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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 …

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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 …

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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

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: 3

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

Fri Mar 09, 2018 6:17 pm by Tunes25


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 …

Comments: 10

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.

Comments: 1

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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How dare he make me feel this way!

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How dare he make me feel this way!

Post  emalita on Fri Sep 16, 2016 11:42 pm

About a week ago my fiancé (12 year relationship) came home pretty quiet and seemed to be silently crabby. I asked him what was wrong several times, and of course he responded that nothing was wrong. So after a few days of this, I gave up asking and went about my days. So this resulted in us not saying much more than a few sentences to each other each day this week. I stayed upstairs after work and he stayed downstairs. I went to bed alone, and he came to bed usually after I was asleep.

He had already made it pretty clear several weeks ago, if not months ago, that he was sick of hearing about my vulvar issues. So, for the last 2-3 months, I haven't talked to him about it at all (the good or the bad). The only person I can talk to about this is an online friend, and he knows this.

Anyway, tonight was the last of my silence on the issue because before leaving to go to his sister's he didn't even come upstairs to say goodbye. When I asked him if this was how our life was going to be now, he just responded that he was tired and annoyed thinking that we will never go out and do anything together ever again. Although I understand that this does impact him greatly, and I've generally tried to be so apologetic to him for HIM having to deal with this, tonight I'd had enough!

How dare he be so cold towards ME?
How dare he make ME feel guilty for being in pain?
How dare he not ask me at least once in a while how I'M feeling?
I'm so sorry for how much pain this must be causing HIM!
I'm so sorry for how much of an inconvenience this is for HIM!
Next time I will be sure to have a condition like cancer so he can talk to the world about HIS suffering!

Yes, I said all this to him. I truly believe that if I had a condition that could be openly discussed like cancer, and he was treating me like this, his family would SCREAM at him. But no...he gets to go on telling everyone at family events whatever he wants to make me look like the horrible fiancé who won't spend time with everyone.

What a horrible woman I am because I clearly must have chosen this pain for him to think treating me this way and making me feel guilty was the appropriate thing to do. The worst thing is that I'm sure he still feels that he is the victim in all of this even after I said all those things to him.

So he left tonight to be with family, and I am home alone with my thoughts and my tears...again Crying or Very sad


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Re: How dare he make me feel this way!

Post  PainBlogger on Sat Sep 17, 2016 2:18 pm

Sad That is horrible for you, emalita. I don't know if I can offer any helpful advice but I hope your situation - physical symptoms and emotional/relationship situation will improve soon.


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Re: How dare he make me feel this way!

Post  fairlight10 on Sat Sep 17, 2016 5:59 pm

Hi emalita I read your post this morning. It made me sad. You have been kind and supportive to so many of the sufferers on this forum. This is such a cruel condition and can cause many a relationship to suffer. When I developed this condition I told my husband I was no good anymore and to find someone else. Fortunately he didn't. I hope by time you read this you are back in his arms.


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Re: How dare he make me feel this way!

Post  jjr23 on Sun Sep 18, 2016 11:18 am

Hi emalita,

How dare our partners make us feel like that!!! They have no idea what we are going through. They play the victim and act like they are at a disadvantage. They are so selfish. They focus on how they are affected by it and how they are negatively impacted, AND on top of this they make us feel guilty for putting them in that position. They don't think about us and what we are going through. It's horrible and really REALLY unfair. This pain condition is out of our control. Don't they understand that? It's so frustrating. Men don't seem to put themselves in our shoes. They don't understand that we are suffering just as much as them.. and so much more! We have to live with this issue and carry the burden of sharing it with out partner. We are suffering enough already. And then to have their selfish attitude added to the situation.. well that's just fucking shit. I completely empathize with you. Having this condition has been the hardest mental/emotionally struggle I've ever dealt with and I can't imagine what it would feel like for your long-term relationship.

I'm sorry to say this but I don't know how long I could put up with that for. I understand it's a tough situation for you because you have been together for so many years and you probably have a deep love for each other.

I don't know what else to say. I don't have any specific advice. I was going to say communicate openly with him but it sounds like you are way past that point and talking about it seems to annoy him. Just wanted to respond and let you know that a lot of us (me, at least), know exactly what you're talking about and have felt those emotions.

I hope things work out and improve for you!


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Re: How dare he make me feel this way!

Post  lindsey_taylor on Tue Sep 20, 2016 12:17 am

You are one of the absolutely most kind and helpful people I have had the pleasure of meeting, and I do not limit that to this forum. I am so very sorry that you are having to go through this with your significant other. I know he has his frustrations for sure and I can understand that... but he needs to talk these things out with you instead of acting the way he is acting. I'm so sorry. I sometimes wonder if, when our partners get like this... if they have forotten the pain and frustration we deal with daily. I do hope things get better for you very soon.


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Re: How dare he make me feel this way!

Post  emalita on Tue Sep 20, 2016 2:17 am

Thank you all so much for your kind words. I'm glad to at least have this forum to share my pain with (emotionally and physically).

Unfortunately I can't say that my fiancé and I are any better. However, I have noticed a slight shift in his tone that is less cold, but I'm still disappointed in him and will need some time to move beyond the hurt he has caused. Most of my energy is put into healing these days.

Thank you all again. Hopefully one day we will have better things to fight over with our significant others Wink


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