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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 …

Comments: 3

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

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 …

Comments: 0

Intro to My Scattered Brain and One WEIRD QUESTION

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Intro to My Scattered Brain and One WEIRD QUESTION

Post  Minneapolis on Thu Jun 23, 2016 4:51 am

Hey guys, this is my first post.
I got diagnosed in Oct 2013 with pelvic floor dysfunction and vulvodynia. My doctor prescribed me with the hormonal cream and sent me to physical therapy. Both lessened my pain. I used to feel 9s across the board on the pain scale. I feel 4s and 5s now upon initial insertion, then if it gets too long or too fast I'm back up to 9. The past few years I've been single because I was too afraid that A) No one would want me as a partner after discovering my problem and B) that I would never be free of pain and always feel guilty for not being fun to have sex with.

Well, I'm still in pain, but I got a new partner (3 weeks ago! So New!). Now that I have him as motivation, I am regular with my hormone cream and I even tried acupuncture today. I have yet to test whether it was helpful for my PFD but it definitely made me relax. Some days I truly believe that I will never be free of the pain. I want it to go away completely, but I'm afraid it won't.

One good thing has come out of all this. I take better care of my body and exercise a lot more often. I'll keep you guys posted. This disease is extraordinarily sticky and my healing has been slow. Making slow progress is better than no progress, right? RIGHT?!

WEIRD (possibly incredibly stupid) QUESTION:
Has ANYONE on here improved their condition by having sex? It could act as physical therapy, where the partner is very slow and calm and then the pain eventually decreases. Let me know. Also, thanks to anyone who read this.


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Re: Intro to My Scattered Brain and One WEIRD QUESTION

Post  PainBlogger on Thu Jun 23, 2016 9:07 am

I actually found that abstaining from attempting to have sex for a year while I made progress with dilators was what worked for me. Initially we were persisting and despite good communication just making things worse and getting frustrated. We didn't try again until I was able to use the fourth dilator out of the five without pain and the last couple of months I've been able to have pain-free sex again (and I do mean pain-free not just bearable). I know that's probably not what you want to hear. I do understand what you mean by it acting as physical therapy, but with the best will in the world and the most considerate partner, it's not the same as practising with dilators.

You are absolutely correct that slow progress is better than no progress. I would just hate for you to undo any progress by attempting to have sex if your body is not cooperating because pain makes the pelvic floor muscles tighter and just exacerbates the situation. But we're all different. This condition is so variable, with different triggers, causes and symptoms. Ultimately you have to go with your gut instinct.

Whatever you decide I wish you all the best Smile


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Re: Intro to My Scattered Brain and One WEIRD QUESTION

Post  WaahwaahUK on Thu Jun 23, 2016 9:36 am

I have abstained for over a year now, but ultimately I feel it is worth it in the long run as I'm just now getting to the stage where I'm considering it. I found when I did try and wasn't ready to it was painful afterwards and really didn't help. I might have felt reasonably ok during, but the pain after was awful. I think going with your gut instinct is always good though. Your body will guide you. I think the key is though, everything gently does it. Don't try and force anything when you're already in pain.


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Re: Intro to My Scattered Brain and One WEIRD QUESTION

Post  fairlight10 on Thu Jun 23, 2016 1:54 pm

Hi minneapolis . So glad you have found someone new. Only have intercourse if you are feeling comfortable before hand. Use lubrication. Yes yes water based has suited me. You maybe uncomfortable for a while. Take some painkillers if you want. Keep up with the acupuncture. It relieves stress, that's why you felt calm. I think and this is only my theory that your vagina has to get used to being penetrated again. Hopefully each time will get better and easier. Also remember you can please each other in other ways. You don't have to be penetrated every time. Good luck and relax.


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Re: Intro to My Scattered Brain and One WEIRD QUESTION

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