My Story with Vulvodynia

Hi. I thought it was about time I shared my story with someone, as this condition has greatly affected my life and caused me a lot of grief. I am in my late twenties and I have suffered with vulvodynia for several years. My problem started a few years ago when I began experiencing intense pain in my vagina. The pain got worse and was with me all of the time to the point where I would really be in agony with it. There were times I'd wake up in the night nearly in tears with the pain. The only way I can describe it is that it felt like the sort of pain you get with tonsilitis or an ear infection...only it was in my vagina. My first thought was that it was an infection of some sort...I'd had yeast infections in the past but this was WAY too bad to be something as minor as that. So I made an appointment at the GUM clinic as I was convinced I had an STD. I had never put myself at risk (had only had two sexual partners in my life and had always used condoms) but thought it was best to get checked out to be on the safe side and I asked my boyfriend to get tested as well just incase.

Sexually I was really quite inexperienced. I had not been having sex for long before my condition started. I really feel that it has ruined my sex life. I had not experienced pain during or after sex prior to these symptoms coming on (apart from when I lost my virginity, but even then it was nothing really bad and didn't put me off, like most women I would occasionally get pain on initial penetration for a short while after that...but that was down to being inexperienced....getting used to penetration, learning to relax with it all etc and then I started to really enjoy it) so no real problems. I'd only just got to the point where I was used to penetration and was beginning to have a sex life and beginning to enjoy sex. Previously I had had none penetrative sex and really enjoyed it...but penetration was something I was still getting used to.

I was in a relationship at the time, and because of the pain sex was out of the question because I would have been in even more pain...I was in enough pain as it was so it seemed logical to just not have sex for a while until this was sorted out...also because I thought I had an STD etc...wouldn't have been sensible. So I got tested for STDs. I had only ever slept with two people and had never had unprotected sex. I even thought it might be an allergy to condoms...then I thought (because I was in so much pain) that I had an abcess or maybe a cyst or something that was pressing down and causing me pain down there. I tested negative for STDs which was a relief and they could find no abnormalities ie infections, abcesses or anything else like that, although they said my vagina was sore and my cervix was inflamed so I was diagnosed with non specific cervicitis and vaginitis and was given whole load of antibiotics to take just incase (which really helped and eventually the pain got completely better, so I think it was triggered by some sort of infection). The tests at the GUM clinic were excruciatingly painful...at one point I thought I was going to pass out...anything going into my vagina was agony because of the pain I was in...sex was out of the question and that was really getting me down. I'd had things like smear tests in the past...with no pain...but now because of my condition anything like that was agony. If I'd have had sex while I had that problem it would have been off the scale kind of pain...I'd probably have passed out if I'd been physically able to do it at all and I'm not exaggerating. The pain was there all the time, it wasn't just a sex thing...that was just the main area of my life it affected...but the rest of the time I was in agony...having to take a lot of painkillers all the time etc. I had to be careful with my movements, I couldn't have done anything like riding a bike or horseriding (not that I do those things anyway) and I couldn't wear tight jeans.

So I made an appointment with my GP who referred me to a gynaecologist and in the meantime treated for BV and thrush, which helped to a certain extent. When I went to the gynaecologist they did all the tests again and found no infections, and they also did an ultrasound. They put me on doxycycline and metronidazole to be on the safe side and remedeine for the pain as normal painkillers just didn't touch it.

The really intense pain seemed to get a LOT better after this which was a huge relief after 5 months of pain....I was so glad because I was starting to worry that I'd just have to live with it. I'm so glad it's over, it was one of the most stressful times of my life....being in intense pain, not knowing why, thinking the worst ie worrying it was an STD or a serious gynaecological illness likely to render me unable to have children or to be able to ever have sex again. I am SO GLAD that period of my life is over and they cured the pain!!! I thought I wouldn't have to worry about it again...that I'd just had some sort of gyno problem or infection...women get them....and now it's over. I was anxious about having sex again incase it brought it back, but I hoped now that that was the end of it and I could have a normal sex life, just like I'd always wanted and just like everyone else.

