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Today at 12:00 am by Bx11

» 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 here from Brisbane, recent diagnosis- Vestibulodynia

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I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Mon Apr 01, 2013 6:03 am

Hi All,

I am new here and I would really like to get in contact with people from Brisbane, Australia.

I was recently diagnosed (2 months ago) with Provoked Vestibulodynia (Vulvar Vestibulitis) and reactive vaginismus due to the Vestibulodynia, after such a long time of massive pain, suffering and feeling completely hopeless.

I just want to start by saying that this forum have helped me SO much!...

My story is very similar to most of the stories in this forum. I met the man of my life, after being in a terrible marriage of 6 years, were "sarcastically" I never ever experienced any symptoms. A couple of months after meeting my actual fiancé Very Happy (He proposed to me a month ago), the nightmare began, I realised that only after a day of having intercourse, I would start feeling this sort of urethral burning, and the need of urinate every five seconds, with a lot of pain for two days and then an incredible massive raw feeling in my vagina opening with stabbing pains. Literally I feel that my whole vulvar area is a massive bruise that's been constantly kicked (sorry! This is the only way I can describe it). After going to a lot of doctors and specialists, asking for swabs, urine tests, paps...more than ten thousand times (that of course came back negative), getting the usual “you have a bacterial vaginosis” “You have a yeast infection, sometimes they don't show up in tests, take this pill, use this cream”, I went back home one day feeling so desperate, alone, disappointed and scared; I started a huge online research with all my symptoms and etc. This is how I got to this forum and I am so thankful about it, because I discover that there was a condition called “Vulvodynia” and it was extremely similar to all what was happening to me. Of course I started trying every single thing I read that would help to alleviate some of my symptoms; 100% cotton underwear, low oxalates diet, coconut oil, calcium citrate tablets, vitamin E oil, and the list goes on and on and on. (nothing really changed). I have to add that by this stage I was a mess so depress and scared, my fiancé always extremely supportive, our sexual intercourse was reduce to times 0.

I finally got in contact with a Vulvar pain specialist in my area which diagnosed me with Provoked Vestibulodynia (Vulvar Vestibulitis), gave me lidocaine 4%, Amitriptiline, and referred me to a Physiotherapist. This also happened two days before leaving for a two months holidays, so it was a bit tricky to start a complete treatment as soon as possible, with my desperation I got in contact with a Vulvar specialist and physiotherapist in the country I was going to be away on holidays and went to see them the very first week I arrived. I trusted this physio when she said that “6 physio sessions” were going to be enough. I can say that physio traumatised me even more, I can't even explain how I felt each time I got out of that physio room, it was so painful and I also feel that what she was doing was very "advance", in session #3 she fully introduced me a thick dilator, even though I said to her: I don't think I am ready for this", she answered back "It is only in your head" and pushed it all the way in Crying or Very sad (maybe this is only me, but it has really make me feel even more depress).

Ok, sorry for such a long story, the thing is that today I can say that the lidocaine 4%, plus the amitriptiline have helped tons. I can't say the same thing about physio, I think I had a terrible experience with the first one I saw, now that I am back in Australia I found one of the best and will let you girls know what happens. Since I started the treatment I have had sex once, and my symptoms only lasted for 2 days, this should definitely mean something positive, right?

I feel the need to get in contact with more girls in Brisbane, I think it is extremely important to talk about what's happening with people that is experiencing the same thing, sometimes I feel so alone and I don't know who to talk with about this, is not easy.

I know that I will need to see a psychologist soon; I am not the same person I used to be. I am incredible anxious and always “waiting for the pain to come back”, sometimes I cry nonstop and of course it had affected my relationship, even though my fiancé keeps telling me that he will always love me no matter what and that we are together in this.

It's been very tough,

Thank so much for reading...


Last edited by keepdreaming on Mon Apr 29, 2013 4:32 am; edited 1 time in total (Reason for editing : grammar)

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Wed Apr 17, 2013 3:55 am

I need some support pls, anybody interested in getting in contact with me? I feel so alone in this...

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Kathye10 on Wed Apr 17, 2013 4:17 am

Hi Keepdreaming,

While I don't live anywhere near Brisbane, I can empathize with you. I'm so sorry to hear you are having such a hard time.
From someone who was perfectly fine 5 months ago, I can attest to what a nightmare this is. I didn't even know these kinds of things could happen to us women. I thought the worse was a yeast infection or BV (and of course std's)...never did I once think anyone could have chronic pain in the vulva/vagina area. I'm always up for chatting if you want too Very Happy
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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Kathy100 on Wed Apr 17, 2013 11:48 am

Hi Keepdreaming

I'm nowhere near Brisbane either but I feel for you. The whole experience is a nightmare. Your first physio sounded really horrible! and as if she "advanced" way too quick. I've just started physio myself - 3 sessions so far with another one today. My physio is very gentle and explains what she is doing first before she does it. She hasn't done any internals yet as I had so many external trigger points and problems with my lower back that she wants to sort those out first. She has released a lot of trigger points & I'm starting to feel better - so fingers crossed. Until it happened to me I didn't know this condition existed or that you could get pain like that (definitely not in your head). Its definitely very isolating & it's difficult for other people to understand how painful it really is.

Let us know how you get on with your new physio.
Take care xx

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Mon Apr 29, 2013 4:32 am

Hi Kathy100

Thanks so much for your kind words...

I don't know where to start from! This last few weeks have been horrendous... I got a massive flare up, after thinking that my Vulvodynia was getting better. This is when I start thinking, What the hell I'm suppose to do?! What else besides changing my whole life because of this?!

I feel so distressed and completely hopeless. Maybe I am not doing enough?, but I don't know what else I should be doing?

I'm already in 50 mg of Amitriptyline, lidocaine 5%, going to physio once a week, following every single instruction! and here I am once again, experiencing the most terrible pains and so scared and disappointed.

I wish I could write only positive stuff but seems impossible...

thanks so much!....

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Vulvo1 on Sun Mar 23, 2014 5:52 am

Hi, I feel your pain. I have Vulvodynia & also Strep B. It put a massive strain on my relationship with my fiancé, nearly broke us up multiple times & also sent me into depression. The worst part was not being able to show my love o my fiancé, being to embarrassed to talk to anyone about the issue & basically being told I'm a freak by doctors after going through test after test, medication after medication, etc, etc & never having any results.

But I am here to tell you there is hope!! I am from around the Brisbane area & have been seeing Alyssa Tait from Equilibria at Salsibury, She is a miacle worker! I am still seeing her for issues related to my Strep B & PH levels but she has pretty much cured my Vuvodynia! Through her I have gone from not even being able to have my fiancé touch down there to being able to make love to him on a weekly basis in less than a year! I have also been seeing a psychologist specialised in this area at Spring Hill, her name is Alice Hucker.

Hope all works out for you!

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

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