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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

Hi girls! New in this forum

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Hi girls! New in this forum

Post  Gaby on Fri Jul 13, 2018 2:31 pm

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 pills,( triconazol, fluconazol, and all the "azol's" you can imagine hehe)
In march the yeast infection went away but i kept the symptoms, (burning pain in all my vulva, and eventually also the area around my anus ), and I also notice i had a little ball on the left side of my vagina entrance, so i went back to my gyn and she said it was normal after all the medication i had, that eventually all the pain would go away and she gave me only a moisturizing cream. I used it for around 3 weeks but the pain did not go away, so i went to a dermatologist this time, she said that the PH on of vulva skin was affected and she gave a special cream ( to be prepared at the pharmacy). Since the main ingredient was corisone, it was not recommendable to be used longer than 3 weeks, I must say that it help for the skin around my anus but my vulva still burned a lot!.
So here i go again back to the gynecologist, she took a sample and sent it to the lab. All came back negative for infections, so she said to me that there was nothing to be done, that she couldnt do anything!! She had no clue what was going on!, So i started my search on the internet, and i found a post from a girl in the Netherlands ( i live in Belgium by the way) saying she got cured with PEA pills and cream, so i didnt doubt about it and order them. It did help to ease my pain, but then in may i went on holidays ( to the beach) and it was a hell!!!!!!!!!!!!!!. I got the yeast infection back and on top of that the little ball i had got swollen and it hurt as well, i could barely walk!, so i had to go to a gynecologist there.
She told me that my Bartholin gland (i didnt even know what that was) and my cervix were infected, thus i had to take again triconazol and clindamicine ( i dont know the commercial names in the US) for 15 days, also my poor boyfriend had to take them.

After these 15 days the pain was still there but it wasn't as bad as it was with the infection ,but i still had pain! Before this last yeast infection having sex was not painful but after it it is.
So back home after a few temps of painful sex i got an UTI Sad Sad ... since i had it before i knew which meds to take.
When i got the uti under control I went to see another gynecologist, she told me that my Bartholin gland was still swollen but not enough to do something about it, she also mentioned that the source of my pain was due to a chronic vv ( that is also why the after sex is so painful), she prescribe lydocaine to use before sex and another cream with corticoids (which i read are very bad on the long run), she took also a sample for yeast infections that came out negative but she didnt check my urine or anything related to it. She also told me there is no cure for this, that it goes away by itself but it can take months or even years!!! But how can you live like this, always in pain!.

I keep doing research and looking for a cure, i refuse to live like this, and that is how i found this forum, I've been reading it for a while and I saw a post about saginil gel, i've been using it for a week and i must say that my pain on the extern labia has decrease a lot! i almost dont feel it anymore, but i still have pain in the intern labia and on my urethra, I feel like if something is pushing on it all the time and after I pee i have bladder pain Sad Sad Sad Sad ................................ on top of it, I am 34 years old and the biological clock is starting to stress me, my boyfriend and i want to become parents somewhere in the near future but how if we cannot even have sex!!

At the end of this month i will be visiting a new gynecologist, someone specialist in vulvodynia and yeast infections, he is my last hope so we will see.

Has any of you got pregnant with this condition? Is it possible? Can you get pregnant and at the same time follow a treatment for vulvodynia? Any advise is welcome.

Thanks a lot and keep strong!! We'll be cured some day Smile.


Sorry for my bad english I am not an english native speaker.


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Re: Hi girls! New in this forum

Post  Taylor1 on Thu Aug 02, 2018 11:11 am

Hi something very similar happened to me, water infection, antibiotics, thrush and now this for me its been 3 months of pain some day are worse that others. I am just using coconut oil and lidocaine which helps when it is really bad it means I can cope with a day but I am single and desperately want to meet someone but who will want me with this...

I dont have any advice or anything that I can say that will help as I am new and struggling with this too.

I am tempted to try the saginil gel you have mentioned but unfortunately I do not have a lot of money

Good luck x


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