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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 …

Comments: 3

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 …

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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


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 …

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Lyrica - how to know if it is working?

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Lyrica - how to know if it is working?

Post  Veronica001 on Sat Aug 31, 2013 5:32 am


I have been taking Lyrica for 3 months, I started on 75 mg and am now taking 300mg and I am not really sure if it is working for me or not. While my symptoms haven't really gotten worse I am not sure if they have really improved either and it is so hard to tell as I can't remember what normal feels like after 1.5 years of this condition. I don't know if 3 months is too little for there to be a positive effect or not and my dr. is hopeless, I am overseas now and have emailed him a few times and haven't really received any help.

Can anyone who has tried Lyrica please let me know how the treatment is going for them and how long it took for them to receive any positive effects.

Any information or stories at all would be so so greatly appreciated!

Thanks guys


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re- lyrica

Post  zarli on Sat Aug 31, 2013 9:49 am

For me it worked pretty much straight away, although I do take nortriptyline also. I haven't got much info on Lyrica but my guess would be it would have worked by now. Maybe try a new doctor where you are and see if they could try something else. Good luck and keep trying.


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Re: Lyrica - how to know if it is working?

Post  Sarah001 on Sat Aug 31, 2013 1:09 pm

I take Lyrica and it didn't help me until I got to 300mg but then it stopped working and I had to increase to 450mg which is where I'm at now. It only helps the unprovoked widespread burning in my case and it doesn't make the skin feel normal it kind of changes the sensation from burning to slight prickling for me. You can go all the way up to 600mg of Lyrica if you don't feel the current dose is working and it doesn't sound like it is after 3 months to be honest. I don't know if you have unprovoked or provoked only or if your pain is widespread or localised? It depends on the type of pain you are trying to treat to be honest.

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Lyrica does not work for me

Post  Fingerscrossed on Mon Nov 11, 2013 2:46 am

I'm currently weaning myself off lyrica because it was making me sleepy, even after the first month or so. I was getting drowsy while driving two hours on an interstate to my therapy appointments and to make matters even worse, it was making me fall asleep in my graduate school classes. I actually had to take a nap at a gas station so that I could continue home after I was finished with my appointments. I don't think I've been this sleepy during the day since I was a little girl. I hope everyone else has a better experience with it than I have. I can't wait to be finished with those evil things--only 3 more pills to go!


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Re: Lyrica - how to know if it is working?

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