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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


My Story and My Questions

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My Story and My Questions

Post  junobug85 on Sun Apr 22, 2012 11:43 pm

After 4 months of being sexually active with my boyfriend I got my first UTI, followed by my first yeast infection, follow by my first bacterial vaginosis infection, and from that day on I never felt any better... I constantly thought I had a yeast and bladder infection was prescribed diflucan over and over again and popped Uristat like candy. I thought I had herpes or gonorrhea but after dozens of OBGYN's telling me there was nothing wrong with me, my boyfriend was probably well endowed, I eating poorly, not exercising enough or my pants were too tight, I saw a Uro-gynecologist who told me it sounded like I had vulvadynia. This was the best news of my life to find out that someone believed me and that there was help and I wasn't crazy. I saw Dr. Schulze in north NJ who was amazing and for the past 4 months, I have religiously been on a low oxidant diet (which is challenging!), I take xanex, perideum, and use estrogen cream. All these treatments have helped significantly, but I still have soreness, sting, pain and bladder infection symptoms. I am considering the surgery, but Dr. Schulze does not take my insurance so I need to look into other doctors. My first question is does any one have any recommendations because I can't find any other doctors that even believe in this condition. My second question is what are my chances of the surgery not working? I have had vulvadynia for 5 years now and I have read that the longer you wait, the more chance you have of the surgery not working.

junobug85

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Re: My Story and My Questions

Post  LizLemonny on Sun Apr 29, 2012 8:53 am

Why are the doctors still so ignorant even specialists - it is well documented now. I remember all those diagnoses from 1985-90 when I was trying to find out what was wrong with me. Do you have the pain constantly (vulvodynia) or just during and after intercourse or friction such as running (vestibulodynia).

LizLemonny

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Re: My Story and My Questions

Post  junobug85 on Mon Apr 30, 2012 12:26 am

thank you for responding! This past November my symptoms seemed to be around the clock, but with the estrogen cream and xanex the pain and discomfort comes and goes and is usually triggered by friction. I have found some doctors in my area that take my insurance and believe in vulvadynia so I am very hopeful.

junobug85

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Re: My Story and My Questions

Post  LizLemonny on Thu May 10, 2012 4:12 pm

Yes - once it is triggered it does take a while to settle down. It makes sense to use the creams before going for walks and certainly before sex, so that you don't get this problem or you lessen it as much as possible. It sometimes feels to me as though the pain creates more pain. Lidocaine is good. I haven't tried estrogen but I have been thinking of trying it.

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Re: My Story and My Questions

Post  junobug85 on Thu May 10, 2012 5:29 pm

I feel like I constantly am swollen and have an infection. The glands around my bladder feel swollen as well and make me feel like I constantly have to pee. It is challenging to fall asleep and I wake up a lot during the night feeling like I am going to wet the bed. It is really depressing... I just want to feel normal Sad My other problem is is that when my symptoms really flair up, I feel it in all parts of my private area, not only my vestibular glands, like a fire..... it burns a lot. Sometimes I test for Yeast Infections and I have tested for BV 3 times in 5 years, but most of the time I do not have an infection. When this happens, the creams, xanax and peridium do not really help. I just ordered folic acid and coconut oil tablets because one person in this blog said they help.

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