Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Hi. I’ve been suffering with stabbing vaginal pains for about three years now. I’ve got good days and bad days, but I’m never pain-free. Most days I struggle to go about normal life, and there are at least two days a week where I barely manage to walk. After a long odyssey via a whole host of different specialists, I was diagnosed with essential vulvodynia earlier this year.

I’ve now tried Amitryptiline, Gabapentin, Carbamazepine and Pregabalin, and none of those have helped. I’ve read that some women benefitted from electro acupuncture, and I’d like to give that a go. Has anyone got any experience with electro acupuncture? I live in North Warwickshire, and there don’t seem to be many electro acupuncturists near me. I’d prefer to see someone who has an understanding of the condition and is interested and caring. I think it is particularly important for that kind of thing to work if I can build a rapport with the person.

I’ve had more than my share of doctors who didn’t really seem to be genuinely interested in helping me. I feel a bit like I’ve been put into the category ‘vulvodynia’ as there seemed to be no evidence of another problem (CT, MRI and bone scan didn’t show anything), but the specialists have never really asked many questions or wanted to listen to what I was trying to describe. Since I was diagnosed, I have tried to gather as much information as I could, and the more I read, the more confused I get. I keep reading that most women find that they are most comfortable when they stand or walk and that they find sitting quite painful. I’m the complete opposite. I can’t walk long distances, and most days I’m lucky if I make it round the supermarket without wanting to curl up on the floor. But sitting is no problem for me. I’ve also read that most women who suffer from vulvodynia find that their vulva is highly sensitive and that they can’t enjoy a normal sex life. I don’t find that. There seem to be so many different kinds of vulvodynia, and none of them seem to really describe my case. I’d like to know if I definitely have vulvodynia and if so, what kind. I imagine that might narrow down the list of things I need to try to find something that helps.

I’d really like to hear from other women who are going through the same thing. Is there anyone with a similar case to mine? Has anyone got experience/advise on electro acupuncture?

Thanks and take care.

Hey there,

I also struggled with "fitting in" to a support group. I have generalised unprovoked vulvodynia, I can also have sex but have constant pain. I was almost embarrassed to mention that initially.

I can now sit "almost" comfortably most of the time sometimes it's more on my tailbone - which is particularly bad for my back.

I feel like I live a double life and that's probably the same for all of us. I think we are all different and that there are so many variations, comparisons are probably a waste of energy. Vulvodynia is really a broad term for vulval pain, initially I had PGAD which also fits under that general term. People in our every days lives do not get it and a chronic pain condition can steal your soul if you let it. Finding people who understand can be a life saver.

Have you found a specialist in vulval pain or a pain clinic? I now see a sub specialist in vulval pain, she is amazing. She's from the UK - thanks for that I'm hoping she wasn't your only good one

Sorry I don't know anything about electro acupuncture. I have done the Ami and am now on Gabepentin, I'm hoping I don't need to keep progressing in the drug stakes.

My therapist said I should be honest with my friends about how bad it is getting through a day. I've tried that. It's not that they don't care, they really don't get it.

I've never heard of essential vulvodynia actually I wish I'd never heard of vulvodynia at all.

I hope you find some answers on here.

Take care, kia kaha.

welcome,

I would agree w/ Mouse. We all have different kinds of Vulvodynia. Unfortunately, the doctors don't know the cause or the cure so we are lumped into a group of women w/ Vulvar pain. Like Mouse, i am the medication regiment. However, I also see a pelvic pain specialist who is a Physical Therapist. She has determined the resting rate of the muscles in my pelvic floor and she is working w/ me on strengthening muscles in my pelvic area. I also will have a tens unit, which has electrodes that attach to areas in your body (lower back in this case)to interrupt the messages the brain gives to the nerves. there are other women on this site who have them. they can comment..but, that may help you. i have not done acupuncture. I have heard it can help some women. maybe others here have. Good luck! Stay positive...we'll figure it out. Like Mouse said, find a Pelvic Pain Specialist who knows what they are talking about.

Thank you so much for your comments, Mouse and Joules. It's helps to know that other people are going through the same experience, although it makes me angry to think that there are so many people suffering in silence every day.

I think my next priority will have to be to find a vulval pain specialist who is experienced, caring and willing to work with me. Wish me luck.