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

Fri Mar 09, 2018 6:17 pm by Tunes25


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 …

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

Mon Mar 12, 2018 4:33 pm by totallycured


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 …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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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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New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

My journey - believe it or not it's a fairly positive one!

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My journey - believe it or not it's a fairly positive one!

Post  Georgia H on Tue Jan 28, 2014 12:33 am

Hi Girls,

I'm new here (but not to V)! I've been reading this forum on and off for the past few years and it's helped me greatly. It's taken me this long to actually join up - selfishly, I've never wanted to participate as it felt (in a weird way) like I was giving in to the condition. It finally dawned on me that my story might actually help some of you guys - so here I am.

My journey with V is fairly straight forward and began in Sept '11 no real obvious trigger, typical nerve pains, run around from GP for 3 months until (I think I read somewhere on here) about Wendy Reid and coughed up the money to see her privately. I should mention here that I was in a fairly new r/ship at the time and sex wasn't an issue at all. I could and still can have completely pain free sex. She diagnosed me with unprovoked vulvodynia and put me straight onto Lyrica which was great. Worked pretty quickly to dull the pain. I was on it for 4 months when I decided to come off it and I was left only with some minor pain on one side which was mostly radiating through my thigh. Wendy sent me off for PT for this. Whilst waiting for the PT and weaning off the Lyrica (by this point I was mostly pain free but not 100% although the pain wasn't bothering me too much) I decided to see a McTimoney chiropractor in Worthing (she's also been mentioned on here) for the McTimoney pilot study. She was brilliant. Within month or so of seeing her I was 100% pain free. It's hard for me to say if it was the chiro or the lyrica but I'm fairly certain it was the combination of both these things - at the right time - that lead to this remission. I don't think one would have worked without the other. In total I was "in treatment" for 6 months.

I went 10 months 100% pain free and medication free with no sign of it returning. In April '13 it came back in a mild form (mostly the one sided thigh pain) and I booked 3 sessions with the chiro and it was gone again. This episode lasted only about 3 weeks.

In Sept '13 it came back again but this time the chiro sessions haven't quite been as helpful as they were in April. There are certainly symptoms that she can resolve - the one sided ones for sure. This time I'm experiencing an all over prickling sensation - more or less constant - over my pubic hair area that is stubborn and doesn't want to go! After 3 months of trying to get rid of it without medication I went back to Wendy Reid and this time I'm trying amitriptyline instead of the Lyrica. I know most of you probably think I'm mad as Lyrica is hailed as the wonder drug for vulval pain but I was on it for 4 months and gained 10kgs in the first two. It was petty hellish! I really wanted to try something different this time as the V was one thing, but the weight gain was equally as taxing on my mental health and wellbeing. I know a few of you mentioned you wanted to try Lyrica but just be careful. I know not everyone experiences the same side effects from meds but I really wish someone had told me about the weight gain before I went on it. Wendy said to me that whilst they work quite differently on the nerves, the end result is usually the same (it's just that ami takes longer to work).

So far the ami has been ok. I've only been on it 5 weeks and am up to 50mgs at night. I'm not 100% but I think it's starting to kick in. Its hard to tell tho as I'm so up and down I'll have a few good days and then a bad one but I think overall it is getting better. From memory - this is what happened last time. So far not too many rough side effects. If ami turns out to be useless then I'll bite the bullet and go back on the Lyrica but for now I'd rather wait and see.

Basically, I want you girls to know you can and will find a way to treat this. I've done it once and I'll do it again. It's just a matter of finding the exact right combination of treatments. There are things that I have suspicions trigger this but I can't be 100% sure. Just like its probably going to be a combination of treatments there's probably a combination of causes too that make something like this too hard for our bodies to bounce back from. Autoimmune or whatever else. It's so easy to get caught up reading negative stories on the internet but I see mine as one of the good ones. Obviously the fact that it's come back isn't IDEAL but the fact that I've resolved it once is proof that it can be treated and you can be pain free (and that finding a good team of dr's, gynae's, physios, naturopaths, osteopaths, chiros etc is the key to getting there).

London girls - I live in London too and would love to meet up sometime before the October meet.

Sorry this was ridiculously long but I wanted to try and include everything in case there were bits that might help some of you.

Any questions on the specialists I've seen/mentioned don't hesitate to ask.

Xx G

Georgia H

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Re: My journey - believe it or not it's a fairly positive one!

Post  mary jane on Tue Jan 28, 2014 10:29 am

Georgia, you are more than welcome to come to our support group meeting! the next one is on the 22 of March at St Cyprian's church


the girls are lovely and after the meeting we usually head for tea/lunch in the marylebone area.
mary jane

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Re: My journey - believe it or not it's a fairly positive one!

Post  fightforacure777 on Tue Jan 28, 2014 4:04 pm

Thank you for sharing your story, and reminding us that their is hope and a light at the end of this tunnel.

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Re: My journey - believe it or not it's a fairly positive one!

Post  tinkerbelle2 on Tue Jan 28, 2014 8:37 pm

Hi Georgia,

Thanks for coming on and sharing your story! I took a while to actually sign up too because it felt like effort to write about my story from the very beginning , but now I can't shut up ! lol. And it also felt like I was admitting there was a real problem, with a real name, whereas before i'd almost been in denial and just getting on with life. But it has got to the point now where I can't push it to the background anymore. The pain is very much there, and if anything it's more nagging than ever before. I am feeling pretty confident that it's going to go away, with the right help and understanding. I'm in a way, excited.

Currently on amitryptline only 20mg atm (one in morning and one at night - no change as yet but it's only been 2 weeks). That's interesting about the lyrica! I hope ami doesn't make me gain too much as i've already been comfort eating A LOT!!

T x

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Re: My journey - believe it or not it's a fairly positive one!

Post  Delilah1 on Fri Apr 11, 2014 10:01 pm

Hello Georgia! Thanks for sharing your story! How are you feeling now?


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Re: My journey - believe it or not it's a fairly positive one!

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