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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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

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

Post  min77 on Fri Oct 15, 2010 7:54 pm

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.

min77

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

Post  Mouse on Sat Oct 16, 2010 2:54 am

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 Very Happy

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.

Mouse

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

Post  jules on Sun Oct 17, 2010 3:26 pm

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.

jules

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

Post  min77 on Wed Oct 20, 2010 11:29 am

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.

min77

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

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