Vulvodynia Support
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» Hope to all my suffering ladies
A couple of touchy Questions EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
A couple of touchy Questions EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
A couple of touchy Questions EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
A couple of touchy Questions EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
A couple of touchy Questions EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
A couple of touchy Questions EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
A couple of touchy Questions EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
A couple of touchy Questions EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
A couple of touchy Questions EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


A couple of touchy Questions

5 posters

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Post  yuffie623 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.

Yuffie

yuffie623

Posts : 8
Join date : 2012-01-05
Location : Boston, MA, USA

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Post  BpCookie 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.
BpCookie
BpCookie

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Post  Sarah001 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.
Sarah001
Sarah001

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Post  Lindilou 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

Lindilou

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Join date : 2012-02-14

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Post  Songstress 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.

Songstress

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