times but have been unsuccessfull. It has been 10 months since we have had painless sex and I'm scared that eventually he will need more than i can give him. I'm sure he must feel like he is constantly caring for me like a sick puppy. I have just gotten over a bad case of cellulitis and I am also due to have surgery to have a dermoid cyst and possibly an ovary removed. I am so desperately depressed and I don't know where to turn. I am trying botox but I'm not optomistic. No one here and no woman deserves to live with such a curse.


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Post  cba321 on Sun Aug 05, 2012 7:17 am

Thanks for sharing your story, I understand how debilitating it can be. I just had a Botox injection yesterday and will be starting Physio next week. Although Botox will not cure it completely, it can possibly get you to a point where it is manageable...and it what I am hoping for. You might want to have a read through this randomised control trial on Botox. http://www.rima.org/web/medline_pdf/ObstetGynecol2006-108-915-23.pdf


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Re: going downhill

Post  bCherie on Tue Aug 21, 2012 2:32 am

Hi Remi88,

I'm so sorry for your pain. Thank you for sharing your story I know first hand how depressing and debilitating all of these things can be, both emotionally and physically!

As something to think about. I have had successful treatment through a vuvladynia trained physio/chiropracter.
It sounds like you have had a lot of trauma to your internal organs and are about to have more. Often when our internal organs receive a shock or damage they can tense and pull up/back or twist sideways as a result. If you leave this untreated it can often not correct itself (much like an untreated sports injury). When our internal organs (kidneys, bladder, uterus) do this it places direct pressure on the nerve endings in our pelvic area which can directly cause painful sex!!

I don't know the causes of your problems that require surgery and I certainly am not suggesting a physio can cure all your problems but I'm fairly certain they could help you ease pain related to sex and burning around the vulval area. If your able you should try to find a vulvadynia trained physio/chiro and see if they can help you at all!

I wish you all the best of luck and please know you are not alone! Many of us are walking similar paths to you and feel for you with all our hearts! xx


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Re: going downhill

Post  bCherie on Tue Aug 21, 2012 2:39 am

as a quick note... were you pain free because they put you on an anti-depressant like Endep?
If yes then I can explain that. Anti-depressants 'happen' to work like advil(head ache tablets) BUT specifically for nerve pain. So if you take them for a long time you build up an immunity to them.

Because the are 'just' a nerve ending pain killer the tablets never 'cured' you of anything. The underlying problem was still there. So once your body became immune to the effects of the particular 'nerve' tablet you are on the pain would have started to creep back.

I had the exact same experience and was totally devastated. My gynocologist couldn't even explain it as she didn't really understand WHY it worked in the first place. My physio explained it because she understands how nerve pain killers/anti depressants work on nerve pain.

The upside is, if this is your experience, it supports the idea that maybe you are experiencing nerve pain that a physio/chiropracter could help with.


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Re: going downhill

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