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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 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 …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6


Three years down the line .....

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Three years down the line .....

Post  Jacky51 on Thu Nov 14, 2013 11:46 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 Fri Nov 15, 2013 1:59 am

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 Sun Nov 17, 2013 3:16 am

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 11:12 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 9:51 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!
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Three years down the line .....

Post  Jacky51 on Tue Dec 10, 2013 11:28 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

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

Post  mary jane on Wed Dec 11, 2013 11:41 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
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Re: Three years down the line .....

Post  Jacky51 on Wed Jan 01, 2014 11:51 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

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Thanks

Post  907hopeful on Wed Jan 08, 2014 6:08 am

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 9:28 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 8:06 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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