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» Lichen Sclerosus
Yesterday at 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

Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris


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 …

Comments: 4

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

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

My confusing and emotional journey - long and detailed teenage sexual history included

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My confusing and emotional journey - long and detailed teenage sexual history included

Post  jjr23 on Wed Aug 24, 2016 7:15 pm

I'm 23 years old and have recently joined this forum. I should have joined it sooner. I have been suffering from vulvodynia from the first time I was sexually active, but I did not get formally diagnosed until I saw my gynecologist 3 years ago. I had a vestibulectomy last week and it was while I was researching the surgery recovery experiences that I found this forum.

I remember a boy asking me when I was 13 if I had ever been fingered. I didn't even know what he meant. I went home, googled it, and then tried sticking a finger in. It wasn't pleasant, but at that time I can't remember it being excruciating either. It was just odd, and I wondered why that was meant to be part of a masturbation method.

I was 14 when I was first fingered by a guy. I did it out of pressure and it was excruciatingly painful - a burning and sharp cutting pain. I remember squealing out loud and feeling really abnormal. I would have been really dry down there too which would have added to the pain. From that moment I wondered if there was something wrong with me. I think that's where some of my fear began. This is where I started to associate the insertion of things with pain and fear of intimacy. My two best friends at the time would rave about how good it felt to be fingered. I felt different but I knew I was still really young and that maybe things would be different when I'm actually turned on and in a situation where I want to do it.

A few months later I was fingered by a guy who I liked and trusted. He had a lot more experience with girls so I figured he would have a far better idea of what he was doing, so maybe this time it would be better, but it was still unpleasant. I could tolerate the pain for a couple of minutes. I kept telling myself that I just must be really small and tight down there.

When I was 15 I was going out with a guy who was 17. We fooled around and did everything except for sex. I told him I preferred rubbing of the clitoris rather than being fingered. But he rubbed me with a lot of pressure which I didn't like. I think it was impossible for me to relax and enjoy anything (even rubbing) because I was so fearful that he may go near the skin that was painful. I gave him (and other guys I dated) direction in terms of being gentle with the rubbing. But they made me feel silly with the light pressure I was asking for. This just made my anxiety worse. I grew very self-conscious in sexual situations. I felt like my vagina was just not normal, like it wasn't functioning or responding how it should. I never felt properly aroused when I was with a guy. I could only ever achieve proper arousal when I was on my own, and that didn't even happen until the late age of 16.

I was 16 when I had my first orgasm. I had tried to masturbate a couple of times before that but my body didn't really respond to any touch. I could only assume that my early sexual experience had prevented me to associate genital touch with pleasure.

I kind of blame myself for some of those early experiences where I let a guy touch me when I knew I wasn't ready, wasn't aroused and didn't really want to do it. I succumbed to the pressure and wanting to feel normal. Everyone else was enjoying it so I wanted to as well. I wish I had been more assertive in in touch with what I really wanted rather than what the guys wanted.

After a few bad experiences, I swore to stay away from guys unless I really liked them and felt comfortable and was doing things because I wanted to. I didn't have many (if any) sexual encounters when I was 16 or 17.

I met my first proper boyfriend when I was 18. I fell in love pretty quickly and thought he was the perfect guy to lose my virginity to. A part of me was fearful of the pain. I had tried using a tampon only a couple of months earlier and even that was unbearable. It was impossible for us to have sex. I think he went halfway in a few times. We used lots of lube and took it slow. I remember feeling sharp burning and cutting pain during and after. I was red and inflamed and felt that burning, like acid has been poured on me, for days after. I soon developed a yeast infection. I'm not sure if our attempt at sex happened on the same night as going in his spa but I do remember getting a really bad yeast infection after using his spa one night. If our attempt at sex was on this same night then no wonder I was in so much pain afterwards.

My boyfriend was very aware and critical of my pain. He had had sex with a few other girls and he knew my pain wasn't normal. After trying for sex a few more times over the following weeks he declared that there was something physically wrong with me and that I needed to see a doctor. I hated how he said that. I knew he was probably right but having someone else say it to your face is upsetting. He wasn't very understanding or sympathetic about it. As the relationship progressed he made me feel REALLY guilty about it. He made me feel bad about not being able to have sex - something which I had NO control over.

The first doctor I went to said it was all in my head. She looked at me down there and said she couldn't see any abnormalities. I was tested was infections, STI's, UTI etc. I was in the clear. She referred me to a sex therapist to help me deal with my psychological barriers. A few months went by and I had a few sessions with the therapist. My boyfriend came along to a couple of them. However he wasn't supportive of this treatment. He insisted that it was a physical issue. His building resentment towards me was tearing us apart. We broke up soon after. I fell out of love with him because he was so sexually selfish. He would complain that he was "trapped" - trapped because he was in love with a girl that he couldn't have sex with. This was NOTHING compared to how I was feeling. He was complaining because he couldn't have sex with his girlfriend. What about me? What about what I am experiencing? I couldn't experience ANY sexual pleasure with another person. I was SO frustrated with him. He thought he had a better reason to resent me and complain. For this I will never forgive him. He didn't understand me at all. I broke up with him and am so glad I did. He made me so self-conscious and anxious about anything sexually related.

