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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

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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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

venting. suggestions welcome.

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venting. suggestions welcome.

Post  what2do on Tue Nov 29, 2011 5:55 am

firstly let me say, thank you all for the many times i have come here over the years. this site has given me so much help by just reading.

Tonite i was so upset i apparently wrote down for the first time the stream of emotions ive been going through. take it as nothing more then just a rant of frustration. it is long, i havent corrected grammer, and i dont expect anyone to read it. but if you do, and you have any suggestions, you are more then welcome to read it and suggest.

feeling so confused. dont know if my being around too much just drives her away. i realize i am not fun to be around to the point of her needing me to go out so she can have her own time. she wants space. and i want closeness. going on year three without having enjoyable intercourse. i love her, but it always feels like not only is sex an enourmous chore for her, but it really isnt fun for me when she is grimacing and staring at the ceiling waiting and expecting pain. at this point i dont know if we will ever have a regular sex life. ive lost hope so many times before its really coming to the end of my patience. i have not seen her do anything for the vulvodynia for almost a month or more, i really dont think she puts it at the forfront, but understandably. it just feels like there is no end to this nightmare. constantly around someone i want to be with always, to love, to hold and to cherish, and all i can give her is time out of the house. i listent to what she has to say, i try to share, but then i try to share something and its met with a passive "o thats nice dear'. i really dont think she is attracted to me anymore. the price i pay for exposing all the idiosyncratic sillynesses of my persona. perhaps im too childlike, or justa fuck up. either way its irrelevant, the damage is done on top of the vulvadynia. its liek slowly watching the relationship die as we go longer and logner without geniune sexual mutal contact. i would be none to suprised if she divorces me when i finally explode from not being able to be with her mentally or physically. at least then she can find someone who wotn hurt her everytime they make love, wont have to give the look of shame and anger that i can only precieve is directed at herself and me for having to put her through something that isnt even fun, let alone naturally occuring. i wanted so much for this marriage to work and too last. perhaps its just a low point in the road, like all the others. it seems as tho she just needs to pacify my once every 6 weeks when it becomes an isse, after we have skipped weeks where she shows no interest in being close, hugging, god forbid wanting to have sex with me. maybe she does, she saids she does. but then in two weeks time, the streches are forgotten, the medication is missed, the dialators are abandoned, and we return to square one. even if she did keep up with the chore of sex with me, it would be so far and few between and so forced it really makes me question enduring the next 20 years with occasional pity based "i know you have needs". i know she has needs, she must! she also saids she does, but without me trying to intiate nothing occurs. without my constant nagging nothing happens. shes terrified of our sex, and i really dont know how or if i can even do anything to repair it. i could try to intiate every day, but even i cant take that much rejection. the sexual intitation is not even in my book anymore. in the old days i would simple give her a look, a touch and she would willingly want to have with me. now it feels like she is repulsed by me, that the very attempt at intiation is not even within my realm of priviledges. and so i wait... again... and longer . sure we have an attempt at sexual relations now once a week for 4 whole weeks in a row, but it seems like its just chore to her. she tries , i know she does but it just doesnt feel like she is authentically attracted to me anymore. when i broke my penis we started having sex less then 2 weeks later without issue. if there is a desire, the body will take care of the rest i would like to believe. based on the constant up and down flow of her desire it seems that the only times sex is enjoyable, or tryable, or when she is invested and interested not staring in space is once ever two weeks, before and after mentration. there are excuses for every other time. there will never be regular sex on weeknights, only weekends. and at that every other will be skipped in light of some extenuating circumstances that seems like pandering to bide time utnil the next encounter. and then half the time after all the build up, and boring lead in from planning sex 2 days ahead of time, having it delayed a week, then something comes about, we get started, she searches for pain the whole time, and at the soonest sign, usually about 5 seconds after the first penetration, with 40 minutes building up and attempting at foreplay, it ends and i am left to masterbate in my room alone yearning only for the person i love in the next room. is this any way to live? its been 2.5 years, is this a cross i bear for the rest of my existence on this earth? i would never cheat, i would never be spiteful. but i would end it if it has no chance of chaning, or more clearly if it has no chance of changing with me. she may be able to love another and actually have a fulfulling sex life. perhaps its just her conditioning to my crazy antics, childlike behavior, and adhd lifestyle. perhaps its because i dont bring in enough income, or dont try hard enough or something. maybe she can never feel secure until i have procured a job that will allow her to buy the things we both need. not to imply she is shallow by any respects, but money is security. intimacy is quite literally the only reason i worry about money so much, many times i have found a direct correlation between money to spend on things needed and sexual contact. the problem is so massive, so mind bogglingly complex, i would not be at all suprised if her vulvadynia is a reaction to me. a direct psychological collision with her desires and fantasys, and then finding a fuck up like me in reality. i would set her free to be happy. i want that so much. i want her