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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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


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.

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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

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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?

Post  Npage14 on Sun Oct 14, 2018 4:14 pm

I couldn’t wear jeans at first either without being in horrible pain, and I used to try to wear underwear all the time, but now I avoid it as much as possible. I’ve actually found thongs less irritating than normal underwear. Normal underwear would move and cause friction and trap heat which would irritate me more, with thongs they stay in one place and allow air flow. In the summer I just wear loose fitting shorts with no underwear, I’ve even been able to find jean shorts that fit loosely, it feels the same as a skirt or dress! In the winter I don’t really have any problems with clothing because my pain is related to my body heat. If I stay cool I don’t seem to hurt or have clothing irritation. I especially have to keep my feet cool for some reason. It took me a long time to figure this out but it was life changing when I did!

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Re: Will I ever be able to wear jeans?

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