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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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.

anonymous12345

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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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Symptoms

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?

BeeJay

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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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Question

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

Anonymous12345--
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.

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Re: Found the cure to my vulvodynia

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