Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
I'm new here from Brisbane, recent diagnosis- Vestibulodynia EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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

4 posters

Go down

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

Post  keepdreaming 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 : 42
Location : Brisbane

Back to top Go down

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

Post  keepdreaming 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 : 42
Location : Brisbane

Back to top Go down

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

Post  Kathye10 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
Kathye10
Kathye10

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

Back to top Go down

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

Post  Kathy100 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

Back to top Go down

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

Post  keepdreaming 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 : 42
Location : Brisbane

Back to top Go down

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

Post  Vulvo1 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

Back to top Go down

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