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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 …

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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 …

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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 …

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So thankful to have found this!

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So thankful to have found this!

Post  Ellie on Wed Dec 08, 2010 7:10 am

Hello! I am glad to have found this and I will be posting my story later, but reading through the other stories was quite refreshing and I am glad to have this opportunity to discuss with others about this within the forum. I have been suffering from this for almost 2 years now and only myself and my boyfriend know. It is really hard and upsetting when you have no one to talk to or understand what you are going through. Especially doctors! I just recently went to a different doctor (she actually did one of the pap smears I got out of the many within the last year) and she actually sat and listened and I searched the internet and found Vulvodynia about a month prior. I told her about it and after the exam she determined that I indeed had it.

She told me to get Tea tree oil ( I believe that is what it was called) and to call her in a month. If it is still bad she is going to send me down to a specialist in Saint Paul, Minnesota. ( I live in Saint Cloud, MN). So wish me good luck and I do with all of you! I am happy to meet you all! Very Happy
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Re: So thankful to have found this!

Post  Sarah001 on Wed Dec 08, 2010 2:33 pm

Hi Ellie and welcome to the forum. Just a quick word of caution though, tea tree oil can be a real skin irritant so be careful with it!
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Re: So thankful to have found this!

Post  Ellie on Wed Dec 08, 2010 5:32 pm

Thanks Sarah, and actually what does the oil actually help? My doctor didn't really further explain it, she just told me to check it out =O
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Re: So thankful to have found this!

Post  Sarah001 on Wed Dec 08, 2010 8:34 pm

Tea Tree oil is supposed to be anti-fungal and anti-bacterial so it will only help if you have a yeast or bacterial infection but to be diagnosed with vulvodynia those things should be ruled out first with swabs so as far as being a vulvodynia treatment it isn't going to help. It is however very irritating to the skin and I don't think I'd put it on my lady bits! Have you had infections ruled out? If not you can be tested for everything at a GU clinic, they're not just for STIs these days and they will be able to tell you if you have a yeast or bacterial infection.
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Re: So thankful to have found this!

Post  Ellie on Thu Dec 09, 2010 1:36 am

That's interesting about that oil then. I have been tested for yeast, bacterial and urine infections at least once a week when I first was getting symptoms about a year and half ago. More recently I have been getting tested but it has been coming back fine with no infection, but I still feel irritated. She did do a swab and would know in about a week, but it will prob come back negative like it has lately. That is strange though, when she had my test results right there describing what I just told you.
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Re: So thankful to have found this!

Post  Sarah001 on Thu Dec 09, 2010 2:27 pm

It's typical behaviour from the medical profession unfortunately, they don't know what it is so they tell you to use things for yeast etc. A nurse at our practice told me to use Canesten cream which was a terrible idea because it burnt really badly and as I ddn't have a yeast infection was just making things worse. This is why us ladies have to research as much as we can and know our stuff when we see people so we don't get sent on wild goose chases.

Do you have other symptoms? Urinary symptoms or any other conditions?
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Re: So thankful to have found this!

Post  Sebby (Admin) on Thu Dec 09, 2010 7:46 pm


Hi Ellie and welcome..I do second Sarah's words of caution with the tea tree oil..I am actually quite allergic to it! I cannot use it anywhere..used it on my face once and was itchy and stinging! I would not recommend it at all for the vulval area!

I have not found creams to be soothing and find its best for me to use nothing down there! I only rinse the vulval area with water and use no soap or creams at all.

I would also recommmend not wearing knickers when you can as it prevents them from rubbing and its good to get some air to the area!

I would recommend asking to see a vulva specialist..ask your dr to refer you to a vulval clinic as well as a pain clinic to look at controlling the pain

Good luck and keep posting

Sebby xxx
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Re: So thankful to have found this!

Post  Ellie on Sat Dec 11, 2010 7:52 am

I appreciate your warnings about it! I have found also that creams haven't really helped much down there and have been more bothersome. Sad The only meds I use from time to time now is Boric Acid that was prescribed by my Urologist. I have taken it after sex to help prevent any further pain ( itching, soreness, causing an infection). Lately it has been sharp pain around the entrance and just hurting in general on and off. I might take your advice about no underwear though because I have noticed it to be a bother at times >.<

Oh and my doctor said if I'm still hurting (which we all know I will be) at the end of this month she will refer me to a vulval specialist. I am very excited to actually see someone that might point me in the right direction. Smile
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Re: So thankful to have found this!

Post  jules on Sat Dec 11, 2010 6:16 pm

Ellie,

Welcome. I live in Minnesota. I would love to talk w/ you about the docs here (St. Paul) and meds. I sent you a private message w/ my e-mail address. Just look at messages. Let me know if you can't get in. I have seen doctors in St. Paul.

Jules

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Looking for MN docor

Post  cosette51 on Sat Apr 09, 2011 7:28 pm

Hi!

Your post intrigued me. I've been suffering for 15 years jumping from specialist to specialist with no success, with each doctor managing to make things worse. I am in dire need of finding an amazing specialist. I live in St. Paul MN. Do you have someone you can recommend.

I'm a 30 year old who is now at the point of afraid of dating because it causes too much anxiety due to past relationships. I'm willing to try anything. I've done 15 different creams and oils, acupuncture, nerve pain medications that have made my whole mind numb, allergy testing... I need someone who is willing to be more aggressive who won't just stick me on anti-anxiety meds for 2 years telling me each month that we should wait another month to see if it starts to help. I want a family and children and my symptoms are so bad that sex is not a possibility in my life.

ANY HELP would be appreciated!!!!!

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Re: So thankful to have found this!

Post  noni on Sun Apr 10, 2011 12:11 am

Hey Cosette

I havent seen Ellie post here in a while....maybe if Sebby could give you her e-mail you would have better luck getting through to her.

Good luck

noni
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Re: So thankful to have found this!

Post  Sebby (Admin) on Mon Apr 11, 2011 7:18 pm


Hi there

In case Ellie has opted out of recieving emails when posts are replied to I have emailed her myself to let her know

I can't give out any members email addresses without their permisson

I will let you know if I get a reply

I will also contact Jules as she is on our Facebook group and she has also seen drs in St Pauls


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Re: So thankful to have found this!

Post  jules on Tue Apr 12, 2011 1:24 am

cosette51

hello, Sebby got a hold of me via facebook. i live in St. Paul and of course, have done EVERYTHING you have. there is one doctor at the University of MN. Women's health clinic who has experience in treating women w/ V. Her name is Dr. Jane Van Dis. It took me two months to get in w/ her. She was OK. I recently saw a doctor named Dr. Feldman at the U of M sexual health center. I did need a referral. I liked her a lot better than Dr. Van dis. I go to MAPS pain clinic in Midway. I have had the most luck there. I am on a few diff. meds that help w/. the pain. I also will be going back to a physical therapist at Sister Kinney in Bandana Sq. I'm going to send you my e-mail in your box so we can talk further. I'd love to chat.

jules

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Re: So thankful to have found this!

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