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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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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 …

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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 …

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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 …

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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 …

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Avoiding relationships completely cos of vulvodynia

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Avoiding relationships completely cos of vulvodynia

Post  Ceriane on Sat Mar 03, 2012 11:15 pm

I'm 29 and have avoided relationships for such a long time now because of this...can anyone relate.


Last edited by Ceriane on Tue Mar 13, 2012 9:25 pm; edited 2 times in total

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Re: Avoiding relationships completely cos of vulvodynia

Post  Sarah001 on Sun Mar 04, 2012 1:52 pm

I can relate, at 38 with no bloke, no divorce behind me and no kids I get ALOT of looking down on me and questions about why I'm on my own. I don't think it's naive to think you may get better, women do and finding out the cause of the problem can go along way to helping. I don't think all relationships have to be sexual, a female relative of mine is in a very long term relationship that doesn't involve sex but they love each other completely and get along great which gives me hope!! I'm avoiding any relationships right now too and won't even go for a drink with a man because I know where they will expect it to go so for now I'm concentrating on my physiotherapy and have completely shut off to the idea.

You are bound to be sexual without the pressure of a man, it's normal and just enjoy them when you can. Rather than worry about being alone put the time and energy into getting better instead and then rethink the relationship idea afterwards. All my friends are in longterm relationships so I know how it feels to be the one who isn't and I'd love to be able to think along those lines but right now I don't need the distraction from looking after me and trying to get more functional. Next week I have to do something I've never done before and attend a funeral on my own which is a bit nerve wracking to be honest and times like those I could do with a partner!!
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Re: Avoiding relationships completely cos of vulvodynia

Post  Ceriane on Sun Mar 04, 2012 2:14 pm

Thanks for the reply....I was just feeling so negative yesterday...but I've decided now I'm feeling less emotional (now I've vented) that I'm going to do everything within my power to recover...but I'm going to take the pressure off myself sexually...I haven't closed my mind to love and relationships...but I'm going to play it by ear...I'm not going to force anything on myself...I'll be open to meeting new people and if I meet a guy and start dating I'm going to just focus on getting to know them...I'm not the type of person to jump straight into bed with someone anyway, I think it's important to get to know someone and to have developed strong feelings for them emotionally and also to have some committment there....that's important to me without the vulvodynia coming into it. If it gets to the stage where both of us want to take it further sexually, if my vulvodynia is better I'll take it slow...depending on how I feel at the time I'll either tell them that have in the past had a gynaecological problem that caused problems for me sexually ie pain on penetration and that I still have some anxiety relating to that...then if we are having penetrative sex and I start to experience pain I'll let them know and we can stop and just do other sexual stuff (I wouldn't choose to be with someone who wasn't supportive as I want someone who likes me for me not just someone to have sex with)...if I've still got it, I'll tell them about it (which will be embarrassing) and maybe we could have a sexual relationship without penetration...see how I feel about them etc...then maybe we could try new treatments ie using lidocaine gel etc....as long as the communication is good then hopefully it should be alright. Maybe this problem protected me from being in a relationship that isn't so good...so I'm open to dating and relationships and sex (although I'd take it slowly on that one). Just play it by ear and go with my feelings. As for being single...I think it's good to be single until you've met the person you genuinely love...so I'm not going to listen to people's pressure....I've always gone with my feelings rather than what society expects anyway and I like that about myself....people can think what they want...I'd be like that regardless of vulvodynia...relationships, love and sex for me have to be because of genuine feelings rather than societal expectations...

I am a romantic and sexual person...and I'm open to the idea of love now...I think I have a better handle on how to deal with my issues regarding sex (just needed to vent yesterday to get rid of the anger I've carried around for years.

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Hi, Im new to this.

Post  Unhappy on Mon Mar 05, 2012 6:56 am

Hello, My name is Fiona, I am a 34 year old single mum. I have been suffering on and off since I went through puberty at age 11 with this "problem" Things got worse after I had my son 12 years ago and even more worse after a relationship 2 years ago with a lovely man that ended when sex became unbearable. I don't suffer this problem 24/7 as some do, but sex is off limits now and so are alot of other things.

I also get comments about why I havn't met someone. I get "advice" that really upsets me. I just want to scream at people to mind their own business.

I'm not single by choice, but also don't want to have to go through the embarassment of meeting a man and having the 'discussion'. I have already put myself through agonising sex just to "keep a man" and will never do that again. It is sad it has come to this. Its nice to know there are people out there to talk to about this and understand in a way that no one else does.

