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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 …

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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 …

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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 …

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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 …

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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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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: 3

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: 10

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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Clothes We Can Wear!

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Clothes We Can Wear!

Post  itchyandscratchy on Mon Oct 17, 2011 7:03 pm

Hey guys, not posted in a while, hope everyone's coping.

I've been thinking about writing a positive post on clothes for a while. Vulvodynia has changed the way I dress completely. When I was first adjusting to this condition I got very stressed and depressed regarding clothes, what used to be a pretty straightforward part of my day became a monumental task when I could no longer just throw on a pair of jeans and a t-shirt.

But by now I've gotten used to working around vulvodynia and actually it's not so bad, in some ways it's forced me to dress more stylishly as I have to put more thought in and plan ahead now! I quite like some of the changes vulvodynia's brought to my wardrobe, so I just thought I'd start this thread to share how I get around restrictive, pain-causing clothes in my life and maybe others could share how they deal with this also. It could be quite a useful resource for newbies as having to change how you dress is one of the many little things can stress you out or depress you when you're getting used to this condition, and it might give them some ideas to try out. Although as always everyone's different with this condition, so what works for one won't necessarily work for another.

So, first off - leggings - these have pretty much taken the place of jeans in my wardrobe, I use them as the base for most outfits as I find them less irritating than jeans (although depends on things like how breathable they are, if anyone knows any particularly good brands for leggings I'm always on the lookout for more). Check the label for a high % of cotton and go for ones that are bit see-through if held up to the light is my only advice here.

Second - skirts/dresses/long t-shirts. Pretty self explanatory, I have a particular new found love for big, poofy swing dresses as they're so unrestrictive!

When leggings are too informal or I want a change I go with stockings or long socks. I had some difficulty finding a good quality suspender that actually keeps stockings up all day at first (most of them are just for decoration clearly!), now I use this one, a little pricey but I've been using it for over a year and can confidently recommend it.

This site has a nice selection of socks and is UK based, this one is like a dream come true for me and is US based (so watch out for excise duty UK customers, I got stung on that one! Sad)

On stockings: I don't actually buy very many stockings as most that I come across are overpriced and/or hold-ups (which I think only very skinny people can wear without them squeezing your legs uncomfortably and slipping down anyway), I just buy tights and cut the top off, they're surprisingly hard-wearing and you get more of a selection that way!

When it comes to underwear I generally don't wear any unless I'm on my period, and then only 100% cotton (sorry if that's TMI for anyone, but I figure there's no such thing on this site!)

So, I hope that's helpful to some of you and I'd love to hear how you guys get around the discomfort clothes can cause for us! Smile
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Re: Clothes We Can Wear!

Post  Sarah001 on Mon Oct 17, 2011 8:53 pm

You are full of information today! I wear leggings occasionally, most of the time at home I'm in yoga pants because I'm lucky enough to work from home so nobody cares what I wear and I can hop on the swiss ball for a few exercises without the hassle of changing. I actually bought some stretch jeans from Peacocks last year, they're nowhere near as stiff as standard jeans and are very stretchy so more like trousers that look like jeans, I can wear those for a couple of hours as long as there's very little sitting involved, I was so impressed I bought 4 pairs. I think it was a range called 24/7 or something like that, haven't been back in for ages so no idea if they still sell them. Anyone buying them try them though, I was a size 10 when I bought mine (not now thanks to the f&^*@$#g tablets) but needed a 12 for crotch room. Like you though it has forced me out of jeans and into wide leg trousers with a nice loose crotch etc. I've looked at skirts but I'm not a skirt person and the closest I get is a knitted dress over leggings.
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Re: Clothes We Can Wear!

Post  itchyandscratchy on Tue Oct 18, 2011 7:35 pm

You are full of information today!

Yeah, now it'll be back to months of nothing again though. =P

I'm the same with jeans, can wear lighter stretchy ones for a couple of hours. Been meaning to invest in some light, loose, linen-y trousers for a while also, but given the season I think I'll have to wait till next spring to get those.
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Re: Clothes We Can Wear!

Post  Sarah001 on Tue Oct 18, 2011 8:12 pm

I got some cotton mix linen trousers from George at Asda and wore them most of the summer, I got lots of compliments and they only cost me £10 a pair. Again I bought several pairs so my wardrobe is starting to look like I'm a bit mentally unstable and will only wear certain items!! Laughing
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Re: Clothes We Can Wear!

