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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

Newbie and feeling helpless

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Newbie and feeling helpless

Post  Taylor1 on Wed Jul 11, 2018 1:52 pm

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does calm things down a little for me. I have also got the same pain in my bottom area and I have shooting pains in my legs, my muscles are going in to spasms. I feel so scared and so helpless and I dont know what else to do, I am a single mom with 2 small boys and I am so scared of what this condition means for us. I have started some physio and she said my pelvis is out of line and I have nerve damage in my legs so I am hoping that is going to help. I am keep to learn more about the LO diet too.. I am also thinking of trying st johns wort. I will do anything if anyone has any advice thanks x


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Re: Newbie and feeling helpless

Post  emalita on Thu Jul 12, 2018 6:35 pm

Hi Taylor1,

I am not a doctor, and you need to do what is best for you. But what I'm about to say and ask is in NO way meant to diminish your pain or suffering. Please trust me when I say I know how absolutely terrifying genital pain is especially at the beginning.

I know I'm going to sound like a broken record to anyone on this forum that has read any of my posts, but since the treatment of your UTI and thrush/yeast, how long have you gone with doing absolutely nothing to your vulva and vagina (i.e. no antibiotics, creams, diflucan, washing too often, using wipes/soaps/douche/scented products, etc.)?

The reason I ask is that you are still in the very early stages of your pain (this is a GOOD thing), and this is a crucial time to ensure you don't unintentionally cause long term damage/pain.

My issue hit a point of no return after a UTI and multiple rounds of strong antibiotics too, which also lead to a yeast infection. My biggest regret was continuing to ask my doctor for something...anything...to relieve my pain. This resulted in many rounds of antibiotics, creams, boric acid suppositories, diflucan, etc....because that's all most doctors are able to do - prescribe medication. As excruciating as this thought would've been at the time, I wish I would've given myself at least 2 weeks of doing NOTHING in the beginning right after my UTI and yeast infection. I read that it can take the bladder 3 months to heal from the damage of an infection. Plus, I was also eating and drinking a lot of acidic foods (e.g. orange juice, oranges, pineapples, etc.), which was further aggravating my already sensitive bladder. You can read more about my story at the link in my signature.

I can’t speak to the muscle spasms in your legs because I never experienced that, but what I would encourage you to consider is doing nothing. Yes, absolutely nothing. Give your body a chance to rebalance, rebuild healthy vaginal flora, reduce inflammation and sensitivity, and eventually just calm itself back to your “normal”. I found baths soothing (with or without Epsom salt added), but don’t wipe yourself dry after…just dab your delicate tissue dry. Be more gentle than you ever thought you needed to be with your lady parts (it hopefully won’t always be this way). Your vagina has been through a heck of a lot in the last few months, be kind to it. My Chinese medicine dermatologist did not like coconut oil as many people develop reactions to it. So she recommended applying a very thin layer of hempseed oil to the vulva after a bath to lock in moisture. I also applied the waterbased YES lubricant to my vaginal opening. It did sting for a bit after application, but the stinging faded. I felt better about using YES, even with the stinging, because it would help keep my vaginal pH acidic unlike most other vaginal lubricants.

I know a lot of women on this forum have agreed that they’ve made their condition horribly worse with all the medications they’ve tried, and they wish, like I do, that they would’ve just suffered through the pain of doing nothing to let their body’s heal. Heck – you’re in pain anyways, but sometimes doing nothing is the absolute best medicine because your body doesn’t want to be sick or in pain. Give it a chance to heal itself naturally…slowly.

I hope some of this helps you, and I wish you all of the luck in the world!


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Re: Newbie and feeling helpless

Post  Guest on Sat Jul 28, 2018 6:23 am

I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!


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Re: Newbie and feeling helpless

Post  Taylor1 on Thu Aug 02, 2018 10:56 am

Thank you both for your replies...

I am still in pain, I have not taken any drugs for this they tried to put me on amitriptaline and gabapentine but both made me feel so ill then I read the side affects on line and decided this was not for me. They then gave me steriod cream and that seemed to make me worse so yes I have done pretty much nothing. I am massaging myself with coconut oil when it is really bad and then also I have lidocaine when it is really bad.

I am living in skirts and cotton underwear and going no underwear when I can, I have a donut cushion for work as I sit down for a lot of the day.

I am still in pain it seems to be mostly on the outside and feels like I am being pricked with pins from the outside of the vulva right to were the hair growth is the labia. Today is a bad day.....

I am so depressed mainly with the pain but I am single and I really want to meet someone and I cant imagine any man would want to be with me especially if I am unable to have sex.

Feeling desperate....

I may ask my doctor about that bacteria though although they are not particularly helpful


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Re: Newbie and feeling helpless

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