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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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

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: 5

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


I am new, want to share my story, it may help some of you

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I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 on Mon Oct 26, 2015 4:27 am

Hi, my name is Michelle and I'm 43. My vulvar pain began nearly 2 years ago: cutting, searing, stabbing pains, unable to sit longer than 10 minutes without a donut cushion, mild pain after sex.

I went to an OB/GYN, checked for a UTI (negative), was told I had a mild prolapsed bladder, and a yeast infection. I treated myself for the yeast, but continued to have pain. I went back and asked for a complete Pap smear, and labs to check for all STD's (negative and Pap was fine). I had also had the Mirena for 4 years and requested it be removed in case that had something to do with it. The doc removed it, and after 2 of the worst periods ever, I had a new one put back in. It made no difference in the pain. That particular OB doc said he could do nothing more for me.

I scoured the Internet for practitioners who specialized in vulvodynia and chose a women's' health clinic that treated a variety of disorders. The doctor I established with there suggested pudendal neuralgia. Thus began a series of MRI's and consultations with an orthopedic specialist and a neurologist. I had some mild degeneration in my lumbar spine, all the others were normal. My blood was tested for many neurological conditions and a hormone panel was done as well. I was not in menopause and other than my pain, was fit as a fiddle. I was also tested for interstitial cystitis (neg) and a transvaginal ultrasound was normal.

My vulvodynia specialist had performed several Q tip tests and suspected possible vesibulitis along with vulvar pain and referred pain in my back. His suggested treatment was injections in my vulva to reduce pain.

The day I was to start injections, however, my husband accompanied me and asked my doctor if my constant arousal was due to this. I hadn't told the doctor about that, it was embarrassing. Then he said my problems were beyond his expertise as he determined I had persistent genital arousal disorder (PGAD) as well. He told me about Dr. Irwin Goldstein in San Diego, that he was a top expert in America and wanted me to be evaluated by him.

We live in Missouri, but with my parents' financial assistance, my husband and I flew there last week for a consultation. We met with a sex therapist first, then a pelvic floor therapist, then Dr. Goldstein, who co-authored the book 'When Sex Hurts'. After a very painful exam and vulvoscopy, I am now diagnosed with 'congenital neuroproliferative vestibulodynia'.

I am preparing to embark on hormonal treatment and correction and, after 6 months if I have little relief, I will have surgery to remove my vestibule. I have decided I can live with the PGAD, as I have since the age of 5.

My preference is surgery, but Dr. Goldstein begins the more conservative approach instead. At times, before being diagnosed, I suffered bouts of depression and even suicidal ideation. Dr. Goldstein is very skilled and compassionate, with a long list of credentials.

I have agreed to speak at a conference in the spring made up of medical professionals, to share my condition(s) to educate. It helps that I'm an RN myself. I left no stone uncovered. My advice is to seek out specialists, if your finances allow it. And to never give up.

I'm glad I found this forum and I'm sure I will have many questions as I start my treatments.

God bless!

HARDROCKMOM72

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Re: I am new, want to share my story, it may help some of you

Post  PainBlogger on Mon Oct 26, 2015 5:18 pm

Good luck to you and thanks for sharing your story. I agree with your advice to seek out specialists whenever finances allow for it and to never give up. I'm sure that there are effective treatments out there for many sufferers, but finding the right treatment can be a real marathon.

PainBlogger

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Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK on Tue Oct 27, 2015 7:33 pm

It is so good to hear a positive story. Thank you for taking the time to write it here. May I ask what hormonal treatment you are having? I have suspected pudendal nerve issues but I also can't help feeling there is a hormone issue too.... My GP has only done a blood test to check my oestrogen which was apparently fine. Anyway best of luck with your recovery! x

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Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 on Tue Oct 27, 2015 9:54 pm

Weekly testosterone injections, a compounded estrogen/testosterone cream directly to my vagina, potentially both oral estrogen/progesterone combination in a low dose so as not to increase risk of cancer.

But for now, testosterone injections and hormone levels every 10 days for a month, to determine whether or not I need the other oral hormones. But the injections and cream always.

HARDROCKMOM72

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Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK on Wed Oct 28, 2015 9:07 am

Have they determined you have a hormone imbalance then? If so, how was it diagnosed? Excuse my ignorance, I'm often walking in the dark with this condition! Wishing you lots of luck moving forward with your treatment.

WaahwaahUK

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Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 on Thu Oct 29, 2015 8:28 pm

A random hormone panel showed everything in normal range. Except virtually zero testosterone. So I start testosterone injections today, then he's drawing panels on me every 10 days for a month to see where I am in my cycle. I typically don't have periods because I have the Mirena, and I'm not menopausal. After reviewing my labs, he will determine the dosage of hormones I need.

HARDROCKMOM72

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Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 on Thu Oct 29, 2015 8:30 pm

And, ask any questions. If I can help even one gal to not have to suffer more than a year to the extent that I have, then it's a good feeling, a purpose.

HARDROCKMOM72

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Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK on Thu Oct 29, 2015 10:08 pm

Thank you. My GP only checked my oestrogen I think. He said I'm too young (I'm mid thirties) to have a hormone problem which I sort of felt fobbed off by. My gut feeling is there's more than one factor to my pain, but it does flare at certain points in my cycle. So I feel there may be a hormone issue as well as nerve issues (which I'm seeing an osteopath for). When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

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Re: I am new, want to share my story, it may help some of you

Post  PainBlogger on Fri Oct 30, 2015 11:56 am

WaahwaahUK wrote:When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

On the subjected of perplexed GPs: my consultant told me that about 8% of women have vulvodynia. Now, I'm not sure if he meant at some point in their lifetime or that at any one time, 8% of the female population is experiencing vulval pain. Either way, that's a lot of women. GPs really shouldn't be so unknowledgeable about the condition, should they? I'm not blaming them - I know they have to know a fair bit about thousands of conditions so can't be experts in everything (that's what consultants are for) - but one would think they should encounter women with vulvodynia fairly often, and, if so, should know more than what the average GP seems to!

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Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK on Fri Oct 30, 2015 7:06 pm

Yep I agree PainBlogger! Two gynaecologists so far didn't seem to have a clue either which is so disheartening. I don't understand this all too common attitude of - well you don't fit the box, I don't know what to do with you, you're not dying as far as I can tell, so off you go!! Meanwhile many of us are left in pain and researching our own way around it!

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Re: I am new, want to share my story, it may help some of you

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