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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


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 …

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 …

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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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A couple of touchy Questions

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A couple of touchy Questions

Post  yuffie623 on Sun Jan 29, 2012 11:13 pm

I posted something in the new member section and the rant section, so my history is kind of scattered across the forum.

I'm Yuffie623, I'm 27 and I've had vulvodynia - the localised pain - vestibulodynia? - for six years. Before that I was sexually active with no physical problems. I have, however, dealt with bipolar disorder all my life, which I only realized recently. It seems unrelated and I know it's really awkward that I'm telling you all about that, but I feel like the combo is so repellant to men. That's been my experience, anyway.

Medical Question:

For anyone who is going to physical therapy, does your therapist forbid orgasms at all? Is it making things worse? And if you have localized pain - vestibulodynia - and an active libido, how can you stand abstaining?

I have not had the opportunity to see a physical therapist yet, because I was also in denial for a long time that the vulvodynia wouldn't go away on its own, especially since I went into "remission" from 2008 to 2009.

When I orgasm, obviously, the contractions tighten up the pelvic floor. If I head down there with my fingers, or my lovers do, it's tight as a drum after I come (hey, that rhymes!). This isn't good for recovery, obviously. I keep reading that the exercises prescribed are basically just the opposite of Kegels - relaxing the pelvic floor rather than tightening your "grip" on it. I also don't understand how to tell when the pelvic floor is "loose" or "relaxed," because I've not been instructed.

Anyway, for my emotional health (and my anxiety), I've found, while kind of a crutch, clitoral orgasms help. Maybe I'm weird or abnormal. I still get that thought sometimes, because I was raised by strict Catholics who waver between the idea that sex is beautiful and sex is sinful. I was told for many years that it was a sin and forbidden. I masturbated anyway and had lots of sex throughout my twenties.

And then I see women suffering from this disorder just plain turned off from sex. That's what happened to me and intercourse, but because I enjoy kissing, outercourse and oral sex, cybersex, and the like, really my libido has not changed. Only my aversion to vaginal intercourse. It scares me, now, to have it, because I know it will be painful and awful. But everything else, I crave, but of course, men crave that which I don't...

Social Question:

What about being single with this disorder? I think it sucks.

I see a lot of women writing about this are in long-term relationships with partners or husbands who are understanding and help them best they can. Couples struggling to deal with this, what they want and what she needs, etc etc.

Well I am single, and it's always been bad enough being bipolar and dating, nevermind vulvar pain. It's awful. Just awful. It's been a mess. I feel like I'll never find somebody. I have enough trouble letting go of the past without thinking back on the times I had pain-free sex and feeling sad, missing it.

I don't know what to tell guys. I was at this big party (don't worry, it wasn't a "hook up" kind of party), and everyone got really, really drunk (I'm a graduate student but people still act like they're 20; some are only 22, not that I'm knocking the maturity of 22-year-olds). I didn't but I got into a conversation with my classmate that I'm working on a project on about life and shitty landlords etc etc, and I told him about my bipolar disorder and it got incredibly awkward. I turned red as an apple.

Then our classmate (who is also going to work on a project with me) locks eyes with me and notices. Now people DO know I'm allergic to practically everything, so he got concerned and walked over. The three of us made small talk and somehow...the guy asks me if I've been hit on? I guess we were talking about our other classmate who was trying to pull a girl, as you in England would say. Yes! That's exactly it. We were laughing about him smoothtalking her, and then suddenly the spotlight is on me and this guy is asking me about my sex life.

Boom. Well, I make a self-deprecating joke, but he rolls with it. He starts trying to analyze me. I'm very geeky, and I don't wear much makeup. Mascara and concealer are basically as fancy as I usually get. Last time I wore makeup, this same guy probably didn't notice because we were at another kegger with bad lighting. Anyway, I don't know why I said all that. Basically he says I'm "not conventionally attractive," which is code for ugly. He's short and weaselly looking, so I'm not sure why my being slightly overweight with a big nose is something so shocking, but whatever. But he says something like, "Embrace your sexuality!" and my lab partner comes to my defense saying, "You're being really misogynistic right now, do you know that?" The guy gets kind of offended like, "No, no I'm not." Suddenly these two men I barely know, despite being in classes together, are debating my...honor? Or something? The guy who brought it up has no idea about my sexual history. He says that thing people say, you know, "Oh someday you'll find someone. There's all kinds of fish in the sea." Come on. I've had plenty of fish. Before now. Before these illnesses came on.

It really bothers me, because if I were in a situation where I did want to casually hook up with someone (I'm way too old and not emotionally equipped for that anymore), IF, what would happen? What would happen is like this summer, when I was dating someone I had to tell about my vulvodynia literally when he was already on top of me and about to get to it. I'd told him about bipolar over a dinner table, but not about my vulva until we were in the throes. I just don't know how to tell guys, if I should tell guys a certain way, or if I should even bother being sexually active at all.

