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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

My Story- my pain and my advice about possible options for pain

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My Story- my pain and my advice about possible options for pain

Post  jules on Thu Mar 25, 2010 1:12 am

hello, I am a 44 year old woman who was just diagnosed w/ generalized Vulvodynia on 12/31/09. For those who may not know...generalized Vulvodynia involves pain all over the Vulva. Like everyone else, I was treated for six months for yeast infections and bacterial infections I did not have. For me it only took 5 doctors to give me the correct diagnosis. Today I have seen a total of 8 doctors. My final diagnosis occurred in Rochester, MN at the Mayo Clinic. Lucky for me...I only live about an hour and 20 minutes from the Mayo. I have researched this disorder for months. I have been online, meeting with doctors and reading books. After, months of horrific burning pain to the point I couldn't sit, had to leave work early and used cold gel packs up to six times each day, I have some relief. The only medication I have been put on for this disorder is Neurontin (nerve blocker). My docs started me out at 600 mgs....I am now taking 3000 mgs. Like everyone else, I have tried every cream and ointment under the sun. ALL completely irritate my skin. I even tried natural oils etc.

I have decided I will not give up until I find more relief. I went to a holistic doctor not covered by insurance. He ran a battery of tests on me and found me to be deficient in some vitamins...and to have a low thyroid. I am giving myself vitamin B12 shots every three days, taking a number of vitamins and hoping. This doctor referred me to a allergist in LaCrosse, Wisc. The allergist is known all over. His focus is allergies and women's issues. I have read at least one research study that suggested there could be a connection between Vulvodynia and allergies. They just don't know. That appt. is in May. Both my holistic doctor and my Gyn recommend that I cut out alcohol, sugar and caffeine. My holistic doc doesn't want me to have sweetener either. At this point, i have not cut out these foods/drinks....I gotta have some fun.

In the meantime, I am trying conventional methods. I have two foam donuts I sit on. One is at work and one is at home. I ordered them online at a medical supplies store. I recommend them. They help avoid direct pressure on the Vulva that we normally get when we sit. Also, I asked my GYN for a referral to a pain clinic. I HIGHLY RECOMMEND YOU ALL GO TO A PAIN CLINIC TO MANAGE YOUR PAIN. This is a recommendation the vice president of the National Vulvodynia Association gives. That is the first place one should go. I went there to have a nerve block. Now, nerve blocks are iffy as to whether they can help take the pain away or not. My GYN told me it has helped some of her patients. The doctor I met w/ told me he has seen many women w/ Vulvodynia and that blocks can help. He also told me this is a very difficult disorder to treat. I had the first block one week ago today. I don't think I have noticed a difference. I have another block scheduled in one week for a nerve a little higher in the spine than the last. There is pain involved w/ the blocks..but, if it works it is worth it. I was told I will then likely have one in 3 months, six months and one year and maybe done. I also will be referred for physical therapy and my guess is part of that will be biofeedback which some of you may have read about in the book 'THE SURVIVAL GUIDE FOR VULVODYNIA" Oh, for those of you who have the Vestibules Vulvodynia alone...I would look into surgery. I am told there is a 93% success rate in relation to pain. I am not able to have the surgery as my pain is all over.

I will keep you updated on how the next block goes. Thanks for reading.... you are not alone and we can make it through this.


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Re: My Story- my pain and my advice about possible options for pain

Post  Sebby (Admin) on Thu Mar 25, 2010 9:27 pm

Hi and thanks for sharing your story.

I have a soft cushion that I use at work but I have thought about using a doughnut especially at home when im on the computer. I will get on Amazon and order one! When Im sitting on the sofa I tend to sit sideways so Im not putting pressure on my Vulva. Its amazing how many different ways you find to sit and then end up with a dead leg and achy back!
I was wondering about allergies and Vulvodynia as I have very senstive skin anyway. I can only use certain products on my skin and can only use non-bio washing powders. I also have to wear cotton only white knickers. I am prone to rashes and skin probelms anyway. I also suffer terribly with hayfever so am very prone to allergies.
I had not really thought much about food and drink but I have begun to try to cut down on caffine. I have had a stomach acid problem for a few months now so have to be careful what I eat anyway.
I think the pain clinic advice is very good advice, I will speak to my Gynea about that so let me know how the nerve blocker works for you.
Thank you so much for your advice it all helps and I wish you all the best in your recovery.

Sebby (Admin)

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