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» Anyone have pain with urination?
Yesterday at 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

Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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

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: 2

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


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Post  rockylife on Sun Feb 04, 2018 8:33 am

I was just diagnosed last 2 days ago with vulvodynia. This pain started Dec 17 2017. Until now the pain lasts all day. I have anxiety and panic attack disorder too so it's very hard for me to cope. I'm afraid my boyfriend will leave me due to this condition. suicide is the only way to end this suffering. what to do?


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Post  fairlight10 on Sun Feb 04, 2018 10:06 am

Hi Rockylife. I know your feeling desperate right now but do not do anything to hurt yourself please. What have you been prescribed for the condition? I am on 20 mgs Nortriptyline every night for nearly 6 years. It gave me my life back.l was off work for 4 months before l felt ready to go back. There are other meds for pain out there. Well done for finding this support forum. It is full of information to help you through this tough time. If your boyfriend does not support you then he is not the one for you. You mention your anxiety and panic disorder. This could be connected. I have found stress and anxiety aggravates this condition. Research as much information as you can. When I found this site I read every post. It was such a relief to know I was not the only one with this painful condition. My first thought when diagnosed was WHAT THE BLOODY HELL IS THAT. I was angry, tearful and did not want to live anymore. Then the meds gradually started to work. I have tried to drop to 10mgs Nortriptyline but after 24 hrs l start to feel an irritation down their. I have vulvar vestibulitis and have had to accept this otherwise I would have gone mad. My husband and family have been a great support. This is what you also need. So, keep in touch with this site. Good luck.


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Post  rockylife on Sun Feb 04, 2018 11:15 am

Thank you fairlight10, it's just depressing to think that at a young age I already have to deal with this awful condition that affects the way I live especially my day to day activities. What's sad about it is, I live in the Philippines, my gyne doesn't even know much about Vulvodynia. She told me that it's all in my mind and try to relax. I know it's not because I feel something painful down there without visible lesions. It's painful even if no pressure is applied, all day everyday. She prescribed me with Etericoxib and Vitamin B complex. I haven't taken these meds yet, maybe tomorrow. I have read some articles that Primrose oil can help in the remission of Vulvodynia and Pregabalin is effective too. I would like to try them, but without prescription, I can't buy them. Any thoughts about these meds? I'm frustrated because it seem that I'm the only person in the Philippines who suffers from this illness plus no medical professional who's duly experienced with this kind of condition is available. Help is too far to reach. My boyfriend has changed a little on how he treats he after knowing my condition. I dont wanna deal with this problem all throughout my life. With this pain, I can't seem to have excitement about life. Feels like I wanna isolate myself away from everyone. This is so depressing. Suicidal thoughts are still active.


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Post  fairlight10 on Sun Feb 04, 2018 1:25 pm

Hi Rockylife I have not read of Etericoxib being used for vulvodynia. I have heard of prebagablin and gabapentin. These are usually used for epilepsy but have been useful for nerve pain. Also, trycyclic antidepressants are gold standard for vulvodynia namely amitriptyline and nortriptyline in low doses. There are many more. Sounds like you have unprovoked vulvodynia but it is possible to have both provoked and unprovoked. It makes me so cross when doctors say its all in the mind. It isn't but your stress and worry do exacerbate the condition. Best you can do is take the meds she has prescribed and if they don't help mention those you have heard of being used for vulvodynia. Do your own research and read the posts on this support forum. We will be their to support you.


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Post  sarisbaris on Tue Feb 13, 2018 5:48 am

I'm so sorry! My heart goes out to you. I am cured. I battled V for 15 years. In those years, I tried so so many things. I followed the protocol by Anthony William and it worked. Here's my blog. http://myvulvodyniacure.blogspot.com/

Please email me if you want to chat. sarahcamp20@gmail.com

Just an FYI... according to him vaginal burning is caused by a strep or shingles virus. I had both. They are both currently undetectable by docs. Metals in our system (we all have them now) feed these viruses. (Cilantro would always calm down my flare. Cilantro is a powerful metal detoxer. I had a lot of metals back then.) And according to Anthony William, anxiety attacks are caused by too many metals in our bodies. It's all related.


Please don't lose hope. Yes, the doctors don't understand but that doesn't mean there isn't healing. My western doctor was astonished by my healing and told me to get online and spread my healing testimony. So here I am.


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Post  Faezeh on Sat Feb 24, 2018 11:20 pm

Hi rocky life
Do you have constipation and urinary hesitancy and pain when siitting in your buttock?if so , you may have pudendal neuralgia and you must go to the site : pudendalhope.info to get help.goodluck


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