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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

6 year sufferer but I’ve found some hope

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6 year sufferer but I’ve found some hope

Post  Npage14 on Wed Oct 10, 2018 1:33 am

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 find relief, going through my first couple years of high school was a nightmare as you can imagine. I would sit in class and feel the worst burning sensation and want to scream. At first I had no idea how to appease it, but a couple years in I went to a physical therapist and encountered some advice from a dermatologist as well. The physical therapist would Do this thing that was almost like a pressure point massage in my vagina, the first time it hurt so bad I could hardly stand it, but the more she did it the less it hurt and I found some relief. The pain didn’t go away, but she helped me realize I was clenching all the muscles down there because I was in pain, and relaxing them did a great deal for me. Beforehand I used to get what felt like pinched nerves, and I no longer get those since. My dermatologist recommended not wearing underwear at night, which I had heard before but that time it stuck and I started taking that advice. I chose to start wearing night gowns and I think by doing that it was getting rid of irritation, also healing me somewhat. If my clothing options allow me, I choose not to wear underwear as much as I’m able to. I used to avoid thongs, but I realized now that it actually allows more airflow and less back and forth friction since it stays in one place. Now here’s what has helped me the most, somewhere along the way I realized that it seems to be in direct relation with my body temperature,especially in my feet. If I am able to keep myself cool I feel for the most part pain free. Discovering this was key to coping. Minor wardrobe change and sleeping with airflow at night can really make a difference, ladies. Since discovering this, I have been able to go days forgetting there’s even something wrong with me and for some of you that might be huge. Of course there are some situations where it is inevitable like on hot days or if your without air, and that is still a struggle for me. It’s in those times I feel the most trapped. But if you find yourself in that situation I’ve noticed it helps to wear loose fitting shorts and no underwear with sandals. Another thing that has helped me is a product called dermoplast which my aunt first found out about when a doctor gave it to her after having a baby. It is a cooling and moisturizing spray which helps with the heat issue. I used to use lidocaine before that but this is much better and no prescription is necessary, you can buy it online at Walmart. I hope some of these things are helpful for some of you! For the most part I am now living a functional life, but as I plan on getting married within a couple years, and have still kept my virginity, I am worried that the feelings of being trapped with pain are going to come back again. If anyone has any tips or advice on what to expect for that I will gladly take them! I’m hoping to connect with some of you on here, I think the hardest part sometimes is that it’s so private for us that we have to suffer in silence. I’ve only chosen to share my pain with very few people in my life. I’m anxious to hear some of your stories!


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Join date : 2018-10-09

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