Hi/My story.

Hi everyone,
My name is Stephanie, I was diagnosed with vulvodynia this July, after 18 months of doctors and gynos 'running out of bright ideas'.
Basically I thought I'd join because as much as I love my friends, they don't have vulvodynia so they can't understand what I'm going through. I feel horrible getting annoyed at them because I know they're trying to help, and trying to cheer me up, but when I was talking to my best friend about this last week, she replied 'well, if it makes you feel any better, I'll never be having sex again either because I keep cockblocking myself with the guy I like. We should just start buying cats now.'
I know she was just trying to be funny and lighten the mood because she doesn't know what to say, but I was so frustrated. I just wanted to be like 'you ignoring the guy you like is not a real problem. It feels like there's a knife in my vagina. They're not problems that are on the same level so I basically need you to STFU.'
I just feel so frustrated and overwhelmed and alone. My first gyno had me using a cream, and it would make it a little better, but it never went away and I still couldn't use tampons. The gyno who diagnosed me in July put me on Endep (the anti-depressant) and gave me a lower dosage of cream to use everyday, and although it makes it better to the point where it's just a dull pain when I use tampons now, it still hurts when I apply the cream every night, and the thought of having sex terrifies me. Like, I can't even imagine it happening. Even getting incredibly drunk doesn't make it any better, there's this voice in the back of my head that's just there to remind me how painful it will be, like 'if it hurts when you gently apply cream, how is sex going to feel?!'
I'm really worried that when I go back to the gyno he's going to tell me that my only other option is surgery, and I'm terrified of that, but at the same time, I don't want to live like this, it's destroying me emotionally.
Anyway, I guess I just wanted to share with some girls who would 'get it', so there you go

Hi Stephanie85,

I totally understand what you're going through. I've had vulvodynia for a few years now and just about now my friends are starting to understand. All my friends would brag to me about how they had sex and then would be like "I beat you!" like it was some kind of game...whose going to loose it first. I didn't really know I had a problem down there at the time so when I finally tried to have sex I knew there was something wrong. It takes a while for people to really understand what wrong with people like us because it's something that is almost unheard of by anyone who doesn't have it. The best thing you could do is educate them on the subject to help them understand this is more than a vagina headache, this is a real chronic pain disorder.

When I found out I had this I immediately wanted surgery, just to get this all over with since I had been suffering for awhile, but I had to try everything else before surgery was an option. I did all the creams, medications, antibiotics you name it I did it...except for pelvic floor therapy. My doctor didn't think it would work for me in the long run so we skipped that and went right to surgery. I had my surgery in the beginning of July this past summer. It has helped loads with the pain, but I still have some pain when having sex, but I just started trying so it's still a work in progress.

I wouldn't let this take over my life though. You need to be strong. Don't let this get in the way of having a relationship with someone. I've been with the same guy for 5 years and he's been so understanding and good to me. I was with him before I knew I had this, but regardless he stayed with me. It's hard being in a relationship with someone when you have this problem, but it's even harder without one, you know being alone in this kind of sucks. Sometimes I feel alone even though I have someone. I've thought about what it would be like to not have a guy and try to be in a new relationship and it would be hard, but I'd try really hard to not let this get in the way of my happiness. All of us suffering with this pain deserve to be happy, especially people like us. If I was in your situation, I'd try to meet someone and just not tell them about it. Just say something like you want to take things really slow, because you've been hurt before. Then one day when you think you're ready tell them.

I hope I could help you feel a little better.
-Jen

Hi Stephanie

I know exactly what you are going through. I never told a soul about vulvadynia for years, but when I did, friends said very unhelpful things. However my current friends are now very helpful and caring about the whole thing which has been great. I have also started therapy with a psychologist and I think it is a great place to talk about the darker side of this without the possibility of being judged.

Surgery is not the only option. See a dermatologist to check if there is any type of skin condition (only see one who specialises in the vulva) see a physio about pelvic floor exercises with a dialator, biofeedback and perhaps botox maybe an option. There are different pain/nerve medications you can take as well which may work better than endep.

