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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 …

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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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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, …

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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 …

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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 …

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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 …

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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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Found the cure to my vulvodynia

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Found the cure to my vulvodynia

Post  anonymous12345 on Mon Apr 01, 2013 3:57 am

Hi everyone,
First of all, I wanted to express my sympathies with everyone posting on the forum. Vulvodynia takes a huge strain on your life and can change you as a person. I am 21 years old and have been dealing with what was diagnosed as "vulvodynia" for 7 months (I'd like to stress that this is not really a diagnosis but a catch-all term for vulvar pain when doctors can't figure out the cause or don't care to help you figure out the cause. I personally believe there is an underlying cause for everyone's vulvodynia). What a journey it has been. Going from doctor to doctor to find an answer. Interestingly enough, the doctor who found the solution wasn't a gynecologist at all... But a gastroenterologist. She suggested many things, one of them being a milk allergy or lactose intolerance. She had me eliminate dairy from my diet completely. Check all labels because milk/casein/whey/lactose is hidden in many foods that you would never expect! Within 48 hours I noticed a HUGE improvement. And since then, whereas most days I feel 20%, nowadays I feel 90%-100%. I wanted to share my story with everyone, in hopes that I could help another woman escape the misery of the burning, aching, and stinging of vulvodynia. Good luck to everyone, you are in my prayers.


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Re: Found the cure to my vulvodynia

Post  Loulou on Mon Apr 29, 2013 7:02 pm

Hi anonymous12345 - so pleased you found your cure! Isn't vulvodynia a wierd thing. So many different causes. Thanks for sharing your story - it all adds to our knowledge!


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Post  Annie82 on Tue Apr 30, 2013 8:36 am

Hi anonymous12345, what symptoms did you experience? How did it start?


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found the cure

Post  BeeJay on Fri May 03, 2013 1:00 am

I am so interested to hear about the views of your gastroenterologist. I too am lactose intolerant, and have always suspected there was a connection between what I eat, and how I feel down there. Do you take any type of lactase enzymes as suppliments?


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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Mon May 13, 2013 6:43 pm

Hi everyone! Thanks for responding.
Loulou, I was happy to share my story! I am blessed that it is now a happy one.
Annie82, I woke up on my 21st birthday with a terrible burning sensation on my vulva area and my anal area. The burning was very intense. What a way to start your birthday! Throughout the following months, I would get fissures on my vulva and anus and they would take a long time to heal. I would also have this deep burning feeling that would come and go for days at a time. Went from doctor to doctor for 7 months (4 gynocologists, 1 dermatologist) and had no definite answers. Was misdiagnosed many times. One gynocologist tried to tell me I probably had herpes even though my blood tests were all negative, all swabs were negative, and the only partner I ever had was negative. The dermatologist told me I probably had lichen sclerosus after a skin biopsy showing minimal scarring. What I found was that many doctors give you their answer so you will stop coming back, but I wasn't going to give up. So I went to a GI doctor, who I would declare a saint if I could. I seriously owe my happiness to her. I am not bashing all doctors, my dad is one, but I did learn that not all doctors provide the best care. I feel 100% every day, except for the 2 days after my period... The deep burning comes back! But then goes right back away. If this is my only problem for the rest of my life, I consider myself very lucky!
Beejay, the only time I take the enzymes is if I'm eating out and am not 100% sure what is in my food. I also take a daily probiotic. What is strange is that I do not show any other symptoms of lactose intolerance... No stomach ache, gas, diarrhea. Only pain down there!
I am not a religious person, but I pray every night to give thanks that I am now healthy. I also pray for other women to find their cures. Best of luck to you three!


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Post  allforone on Tue May 14, 2013 1:33 am

So glad to hear of your success............I too have been battling this issue for months......I was actually wondering if it could be something I'm eating or drinking. I drink very little milk, but I know there is milk in things you can't imagine.
My question to you is.............did you have any other burning besides your vulva and anus? I have it bad there, however it is also in other areas of my body too.........sometimes legs, feet, arms, lips and tongue. Drives me crazy!!!
It all started in the vulva though and gradually radiated to other areas........I'm beside myself and have went to all kinds of doctors also. Very aggravating!! Ugh!


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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Tue May 14, 2013 6:30 pm

allforone, no I did not experience symptoms elsewhere. My symptoms were all limited to my underwear area. It wasn't just the milk I was drinking (I wasn't drinking that much), but the cheese and butter I was consuming daily as well. Once I cut all that out of my diet, I started feeling better.


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Burning in other areas

Post  Rainy Day on Sun May 19, 2013 11:01 pm

When I flare, I do too sometimes burn in other areas. The way my physio explained it is that one nerve (down there) gets ticked off...and starts communicating with other nerves...and gets them all ticked off. At my worst point, I burned even in my arms, back, boobs, face, etc. At my very worst, i could even focus on my hand...and make IT BURN! It's very much your brain involved...stress...nerves. Since then, my flares pretty much stay in just the legs. And, I am learning to control those flares by reducing anxiety. Anxiety is my trigger. My skin has been sensitive ever since I got V over a year ago. I rub baby oil all over my skin every day...since I feel the slightest bit of dryness. All this has improved though now that I understand a little how this beast operates. So, you aren't the only one that had other burning areas. And, yes, it does get better.

Rainy Day

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Re: Found the cure to my vulvodynia

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