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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 …

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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

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: 3

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: 10

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


Vulvodynia pain and discomfort in remission

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Vulvodynia pain and discomfort in remission

Post  mary jane on Thu Feb 11, 2016 3:33 pm

Hi everyone,

I have not logged on in ages, uni life has been sucking the living soul out of me.

I wanted to post this as an encouragement for others that Vulvodynia and nerve pain in general need not be for life.

I had this horrible pain from 2013 to 2014, after which things got a lot better, however the change was very slow and gradual.

Things I couldn't do: wear knickers, sit down properly, run, get a check-up, and so on.

What helped me was good old fashioned medication, I was on Amitriptyline for about 4-5 months which was the first thing to help. After this I started on Lyrica, stayed on it for 8 months. Weaning off these has been highly disrupting, never mind that they completely screwed up my memory whilst on them!

I now have insomnia as a result of weaning off these 2, but the bright side is I am losing weight and I feel as though nothing ever happened. I can have intercourse, wear tight jeans, run, everything except ride a bike for more than 2 hours Smile  (this has to do more with my previous bartholin surgeries though). I quit taking meds this past December

Unfortunately, I know these do not work for everyone, I would imagine the percentage to be very low. I wanted to post this to give others hope. When I first logged on these forums, I read all the positive stories to give myself courage.

I wish you all get cured and  live a pain-free life! sunny
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mary jane

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Re: Vulvodynia pain and discomfort in remission

Post  PainBlogger on Thu Feb 11, 2016 9:07 pm

Thank you for posting about your improvement. That's very encouraging to hear. I didn't have much luck with pregabalin (Lyrica) or amitriptyline, but am finding duloxetine and physio quite helpful. I'm much improved from where I was nearly two years ago when it started, but still have a way to go because of tight pelvic floor muscles causing 'functional difficulties'. I can't wear jeans again yet, but that's not the end of the world.

I also had some trouble getting off Lyrica with withdrawal symptoms and I feel so much more alert since I've been off that and the amitriptyline. I can get away with so much less sleep.

Thanks again for posting and I hope your insomnia clears up.

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Re: Vulvodynia pain and discomfort in remission

Post  WaahwaahUK on Sat Feb 20, 2016 2:33 pm

So grateful to read a positive success story here! I'm really pleased for you. I think its so important to remember that this can indeed be a slow and gradual healing process, so thank you for highlighting that. For me, I'm definitely in a better place pain wise than I was a year and a half ago when this started for me. Slowly but surely, with the odd setback, I can see better days. Good luck with your life away from this pain! Live it full and be happy x

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vulvodynia pain and remission

Post  let's kick this on Wed Apr 27, 2016 12:41 am

Mary Jane,

Are you still pain free?

let's kick this

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Re: Vulvodynia pain and discomfort in remission

Post  PainBlogger on Wed Apr 27, 2016 7:49 am

To follow up to my comments from February - as of this week I can wear jeans again! Not ridiculously tight skinny jeans, but still jeans that are the right size for me and not baggy. Very Happy

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Re: Vulvodynia pain and discomfort in remission

Post  emalita on Wed Apr 27, 2016 12:52 pm

PainBlogger - That is wonderful! I'm so happy you have found some relief! Very Happy

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Re: Vulvodynia pain and discomfort in remission

Post  fairlight10 on Wed Apr 27, 2016 5:02 pm

Hi PainBlogger. Glad you are starting to feel you are beating this horrible condition. I have been on nortriptyline for four years this summer at 20mgs upping it to 30mgs last September. I have been comfortable for a few months now. Sitting and intimacy almost normal. Then yesterday I thought I would try and drive the car not sitting on my ring cushion for 10 minutes. This started the nerves to start firing off. Then they calmed down but felt stinging for the rest of the evening. Bloody things still there.

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Re: Vulvodynia pain and discomfort in remission

Post  PainBlogger on Wed Apr 27, 2016 5:45 pm

I'm still very much dependent on my ring cushion (it's actually square!) when I sit on hard chairs. Although I'm a lot better and continuing to improve, I'm very conscious of trigger factors and am being very cautious when it comes to trying things to see if I can do them again. Like with trying jeans again - I've only been wearing them around the house so far in case they spark off any irritation I can change straight away.

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Re: Vulvodynia pain and discomfort in remission

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