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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

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Mon Oct 15, 2018 5:40 pm by mertzwl

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

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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

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 …

Comments: 2

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


there's other people like me?!

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there's other people like me?!

Post  julia on Mon Jul 26, 2010 4:34 pm

Hi all,

I've been having these problems for about 3 years now, but have always experienced a bit of pain 'down there'...

I've been to see a number of different GPs, and in the last half year have finally been referred to a consultant gynaecologist after so many 'urine infections', 'thrush' and 'hypersensitivity'. I used to be given any type of antibiotic as a quick fix, as well as seeing many out of hours doctors and walk-in clinics without getting anything out of it. I was also treated for thrush numerous times. A GP I saw in Leeds decided to try everything and said I had 'hypersensitivity', putting me on a steroid cream, a thrush tablet and a mild antidepressant all at once. After I moved away from Leeds this all stopped and everything started again.

In the past, my pain has come after sex, during sex, after a night out, from dehydration, lack of sleep, being too hot... or sometimes from nothing at all. I used to get what I thought were extremely painful urine infections which occurred pretty much with no warning at all, during which time I would down bottles of water and cartons of cranberry juice.

Now that I have finally been referred to a gynaecologist, I had a preliminary appointment where she took a specimen from me and called it 'thrush'... but thankfully she also said she bet I had heard that a hundred times before (which I had).

The next appointment was a biopsy.... which I have to say was more painful than I could've imagined. I think I squeezed the poor nurse's rings really deep into her fingers when the needle went in!.. But, the reason for having this biopsy is to determine if I have lichen schlerosis (a skin condition), or vulvodynia. After reading up on both of the conditions, I'm certain it's actually vulvodynia, but hope it's lichen schlerosis, as I will be kept on a steroid cream whenever I need it. If it's vulvodynia, the dr has told me that I will be put onto a mild antidepressant to stop the nerve endings from firing, but I'm not sure if either are really permanent solutions, and I'm not sure if I ever will get one.

My partner finds my condition very hard; just last night we tried to make love and couldn't because of it all got a bit too sensitive for me. Not only this, but I had to jump out of bed straight away to wash to make sure I wouldn't feel even worse in the morning and have to miss work (which is only my 2nd week in a new job, so wouldn't look good!) We go through periodic dry spells where he is afraid of hurting me, and I feel a lot of guilt about my situation. Also, when we do try to have sex and it fails, he says he isn't annoyed/frustrated, but his eyes say different things to me - he cannot stop thinking about his lack of orgasm, which he has admittted to me on more than one occasion! You could say our sex life is quite pressured a lot of the time.

It's great to be able to find a forum like this online, and hopefully I will similar experiences to some of you which will be a help to all of us. Please let me know how far along you all are, and for us to be able to offer some help to each other if we can...


Julia xxx

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Re: there's other people like me?!

Post  naomi on Mon Jul 26, 2010 6:19 pm

hey u! thanks for sharing ur story! It almost feels like a bit of a relief when u type it in black and white!

Sounds like you've been/going through the mill to hey? sucks big time!

with your urine infections do they say its bacterial cystitis or interstitial cystitis?

So are you in Leeds still? we are certainly spread around the uk/us on here! Im in Gloucestershire.

Im at the stage where ive seen 7 specialists with no answers. So am starting from scratch with a new gynae. Ive got the biopsy appointment tomorrow to look forward to. Had biopsies taken last yr from inside my vagina but they didnt show much apart from a high level of inflammation. The gynae (a professor!) gave up on me and referred me to a new one (one thats having a good old prod around tomorrow...oh joy! Luckily Im being put under so I wont need to stop the blood flow of the poor nurses hand, or leave ring indents!

Very Happy

Its soooo hard on relationships having this condition (whatever it is). I split with matt a few weeks ago. But I have to admit it wasnt the lack of sex with matt that caused it I think it is because I dont deal with it all very well at all. he couldnt support me with my low mood, feeling of despair etc. He didnt know what to do so he took the easy way out. I wish Id been honest with him from the start how I felt but I used to put a front on (a rather convincing one!). I dont think we would have lasted so long.

I know this prob sounds crude but have you considered anal sex (I hate writing that!! Embarassed ) I think it was good in our relationship as it made us closer and theres absolutely noooooooooo way I could have sex.

better go, dinners ready! write more later chick xxx
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Re: there's other people like me?!

Post  Sarah001 on Mon Jul 26, 2010 6:44 pm

Oh Naomi! How funny! Laughing Sorry, it just is! I was going to suggest the tamer option of oral sex!! Laughing
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Re: there's other people like me?!

Post  naomi on Mon Jul 26, 2010 6:52 pm

hahaha! well I thought I could put 'Bum Love' but thought I'd stick to the technical jargon! Smile

oh yeh, and there is oral sex like Sarah suggests! Very Happy
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Re: there's other people like me?!

Post  Sebby (Admin) on Mon Jul 26, 2010 9:21 pm


Hi and Welcome Julia!!! Yes there are women like you! its cool to be able to speak to others with the same conditon otherwise it feels really isolating. Pricisely why I set up the forum.