to just go one week without worry about something, without having a family crisis, all because i want her. i want to be with her. i want to share with her. but it seems whether sex or real contact and discussion, all the other neurotic details must be dealt with first. also understandable, but i dotn think there will ever bee a time there arent other details. after all the time with dealing with her father and mother, and going to ot treatment for vulvodynia, and whiplash, and treadmills, and weight watchers, i just dont know what too do. i dont know what i can do that i have no tried, and i honestly at this point am sinking in faith that it will be resolved, that it will get better, and that she is committed to having us fix it. it can only be fixed with learning trials, and 52 a year at best is going to take a decade to even get back to a regular sex life, let alone will she not be doing it as a chore to keep me happy. what do i do? do i get out of the house working third shift at a job i hate? ive done this already, ive tried everything, going on the road selling to increase desire. it seems my very presence is what keeps her from desiring me sexually or intimately. it seems that once every few weeks she is playful enough to even get ot that poitn, and it seems that have been fighting a loosing battle for almost 3 years. march will mark the 3 year anniversary of her diagnosis, and the 6 year anniversary of us stopping regular sex multiple times a week. its an endless snake eating its own tail, i can go out and provide money for security but will not be pleasant enough to be playful, or i can ask her what i can do or what she can do to fix it, she can tell me of what she is going to do from now on, and stop doing it in two weeks in favor of watching tv shows. what the fuck do i do. what the fuck do i do goddamit. i cannot help but think that knowing how i feel about her, about the desires i have for things to do with her, the need to sexually express myself, if she truly feels the same as i do about her still, why is it a non issue. why is watching reality tv shows more important then luring your husband out of his room and intiating some relaxation time. because it isnt relaxing, because despite all the time and effort and meditition i have spent in every single setance i have ever spoken to her, i still fucked up. i still somehow managed to alienate her with some way that i reacted, at some time with this whol tribulation that i didnt understand and reacted wrongly to the bets of my ability. and i doubt that damage can be undone. i doubt that she can not think about all the times we have started and she has stopped us, and i doubt i can. i have noticed in the past 6 months that i am slowly growing less interested in anything sexual. and this certainly not for a lack of trying or interest. for me, one could say its mentally painful to look at pornography. to desire something that is almost worse then being single. a single person has hope of having sex at sometime in the future, they can fantasize. i cannot even bring mysefl to do that, for all the ficticious "o just get through this and it willb e like this" situations. in this marraige i have made a transistion from expecting more sex after marriage (how stupid that seems now upon realizing it) to realizing that there may never be any regular sex life. not that there has been for a long time, but i am and was so in love this woman i would make love to her every day, gently as long as i possibly could. and now i am left with nothing but dread and erectile dysfunction for all the mental blocks and suppressions of urges, and attempts at understanding, and explaining my reactions to something i cant change and she apparently doesnt want to. i dont even expect regular sex. even that dream is dead. i know now full well that every time we enter the bedroom for those things, that firstly it may end in the next 5 mintues before anything beacuse i just conned her into it, and she really wasnt interested. if that passes then we move on to actual touching, and provided i dont 'take too long' with foreplay we move on to fun stuff. im terrified to even be close to her, to touch her, she and i are both expecting her reel back in pain. i have noticed also with this lack ni drive, that i dont even want to attempt. that when the situation arises, even if i am in the mood, it seems like it will explode at any moment. that she will reach down grab my hand and say "thats it" , and then its over. and worst of all i dotn even feel when we finish well or bad, that sex is even possible for the next 7-10 days after, from the oncoming cramps from the lack of sexual activity to begin with. i dont even feel comfortable hugging my wife, for all the times commentary has been made to spoil the moment about weight or appearance or any of the things that dont matter. i dotn feel comfortable even touching her neck or any part of her body without permission first, because it is intsantly met with "i am not in the mood" even if i was just trying to be affectionate. all affection has been repressed within me, to the point where i am through the apex and am now just coasting to mental breakdown. i dont even know where the part of myself has been suppressed too, its not as tho i desire an affair or any nonesens like that. i dont want random sex, i want my wife. i want to make love to my wife, which we didnt even do on our weeding night or even during the honeymoon. i at first thought this to be a terrible owmen, but was promised as i always have that "things will get better" that "it will improve" that the current external to our relationship reasons for her not being in th emoood or we arent able physically to have, and this was even before vulvodynia. what the fuck am i to do. where am i to turn. how many more specialists do i encourage her to see. do i seek a specialist for our problem, while she neglects dialators? what the fuck do i do, where do i land? how can i get out of this endless nightmare and save my marriage and the only fucking person on this planet i give a damn about without pressuring her or making her uncomfortable. how the fuck do i salvage a marriage that has already been dmaanged without my doing or hers. where do i start to pick up the pieces? where do i turn? lately its been a simple question of when and how do i kill myself, so she can move on with her life. i give up. the sail has set. i have done all within my power, and nothing has changed enough to be 'normal'. i just want to see her happy, and i dont think that is ever going to be with me around.