However ever since this happened I was left with an almost constant burning sensation in my vagina, like a persistent yeast infection...which is nowhere near as bad as that intense pain I had before (nowhere near on the scale of that)....but it is there all the time and although on a day to day basis it's just something that's there that I'm aware of...it's not agonising or anything like that and doesn't stop me doing anything, just slightly annoying...it IS bad enough to interfere with sex (well, penetrative sex anyway). On a day to day basis, it's a minor problem, when it comes to sex, it's a HUGE problem! Feeling that burning sensation down there all the time is like a reminder of my sexual problem so it gets me down for that reason. When I hear people talking about sex, or watch anything on TV whereas before I would enjoy it, it has started to get me down as I realise everyone else seems able to have sex whenever they like, with no problems (or at least that's how it seems). To a lot of people it's difficult NOT to have sex whereas for me it's a huge deal with a lot of anxiety about pain etc...or not being able to at all and all the agonising over when would I tell a new partner, should I tell him? Will I be rejected? Cheated on? Pressured to do it despite the pain? I really feel that I'm missing out...it's no fun not being able to have sex...plus it starts to affect you emotionally as it affects relationships, you can't act on your feelings for someone because of where you are in pain and also you can't talk about it to people as it's so personal. If you had chronic pain in any other part of your body you could talk about it, but the one area that affects such emotional areas of your life such as sex, relationships and childbirth...it's seen as embarrassing to talk about in public....so you don't....you just have this hidden illness. While I'm glad to be out of that really bad pain, this burning sensation although there are ways around it and it's not as bad, gets me down as well, because of how it makes me feel about sex.

I sometimes feel like one of those uptight prudish people, because this has put me off sex...even though it's not my fault, it's a medical problem...and if it wasn't for that I'd be active sexually (once something has been taken from you, you want it all the more). Then at other times I feel like I have an STD (even though I know it isn't, it's a pain condition) and that if I had have only slept with the person I wanted to spend my whole life with this would never have happened and now I'm tainted before I've even met that person.
I am the sort of person who needs to get to know the person well and have feelings towards them before I sleep with them...I'm not into this 3rd date rubbish...there needs to be more to it than that for me...even without the vulvodynia.

I was told to bombard it with canesten pessaries and tablets...and to eat a lot of yoghurt which helped a bit...it seemed I had a really stubborn yeast infection. I tried several times to do a candida cleanse (that diet where you can't have wheat or sugar, including fruit).

I avoided sex completely obviously when I had the really bad pain. I thought it would be hard for a guy to understand as obviously they don't have the same anatomy, so might not fully understand how bad it was and why I couldn't have had sex. When it was better and it was just the soreness/burning sensation my partner was understanding...obviously during those few months when I had the bad pain I couldn't have had sex (I'd have passed out, I was in enough pain in that area as it was). When I was feeling quite a lot better...we started to take our sex life quite slowly and we pretty much did everything else but penetration (you just have to be creative) but when we did try and have penetrative sex I would feel this burning sensation...and I thought it would ease off... but it didn't...it happened again and again and got worse during the sex...and we'd have to stop and do something else...in the end it was so painful I just physically couldn't do it (I think I had developed vaginismus as a result of experiencing pain) and I began to worry about sex morning noon and night. Sex is supposed to be fun...and your both giving each other pleasure...but although I enjoyed non penetrative sex...I now associated penetration with pain and began worrying about it all the time...and about the effect it was having on my relationship...and it became a source of stress rather than a nice experience or about being in love/having fun.

The relationship fizzled (not just because of my problem...it would have ended anyway as it was a long distance relationship and to be honest I think I'd rushed into the sexual side way too soon...I wasn't completely happy about the relationship for a lot of reasons...and I don't really think I knew the guy well enough to really be having a sexual relationship and I regretted rushing into it...).

However after this I was really worried about having another relationship because of the sexual issue. This pain continued and continued and I was eventually diagnosed with vulvodynia. I did date a few guys during this time but I always ended things before they became sexual....I couldn't face having the conversation about my problem...or ending up having sex and then being in pain etc...One or two of the people I went out with around that time I ended up just being good friends with...however I did find through my experience that some men can be really pushy and really selfish when it comes to sex...I was assaulted by one guy that I was on a date with, which was a horrible experience...and another one I was with for a while....I was still getting to know this person and even without the vulvodynia hadn't decided whether I wanted to sleep with this person yet...he was constantly constantly pressurising me and it really stressed me out...these experiences put me off for a while.