Ive never had a biopsy sounds scarey u are really brave!!!

Hahaha girls I will now suggest a bit of hand love.....lol see there are many ways of errrr given the fella sum action haha

Shuts em up moaning anyway lol

Sebby
xxx

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Re: there's other people like me?!

Post  julia on Tue Jul 27, 2010 9:48 pm

Yup the moaning bit's definitely the hardest!... as when he is hard, and not getting any.. he's got a pretty one track mind!... perhaps we should be trying more different things. I saw a book advertised on one of the links I found on this forum about having non-penetrative sex and how to keep it interesting.

7 different specialists?! I feel like I've experienced hardly anything yet if that is the way forward; I really do wish you all the best of luck with lucky number 7, and the biopsy Shocked

have any of you ever tried eastern meds/acupuncture? I've heard it can help but I'm not sure whether to keep holding out on the western side of things!

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Re: there's other people like me?!

Post  Sebby (Admin) on Tue Jul 27, 2010 10:32 pm



http://uk.askmen.com/dating/love_tip_300/314_love_tip.html

found this link on a man's website lol

sex without penetration




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Re: there's other people like me?!

Post  Sebby (Admin) on Tue Jul 27, 2010 10:37 pm

hahaha in the phone sex section it actually says 'but unless she starts it, stay away from anything involving family members, animals (don’t even go there)'

WTF!!! Like people need to be told to avoid this!!!


confused


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Re: there's other people like me?!

Post  julia on Wed Jul 28, 2010 5:39 pm

wicked I've had a quick look and i'll show my man.. carefully.. he has a bit of a thing about me reading erotic stories, and sex toys and the like, calling it 'cheating', so there's a bit of work to be done to make it feel like we're doing this for both of us.

I'm still thinking about the acupuncture too.

Anyone know any decent (but not too heavy) books about all this? I came across the one by susanna caysen but wondered if that was any good?

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Re: there's other people like me?!

Post  Sebby (Admin) on Sun Aug 01, 2010 2:59 pm


Hi Julia,

Well if you are doing it together it cant be cheating can it! I mean you could always write your own erotic story involving you and him!

Or just find one online copy it into word and change the names of the characters to your own names! hahaha well its a thought...

http://www.asstr.org/~Kim_Couples/

http://www.smolderingembers.com/love-making-stories.html

just found a couple of websites, not read 'em yet myself...but I will have a look later...it will kinda distract me from my pain clinc preparations lol

They are not seedy sites and are writen by women for couples

Sebby
xx
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Re: there's other people like me?!

Post  lisa98 on Mon Aug 02, 2010 10:11 am

Im so glad someone else brought up anal sex (henceforth known as bum love- sounds way cuter Razz ) I had enjoyed this as part of my sex life prior to vulvodynia, and since have had a few enjoyable bum love experiences (cant help but smile while typing that), but have found that it has become uncomfortable. perhaps because the pain in the vagina has worsened and is exacerbated by the anal penetration, or maybe because im so used to sex being about pain i tense up. Has anyone else had any experience of this?
what is everyone else's experience of the area of pain- has it changed or stayed the same? is it in the same spot always or sometimes different? Just wondering what the deal is for you ladies.

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Re: there's other people like me?!

Post  naomi on Mon Aug 02, 2010 2:39 pm

I have constant raw, soreness, inflammation of the vagina, internally and externally. Sometimes more so externally depending on the heat etc I think, def' the more I do physically makes me more inflammed and sore. It feels like a hideous yeast infection. I'd always had yeast infections and UTI's where sex is involved. Infact Id be healthy now Im sure if I was a virgin right now!!!

I have never had the stabbing pains typically associated with vulvodynia, or the associated bad back etc. Never had problems with tampons or vibrators before the above took hold. Just when mens willys were involved...A few of my girlfriends and even an ex said I was "allergic to willlys" grrrrrrrrrrrrrrr

Lisa, before I split up with Matt a few weeks ago we perhaps made 'bum love' once every few weeks (I used to ask him if he'd like to experience it and his reply was to literally peg it out the door leaving fire tracks!, of course I didnt mean it but it made him consider that it might be as slightly unpleasant feeling at times!!, so fortnightly proceedings was ok for him to accept!). It was uncomfortable at times but as long as we made sure heaps of lube was involved. My heart wasnt in it though and I would have preferred not too, was doing it for his sake not mine...I think it was when my low mood/depression really kicked in at the start of this year. I def suggest trying diff lubes, I tested out 10 before I found one that was suitable. Coconut oil is also good (can get it in tubes from health food shop in the fridge) as you can use it as a massage oil too xxx

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Re: there's other people like me?!

Post  Sarah001 on Mon Aug 02, 2010 7:07 pm

I'm just the same Naomi with the raw skin being the problem and where the pain is located and mine looks like a really bad yeast infection too, like a layer of skin has been peeled off in fact.

I'm not a bum love kind of girl if I'm honest so my other half is going to have to make do with oral while I sort out what to do!
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