New member from US

Hey everyone! I'm new here. I'm 21 and I've had vulvodynia for my entire life, but I was just diagnosed a few months ago (despite suffering through numerous gynecological exams from doctors who seemed more annoyed with my pain than anything, but that's a subject for another post). I've been treating it with lidocaine gel and with NSAIDS. Neither method works very well, but they definitely help, and I'm optimistic that I'll find a solution in the future.

I have fairly bad vulvodynia pain, though. Vaginal penetration is completely unthinkable for me right now, and being touched sexually is usually hard for me to handle (even on days where I use lidocaine and take NSAIDS and tylenol). I've never had a full pelvic exam because of my pain, and I've had to be sedated for minor procedures such as lynching cysts. The only thing that ever completely helped my pain was taking hydrocodone at the ER, but obviously that's not a good long-term solution... I also have chronic joint pain and chronic migraines, so I'm really sick of being in pain at this point.

Before I was diagnosed, I didn't even know that vulvodynia existed, so I'm pretty pumped that this forum is active!

PS: I'm starting a blog about having a healthy sexuality for people who can't have intercourse and people with vulvodynia. It's pretty new, but feel free to check it out: http://sexwithoutpiv.blogspot.com/ (NSFW)

Hi Coral,

Welcome! What a great blog. I never knew what PIV was!

I posted an article on here a few weeks back about outercourse, it's a much better way for girls anyway.

What are doing to heal your V? The usual stuff we talk about it is PT, meds (if you can tolerate them), therapy - that's a must, this is crazy stuff to deal with every day, good support, staying social (very tricky when you feel like cak), being kind to yourself, diet, exercise, getting your head in the right place and all the good stuff in life.

Good luck with the blog. We are on FB also, it's private and doesn't post to your wall. email Sebby if you want to come over.

Take care
Vicki

Vicki,

Thanks! The nurse practitioner I'm seeing for my vulvodynia wants me to get physical therapy eventually, but doesn't think I'm ready yet, so I'm just starting off on meds. I also made an appointment to get sex therapy, which should be interesting... I think I probably need normal therapy too with everything going on in my life, though. And I hadn't even thought about how staying social, exercising, etc could be important in healing. Thanks for the advice!

Coral

Hey Coral!

Nice to meet you.

Now my therapist is a sex therapist. My initial gyny had no idea what vulvodynia was (imagine that!!!) so said (via her receptionist) use evening primrose oil and find a sex therapist ggrrr I still scowl in her direction every time I drive past. She was a stupid bitch! But I was desperate so sent off an angry email to the sex therapist who writes for the Sunday paper and the rest is history. She is amazing and I don't think I need any other type of therapy as well. She is a psychologist who specialises in sexual problems. You couldn't get a bigger sex problem than this one. Well actually you could but this is our show

They are fairly keen on creating a sex positive world. Well that never occurred to me till this came along. It's a whole new world!

I think our challenge is to heal the whole body. I'm more inclined to look at everything I put in my body or do to it than look for another pill or potion now. It fascinates me that people on the celiac forum I'm also on whine about how they can't heal but still eat processed foods that are not completely GF in most of the world. They are in NZ but they are also full of fat and sugar. I mean if you are reading the bloody label to check for gluten check out the fat content at the same time. I was the biggest sugar addict six months ago but have realised I need to heal so it's worth the effort. Sugar is acidic and I want to stop the burn.

Do you feel like you are ready for PT? I think you also need to take control of your own path. You will end up knowing more than most of the experts eventually. When you live this you have a different perspective. There is no set formula and everyone responds differently. It's difficult to find two people with the same symptoms but we all have little pearls of wisdom. Yes I am 95

V.

Welcome Coral to the forum.

Firstly I have to say I'm really impressed with your blog and have it on my favorites

I have had some form of V since I was a teenager. I have had relationships and intercourse but it was always painful and I just thought it was anxiety. It was only when I devolped constant pain and sex became something I couldnt bear to think about that I made the link.

I am currently doing biofeedback home training as prescribed by Dr Glazer author of 'The Vulvodynia Survival Guide' and part of my treatment is to start masterbating again! so i've ordered another vibrator as my one made my clit sore lol I have to calm it down a bit I think. I was only doing it 3 times a week like prescribed!

Part of my prescription is also to start dating again. This one I have not taken up just yet as I am very scared. I keep thinking Im a women who at the moment cant have intercourse plus I have anxiety and panic attacks. Who would want me! Mum says I just focus on the negative parts and that is not all who I am. I have to agree with her but it is so hard to think positive sometimes.

So keep blogging and I'll keep reading

Hey Coral!

Youve come to the right place!!! I really have Sebby and the other ladies to thank for saving my sanity!!!

A little bit about me: Im 23, am on Elavil (Amitriptyline) 30mg (have worked my way up), will soon try dilators, and I am really looking into Physical Therapy for the pelvic floor muscles, a radical diet change (limit sugar, salt, caffeine, no alcohol/cigarettes)

Coral, there are so many ups and downs with this. But by far the best source for support and advice is right on this forum!!!

My specialist appointment at the Vulva Clinic is at the end of this month. Im sooo anxious its killing me!! Eeek.

Anyways....take care

noni