I don't have a partner and the though of getting out there and dating freaks me out beyond words, however going down the treatment journey can be draining on another person and so being alone can also be a good thing as it is one less thing to have to think about - the brighter side to being single

I have found allied health professionals to be far more knowledgeable and helpful than any dr or specialist so don't put all your hopes and dreams for relief in any one basket. My physio has been one of the best supports. If you see a physio make sure they specialise in pelvic pain

Good luck x

Pelvic.floor helped me until the skin became.unbearable but it was good too you should try it!

cba321 I feel exactly the same about being single and feel it is the easiest option at the moment, the upside to being dumped because of my health issues!!

Stephanie there are lots of treatments to try and working through a list is the best way to approach it until you can rule causes in or out and know what you need to do. I'm doing the physio route and haven't yet got to the pelvic floor stage (I have severe pelvic instability due to another health condition I have) but when we start my physio has said she avoids the areas that are inflamed and works further in to increase bloodflow to the area which in turn usually gets rid of the inflammation so it's worth asking a physio a few questions about how they'd treat you and whether they have treated other women with V. Mine has seen lots of women with it but sadly my pelvic floor resting tone is a new world record by the sound of things! A good book to read is "When Sex Hurts" which helps to establish cause and suitable treatment.

hello, i was diagnose recently, i am from Nicaragua and we do not have so many options here so i think you should feel a little better that at least the doctors you have there have a little more experience in this area, i have read a lot about this stuff trying to find something that could help me and that was the main reason i joined this support group, besides i needed someone to know what i was going through. I read that many of you talk about the physical therapy (sorry my english is not that good, we speak spanish in here but i try my best), and i was wondering what kind of therapy should i get, my doctor (after many many many doctors) didn't say anything about that, but i read an article that said that it helps relaxes the muscles, but how do i explain that? what kind of therapy do i ask for???? please help!!!!!

It's called pelvic.floor therapy. It works well im planning on going back after I'm healed.from.surgery. Unfortunately for me the skin became so irritated.I had to stop but it did give me relief for a little while.

How exactly is pelvic floor therapy done? And have you guys tried acupuncture? I heard it helps

jen007 wrote: I wouldn't let this take over my life though. You need to be strong. Don't let this get in the way of having a relationship with someone. I've been with the same guy for 5 years and he's been so understanding and good to me. I was with him before I knew I had this, but regardless he stayed with me. It's hard being in a relationship with someone when you have this problem, but it's even harder without one, you know being alone in this kind of sucks. Sometimes I feel alone even though I have someone. I've thought about what it would be like to not have a guy and try to be in a new relationship and it would be hard, but I'd try really hard to not let this get in the way of my happiness. All of us suffering with this pain deserve to be happy, especially people like us. If I was in your situation, I'd try to meet someone and just not tell them about it. Just say something like you want to take things really slow, because you've been hurt before. Then one day when you think you're ready tell them.
-Jen

Couldn't agree with you more, Jen. My boyfriend has been incredible with me, and we'd only met three months before I started having this problem. A good man will support you through it all. Funny enough, despite all the crap this condition has caused me in 2012, this has been the best year of my life. My boyfriend is responsible for half of that - he is the most incredible person I've ever met, but it's also my career has absolutely taken off like crazy, and I was promoted to P/T news anchor at my radio station. So even when I'm in pain, I'm so damn happy! Can't imagine if something like this had happened during a bad period of my life!

Provide floor is done thru your vagina and they stimulate the muscles there. I've tried acupuncture but it didn't work long term. Sorry I didn't get back to you sooner in recovering from surgery and forgot about this post. Hope you're feeling better!

re: Dra.Cherrym and Karen,

Pelvic floor therapy is not helpful for all kinds of vulvodynia. It depends on if it's localized or general. Is your pain mostly vaginal or does it ache deep inside?

I had several months of internal PT done, but it did not help because I don't have a problem with the muscles of the pelvic floor. Both the doctor and therapists agreed that another course of PT would not be helpful in my case.

To describe my experience on how it's was done, the therapist uses a lotion on her fingers or thumb and inserts it inside of you. She massages the internal muscles, looking for trigger points (knots in your muscles) and works to relax those. She also had me try to do it at home (although it is much more difficult doing it on yourself at the awkward angle, and your wrists and hands get tired.) If you do try it on yourself, be sure to use a hypo-allergenic NON petroleum based cream. It's also helpful to have your fingernails cut short!

sharon