Log in

I forgot my password

Latest topics
I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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

Go down

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)

keepdreaming

Posts : 18
Join date : 2013-04-01
Age : 36
Location : Brisbane

View user profile

Back to top Go down

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...

keepdreaming

Posts : 18
Join date : 2013-04-01
Age : 36
Location : Brisbane

View user profile

Back to top Go down

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
avatar
Kathye10

Posts : 82
Join date : 2013-02-18
Location : Los Angeles

View user profile

Back to top Go down

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

Kathy100

Posts : 95
Join date : 2012-12-17

View user profile

Back to top Go down

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!....

keepdreaming

Posts : 18
Join date : 2013-04-01
Age : 36
Location : Brisbane

View user profile

Back to top Go down

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!

Vulvo1

Posts : 4
Join date : 2014-03-23

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum