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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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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

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 …

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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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Will I ever be able to wear jeans?

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Will I ever be able to wear jeans?

Post  Celticrose on Thu Jun 05, 2014 10:52 pm

As this pain has increased, I now find that I can't wear jeans, trousers or even leggings! I love skirts but this is ridiculous! Does anyone else have the same problem? I could wear leggings last year but there is no way I can tolerate the pain they are now causing. Does this condition get steadily worse? I even find underwear to be uncomfortable of late, and have bought cotton no seams knickers. I just wondered if anyone has found that their condition got worse and if they have been able to return to wearing jeans etc?

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Re: Will I ever be able to wear jeans?

Post  ringostarr26 on Fri Jun 06, 2014 3:14 pm

I will be honest with you. My pain did get worse, and i was constantly wearing long skirts without underwear. But I can say i have periods where I am pain free for months at a time and i can wear thongs, jeans, you name it! I think the best thing is to stay positive and trust me i know how hard that is because I am a huge ball of anxiety. I am currently flaring up and its been a month of a lot of tears, but i know there is a light at the end of the tunnel and there will be more pain free days. You have to find a doctor that is specialized in this type of pain or you will be going in circles for years like many of the women on this site, including myself. I'm not cured by any means and there are MANY days when i feel hopeless but there are also many good days. You will wear jeans again! I wish you well and I hope you start feeling better very soon.

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re; jean wearing

Post  Celticrose on Sat Jun 07, 2014 11:43 pm

Thank you ringostar, for the encouragement! My symptoms got worse after a procedure to burn the nerves that were impinged by bulging disc in my back. It seems like an unlikely coincidence that the nerves began to fire in the vulva region and I have one particular spot on my outer labia that causes intense pain if irritated by tight clothes or clothes with seams. I often feel an intense sense of 'itchiness' inside and out which the urologist said is the nerves firing off. I have bought loose trousers (baggy around the crutch which seem to be in vogue at moment) and they seem okay at moment but god forbid that I sit for long periods. Today is a bad day/night with IC and Vulvodynia pain at same time. Can't sleep and I have begun to think I should start living in toilet  Crying or Very sad I have no idea what has set this off except stress over final assignments going in to finish postgrad.

Celticrose

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Re: Will I ever be able to wear jeans?

Post  zarli on Sun Jun 08, 2014 10:25 am

I buy harem pants on ebay from india. You can find cool design patterns and I have created my own style !! I have only paid $20 Au at the most extremely affordable. Also a good barrier cream can do wonders. Good luck Smile

zarli

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Re: Will I ever be able to wear jeans?

Post  Mark on Wed Jun 11, 2014 12:14 pm

My wife can't wear jeans, trousers, leggings, tights etc without it bringing on an episode of acute v lasting maybe 3 days. If she's not near her period and wearing a suitable style of skirt or dress she avoids underwear and if she wears any it's cotton and washed in organic hypoallergenic soap. When we first got together I was worried she'd get cold legs and a cold bum but she says she got used to it years ago and actually feeling a bit cold down there is a good antidote to the burning feeling that comes from having v.

She says wearing trousers or even tights can cause other problems too, such as cystitis, thrush and I think something else as well. Is this true? If so I can't help thinking it's probably not natural. If you look at films or old TV programmes, newsreels etc before about the 1960s it was pretty much unheard of for women to wear trousers. I get the feeling it's something feminists pushed for. Most of the things they achieved were really good, but maybe not this one.

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Re: Will I ever be able to wear jeans?

Post  Alana3 on Wed Jun 11, 2014 1:09 pm

Oh please most women can get by wearing jeans with no problems.  Unfortunately there are women like us who do have problems and cant get by wearing certain clothes.   Try wearing looser fitting pants and you should be OK.

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Re: Will I ever be able to wear jeans?

Post  Mark on Wed Jun 11, 2014 3:30 pm

Alana3 wrote:Oh please most women can get by wearing jeans with no problems.  Unfortunately there are women like us who do have problems and cant get by wearing certain clothes.   Try wearing looser fitting pants and you should be OK.

I know, but I wonder if that's only because of getting used to them because they're a part of modern life. Here's another example. Did you know that if a baby is not given milk once it is weaned off his or her mother's, then you give it cow's milk as an adult, he or she is 100% guaranteed to be allergic to it, because human beings are naturally lactose intolerant. It's only because we're given milk all through our childhoods that we can stand it. But it is thought a lot of people's allergy problems, breathing difficulties etc could be down to mild lactose reactions.