By this stage of the story I am 19 years old, and still seeing the sex therapist, who I am now growing impatient with. I began dating a new guy shortly after but we only had sex once during the dating period, and he was half hard half soft, and we were both very drunk, so I don't remember much pain. I didn't get involved sexually with many guys. If I did I wouldn't be sober. It would be far to painful to experience sober. I couldn't live like this. I had to find out what was causing this pain. I went back to my doctor. She reminded me that it was nothing physical, as she had examined me down there. She suggested that I get an internal ultrasound to check my ovaries and insides (and that was painful, they basically insert an instrument that resembles a dildo inside me.. and I had barely had proper sex by this stage).

Finally she suggested that I see a gynecologist to put my mind and rest and rule out any physical conditions as the source of the pain. And wow was she wrong. I was on a waiting list to see a gynecologist who she regards as one of the best in the country and who's specialty area is vulva pain. I was excited to finally get an expert opinion rather than just a GP.

After months of being on a waiting list, I had my appointment with my gynecologist in September 2013. By doing the Q-tip test he found my painful areas immediately without even asking me any questions as to where exactly the pain was. I was amazed. He explained to me my condition - vulvodynia. It was the first I had really heard of it. I had probably come across it on the internet but it was an unrecognisable term to me before being diagnosed with it. My first reaction was relief. Now that it was confirmed that my problem was physical I could now start a course of treatment to resolve the pain. But I was unaware of the complexity of the condition. It wasn't until that I left his office to get my prescription for my cream to use on the painful areas did I realised what this meant for my sexual life and potentially my future. I began to bawl my eyes out. I knew I had a long painful journey ahead of me. Although it was comforting to have a medical name for my issues and a treatment plan in place, a part of me knew it wasn't going to be easy. My gyno was honest about the success rates of the cream. He had explained that other treatment may involve medication, physical therapy, and/or surgery. I remember freaking out when he mentioned surgery. I didn't want to get to the point where that was my only option.

Over the next couple of years, and frustration with the cream, a million thoughts would run through my head. How would I explain this to guys? Would it be fair to date a guy if sex is likely to be painful or even impossible? What guy would want to date me if I can't have sex? What's the point in dating me if I can't offer sex? These thoughts would make me very upset. Especially when I started to date a new guy.

There were a few times where the same thing happened: I would start dating a guy, and then when things got intimate I would make sure I wasn't sober so that I could tolerate the pain (like the night would start out at a bar on a date, and then we would both drink a bit and then I would feel less anxious about the pain and be more willing to have sex). I was still in a bit of denial at this stage. Like I thought the cream might have made things less painful, or maybe I just needed to be stretched a bit more etc. It felt better to try than to totally avoid sex. It made me feel less abnormal if I was having sex, even if that meant unpleasurable sex.

Some guys could sense that I wasn't enjoying it, but most of them didn't notice it and didn't question anything. A lot of them liked the experience and wanted to have sex with me again, but I couldn't bring myself to put myself through it more times. I knew they would soon realise there was something wrong with me, especially if we started dating seriously and we were sober and were in a non-date setting. And I wasn't ready to open up about it yet either. I still felt ashamed by it and I think my ex-boyfriend has played a large role in that.

When I was 21 (a couple of years ago) I actually got into a relationship, ironically straight after I swore off them. I ended up opening up to him about everything and he was really understanding! We were very intimate in a lot of other ways. We did have sex a few times but he was huge, so it did hurt. The pain afterwards was usually worse than the pain during. I used plenty of lube (I use olive oil as recommended by my gyno). Although I felt more relaxed and aroused with this guy, I was never able to orgasm in front of him.

During this time, I was using the cream on and off. I didn't feel like it was doing anything. Looking back, I should have been more proactive in my research, and I should have explored other treatment options sooner. My issue was never a priority. I think thats because I didn't have the courage to face it. It was just easier to deny it and push it to the back of my mind. And it was easy to do that when I wasn't sexually active or in a relationship. But I think my second relationship did suffer because of this. I was very aware at how important sex is for bonding and connection. And without it, the chemistry can die. And that's what happened with this relationship. The chemistry fizzled out. I will never know if it was because of my issue or not. He said that it had nothing to do with that and that I was a great girlfriend. And he seemed very genuine when he said this, and a part of me believes him, because I know that people can fall out of love for many other reasons, but a part of me blames myself and my vuvlodynia. Maybe if I was normal down there and we had a great sex life he wouldn't have fallen out of love with me because everything would have been a lot more exciting.

After we broke up I went back to see my gyno. I was given medication called Endep. Mum was very hesitant for me to go on medication that causes drowsiness etc. I didn't really see how medication could resolve something that was damaged nerve endings on skin. I had not faith in any of these remedies. He mentioned physical therapy but I was even critical about the effectiveness of that. I had grown so frustrated with all my sexual history that I lost faith in anything. I've read some posts on here and I know a lot of you have been through far more than me in terms of the amount of doctors you've seen and the different types of treatments you've tried.