And why is my classmate bringing up my sexuality? "Embrace it," he said, and I turned to my lab partner and go, "He wants me to wear short skirts, doesn't he?" It's just...so uncomfortable, with these things...Sorry, this should go in the rant section shouldn't it? Blah.



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Re: A couple of touchy Questions

Post  BpCookie on Mon Jan 30, 2012 5:36 pm

Hello Yuffie, Lets first deal with the Bipolar part of this. Im Bipolar also and I told my b/f, now husband, about me being Bipolar when things seemed to be getting more serious. Then when it REALLY started to get serious I wanted him to know everything about my mood swings. I wanted him to know exactly what he was getting himself into. Now when it comes to friends, I tell them when I think the time is right and some ppl I dont tell at all. It all depends on the person. If a person doesnt think they can handle the Bipolar side of you and is scared off by that, then they wont be able to handle the Vulvodynia side either and those kinds of ppl you dont need in your life anyways. You need to find ppl who want you as you ARE, not as they want you to be.

Are your meds keeping you stable? Do you still have your ups and downs? Are you seeing a pdoc?

About the Vulvodynia part of this. If your going to have a sexual encounter with someone, then its up to you to decide when to tell them. Just explain that Vulvodynia is not an STD, its not something they can catch from you but it CAN cause you pain, that you need to be in control and that you may have to stop if it gets painful, but also explain that there are other things that the both of you can do instead.

I hope that helps.

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Re: A couple of touchy Questions

Post  Sarah001 on Mon Jan 30, 2012 6:01 pm

I agree with the above and I also think you are worrying alot about other people's opinions of you when really you shouldn't. We've all had awkward encounters like that and you need to brush them off, if they don't like you as you are tough shit. As for embrace your sexuality guy, sounds like a right plonker to me and I probably would have just told him so.

The orgasm part depends on who you ask, some say it tightens the muscles up and shouldn't be done while others think it brings fresh blood to the area so there's two very different camps out there. I suspect once you see a physio (PT) and learn to relax the muscles orgasms won't be a problem because after one you'll then know how to relax the muscles again. Personally all the meds have totally stolen my ability to orgasm so it's not an issue for me!

As for being single with V and other stuff, I'm single at 38 with V, Hypermobility Syndrome which means I literally dislocate all over my body and Fibromyalgia (I'm such a catch!) and to be totally honest I can't imagine anyone wanting to take all that on, my ex certainly didn't and legged it once I'd had V for a few months. I'm ok with being single though and just concentrate on me, if someone came along who could deal with all of it great but if not then that's fine too. I'm just rolling with it all and doing my best to improve my function for me, no-one else. I sound very severe don't I? I'm not honestly, just old enough to know better than to put other people first.

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Re: A couple of touchy Questions

Post  Lindilou on Wed Feb 15, 2012 11:46 am

I have pre-existing mental health issues [psychosis], now my voices are calling me a 'stupid cunt' not sure whether they mean me or that I possess one


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Re: A couple of touchy Questions

Post  Songstress on Fri Mar 23, 2012 9:06 am

When my vulvodynia was bad but not at its worst, I found that the only time penetration without extreme pain was possible was actually directly after my orgasm. And I do mean directly after, because if I wait a few minutes the natural lubrication dries out and everything is so much worse. Your muscles do tighten during orgasm, but they relax after.

My reasons for thinking directly after orgasm is the best time are three-fold:

1. I saw a physiotherapist for a short while and she told me that a lot of women subconsciously suck in their stomach and tighten their pelvic muscles all the time (because it firms up our asses and makes our tummies look flat). I know that I do actually do both these things. Her tip was to tense my muscles briefly once in a while because consciously tensing the muscles makes it easier to release the tension again. When we walk around with our muscles partially tensed all the time, we stop feeling the strain. Tensing your muscles completely makes it possible to feel the difference between completely relaxed and slightly tense muscles. The muscle is the most relaxed after complete tension because the body takes a second or a few minutes before it can go back to that slight tension. If this is a general rule, which I don't honestly know that it is, it would make sense that the pelvic muscles are the most relaxed directly after the extreme tension that is orgasm.

2. The second reason is just a matter of friction. I find that I am wettest directly after orgasm. More moisture = less friction = less pain

3. The psychological aspect is the third reason. We have decreased blood-flow to the brain during orgasm and it does take a short while before the blood goes back up there. That means I get a minute or two of glorious fear-free thinking, when my brain isn't chanting "Oh God, this is gonna hurt", causing my body to tense up more than it already does...

I do know that some women have such severe vulvodynia that reaching the point of orgasm isn't a possibility, but if anyone else tries this, I'd be curious to know whether it works for you too.


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