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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


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.

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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.

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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.

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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!

WaahwaahUK

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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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