In light of my condition and my experiences...I decided to just stay single for a while and have a break from relationships...I'd been dating since I was 13 (although I didn't have sex until I was almost 20) so I just kind of wanted to have a break and figure out who I was and what I wanted from life before rushing into another relationship. I was at uni and a lot of my friends were young free and single. At this point I was in my early twenties.

So I stayed single for about a year...I decided to just forget about sex for a bit. When I felt more like I wanted to start dating again and I wanted to have a relationship...I was still really anxious about sex....obviously I still had the burning sensation and hadn't been able to get rid of it...vulvodynia is a chronic problem for me. I hope to be free of it eventually. I felt stupid for having this anxiety around sex...I wanted sex...but I just wished this pain wasn't there...

I was now 23. I was at the age where people are starting to settle down, and I wanted to find that person who I was going to spend the rest of my life with, to be in love and to have a fantastic, pain free sexual relationship, I really missed the intimacy and all the feelings that go with sex...but obviously this pain/anxiety was there...it was like being a virgin all over again but not in a good way, in an anxiety about penetration kind of way...only worse because this time around I know I have a medical condition. I just worried all the time that I wouldn't be able to have sex...and that if I got into a serious relationship it wouldn't be fair on the other person...I felt really bad about myself even though it wasn't my fault. I didn't want to drag anyone else into the misery of not being able to have sex...and I didn't want to get cheated on either...which seemed inevitable.

As the next few years went on I did date a few people...and I had one fairly sexual relationship. Again I really loved all the other sexual stuff, I'm able to be intimate and I can have orgasms etc...but when it came to penetration...I'd be in pain and have to stop....it didn't help that I kept on reading articles in magazines or I'd watch something on TV or overhear conversations about people we knew that were constantly making me feel that men go off and find someone else if they're not getting enough sex with their girlfriend/wife. I started reading stuff on the internet about sexual problems and relationships and I got really depressed about it...I started to realise that some women don't even enjoy sex or they find it painful but they do it anyway to keep their partner (surely if that is how sex is...then why do people feel sorry for you if your single...surely it's better to be single than to have someone hovering around you wanting to hurt you all the time and having to pretend to like something so personal that you hate....it doesn't make sense....and this isn't how I see sex or how I want my sex life to be...) I don't get these women at all...and I hated the way I was starting to see sex as something you just do for the man...and not a mutual thing at all....especially because I'm missing out as well!!! Maybe this problem protected me, as it made me take a step back and sort my head out, take care of myself emotionally, take a break from relationships and sex (which I needed to anyway) and think about what I wanted from life and what I wanted from relationships and sex...maybe if it hadn't have happened I'd have rushed headlong into a relationship with someone who was not good for me, for the sake of being with someone...now I'm glad I have taken a break from relationships and that I have been single because it's made me more independent, more sure of who I am, and what sort of relationship I want and what sort of person I want to be with. Now I know that if I have a relationship it will be out of genuine love and because I really like being with them, not because of feeling I should be with someone because of fear of being single or because everyone expects you to be settled down by a certain age.

As my twenties went on although I did date people and there was one relationship for a bit...I became increasingly embarrassed about my single status...and started avoiding people because I didn't want to be asked questions about my love life...at the same time as really wanting a relationship I also really wanted to avoid relationships and it all got so confusing...I felt like an angst ridden teenager and I couldn't talk about it. It was eating away at me...people were constantly asking why I wasn't with anyone...and I worried what people thought of me for it...I genuinely felt that because of my problems with sex...I couldn't have a relationship because it's not fair on the guy....but just because I have a medical condition doesn't mean I don't deserve love. Throughout my mid to late twenties I was constantly bombarded with "found a bloke yet" "how's your love life" etc etc etc...at one stage my family even made me feel I was letting them down as everyone else my age was now having weddings and babies and there I was still single...or I'd have people who'd just assume I was desperate to be with someone "can you not try a dating agency" etc etc. The whole time I was secretly actively avoiding relationships because of how I felt about sex...I felt like it was taboo....everyone assumes you want to be with someone at all times and whether you want sex or not doesn't come into it...it wouldn't enter anyone's mind I could be really avoiding it because of an issue with sex...or I might just not want sex...some people don't? Not that that's all there is to a relationship lol...can't sex get confusing....it should be simple!!!

