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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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Relatonship over because of VV

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Relatonship over because of VV

Post  Kate1981 on Mon Oct 29, 2012 12:24 am

Hello everyone

I am devastated my partner has ended our relationship because of v. He says it isnt but I know it is. He has a very high sex drive I have done everything I could to keep him happy sexually apart from penetration and he has still left me. I am so upset I hate this condition it has ruined everything in my life. I have lost my perfect job, my house and now my partner! Please can someone help me I feel suicidal!

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Re: Relatonship over because of VV

Post  Darkhorse on Mon Oct 29, 2012 6:19 am

Hi Kate,

Oh, I'm so sorry!!! I WISH I could say something to give you some perspective about this man walking out of your life, because this is THE reason we are suffering in my opinion more than someone with another type of serious medical disorder. It's one thing to have the disorder -- the pain and debility, which comes with many disorders -- but it's another to have the problem HERE, in this part of your body, which denies you the feeling of being able to participate in the most intimate of relationships. It's a SOUL-MURDERER!! Sometimes I feel angry at guys for not having anything to compare such a thing to. You hear so much about men having complexes about penis size, and I think, "what if you couldn't USE your penis AT ALL, and no medication fixed you?"

I'm going through some very dark depression and anxiety about the impact of this on my life, too (I'm on disability for a lot of other health issues as well, I have fibromyalgia). If I could take just one thing in my tortured body away, it would be THIS ONE THING - the V. Because of what it does to your psyche, the way your feeling fundamentally human is altered.

I've heard many women say (who don't have this), "A guy who really loves you will stay anyway, he's a jerk if he leaves." Sadly, I'd love to believe that...but the cold, hard, ugly truth I face myself is that I wonder how I can blame a guy for wanting more. That's where I'm at, which means that I'm not the best person to ask, as I still feel more emotionally crippled by this than some women with V, some of whom are on this site. I really admire the women who HAVE THIS and still say what the healthy women do. So hun, I'm more here to commiserate with you on that because I need the same words of wisdom you do. It's so hard to maintain your sense of worth when someone is walking out on you, and you see concrete evidence that the condition is impacting your life in such catastrophic ways.

So I'd love to know what others have to say, who may have walked through this fire. I'm single and afraid of what you're facing. I have had relationships end because of other reasons but in a couple of cases, the line of this condition and the other things was blurred to the point that that's where all my focus was.

May I ask how old you are? The reason I ask is because if I can give you one word of comfort, it's that as I've gotten older, I've found that guys start appearing in greater proportion who have experienced a difficulty of their own, they have matured and aren't placing the same laser focus on sex, and even a highly sexed man will be more willing to tailor the sexual menu without it being a dealbreaker.

So in the end, this is still a matter of individual men.

One woman (much younger than me, so amazing kudos to her) said to me that she views it as a screening tool. If they can't handle it, then she'll just weed out the weaker ones. I'd love to be able to think that way. I struggle with that, because that's a helluva screening device -- weeds out a vast amount of the healthy male population (and some will be okay with it at first, but how do you know that will last the test of time??). Cold hard truth, again. But I don't need a ton of men. I just need one.

And that is my mantra: I JUST NEED TO FIND THAT ONE.

One thing that gives me hope is reading the stories of women here who have partners sticking by them even with the pain, even with many compromises to sex, over the long haul. I don't know how they found 'em, and I need to write a thread to that effect (seriously, where did they find these men??), but knowing there ARE guys who will be different gives me hope here.

I've been where you are so many times. This robs you of so much. But I've come back again and again to this, I need to find a purpose to live that goes beyond all of this. It's almost a spiritual calling. Right now, because I can't work, I try to find ways to volunteer or stay involved in a way that makes the world just a bit better of a place, to feel some sense of worth beyond my monetary value or my sexual value or all the conventional ways people find a place.

In my darkest despair with this, I've had to take stock of the fact that if I kill myself, I won't be able to ever see a corner turned, nor do anything else I might hope to, because it's a permanent solution. Maybe this condition is a permanent problem. But I can't let it win, and you can't either.

Are you in therapy? If you are suicidal, PLEASE try to get in with a counselor asap. I find most of them horribly ill-equipped for this kind of particular agony, but it's better to have something to stabilize you (as long as they are sympathetic and kind, and non-judgemental) than have no one to process this anger and sadness with. I've got a therapist which isn't trained in sexual disorders and that's what I truly need, since this brings very specific grief and feelings of loss. But please, please get someone to talk to if you don't have someone already.

Don't do anything drastic -- this too shall pass, as an event. And the future is unwritten. I'm still holding out for the man who accepts all of me.

((BIG HUGS))

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Re: Relatonship over because of VV

Post  Sarah001 on Mon Oct 29, 2012 12:52 pm

Hi Kate, I wanted to chime in too because I've been where you are now and my partner of 13 years left me because on top of all the other health problems I have which he tolerated I got V and in his words he "couldn't feel close to me" without penetrative sex. He had hand jobs and blow jobs on tap but without the "normal" sex he wasn't satisfied and went out and found himself someone else who could give him what I couldn't. I am still single 2 years later and haven't made any attempt to find someone else because I feel it would end the same way, in fact I've kind of resigned myself to being single and sex free for the rest of my natural and I'm 39 so didn't think that would happen!! There are women on here who have found men who don't put the focus on sex but I do think men like those are few and far between, however the fact they do exist is a small comfort.