I'm not saying it's necessarily the case but I wonder whether vulvodynia, cystitis, thrush and maybe some other women's problems could all be related to wearing trousers etc. It was pretty much unheard of until the 1960s. If it had been a good idea, surely people in the Middle Ages, Victorian era, Stone Age and other periods of history would have adopted it.

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Re: Will I ever be able to wear jeans?

Post  Alana3 on Wed Jun 11, 2014 5:58 pm

It was unheard of because women were deemed "hysterical".  Most women would NEVER bring up problems such as sex or vaginas back then (or now!) because it wasn't something that was brought up.  Women were and still are taught that their bodies are something to be ashamed about and not to discuss something so "dirty".  Think about it though really do you talk about your penis to other men?  Probably not.  I don't talk about my vagina to other women either so it took a long time to figure out SOMETHING was wrong.  Actually these diseases started appearing in the 1800's.  The symptoms and this disease were first acknowledged in the 1800s and it was finally classified as a disease in the 1980s.  Women's diseases aren't something that doctors really love to hear about.  Or admit there is something wrong.  I can't tell you how many doctors brushed me off and said "use lube and switch positions".  As if I hadn't thought about that myself. 

I seriously doubt any of this has anything to do with the clothing we wear.  Not every woman wears pants.  And to say something like that is actually placing blame on the woman.  As if you're saying YOU are the cause of your problems.  Which I'm sorry, but I am not.

http://www.savvy-women-magazine.com/Health/vulvodynia.php

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Re: Will I ever be able to wear jeans?

Post  Mark on Wed Jun 11, 2014 7:28 pm

I definitely don't think women are t blame for vulvodynia. Sometimes my wife is literally curled up in a ball with pain. What has she done to deserve that? Absolutely nothing. She has tried everything to get rid of it too, except surgery as they've said it wouldn't work for her.

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Re: Will I ever be able to wear jeans?

Post  Alana3 on Thu Jun 12, 2014 1:48 pm

I wasn't saying you said it directly.  But by saying by changing your clothing so women can wear jeans, pants, whatever is saying to a woman you don't know how to dress appropriately for your vagina indirectly.  Trust me, I know what I can and cannot get away with now.  If something doesn't feel right it doesn't go on.  But I don't need someone saying "oh hey before feminists when you were put in your place..." Sorry but no.  I'm getting rid of my period in 2 weeks so I don't have to use pads (which causes irritation and NO I cannot use tampons) and internal pain.  Back in the 1960's they would have NO idea why I was getting the pain or irritation and quite frankly they would have deemed me a head case.  Sensitive skin, adenomyosis, and endometriosis all play a part in my diagnosis which before was seen as hysteria.   

I wouldn't say how someone dresses is a pre-condition to any disease.  Shitty things just happen.  I was prone to UTI's when I was younger.  That certainly wasn't my fault, but could def have been a factor that played into vulvodynia, because of all the antibiotics.  Thankfully, mine was provoked and hopefully I never get it again.  But my doctor certainly didn't say "because you wear jeans and horseback ride is why you get vulvodynia, please wear a skirt that dates back to Laura Ingalls Wilder." He said something along the lines of, this sucks lets fix it.  Smile

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re: will I ever be able to wear jeans

Post  Penny prickles on Sat Mar 18, 2017 3:48 pm

I used to think that I would never be able to wear jeans again when I was at my worst.  I would only wear skirts, even in the winter I would wear long skirts with boots and alot of times no undies since those would hurt to wear also. I can say after finally finding a medication that worked for me (elival) and a supportive family doctor willing to work with me, I am feeling alot better and now wear pants and even jeans again (those stretchy kind with spandex).   I hope that you find some relief, just keep trying don't give up, I wish you the best, hugs and prayers to you.

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Re: Will I ever be able to wear jeans?

Post  jungleclover on Wed Jul 19, 2017 11:02 pm

I am so afraid of this too. I wore a dress to my new job (I'm a physical therapy aide) and my boss pulled me aside and said they aren't appropriate for work and that I have to wear slacks. I don't know if I'll be able to do it. Ironically she is a pelvic PT but I can't tell her my problem because it's a work issue. I don't know how I'm going to keep my job but I need the hours so I can get into PT school and I need the money. I miss jeans so much Sad I want to wear shorts. It's summer!

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Re: Will I ever be able to wear jeans?

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