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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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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How do you explain to men?

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How do you explain to men?

Post  OkeyDoke on Mon Aug 08, 2016 11:54 am

Hello, I am new here so sorry if this has been covered before....I have had vulvodynia for about 15 years since I was 18...I am on amitrip and pregabalin but these just take the edge off day to day...I have been single for all that time, not just due to the vulvodynia but many other reasons and health problems including PTSD for childhood abuse....I had kind of resigned myself to a single life but in the space of two days this week two men came into my life ...If I am honest I have been quite shut away from the world for a very long time (spent years practically bed bound) and although I can come across as perfectly 'normal' (whatever that is) and people seem to assume, as one of the men did, that I lead some interesting life in the fashion world or the arts because of the way I present (and I live in London), I am actually unable to work and men and sex I have avoided, first due to the abuse in my childhood and then because of the severe health issues the abuse has caused and the vulvodynia (I am not suggesting that vulvodynia is psychosomatic however in my case I do believe the abuse has played a part) .....So my main worry is would it be unfair to accept the offer of coffee with this rather handsome man when my health is so bad and sex (penetrative in any case) may never be possible? Or am I doing men in general a disservice there? Many thanks for reading.....

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Re: How do you explain to men?

Post  PainBlogger on Mon Aug 08, 2016 2:29 pm

I don't think it's unfair to accept the offer of coffee. If it looked as if there might be definite potential for a relationship beyond friendship then obviously at some point you'd need to explain your situation. But coffee seems a fairly casual thing. There are plenty of guys out there who are understanding. Yes, it's difficult for anyone who is not in chronic pain or has had a relationship with someone in chronic pain to fully comprehend how much of an impact it can have on even day-to-day aspects of life. But vulvodynia - or any other chronic health problem that means sex is difficult or even impossible - should not have to mean anyone is condemned to being single if they don't wish to be.

Whatever you do, good luck with it Smile

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Re: How do you explain to men?

Post  OkeyDoke on Mon Aug 08, 2016 2:52 pm

Thank you for your lovely reply, it helped....I feel a bit clueless around men sometimes and I think my childhood experiences has warped things regarding sex somehow and leads to a fear of men even though I have been in therapy a long time and worked hard to recognise these thoughts....So thanks again - your comment 'condemned to be single' really rang a bell! I have felt like that often!

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Re: How do you explain to men?

Post  emalita on Mon Aug 08, 2016 3:44 pm

I agree completely with PainBlogger. The only other thing I wanted to suggest is if you do end up having the vulvodynia talk with a man, be very honest. I'm not saying you have to give him details on your specific pain, but honesty surrounding what he can expect is very important.

Like saying "penetration will more than likely never be part of our sexual relationship" versus "penetration won't  happen often". If you say that it won't happen often, he will hear that it can happen only once a week instead of every day, when you actually meant it as maybe once a year if ever.

I know that it will be a very hard conversation to have, but being clear about expectations so that there is little room for interpretation will save a lot of tears and anger down the line.

I wish you the very best of luck. There are some amazing men out there who will absolutely love you regardless of vulvodynia. You just have to do a little digging to find one Very Happy

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Re: How do you explain to men?

Post  OkeyDoke on Mon Aug 08, 2016 3:52 pm

Hi Emalita, thanks for that...I totally agree - I think total honesty is the only way if it gets to a certain stage... which I will have to be strong about as I have a tendency to underplay my symptoms to people to make it easier for them which would not be helpful for either party.....many thanks

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Re: How do you explain to men?

Post  PainBlogger on Mon Aug 08, 2016 6:24 pm

But also remember that none of us can predict our futures. To yourself you can say "Maybe one day I will be able to penetrative sex" - because there may be treatments you discover you've not yet tried or even new treatments yet to be available. My problems seem much less extensive than yours in comparison, but there were times over the last couple of years when I feared I'd never have a "normal" (i.e. full) relationship with my husband again, but now I do. I know it's easier being in an established relationship, but my pain and functional difficulties seemed just as insurmountable even though I had the confidence that my relationship was solid and would hold firm.

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Re: How do you explain to men?

Post  OkeyDoke on Mon Aug 08, 2016 7:06 pm

Hi Painblogger, it is good to hear of your progress - it does give hope. You are right in that none of us know what will happen in our lives and to not write anything off....although in regards to a new relationship I wouldn't want to give someone hope of something that may never happen...I think I have also avoided really concentrating on the vulvodynia as I have had so many other more pressing painful conditions and issues as well as not wanting to think about it so maybe that change in thinking might lead me to try new remedies ....relationships were not even on my mind...and suddenly they are! Was there anything in particular that helped? Though it seems that everyone with V is different....Thanks again

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Re: How do you explain to men?

Post  PainBlogger on Mon Aug 08, 2016 7:46 pm

On this thread here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement there's a summary of my issues and progress. It's been a combination of things for me. The right meds and being really stubborn with stretching/relaxing PFMs with dilators as well as changing my thinking and acupuncture.