Last edited by what2do on Tue Nov 29, 2011 5:57 am; edited 1 time in total (Reason for editing : oops)


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Re: venting. suggestions welcome.

Post  ButterflyLiz on Tue Nov 29, 2011 8:12 pm

Hi there,

I did read your post, and while it may be an outpouring of emotion as you say, this doesn’t mean it’s “nothing” and I think it’s really important to not neglect how you are feeling. You may not be the one with the physical pain but your wellbeing is just as important as anyone else’s. If you get to the point of feeling desperate & that you have no-one to turn to, you can always reach out to the Samaritans. May sound cheesy but it can be really help to offload to someone completely removed from the situation. If you don’t want to talk you can also email them.

Well obviously, being here, I am a woman with vulval pain. At the moment I don’t know of any support groups for partners, although I think you all could certainly use one. I do feel moved to share my thoughts with you, but bear in mind I am coming at this from a different angle to you.

Also bear in mind that I can’t speak for all women with vulval pain, but I can share my experiences & hopefully some of what I say might help, even if it’s just a little bit.

Having chronic vulval pain for any length of time messes with your head. It messes with your sense of yourself as a complete person, as a woman, as a sexual being, as a functioning member of society. Its detrimental effect on a person’s self-esteem should not be under-estimated. I know from experience how hard this is to explain to a partner. However, that’s not to say the partner is at fault, absolutely not. It’s just that there are few other experiences in life that are comparable.

I have had times where my sexuality has gone completely underground due to the pain. It makes sense, really – if you’re continually doing something that hurts your body, at some point your body and mind are just going to refuse to want to do it anymore. You say that surely if the desire is there, the body will follow. Sadly, I know this to be completely false, from bitter experience. Until the pain is under control, and positive sexual experiences are gained, the body won’t be having any of it.

Is your wife in touch with any other sufferers? That can really help. I know it might sometimes seem like she is skimping on treatments (dilators etc), but in reality none of these things are likely to be a complete cure, and the knowledge of this can sometimes be enough to drive you away from doing them at all. Counter-productive, I know, as they may well help, but I have found myself doing this in the past.

Self-confidence is the key to feeling sexual. Through this condition I have had to completely redefine sexuality and what it means to be a sexual being. I have had to accept that penetration is not always possible and be confident that this will be acceptable to my partner. That’s really important. Maybe see if having a “no penetration” rule for a while would make your wife more comfortable to have spontaneous, pleasurable sexual contact with you. It seems like you’re frustrated that you’re not having penetrative sex, but that really it’s the intimacy that you miss. If so you may need to redefine your idea of what sex is for a while, too.

If your wife really needs to start from scratch, which I have a few times, look up something called sensate focus. Or even just trade back massages, initially with the complete understanding that nothing further will come of the encounter. It just helps to rebuild that physical connection.

Well, I have no idea if that’s of any use at all, but if it helps, it sounds like I have been where your wife is now, and together with my partner managed to get through it.


