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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


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?

Celticrose

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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.

Mark

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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.

Mark

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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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