Yeah, I agree, you don't want to necessarily give that hope to a potential partner - but you can have it for yourself. Smile

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Re: How do you explain to men?

Post  OkeyDoke on Mon Aug 08, 2016 7:59 pm

Ha ha that's true....thanks for the link....I have been looking at those cool water dilators which look nicer (if that's the word) than the plastic ones....I think I have done a lot of mental and physical avoidance of the whole area which of course will not solve anything...I think some reacquainting needs to take place! All the best....

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Re: How do you explain to men?

Post  Mark on Wed Aug 31, 2016 6:58 pm

@OkeyDoke, I don't often post here these days (busy with job, wife, two kids...) but as I'm a guy and not so long ago was in the same situation at your potential partners (!) I thought I'd add my comment.

Above all, you must believe that you CAN have a loving relationship. Not with all men, but some. Like the two men now courting you, I met a woman who had vulvodynia (but I didn't know) at work, fancied the pants off her, we flirted and chatted for a few weeks, then I asked her out. Apart from the fact she was working her situation was similar (age, time with the condition, abuse in her teens). She was and still is a very honest and upfront person so told me about her condition and said if I wanted to withdraw the invite she'd understand. I didn't, and the rest is history. I've gone from sad, single geek to being the loving husband of a wonderful woman, with two perfect children :-).

I think it's crucial to tell these two guys about your condition and what it means. If you can't have vaginal sex, say so. Some guys will run a mile, most won't, especially if you also say what you can do. If your clitoris isn't affected (which I think is the case for most women with v) presumably they can still masturbate you, go down on you, give you erotic massages, etc. A lot of us enjoy that stuff a lot more than penetration. Especially giving oral, which for me is the most intensely sexual experience ever :-)

Also I think in fairness to these two men you should tell both you're not ready to be exclusive with one of them. We men have feelings too!

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Re: How do you explain to men?

Post  Valkywrite on Fri Sep 16, 2016 6:12 pm

This is a very helpful thread. First boyfriend I had when I discovered this--well, let's just put it this way--he told me that this issue made me rather unattractive.

I was upfront and honest. I just said that there are some sensitivities with this diagnosis and instead of being supportive or at least an attempt at being understanding, the man (a nursing student, of all things) had the gall to say that it was an unattractive diagnosis.

I was humiliated and upset, and I'm hoping that one day I'll find someone who's doesn't react this way.

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Re: How do you explain to men?

Post  A2015 on Fri Sep 16, 2016 9:17 pm

Last November when I was in the grips of Vestibulodynia, I unexpectedly met someone who I had a very immediate connection with and really liked. Though I had been anxious for months about the prospect of meeting someone and having to broach the subject of this emotionally difficult condition, I was determined that it would not stop me following the path I would have otherwise been able to with this man!
We got close very quickly, so I wanted to get this out of the way before it got further down the line. So when I knew things could get serious with us (only a couple of weeks after meeting), we were at home and I just said hey I need to tell you something, because I like you and it's just something I should say. I said I have a pain condition which means sex is really painful for me, and at the moment there are some options for treatment but I want to ask you to be patient about the prospect of having full sex with me. His reaction (though I think he was a little confused as it's clearly not a well known condition!) was very very kind. He said of course, I like you regardless of sex and all of that, so if we have to wait like 6 months to even try then that's fine, and there will be other things we can do and I'm sure treatments you haven't tried. I reiterated that it isn't a quick fix and that it's something I'm going through so he should know that, and he said okay.
I know it isn't always the case to have a good response, and I wouldn't know what the reality would be down the line had my condition continued (my condition slowly disappeared while I was with him, like some kind of actual miracle), but I do know that it gave me hope that some men don't run a mile. If they like you for you not just your vagina. And those are the ones worth staying around for anyway!

All the best,
A2015

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Re: How do you explain to men?

Post  jjr23 on Sun Sep 18, 2016 11:29 am

I agree with A2015's reply. There are nice guys out there who will respond nicely and be supportive and patient. My first boyfriend was a dickhead about it, but my second boyfriend was really understanding. So there are nice guys out there!

However, it doesn't stop the fear setting in. I still worry that if this condition doesn't get resolved then how long will a guy stay with me for? Realistically? How long is a guy (nice or not) willing to give up and go without sex? It's a physical act that gives them pleasure of course, but it is also a crucial ingredient for building and maintaining chemistry and closeness in a relationship. I know there are other forms of intimacy that can achieve the same feelings of closeness, but I still have those fears about sex. Sex is sex, and in the eyes of most men it isn't something that can be replaced or substituted by other sexual acts or intimacy activities.

Sorry for sounding negative! That second boyfriend of mine who was understanding soon broke up with me. He said it wasn't about the sex. He said that his feelings for me had just faded and went away. I sort of blame the lack of sex for this. I don't know. I guess I'm making some assumptions, but when you're emotionally worn out from having this condition your brain plays tricks on you and makes you feel like you're a hassle and everything that goes wrong is your own fault.

This condition has messed with my head so much. It's so hard to think rationally!

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Re: How do you explain to men?

