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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 3

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


Hi from the newb

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Hi from the newb

Post  ButterflyLiz on Fri Nov 18, 2011 10:49 pm

My name’s Liz, I’m 26 and I’ve had vulvodynia for 10 years – looks pretty scary when I write it down! For a lot of that time it has been manageable and there have been times when it seems to have almost gone away completely…almost but not quite.

This year has been a challenge. In January I had a mega flare-up, worse than anything I can remember. We’re talking stabby, burny, electric-shock hell. It blindsided me – things had been ticking along reasonably smoothly on the vulval front up until then and all of a sudden I couldn’t even get out of bed, let alone drag myself into work. Things did calm down, albeit slowly, and my pain is back to more of a normal pattern now, but it left me really scared.

Once the physical pain started to subside, I started to have panic attacks, which I’ve never experienced before, and generally felt stressed & anxious all the time. It didn’t take me long to realise that this was a reaction to the sudden onset of the horrendous flare. I went on a three month course of antidepressants which helped me a lot but I’m still way more anxious than I used to be about all things vulval.

In a way though, it was a bit of a push to me to accept this condition as part of my life and make the necessary adjustments, which I had been struggling to do. I am fortunate to have found a wonderful consultant several years ago who has helped me enormously (not least of all by putting me on pregabalin – lifesaver), but I think on some level I still wanted to pretend that I didn’t really have this. Now I’m having CBT to help with the anxiety, physio sessions & seeing a neurologist next week, after being on his waiting list since January! I’m also going to the VPS conference in London in December with my partner. Is anyone else going? I’m really looking forward to it.

Anyway, so glad to have found this forum, not sure why I haven’t looked for something like it before.

Best wishes to you all xx
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ButterflyLiz

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Re: Hi from the newb

Post  skippypie23 on Wed Nov 30, 2011 1:14 pm

Dear Liz,

You have clearly been extremely strong and constructive in dealing with this. And it's truly wonderful that you have found a consultant who can actually HELP you! That's a huge deal!
I haven't even been able to find anyone who even considers vulvodynia when I bring in my research and describe my symptoms.
You mentioned pregabalin; does Lyrica help with the vulvar pain or is it mainly for anxiety?

It's awful how much this condition can affect you on a psychological level. Sometimes I feel like the pain is being caused by my fear of hurting, if that makes any sense. I really hope you keep getting better, and please keep us updated with your progress with the neurologist!

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Re: Hi from the newb

Post  ButterflyLiz on Sun Dec 04, 2011 8:21 pm

Hi Skippy,

Thanks, yes, I guess we tend not to give ourselves enough credit for how strong we actually are to deal with all this crap! And then it comes as a surprise when it all gets too much…

Anyway, I agree, I’m very lucky to have a knowledgeable and compassionate consultant. It’s nothing short of tragic that the same can’t be said for every woman with v troubles. My heart really goes out to you. Is there any option for you to try and see someone in the UK? I’m not too sure what the options are there.

The lyrica is 100% for the pain. I’ve been on it for about 3 years now and it slowly but surely reduced the severity of the pain. For about a year or so I was *almost* back to normal & could have sex if I was careful. It was when I came off the lyrica for a few months that I had the wicked flare-ups so I’m well and truly back on it now!

It totally makes sense that it feels like the pain could be caused by your fear of it hurting. It’s likely that to some degree your pelvic floor muscles are unconsciously tensed all the time against the pain, which actually will increase the pain, so re-educating your muscles down there to be relaxed all the time will probably help (I’m in the process of doing this). However, I don’t think that this is the full story. It seems like most women need to approach treatment from several different angles at once.

Thank you, I have had a really good few weeks pain-wise and will post something more detailed soon. All best wishes to you, and feel free to ask if there’s anything you wanna know.

xx
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Re: Hi from the newb

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