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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 …

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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

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 …

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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


Scared....

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Scared....

Post  cba321 on Mon Jan 07, 2013 10:10 am

I had botox done about 5 months ago, and any time now the botox will cease working and i know in my mind that there is a chance i will go back to the way things were and all this money and time spent will just be to rule out another thing that didnt work...i do a lot of physio and stretches in a hope it will continue post botox

Its getting a little bit too much, havent had a proper relationship in years and now im starting to get older i guess by relationship standards...ppl start to think you are weird cause you dont want a boyfriend. To what age can i keep it going that im too independent for a bf

Ive been fairly positive for a long time but im slipping and its stupid cause my condition is by no means the worst at all
Anyway that is my rant, i'm currently seeing a psychologists as well which does help but guess i can't be perfect

cba321

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Re: Scared....

Post  Alana3 on Mon Jan 07, 2013 2:29 pm

Can you do the botox again? I mean with any of the nonsurgical treatments they unfortunately stop working. The important thing is to take what you can from it and maybe it won't stop working and you'll be fine and all the worrying is for nothing. I was in remission for a while and it came back to the point where I opted to have the surgery because I hated the hit and miss of it all. But now that I'm 5 weeks in I'm freaking if it worked or not. I guess there will always be some doubt in all of our minds. I'm taking it you had unprovoked vv? I hope that you can get some more relief if the pain does come back. But hopefully it won't.

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Re: Scared....

Post  cba321 on Tue Jan 08, 2013 10:24 am

Thanks Alana, yes I can do it again, however there was a randomized control trial that showed some women experienced relief after the botox has worn off due to all the stretching. The Physio I see has a few clients where the stretches have allowed the pelvic floor muscles to be stretched permanently. Guess I am hoping I will be one of those people, however I have been getting more pain so not sure if that is a sign of the botox wearing off and the muscles returning to where they were, if that is the case, and it might not be (being positive), I guess if I do it over and and over it will only be temporary. In the case of other conditions like Cerebral Palsy, where botox is used as a treatment, the body will get used to it after multiple doses and the effect botox has will diminish, so botox will probably only work a certain number of times. No I have provoked vv, only on occasion I get the pain unprovoked. I guess it is all the emotional pain of sexual dysfunction and social roles etc etc that is difficult, very difficult sometimes. I go on facebook and all my school friends are in relationships, getting married, having kids and I am too scared to go on a date...Anyway all I can do is keep going and try as many different treatments as possible and try not to freak out! lol. Hope all goes well with your recovery, fingers and toes crossed for you Very Happy

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Re: Scared....

Post  Alana3 on Tue Jan 08, 2013 12:44 pm

Thanks now I feel like I have ic and freaking out I hate this I always have such bad anxiety. Remember that you do not have cerebal palsy.so you cannot compare treatments Smile

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Re: Scared....

Post  cba321 on Wed Jan 09, 2013 1:22 am

Yes it does feel like a constant battle sometimes! Not comparing treatment though! Just how long botox tends to continue to work in the human body in general. Treatment for cerebral palsy is completely different

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Re: Scared....

Post  Alana3 on Wed Jan 09, 2013 1:15 pm

Gotcha I think tho it depends on you.. Some people it doesn't work at all. Ugh I hate v!

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Re: Scared....

Post  cba321 on Thu Jan 10, 2013 2:43 am

Yes very true, it does depend on the person

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Re: Scared....

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