Fi

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Re: Avoiding relationships completely cos of vulvodynia

Post  naomi on Mon Mar 05, 2012 9:20 am

hello all,

wow girls, what u all say has been through my brain many a times before.

this condition is extremely testing and is enough to send anyone to a darkened room and rock...which at the beginning I was at that stage..pure anxiety. Brilliant for weight loss, think i lost about 30lb! (of course its all back on now, and some).

this condition has made my temper more volatile, i swear more and have a short fuse. I have been having counselling (phycritrist...good lordy i really cant spell that!) for abour 3 years now (since my condition got to its worst), weekly. Just recently fortnightly as funds are low. It has been such a help...and takes the toll off my family.

After about 6 months of being single when my condition had got bad I started feeling mentally stronger. For half a year I didnt go out, didnt eat, didnt laugh or feel happiness, didnt answer the door/texts/calls, even though my friends would be at the door knowling full well I was in. I felt like I couldnt be here anymore, but I was not going to take my life as I didnt deserve that, im a good person and it made me feel so trapped and pure fear.

I started to see friends again. It was like someone had died (my sexual self) and I was going through the grieving process.

I went out with friends, danced with the boys...got drunk (usually a few tears about how unfair my life is in the toilets), back out there, another drink. If someone asked me out on a date I would be v v v matter-of-fact ie "I have been poorly with a gynae condition, at the mo I cant have sex, so if thats what your intentions are in the near future then ur wasting ur time". I wouldnt say it in a nasty way...just plain and clear. It felt like therapy to me, getting it out in the open and not hiding away in my house feeling I was a freak, monster and not a proper functioning human.

I was suprised at the amount of kind, understanding boys there are out there, I can say that every single one went on another date with them, some became mates, others just didnt work out. It put my faith back into boys and made me feel more confident.

that not to say i didnt, and still DO feel a HUGE RESENTMENT at times re other girls who can have sex, i hate the fact that tv feeds people sex all the time, read a book and it gets steamy...fo fuck sake theres more to life than sex! I know that, but I damn well have the right to be able to participate!!!!! my brother is due his baby next month with his wife. I can safely say that my brother is a dickhead, i love him but my god I dont like the guy. Hes arrogant, selfish, to name a few words, but he seems to get through life easily, no problem. Why did i end up like this, and not him (yeh okk he hasnt got a vagina but u know what I mean!! Smile

I met my current partner Tom at a rugby game. Hes lovely. We have never had sexual intercourse, yet we bought a house in october last year. So I have everything crossed he wont stray Ceriane!!! Very Happy we have a damn mortgage to pay affraid . No I know, hand on heart, he would never stray. He's my soulmate and isnt driven by sex. Ok, hes a lad...he has a hand, computer...I tell him to go off and do what boys do! I know that sounds crude but its natural and curbs his sex drive! We have bumlove maybe, once or twice a month, usually if ive had a few vodkas. It is nice, but if anyone does try it dont use KY or Lube, johnsons baby oil is the best...although tom was drunk and slid off the bed landing on the bedside table last time, killed the moment as I was laughing so much Smile

I think if you are with a guy and the empasis is constantly on sex then it is a bit doomed. If you can be completely yourself, honest and open...then they wouldnt mind.

before i went on a first date with tom I put it to him straight, this is what is wrong with my Lady Lala...I sent him a link via email of vulvodynia...how it effects woman etc etc. Then about half hour later he text saying that is cool with him and we'd take it as it comes. and a year later he is still here...cant get rid of the bugger Smile

tbh I do feel numb to sexual feelings. I am on pregablin and sertraline for low moods, anxiety, depression (the whole shiiiibang!). These make me feel unsexual. Id rather have a mug of peppermint tea, cross stitch and a comedy on the tv! Tom knows this and we kind of joke about it!

FOLKS I CANT SAY ENOUGH...SEE A PSYCHOTHERAPIST!! it was my life saver...helped me see through the mist and know there is a light at the end of the tunnel...even if treatment is slow and dpressing as hell.

Hope everyone is ok today.

Naomi xxx

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Re: Avoiding relationships completely cos of vulvodynia

Post  shortstuff on Mon Mar 05, 2012 11:22 am

Aw Ceriane, I'm so glad you are feeling more optimistic. The lack of penetrative sex ability takes the greates toll on me as well, you're not alone! I've only had this problem for a year (reading others stories on here makes me feel so lucky, although obviously worried for the future) but I've become so accustomed to the pain it doesn't bother me as much these days. Like Naomi, I've found a wonderful man as well who has been so supportive through this. We met shortly before this whole thing popped up for me and have only had sex for maybe a period of two weeks when I was feeling okay. It gets to both of us; the sexual frustration, but we are learning ways to deal with it.