I remember having this conversation with some of the lads down the pub one night...when one of them was talking about how he was thinking of cheating on his girlfriend as he wasn't getting any action anymore and men "need" sex....(I understand that people feel pushed out if their partner goes off them sexually....and this can sometimes be the triggering factor in infidelity...but there are probably other issues in that relationship and try and work things out...don't just go and cheat on someone) and I said hypothetically "what would you do though if you had a girlfriend and she had a medical problem and couldn't do that for a long time?" One of the guys said "I'd dump her" in the tone of voice as though she was a worthless person and the other one (the one thinking of cheating) said "Well just because it's painful for her doesn't mean she shouldn't still do it...at the end of the day you need to keep your man happy" it made my blood run cold...and I was left wondering...is this what all men think...and do I really want a boyfriend if this is what they're like. That conversation and several other things I heard around the time were enough to put me off men and sex for life...I hated how something that had once been so good had been turned into the complete opposite.

Not long after my health started to deteriorate for a number of years and I was eventually diagnosed with pernicious anaemia...I wasn't well enough to really go out a lot...so didn't meet anyone during this time and because of my illness I lost all confidence in my body and all interest in sex, all interest in everything as I was so ill. When I was younger I was always thinking about sex...and now it had completely changed in my mind from something exiting and pleasurable to something painful and stressful and embarrassing cos of how I felt about myself. I didn't even want anyone touching me sexually, or to get naked with anyone (prior to this I'd always been happy with my body and now I wasn't). The vulvodynia was now seriously bad and I also had chronic cystitis. This continued to get worse and worse until I finally went on B12 injections. When my pernicious anaemia was finally treated a felt a lot better.

So I'm now 29 and single. Most people my age are settled down and live with their partner...or they're married and starting their families...and sometimes I wonder if I'll ever have a normal relationship, marriage and kids...the things I wanted when I was younger and that I still want. I know the main reason I haven't is because of this condition and the effect it's had on me sexually. I just want to be able to get to know someone, fall in love with them, be able to have a pain free sex life or at least just sexual intimacy again and to eventually have a family....

I'm glad I found this forum as I realise I'm not alone. It's made me wonder how many women I know have had problems with pain that affects them sexually...I don't talk about it...so perhaps they don't either...and I just assume everyone else is pain/anxiety free when it comes to sex and that I'm the only one, when I'm probably not.

Obviously the pain gets me down, but it was the not being able to have sex that really gets me down, as I really feel that I'm missing out on a lot....sex is painful, life is dull...I just want to be able to have fun again...to be able to be in love and to act on my feelings...this is just so hard. I could cry my eyes out over it. It's ruined my sexual development and experiences....there isn't a day that goes by where I don't get upset/angry/worried or screwed up over this. It has my mind going round in circles. The emotional effect of it has been horrendous.

Sorry this post is so long...I've just re read it and instead of the 15 page essay I've wrote here on my pain down there...it would have just have been so much easier (and meant the same) to have just written "aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah, I JUST WANT TO BE ABLE TO HAVE PAIN FREE SEX AND A NORMAL RELATIONSHIP!!!" Bang head on wall several times and burst into floods of tears!!!

Hi Ceriane & welcome to the forum. Sorry to hear about everything you’ve been through. I hope you find support and maybe some new treatment ideas here.

I relate to what you said about anxiety over sex; associating it with pain and the resultant fallout from that. But also, there are great people out there who don’t see sex as the be all and end all. There are guys who are more understanding than you would think from the messages that society gives us (I’m with one of them!), who do stick by their woman, complicated sex life or not. And there are ways to be intimate.

As for the guys at the pub who would dump a woman who couldn’t have sex, I just hope that if they ever develop erectile problems, pelvic pain or any number of other conditions that interfere with their sexual functioning, any partner or theirs is more sympathetic. There is a lot of bravado that goes on I think, too, when men get together and talk about sex. A lot of macho posturing that is not necessarily how they would actually react if the situation happened with someone they really loved. Even so, I would not want to be with someone who had that kind of attitude anyway, pain or no pain.

