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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 …

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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

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: 8

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

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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 …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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