Earlier this year I began dating this much older guy. Before that I had pushed my issue to the back of my head and ignored it and tried to forget about it. But then I started to like this guy and one thing lead to another. The first time we had sex it was so painful. This experience brought back all the emotional pain and frustration. Oh fuck - I'm just going to hurt myself AGAIN by getting involved with a guy and then letting him down. I'm just letting myself down by not resolving this. I'm just going to go on this same merry-go-round with every new guy. I will never be happy if I live like this. I will never be in a healthy relationship. I will never enjoy sex. No guy will want to stay with me. I will never get married. I will never have kids. I will be lonely, frustrated and depressed. I CANNOT LET THIS HAPPEN. I REFUSE TO ALLOW THIS TO HAPPEN. I DO NOT DESERVE THIS. I DO NOT DESERVE TO LIVE LIKE THIS. I AM FIXING THIS RIGHT NOW. I AM GETTING THE SURGERY. I HAVE NO MORE TIME TO WASTE. I DESERVE TO ENJOY SEXUAL ACTIVITIES, BECAUSE IF I CAN'T, THEN HOW WILL I ACCEPT MYSELF AND MY LIFE?

After having sex a couple of times with this guy, I thought about telling him, as I thought there was potential for a serious relationship between us. But I was so scared to tell him. I felt like I would be imposing my issue onto him and ruining any chance of a normal relationship. I felt selfish and guilty to do that to someone. It wasn't fair for the guy. Sex is such an important ingredient for a healthy and strong relationship. It's more than just pleasure. It creates intimacy and fuels chemistry. I really believe that a relationship cannot survive without sex. I'm sorry to anyone that disagrees. I wish I could disagree to that statement too, because its so hard for me to admit to my belief that I agree to that. It is a hard truth that I still cannot face. I cry every time I think about it.

As I had predicted, the chemistry between us died pretty quickly. I think he felt a sense of distance between us, which is understandable, as I was keeping something to myself - my issue. And I think he could sense that I wasn't a sexually comfortable person.

A few weeks before we ended it I remember having all these thoughts (those in capital letters above) and knew I had to take action. I booked an appointment with my gyno and was ready to request surgery. My situation with the guy at the time had nothing to do with it. I needed to do this for myself.

I know it sounds rushed. You guys are probably thinking that surgery is a last resort and that I should try everything else first. And you're right. It makes sense to try everything else before such a drastic treatment option. But as I said before, I grew intensely impatient and frustrated and didn't want to spend money and time on things that might help with the pain. I understand that surgery isn't a quick fix. I understand that it isn't always successful and that doesn't ensure complete pain-free sex. But it seemed like the most effective treatment option to turn to and I was mentally prepared for it.

The few weeks leading up to that appointment I was severely depressed. My mind was consumed with negative thoughts. I couldn't help but think about how my life would turn out if I could never find a solution. Depressing thoughts such as being lonely and single forever frequently passed through my mind. These thoughts with the added realisation that no one would every understand why I was single made it evben worse. I felt so alone. At least with other illnesses they are made aware of and talked about. But this issue was different. It would be like suffering in silence. Having a sort of disability that no one could see. A disability that affects the quality of life just as much as any other disability, if not more.

I thought I would have to fight to convince my gyno to operate on me but he was surprisingly supportive of my idea for surgery. Although I had only tried cream and oral medication by this stage, he said that surgery was a very suitable option for me considering my personal circumstances. I'm not sure what he meant by this but after some research I found that women with primary provoked vulvodynia respond best to surgery - and that's what I have/had. My gyno has performed hundreds of these surgeries and told me the success rates. That appointment was in July, and I booked my surgery for August (last week).

Having a surgery date booked made me feel uplifted. I felt so relieved after leaving that appointment with a surgery date booked. I was one (big) step closer to possibly resolving this is sue once and for all. This could be life changing. I had something to look forward to. I had hope. I had an action plan in place.

I had a vulva vestibulectomy last week. I have mixed emotions. I'm a very impatient and anxious person so you can only imagine what I'm experiencing. I'm in quite a lot of discomfort and pain at the moment, which is normal. I saw my gyno/surgeon earlier this week for a one-week check up and he said everything looks like it healing normally and that the pain I'm experiencing is normal.

Who ever is reading this and has read this entire post my heart goes out to you and whatever you are currently experiencing. Each woman who is dealing with this issue goes through their own unique journey. This is mine so far and I am happy to share it with you all if it means making you feel like you are not alone and there is help out there.

Feel free to message me about anything. If you have any questions or just want to chat, I am here.



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Re: My confusing and emotional journey - long and detailed teenage sexual history included

Post  emalita on Fri Aug 26, 2016 4:14 pm

I'm sorry that you're going through this and that it seems to have taken a huge toll on you emotionally.

I promise you that there is far more to life, love, and relationships than sex, and intimacy is not defined by penatrative sex.

I hope you take care of YOU first. Be kind to yourself. Try to remember that the past cannot be changed and that you can't move forward while looking behind you. I believe that most women, including myself, have at least one past sexual experience that they're not proud of...whether that was due to the partner or the circumstance.

I hope surgery will be a success for you and you heal quickly Smile


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