There is hope. How bad is the pain these days, is it mostly under control? Have you got any treatments lined up?

Liz x

Thanks Butterfly Liz,

Your post has really given me hope. I just want to be a normal woman, with a normal relationship and a normal sex life. I know sex isn't the be all and end all...and you can have a sex life without pain or even without penetration providing you have an understanding partner....maybe there are plusses to having this condition...it makes you HAVE to be discerning when it comes to choosing a partner, it makes you HAVE to get to know your body well and what works for you and what doesn't (I read so many problem pages with women who had been having penetrative sex since they were sixteen and were now in their forties and had never had an orgasm) getting to know your body, with or without your partner, without penetration...you sure as hell get to know what turns you on and what doesn't. It also means any relationships you do have are based on so much more than just sex...and there is a good foundation to the relationship...so many relationships can be shallow and based only on sex...as soon as it fizzles they are off cheating with someone else as they realise that they don't actually get on and sexual attraction was all there was betwen them. It also makes you HAVE to have the sort of relationship where you have to be able to communicate openly about issues relating to sex.... I saw a programme about sexual problems and there was a man who was paralysed from the waist down who couldn't have sex at all...but he had an amazing relationship and a really supportive girlfriend and they found a way to be intimate and have some kind of a sex life as he could remember how he used to feel and have orgasms and he just used his imagination...and it worked it was all about being creative....I hope to someday be able to have penetrative pain free sex again...but maybe this has taught me a lot about the kind of relationships that are good and supportive and the kind of relationships that are shallow and to be avoided. I feel like an angst ridden teenager.Most people around me have been in 15 year long relationships with people they have been with since their teenage years and are now married to. And here I am still trying to puzzle out sex...because of this condition...

Oh BTW the guys in the pub were only 21 ish at the time...and it was a lot of bravado cos they were with their mates. One of them I used to go out with and we slept together so I know that when it comes to sex he isn't really like that....it's all just talk....

I've tried creams, pessaries, antibiotics, strong painkillers, antidepressants, diet (tried on and off to do the candida cleanse but it's so difficult). It got a lot better since I started treatment for pernicious anaemia and it's been suggested I make sure I get enough B1, B6 and B12 and eat lots of yoghurt plus maybe take amytriptyline or neurotonin.

After many years with recurring thrush, I started to hurt all the time and it wouldnt go away. Suffered and tried everything and finally diagnosed with vulvodynia in 2007. Was given tricyclics and it did go away after about 6 months but has recenlty returned. I have been given antidepressents again and hoping it works again (its not as bad as last time) however intersting story ladies as it WILL go away eventually and mght come back but then hopefully will go again, but my overriding concern is the underlying cause??? Interestingly I have just retired and no longer have real coffee everyday as i used to, could this be why it has come back? Is it an allergy?? I suddenly developed an allergy to nickel silver at the menopause, apparently quite common. A very clear ring around my wrist where my watch had been, itched and hurt like crazy for almost three months after the redness was gone - nothing to see but took ages to clear. Makes me think it could all be an allergic reaction and that we are not giving cessation of products enough time?? I am not happy with the vulvodynia label, it onyl means hurting vulva, we need to know why!!

Thanks Pollysobreperez,

You're right, vulvodynia just means vulval pain and finding the cause can be the key to treating it. It can be triggered by persistent yeast infections, it can sometimes be a symptom of B12 deficiency (I think) which I had, it can be a symptom of sexual trauma, or triggered by infections, cystitis or other gyno problems. I think mine was initially triggered by persistent yeast infections and then persisted because of my B12 levels or possibly because of it's emotional impact on me. Don't think it's an allergy to be honest, unless it's to something like latex in condoms or something you use down there ie douches etc which are no good for you anyway as they affect the PH balance of the vagina. With food allergies you tend to get rashes on your skin and swelling of the lips, tongue and throat...however persistent thrush can be triggered by candida (too much sugar or yeast in your diet). In some people the cause is unknown.