Post  Mark on Tue Sep 20, 2016 8:00 pm

Hi JJR23,

I think when someone has any medical condition that means they can't do everything 'normal' people do, it feels natural to ask yourself whether it could be a limiting factor in relationships. But what's 'normal' anyway?

Before I met my wife I thought like most men. Sex equals some foreplay followed by my penis in her vagina, to put it bluntly. That's the way my wife thought too, offering me vaginal sex on a Friday night even though she knew it would cause her intense pain that would continue for a couple of days ruining her weekend.

She says the moment she knew I was 'the one' is when I said thanks but no thanks to that, because I didn't want to do anything that would hurt her. Instead we talked about what we both enjoyed and that wouldn't trigger her vulvodynia. Pretty quickly we learnt that I like giving oral sex (show me a man that doesn't Laughing ) while she enjoys anything that stimulates her clitoris (now show me a woman who doesn't... Laughing ) at least when she doesn't have an episode of her burning sensation.

I suppose what I'm saying is that both sexes sometimes assume the other likes the 'vanilla' type of sex, whereas that isn't always the case. Women especially I think assume men only think with their dicks. A male orgasm is pretty low-rent compared with a female one, not as intense, a lot shorter, and not so many of them. So what we guys really want to experience when we're with a woman is her orgasms, not our own. Plus vaginal sex can be very frustrating because it's a constant struggle for us guys. Enjoy it too much and you climax too early, ruining everything. Try too hard to put yourself off and you lose your erection and the woman you're with thinks you're not that into her after all.

Your condition may be different to mine and my wife's and maybe you can't do anything at all sexually, I don't know. There are some men who don't really enjoy sex that much if at all, ones who think they have to do it to keep the woman they love. So I think it's about being honest with people upfront about what you can and can't do and what you like. Some people will run a mile, others will buy you roses and pledge undying love.

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Re: How do you explain to men?

Post  emalita on Tue Sep 20, 2016 9:21 pm

Mark, you're fantastic, did you know that? I wish for nothing but happiness for you and your wife Very Happy

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Re: How do you explain to men?

Post  Mark on Wed Sep 21, 2016 9:09 am

emalita wrote:Mark, you're fantastic, did you know that? I wish for nothing but happiness for you and your wife Very Happy

Thanks Emalita. Actually my wife's the fantastic one, and I'm the lucky guy. She's way better looking than me, more intelligent, more educated, more ambitious and successful at work, earns a lot more, is a much more stylish dresser, is an amazing wife and mother with two children not yet at school and is a very generous and supportive friend. And she does all that while also coping with this horrible medical condition that has her doubled up in pain at times.

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Re: How do you explain to men?

Post  jjr23 on Tue Sep 27, 2016 3:24 pm

Hi Mark,

Thank you for sharing your point of view and reassuring me of a few things! I think it's so great of you to be contributing to this forum. It's very rare to hear an honest male perspective on this topic, and one with experience too!

You're right about being able to be intimate in other ways, such as oral sex. I guess when you can't do something (sex) it's hard not to focus on and worry about that. My pain is only with intercourse, so I am able to do other sexual activities. However I find it very hard to get aroused. Because I have always had pain from my first sexual experience, I have always associated anxiety, fear and pain with any sexual activity. So if a guy that I trusted was aware of my condition and was giving me head, I would still tense up a bit and find it very hard to relax, as I would anticipate pain if he were to accidentally touch the painful area.

My whole teenage and early adulthood was like that. I could never be 'mindful' during intimate exploration with another person. Just a lot of memories of pain and anxiety at the forefront of my mind. I'm 23 and had a vestibulectomy a few weeks ago. I'm still healing from the surgery and it is too soon yet to know the outcome. Whatever the outcome is I will work towards learning my body and learning to be mindful and relaxed. I have started seeing a psychologist about my sexual anxiety and she is helping me overcome my mental barriers and negative associations.

It's nice to you that men like you are out there! Thanks again for your message Smile

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Re: How do you explain to men?

Post  Mark on Fri Sep 30, 2016 1:27 pm

Hi jjr23,

Thanks for your kind comments. I understand what you mean about being tense and worrying your boyfriend could touch the sensitive area by mistake.

My wife had this concern when we first got together. She also had a voice in the head saying 'maybe he'll want full-on vaginal sex' because of past partners, even though I said I wasn't fussed about that.

So we went online and found out about erotic massage techniques and did that first. What it meant was that she was very aroused before I started going down on her, which meant she'd climax really quickly, with less chance of me brushing against the entrance to her vagina where the problem is.

Your situation could be different but it might be worth trying. Though if your operation works, hopefully it won't be needed... fingers crossed for you!

Mark

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Re: How do you explain to men?

Post  Kezz on Tue Mar 28, 2017 1:05 am

Mark - once again your comments are amazing!! Please don't stop contributing the this site!! :-)

Jjr23 - are you in the U.K. by any chance? If so, where did you have your vestibulectomy? I hope recovery went well for you sweetheart.

Kezz xx

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Re: How do you explain to men?

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