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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

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: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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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