Vulvodynia and IC...and a question

Hi there! I was recently told I have vulvodynia along with IC (interstitial cystitis). It wasn't a surprise to me as I've been dealing with these symptoms since I was a little girl. But here is what I'm wondering...is vulvodynia really the right term for me?

You see, I don't actually experience pain in my vulva. I experience it inside my vagina. All the descriptions I've read of vulvodynia say its around the vagina, not inside. I experience burning, pain, and discomfort inside, especially during sex. However I don't believe it to be vaginismus because I've always been able to use tampons and can have sex easily, or start to anyway...I have no troubles with my husband getting inside. It just hurts like hell when he does.

So is that still vulvodynia? I want to be as educated as possible to help myself. Along with these, I have fibromyalgia, depression, generalized anxiety disorder, and adult ADD. With all these physical and mental ailments, I'm used to being incredibly well-read about everything and making educated choices about my challenges. So any opinions on if vulvodynia seems to be the most correct diagnoses would be helpful...I know you guys aren't doctors. But anything helps thank you!

Rachelle

Hmmm, interesting question. I've wondered in the past where the dividing line between vulvodynia and "something else" falls! Weird question but how far inside does it hurt? I do have pain round the vestibule & sometimes further out too but my sorest spot has always been about one inch inside along the back wall of my vagina. Have you had a poke about yourself to see if you can identify any specific sore areas? I only ask because when I try & have sex it feels like everything is hurting inside & it's hard to tell exactly where the pain is coming from, but when I examine myself it's actually mostly coming from that one part. Nothing further in than that actually hurts inside. I have a theory that all the pain I now experience originated & radiated out from that one spot.

If it only hurts when the sore area is touched, that would be provoked vulvodynia (as opposed to unprovoked, which is pain all the time).

I did at one point do lots of "poking around" to figure out where exact pain was...I have one spot right above the opening that is intensely painful when touched. But when I have sex that isn't what bothers me...it is the feeling in the vaginal canal. Can it be stemming from that one spot? And is that still vulvodynia?

I find the most relief when I use lidocaine *inside* my vagina, not in the vulvar area...so I know that's where most of the pain is, besides from the one spot outside. And that one spot only hurts when touched, but the inside of my vagina hurts all the time.

In all honesty, I don't know... vulvodynia is technically pain in the vulva, and the vulva is by definition the external genitalia only. However, it does seem that vulvodynia pain can spread all over the place.

Would be interesting to see if anyone else has mostly pain inside?

I know on the thread about instillagel (http://www.vulvodyniasupportforum.com/t670p15-lidocaine-beginner-question) a couple of the ladies were saying it worked best when they injected it inside.

Liz

Yes. I just posted my own story in the New Members forum. I only feel pain inside, I don't have any external symptoms, so I wasn't sure if it could still be vulvodynia?

I have pain inside!!! And I have been using lidocaine inside too. Please msg me if you see this because I'd love to chat. It seems like there were quite a few girls and women who had like my exact thing but they don't seem to come on here anymore and all the posts are over a year old

Have you been tested for strep tinkerbelle?

No I haven't, is it something that may be worth asking to be tested for?

It can cause internal burning...

My pain is unprovoked, but I can touch where I believe the pain comes from. On a clock it would be 6 and it feels like scarred tissue. On initial penetration it burns a little, but once its past that point it doesn't hurt at all. The next day or two are very painful. I have mostly itching and throbbing in the entire area includinding my clitoris.

Lonelyone mine feels a bit like scarred tissue also

I had a vaginal hysterectomy in 2001 and wasn't diagnosed with Vulvodynia until 2005. The doctor I'm seeing now is the one who thinks the instruments used during my hysterectomy caused nerve damaged and it is in that area the skin looks scarred. Makes me angry just knowing this painful condition could have been prevented.

That's terrible! Most treatments in health care seem to come with terrible side effects, or create new problems! My mum had an op to have a polip removed from her uterus and then ended up with a prolapsed disc causing terrible back and leg pain and some permanent numbness! We think it's because they moved her roughly.