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Re: venting. suggestions welcome.

Post  lolainslacks on Tue Nov 29, 2011 10:02 pm

Everything Liz said was wonderful. I'd just like to briefly add my own experiences. I think it may really help you to hear from other sufferers, as it seems communication between you and your wife is currently not great.

My pain is such that I cannot physically have sex at all. At least, I have never been able to. Sex is a goal that I aam working towards, but I don't know if I will ever experience pain free penetration. My pain may be lessened by constant use of dilators and stretching. However, I sometimes go weeks without doing either of these things. Why? Because some days the absolute last thing in the world that I want, is to be touched in that area at all.

You have to understand the real depth of emotional suffering that we endure, on top of the physical pain. I woulld say that for me, the emotional suffering is actually the worst part of this disorder. Women have to endure an almost constant flow of signs/messages every single day telling them how their value rests on their physical attractiveness and what they can offer sexually. I don't think men fuilly realise the extent of this 'brainwashing', as they are not the targets. We are bombarded with sexual images all the time, people having sex on tv, in movies, sex referenced in music, and in commercials. This is exhausting. We are being reminded every second of every day how we are 'failing' as women and it makes us feel horrific.

And the physical pain speaks for iteself. Imagine that whenever you had sex, your penis felt like it was being set on fire, or that every thrust felt like scraping against sandpaper. You would not want to have sex, and pressure from your partner would lead you to believe, despite their best efforts, that they didn't care about you, that they weren't taking your pain seriously, and that because you couldn't satisfy them they secretly hated you. Any physical contact in that area would hurt, and you would completely associate your penis with unimaginable pain. I don't think you'd be very motivated.

Some days even though I know dilators will help me in the long run, I just cannot face the thought of any penetration at all. Even though I am in control of the dilators, and I can move at my own pace, and even though it is beneficial, it fills me with dread, and I often end up in tears simply because the pain triggers this stream of thoughts and feelings about how I am defective and broken and no-one will ever want me.

Your wife likely suffers in this way too. You have to be patient with her and allow her to heal in her own time. I know you are trying very hard, and you sound like such a supportive partner, but your continual efforts to have sex are probably counter-productive. You need to go right back to basics and work up from the most simple forms of intimacy, like hugging/kissing. Penetration is not something she can force herself to enjoy, or that will become easier over time with continual practice. The thing that will have the biggest impact on her pain levels is a change in her mood. Right now penetration is a chore because she is miserable with this disorder, and she likely feels like she's just doing it to please you, which could lead to resentment on her part. When she is not in the mood, the physiological effects on her body will increase her pain. Once she learns to feel comfortable with you again, and she comes to terms with the fact that intimacy is not all about penetration, she should be more keen to be close with you.

I second the suggestion made by Liz, I think you should stop trying to have penetrative sex competlely, until she is ready. Make it known that firstly, your focus is on her comfort and pleasure, and secondly, that when you are attempting to be itimate, you are not doing so to get sex. Sex should not be the goal, the goal should be intimacy, you can both enjoy being intimate without it leading anywhere. This could continue until she is ready to go further, it should all be taken very slowly and at her pace.

Also, you have to stop thinking that this disorder is something that is specific to you and that another man would suit her better. Penetration is penetration. She doesn't hurt because you are doing something wrong, she hurts because she has a medical condition that is completely out of her control. You have nothing to with it, and leaving her would only make things worse.

I wish you both luck. Why don't you direct her to this forum? Hearing from other sufferers may help her.


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Re: venting. suggestions welcome.

Post  SimplyBelle on Mon Dec 05, 2011 7:25 am

At first I thought this was my fiance. The date posted and time posted correlated perfectly with an incident we just had regarding intimacy/sex/etcetra, but we haven't been together 3 years, only 1.

It's one thing for us as women to get together and talk about an issue that's so "shush shush," but the men in our lives, thats a whole different ball park.

My fiance and I have found the pillow talk at bedtime the most important, and I recently bought a book about fear and anxiety regarding sexual pain that my fiance and I are working through. But, in many ways you have to be reassuring that intimacy doesn't mean sex or at least painful sex.

Hm. I dunno. the other ladies had so much fabulous stuff to say, that I definitely second and third, and I'm going to forward this post to my fiance, because you aren't the only one, and he isn't the only one.


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