Post  itchyandscratchy on Thu Oct 20, 2011 12:47 pm

my wardrobe is starting to look like I'm a bit mentally unstable and will only wear certain items!!

Lol well that is a risk when you find something that's both comfy and fashionable, with this condition you're liable to pick up a couple of pairs just in case one gets damaged or something...
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Re: Clothes We Can Wear!

Post  itchyandscratchy on Tue Nov 15, 2011 11:58 am

**Update**

I find the leggings they're selling in Topshop the now for £12 very comfortable, despite the fact they're viscose/elastane mix, weirdly!
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Re: Clothes We Can Wear!

Post  londonlady on Fri Jun 15, 2012 9:59 pm

thanks for starting this stream!

sometimes I get so frustrated not being able to wear my dream combo of skinny (or any) jeans and a pretty print shirt, or a tighter fitting dress, so its actually nice to hear people sharing positive stories!

I have become an almost complete dress, or or maxi skirt or leggings lady. I now have some lovely dresses ( i try and buy ones which are tighter at the top and flattering, with a kick out skirt), and get some nice complements about always wearing pretty ones.

I sometimes feel self concious in case people work out that I actually never ever wear trousers/jeans but if they have, no one has ever said anything so I think I need to stop worrying!

as much as I have my fingers crossed that at some time in my life I will be able to wear even a baggy pair of jeans again, I think I will remain a dress fan for a long time!

xxx


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Re: Clothes We Can Wear!

Post  BpCookie on Sat Jun 16, 2012 10:24 pm

When it comes to clothes its pretty easy for me. I strictly wear skirts or dresses because pants or shorts cause way too much pain. Most of the time I dont wear underwear. If I have to wear panties I wear big granny panties, inside out because the seam on the panties cause irritation. I buy my clothes at any shop that has a sale going on. I love to find cute clothes that didnt cost me an arm and a leg. I even buy clothes from the dollar store. I have found the best bra's and granny panties and the dollar store. I also buy skirts and shirts there as well. I put bling bling on the shirts and when Im done, they look like they cost a lot more. Oh g/f's, dont get me started on talking about clothes. lol

Take care all. hugs
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Re clothes we can wear!

Post  Sunflower82 on Mon Jun 18, 2012 5:39 am

Hi,
Oh it is so nice to hear other people who also have to think about the clothes they wear! It drives me insane, over the last 6 months I've resorted to wearing baggy tracks bottoms the cotton ones, I a sense I'm like because I work with kids and I can get away with it, but I'd love to wear my jeans again, they just sit there on the rail and never get worn. I did get some cotton looking jeans from debenhams however had to go for a size up do they were baggy between my legs, then everyone says they look to big! Pants always cotton sloggi make are good but expensive!

Good luck everyone!

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question and suggestions

Post  dinda06 on Mon Feb 18, 2013 8:18 pm

I am new to the forums and fairly new to vulvodynia. I have been dealing with it for a year now. Here is my question. I am more of a tomboy so dresses and leggings aren't really an option. Has anyone found any jeans that are able to be worn if even for a short time? I wear scrubs and that is pretty painful by the end of the day and I have to wear jeans for work twice a month. Any suggestions on the jeans or any kind of pants that work for anyone that isn't gurlie would be a great help. Also, for anyone who is having underwear issues... I have found that boy briefs (I actually buy them in the boys section) work wonders because of the way they are made they are breathable and for the most part super comfy.

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Clothes we can wear

Post  Sunflower82 on Tue Feb 19, 2013 11:19 am

Hi,
The only jeans I have found that are can wear are really light cotton ones, they look like jean material but are not as heavy had to buy a bigger size so they were baggy. All my other jeans are far to uncomfortable. My other option is cobat trousers, which are ok if they are baggy.

Not sure if this helps.

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Re: Clothes We Can Wear!

Post  tinkerbelle2 on Thu Oct 03, 2013 3:06 pm

Renewing this old post, I came across this link today w w w .vpants.com/
i have not tried the jeans yet but it
seems like VV is becoming more widely known!
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Re: Clothes We Can Wear!

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