Hey baby girl, i know what your going thru, please dont despair. Im 32, and I started on a mission at 29 to deal with this issue, and experience awesome sex, cuz its literally one of the best things that life has to offer, I love it, and I was tired of going without it and hating it for so long. Girlfriend, My last boyfriend of 6 months ago that I was in Love with dumped me because of this issue. I know, if I had been better, been MYSELF sexually, that would not have happened. Hes a shalllow douche anyway, and there were other problems, but I would have loved to enjoy him while he was with me, but I couldnt cuz it hurt!!! I cant even have orgasms, Im in such pain with this condition. That was one of his problems with me, but whatever, he sux, anyway...
I cant even have it touched. My vag is constantly hurting, its awful. and its changed my whole ocnfidense, my whole personality, everything.
Over the years, Ive dont boric acid suppositories, and coconut oil suppositories with essential oils, and that has gotten things under control for me somewhat, so I can SOMETIMES enjoy sex. but its a full time morning noon and nite thing. Focusing on my diet. Shoving suppositories up my vag, constantly changing my underwear, cuz of the oil stains on my cloths. NOt being able to have sex spontaneously, if EVER, cuz of the pain levels. Day to day, its different everyday. Some days are better than others. I also take probiotics, and that helps alot. and I rotate the essential oils, as I get used to them after a couple months, and they dont work aswell. Its awful, and time consumning just to fell like a normal person. and yes, I relate, as I cant stand to hear about sex, or watch it on TV, or anything, as it reminds me of the years of grief and pain and loss this condition has caused me. Who knows, you mite end up lonely cuz of it, altho I doubt it, as there are good guys out there that would be happy to have you, and would work with you. The one I had was just spoiled, as he knew he could have any women he wants, and he didnt have to settle for a girl with sexual problems like me.

research younglivingessential oils. Their oils are pricey, but their combo oils are amazing. I usually buy the cheaper standard oils, from other places, but every once in a while, I will splurge and get on their website, and order their thieves, dragon time, and siez oils and put them in my frozen coconut oil suppositories. They will usually take care of the infection and pain in a couple days, and I use them after sex aswell. You must use, the sport bottle ice cube trays, melt the coco oil, and add your essences, freeze.

also hormone balancing herbs like dong quai and maca powder help alot

Thanks for replying Lavrose....and I'm sorry for what you've been through as well....it is frustrating when you can remember feeling really sexual and having a good sex life and then suddenly that is taken from you, when this first started I thought it would probably get better after a few weeks, I had no idea it was going to become a chronic problem....and it's the emotional impact.....the fact that I feel I've been cheated out of a normal part of the human experience...and that my relationships and sexual experiences haven't followed the "normal" progression....I look at other people my age who have been with their partner since their teenage years....and because of my condition I feel like I'm going through the sexual angst most people go through when they're about 16 only worse cos I have this complicated condition....they're probably at the stage where they don't even think about it anymore as it's just a taken for granted thing....I have no idea how to explain this to a guy....however I haven't lost all hope of finding love and working around it or even being cured of it eventually.....I have thought that it could be a form of angiodema as this is something I suffer with with my pernicious anaemia (at the moment I'm so ill with that I'm unable to even lead a normal life or leave the house much due to angiodema (like an allergic reaction in my tongue and mouth which can be dangerous and also makes my heart jolt around and causes severe tiredness, usually linked to allergies but you can get a chronic form related to things like pernicious anaemia which is what I have) I have heard that you can also get it in the genitals, and on a bad day it does feel like my vagina is swollen, which can be really quite painful....When my Pernicious Anaemia was being managed well with B12 injections etc and my angiodema was under control I did notice that my vulvodynia almost completely disappeared for a while....I've also heard of vulvodynia being linked to vitamin deficiencies such as B6 and B7 or to a candida overgrowth..... I've looked into every avenue with trying to get all my health problems sorted out.....the sex problem has always been a huge emotional issue for me, but now it's even worse as the rest of my illness is at present so debilitating that it is affecting EVERY part of my life....not just sex.... I'm in a bad way at the mo. Anyway, I hope you get sorted out as well, and I will look into using those oils....I've also heard of using lidocaine gel before sex....and that it supposed to be really good, so I'm also going to do that.