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» Diagnosed Recently
Thu Feb 14, 2019 10:35 am by davesjen

» New and need advice and help
Wed Feb 13, 2019 4:42 am by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 4:33 am by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 7:46 am by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 2:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 12:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 5:10 am by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 5:56 am by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 5:33 am by mary jane

Diagnosed Recently

Tue Jan 08, 2019 7:55 am 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 7:26 am 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 1:09 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

MonaLisa Touch

Fri Feb 08, 2019 11:35 am 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: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 10:55 am by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Fri Jan 12, 2018 4:10 pm 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: 7

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

Mon Jun 04, 2018 9:13 pm 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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 1:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 2:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3


Three years down the line .....

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Three years down the line .....

Post  Jacky51 on Thu Nov 14, 2013 3:46 pm

Hello everyone

Three years ago I developed chronic burning pain which came on literally overnight. On a scale of 1 - 10 it was nearly always at a 9. After scouring the web, finding this website and seeing a gyni I knew I had vulvodynia. I was beside myself, was in the depths of depression and unable to work. My gyni prescribed lidocaine and amitryptoline, both of which didn't work. I also tried acupuncture but that wasn't much help either.

I finally decided to see a private pain consultant. O my he was my saviour - finally I had found someone who could sympathise and understand my agony. He immediately put me on 150mg of lyrica, kept me on the amitryptoline and gave me a supply of tramadol for emergencies (I only ever needed to take them once). Within 48 hours the pain had all but gone. In my second week he increased me to 300mg and I had no pain at all. In total I was on 300mg lyrica and 50mg ami.

Unfortunately I did have some side effects such as a dry mouth and weight gain but this was a small price to pay.

I was petrified that if I came off the meds the pain would come back. however, with the support of my gp (who incidentally admitted she didn't know much about the condition and was as pleased as I was that I had found something that worked), I have weaned myself off the lyrica over a long period of time. I am still on 10mg of ami and that is only because it helps me sleep!

Thankfully the burning has not returned. However, now that I know that something has worked for me it is no longer a fear, if it does come back I'll be straight back on the pills - let's face it most people have to take some form of medication for their ailments.

I really would encourage anyone to give it a go, it might work for you too. My heart goes out to you all, I honestly don't know how I got through those initial months I really had got to the point where I had virtually given up. I haven't been on this site in a long while and was really surprised to see how much it had grown in numbers, there are so many of you all suffering x

Jacky51

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Re: Three years down the line .....

Post  Leslieg on Thu Nov 14, 2013 5:59 pm

Jacky, thanks for posting! It is so great to hear success stories . I'm glad you are well! God Bless xo

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Re: Three years down the line .....

Post  Delilah1 on Sat Nov 16, 2013 7:16 pm

Thank you for returning to the forum and sharing your success story!! So glad you are feeling better!! Can I ask if sex was painful for you? Has your sex life returned to normal?

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Re: Three years down the line .....

Post  Jacky51 on Sun Nov 17, 2013 3:12 am

Thanks for your well wishes. If I am honest I was scared of having sex in case the burning pain came back. My poor husband put up with a lot, but things are back to normal and not at all painful now.

Jacky51

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Re: Three years down the line .....

Post  tinkerbelle2 on Sun Nov 17, 2013 1:51 pm

Hi jacky, I didn't even realise the site has been running that long I only joined a couple months ago. If only I had found it sooner. An amazing way to share and support each other. So glad to read your story! I was going to mention lyrica to my gyno tomorrow as quite a few women have mentioned it. What were your symptoms? So happy for you!
tinkerbelle2
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Three years down the line .....

Post  Jacky51 on Tue Dec 10, 2013 3:28 pm

Hi tinker belle did you speak to yr doctor about Lyrica.  In terms of my symptoms I had the most excruciating burning pain, at times it felt like someone was grabbing hold of my vagina and at others it was really painful inside as if I had inserted a tampon badly.  On a scale of one to ten I was always around a 9.  It really is the most awful condition for anyone to have, especially as most people don't understand and it's embarrassing to talk about.

Jackyx

Jacky51

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Re: Three years down the line .....

Post  mary jane on Wed Dec 11, 2013 3:41 am

Hi Jacky, loved hearing your story as it gives me hope. I also take 50 mg ami and I shall beg for some Lyrica, if only my stupid GP would put her brain to contribution. I hate GPs so much, in my country GPs are worth s... we only see the specialists.
anyway, so amazing you are cured !! yey loved reading this !!

How long were you on the lyrica??

thanks
xxx
mary jane
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Re: Three years down the line .....

Post  Jacky51 on Wed Jan 01, 2014 3:51 pm

Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way. I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Jacky51

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Thanks

Post  907hopeful on Tue Jan 07, 2014 10:08 pm

I can't tell you how great it is to hear success stories. I am just in the beginning stages if this roller coaster and still working to get properly diagnosed. I started with skin irritation which has somewhat disappated and I have moved on to stinging, burning and some days (or weeks) pain. My pain levels are not at a 9, but this problem has really taken an emotional toll on me. Your story gives me hope. I will make sure to add Lyrica to my list if meds to ask about next week!

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Lyrica help please

Post  Jo44 on Wed Nov 18, 2015 1:28 am

Jacky51 wrote:Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way.  I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Hi Jacky

I have messages you privately a couple of times but no joy! I was wondering how much you reduced Lyrica each time & did you struggle with any withdrawals please?

I'd appreciate a reply?

Thanks


Jo x

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pain and burning?

Post  amyhp on Wed Nov 18, 2015 12:06 pm

Jacky,
Did you have a sore pain feeling along with the burning? I have tried Lyrica in the past and it didn't work. Do you think it was the combination of the amitriptyline and lyrica that helped?

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Re: Three years down the line .....

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