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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


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, do you think it's vulvodynia?

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My story, do you think it's vulvodynia?

Post  Sheilah311 on Fri Jan 20, 2012 3:42 am

First of all, I'm new. Hi Smile
I'm not quite sure what is wrong with me and my first internet community posting really didn't yield many answers so I thought I'd try this forum. I feel like every one here is pretty knowledgeable and might be able to offer some good thoughts.

On December 16th I went home early from work because I had really uncomfortable vulva burning.
I'm pretty sure I kind of experienced this when I was around 15 (my memory is horrible), which is when I first found the term vulvodynia on the internet. But it happened maybe once a week, never for more than an hour and after a couple useless visits to the doctor, it kind of just went away and hasn't really affected me much in life. & the very few times it has since then, it has been the same-going away very quickly that I don't even really remember.
I do know that it was the worst it had ever been, but I expected to go home and have it go away. It never did! I have not been 100% since then.
I've been to two doctor visits. After a week of pain I went and was told that there seemed to be nothing wrong with me, but he sent out some cultures & prescribed me lotrisone. Almost three weeks later, I was back at the doctors not feeling any better. He told me there seemed to now be white blood cells/blood in the my urine, though I still physically looked fine. I left with prescriptions for Microbid (just finished last night), Phenazopyrid (though I have NO burning while urinating) and betamethasone dipropionate cream.

I'm still about the same. Besides the medicines I briefly tried a blander diet (low oxalate kind of), going without underwear at night, washing underwear in just hot water, applying vaseline...
I do have the feeling of ALWAYS having to urinate. Even after I have just went. It doesn't burn when I go, and I don't have any trouble with that. I have noticed that it hurts more after I use the bathroom, and I've realised it is somewhat because of wiping. I've started spraying myself with water and then gently patting myself dry. Which I totally don't feel clean enough after doing, but I guess it is better then badly burning.
I feel like my urethra is burny feeling, and I don't know if that is spreading to my vulva or vice versa.
Not wiping has helped the vulva burning feeling, I don't feel like crying from the pain as much but it has not completely stopped and then just feeling my urethra burning is uncomfortable.
My vagina basically feels fine, I had no problems with tampons during my period. If I press a finger on my vulva, it burns a little but it goes away quickly and really doesn't leave me in pain.
I think that is about all I have to say!

Any suggestions? I'm going to call the doctor's office tomorrow if I get the chance to check up on my urinalysis, and I have an appointment on the 6th of February where I am going to just confuse him more! I also don't have insurance so I am limited to who I can see, and I really can't afford many more visits.

Thank you for any suggestions!

Last edited by Sheilah311 on Tue Jan 24, 2012 10:33 pm; edited 1 time in total


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some advice

Post  AroraNightfire on Sat Jan 21, 2012 8:25 pm

Whenever I use the bathroom I fill a spray bottle with cold water and after im done peeing I pour the water over my vulvar lips and vaginal opening. I cup my left hand over it with my fingers gently touching the urethra and behind the vaginal opening. I can't stand wiping myself, I feel raw after and it wont go away and I just feel miserable. Another thing that might help is a frozen gelpack. You can buy them at a pharmacy or grocery store. You refreeze them after they defrost. I place 2 papertowels around it. I squeeze it into the shape I need it to be in and I spread my vulvar lips and press it against my urethra and v opening. I keep it there for maybe 10min and then very slowly pull it off. If you don't want to try a frozen gelpack then after the cold water rinse use a fan. Lay on your bed with a fan between your legs. I hope my advice has been helpful. These are some things I do on a daily basis for releif.

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