I decided to put the focus on me after he left and one good part is the lack of pressure to have sex when you can't. I felt constantly under pressure from him to give in and have painful sex but I wouldn't do that and knew if I didn't recover quickly he would leave me if I'm honest. I'm not able to tolerate sex at all because of the pain so it wasn't as though I could occasionally give in and have sex. It's much easier not having that daily pressure even though I didn't want my relationship to end and I put more time and effort into my physio for this condition and another one I have then at night I can curl up on the sofa in my comfy pjs and not have to think about sex or how to avoid the pressure for another day etc. It seems like the end of the world in the beginning but the lack of pressure is a godsend.

My advice would be to focus on trying to improve your health in whatever way works for you and put all your effort into that while you get through the loss of your relationship. And you will get through it, talk to your friends or a counsellor if you need to but do use the time to try and improve your symptoms so you can come out of this fighting. x
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Re: Relatonship over because of VV

Post  Kate1981 on Mon Oct 29, 2012 5:02 pm

Thanks for your reply both of you. Darkhorse im 31 and I feel my life is over. I was in a 9 year relationship before this one which ended last year and i was devastated. Never thought id meet anyone else and someone from my past came into my life who I fell for. I had this pain from the first time I had sex with him. I went to sexual health clinic all clear but after a week of antibiotics it cleared. It happened again in june but quickly went and then came back after sex in august. The sex was never painful the pin started 3-4 days after which i dont understand. I dont suppose either of you have the same? Could my partner have injured me in some way? The pain which came in august has just been constant and horrific it alternated from burning to a sharp stabbing pain on the inside of my vagina on the right quite far inside! im confused! Since this flared in august ive been in agony everyday and sex a massive NO! I cant believe he has left me I thought he really loved me. He says my reactions are irrational! Im not myself im taking ami and lyrica and I cant function. I may be snappy and down but isnt that understandable for what im going through when I never had this before him??!!

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Re: Relatonship over because of VV

Post  BpCookie on Mon Oct 29, 2012 7:29 pm

Kate hun, You poor poor sweet heart. A man you honestly loves you will never make you cry. That's what I always tell my daughter.

I've had this pain for about a year and a half. When I was first diagnosed it was more of an irritation. After about 6 months it got way worse. It was constant burning pain that spread to my butt cheeks and to my inner thighs. I was desperate. I became irritable, VERY ANGRY, I would cry all the time and there were times that I wanted to die. I'm still in pain and have tried almost everything. I'm not sure what brought me out of the depression and the pissed off mood I was in all the time. I think that after a while I just accepted that I would be forever in pain and I would have to limit my activity to what ever my vagina said I could do.

Eventually you will need to accept what you have and that there is no cure. Accepting it doesn't mean giving up on trying to find a treatment that works for you. Keep looking, keep search, keep calling different Dr.s, Gyno's, specialists. Think out side of the box (no pun intended). Do some research, read the posts on this site, you will learn a lot from ppl who are going through the same thing as you. Take notes and write down different treatments that you have find while doing your research. Bring the notes to your Dr. visits. Ask your Dr. questions.

If you feel suicidal then pls. call the suicide hot line. They can be great help. You may want to get on anti depressants for the time being. Please feel free to reach out to us. Please take care of yourself. hugs
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Re: Relatonship over because of VV

Post  Sarah001 on Tue Oct 30, 2012 2:20 pm

Mine started with at least a year of mild VV where I had pain on initial penetration but it went off in seconds and then no pain until the next time we had sex. For a few months after that I had a bruised kind of feeling on the right labia majora right where the adductor tendon is and then I just woke up one day with full blown unprovoked V and it's never gone away since. If your pain is deep it's possible it's pelvic floor related, I have pain all the way along inside because of a seriously tight pelvic floor and if you haven't had it checked it's worth going to a Women's Health Physio about it. I'm also on Ami and Lyrica and know what you mean about not feeling able to function very well, I feel spaced out all the time these days. And as for accepting there is no cure I don't agree with Bpcookie on that one, it depends on the cause as to which treatment works, the information that it won't ever go away is really if we only take meds to cover the pain up and don't figure out what to do about it. My physio sees lots of women with V and if their problem is something she can deal with they recover, in fact another woman with V started round about the same time as me and she's nearly fully recovered now so it isn't always a life long battle. I think if all swabs have been clear after having sex with the man in question it isn't likely he's the source of the pain, if he had injured you it would have been painful at the time it happened and as V seems to just appear from seemingly nowhere it's probably a case of it would have happened anyway. A good book is "When Sex Hurts" because it's mostly about helping women figure out why the pain is there, I recommend it to all women with V as it's so helpful and positive and like me the author thinks the diagnosis of V without checking for all known causes isn't really a diagnosis at all it's lazy doctors who can't be arsed to check for all the probably causes. Focus on yourself and see where you end up. x
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