Don't give up hope, dear. There are plenty of men out there not looking for just sex. Be honest with them about your medical condition. If they run, all for the best! They weren't worth your time anyways.

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Re: Avoiding relationships completely cos of vulvodynia

Post  Sarah001 on Mon Mar 05, 2012 12:18 pm

I like the falling off the bed story Naomi! Laughing I find Pregabalin has totally destroyed my sex drive, that and the Ami anyway. I have so little interest in any type of sex these days and would rather watch T.V with a glass of wine. You'd have thought the doctors would have known about this very, very common side effect before prescribing for sexual dysfunction wouldn't you?! Rather ironic.
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Re: Avoiding relationships completely cos of vulvodynia

Post  naomi on Mon Mar 05, 2012 12:45 pm

Yep I'm on pregabalin too! Double whammy! Smile
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Re: Avoiding relationships completely cos of vulvodynia

Post  Ceriane on Mon Mar 05, 2012 8:51 pm

Thanks for the replies, especially Naomi....I think if I did date anyone I'd mention it if the relationship was getting serious, hopefully I will be able to have penetrative sex again at some point and I won't have this condition forever...in the meantime...I'll just focus on getting to know people, and if a relationship develops take it from there, if sex is still an issue by that time, if they run for the hills they weren't my soulmate anyway and I would have been better off without them....and there are loads of ways of having non penetrative sex....also there's more to a relationship than sex!!! I realise this now....and there's more to life than relationships and sex!!! Maybe that is what this came to show me...I feel a lot less depressed about it now. Before I was in the depths of depression but maybe everything happens for a reason....I'm starting to find that out now...

On the bright side...vaginal pain....at least we can still have orgasms and enjoy non penetrative sex....can you imagine being a guy with penile pain? That would be much worse as it would hurt to even masturbate or be touched sexually by your partner...or given oral sex! At least we can still have those things....and without the risk of pregnancy (if your not wanting to become pregnant). It's like being a teenager again...so there are positives.

I got obsessed with reading problem pages about sexual issues....and I started to realise just how much some of these agony aunts ram sex down people's throats whether it's wanted or not (which I don't agree with...I think it's okay to just sometimes not want sex or not think it's that important....however if your in a relationship that could be a problem....but communication etc and maybe compromise comes into it there). There are so many women who have been having penetrative sex for years and have never had an orgasm....I've regularly had orgasms from other things...in being sexual in other ways you get to know each others bodies a WHOLE lot better than if you just had penetration all the time. However, I wish I could just have a normal pain free vagina and have normal pain free penetrative sex....

I do still sometimes really feel that I'm missing out a lot though, and I get depressed and I worry myself stupid over the effect of my problems on a partner.


Last edited by Ceriane on Tue Mar 13, 2012 9:35 pm; edited 2 times in total

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Hi!

Post  sadone on Fri Mar 09, 2012 4:35 pm

Hi ladies!
I just had to jump into this conversation. Like Naomi said, I have felt all of these feelings that you have all felt. And it is true that there are guys out there who will love you for you and V will not matter. I was terrified to date when I was first diagnosed, but I did at the urging of my therapist- she kind of bribed me with lower therapy fees if I made an effort to meet someone-LOL. Well, I did get out and about just so I could pay her less...haha! Anyway, I was pleasantly surprised. I did not bring up V with anyone I dated until the relationship became serious. I just told guys that I wanted to take things slowly and get to know them as friends. IMO, V is nobody's business unless the relationship is serious- otherwise why would I want to tell them if I've lost interest or they've lost interest in the early days. I've only told two guys who I dated and both were fine with it. Completely shocked me! I thought for sure they'd be running for the hills. The first one I broke up because of reasons completely unrelated to V. The second one- I am still seeing- a year now.
So, to all of you single gals- do not give up hope!!

I can relate to the pregabablin killing my drive. It does do that sometimes- although there are times where it helps me relax and some interest, but then I lose interest later because it kind of knocks me out and makes me feel "drunk"... can anyone on pregab relate to that! Naomi, I love how you tell your guy to do "what boys do"... gee maybe I should try that. I am losing interest even in non penetrative activities these days. It all seems like too much of a bother...I don't know why this is?????

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Re: Avoiding relationships completely cos of vulvodynia

Post  Ceriane on Tue Mar 13, 2012 9:38 pm

Thanks. Another positive response!!! I feel so much better about my condition now. Still wish I didn't have it...I now feel more positive about it all.

Hmmm...could be the pregabalin side effects or it could be because when your in pain down there it can sometimes make you feel a bit unsexual...I know that's how I've felt in the past.

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