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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.

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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 …

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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 …

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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

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


I'm New! and recovering from surgery

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 1:19 am

Yes, there is a list on nva.org but you do have to join which costs $40ish but if you don't have the money you can put in a request to have the fee waived

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Re: I'm New! and recovering from surgery

Post  lonelyone48 on Sat Mar 08, 2014 1:46 am

Ok thanks!

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:52 am

Wow, your doctor sounds awesome!
Unfortunately, in Canada, I can only go to a gyn with a referal from my family doctor. The gyn she sent me to seems to understand this stuff very well, but I've had so much difficulty with him over the years because he doesn't communicate well, can be arrogant, and his staff is even worse.

At one point, several years ago, I went back to my family doctor and asked if she could refer me to a different gyn. I'd had enough. And she did. Unfortunately, that new gyn knew nothing of vulvodynia, and I got bounced from doctor to doctor, wasting time and left to feel like I was some overly sensitive crazy woman.

So exasperated, I finally went back to my original gyn. He and his office seem to have improved a great deal regarding relating with people, but still no where near what you're describing! I mean improved means now if I call and leave a message, they will actually call me back MOST of the time. And when I called to ask questions before my surgery, they actually put me thru to the doctor the second time I called. This is a huge improvement for them.

For me to feel comfortable, I really need to have more information.. or at least to have been told some kind of general thing like 'your body is going to do strange things for weeks after surgery, but don't fret about it unless you're running a fever or... whatever.'  But I got none of that, and on good days, I figure it's all gonna be okay. On my bad days I fret quite a bit about what I don't know/understand.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sat Mar 08, 2014 1:58 am

Does the list of specialists from nva cover only the US? Or does it also include major cities in Canada and/or other countries?

Chrisk

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Re: I'm New! and recovering from surgery

Post  shanabanana999 on Sat Mar 08, 2014 6:18 am

Chrisk,

That sounds overly frustrating! It was really hard to get in to see this doctor but once I finally did I have had first class treatment. They can't/don't always call back right away, but  they always do and if I need something they make sure that I have it.

I'm not sure about the list, I actually found out about it from my specialist so I didn't need to search through it, or even join the association. There are a lot of helpful articles/pamphlets on the website though if you have time to search through them and you don't have to pay a dime. I know there was another place that I ran across a way to search for doctors that had knowledge of vulvodynia but I can't think of it off the top of my head--I will do some looking/thinking for you. I truly think it is essential to have your doctor available to you, especially for something like this-where there aren't many places where you can look for valid information, etc. and I am sorry that your doctor is just not providing you with this.

I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Are you noticing any of your odd symptoms going away? I would say that it is completely normal to have odd poops for a while after a surgery in the rectal area and also for a little while after taking pain meds too, but they should straighten themselves out after a while, probably a good while. I still feel exhausted and can't bend over! My rule of thumb with worrying about things is, a) if it's getting noticeably worse, or b) if it is persistent, bothersome, and not improving, I will call my doctor.

shanabanana999

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sat Mar 08, 2014 3:40 pm

Dr trabin in west palm beach florida. I think everything you're feeling is normal just wait til you're fully recovered until you start to worry...

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Re: I'm New! and recovering from surgery

Post  Chrisk on Sun Mar 09, 2014 2:35 am

shanabanana999 wrote:
I did find the website for the Canadian Foundation for Women's Health which I thought was good but I can't post the link (too new, but try googling it!) and I followed a link at the bottom, the mvprogram.org. It seemed similar to the nva.org, in fact they used NVA as a resource. You may try contacting them and asking if they have a list of doctors in Canada that are recommended.

Thanks! I found the websites you mentioned. That's exciting! I'll give a call on Monday to ask about their programs and if they have a database of specialists, etc.

As for my symptoms, the burning pain is slowly calming down, but the odor is getting worse. I've had a day or two now when I otherwise feel pretty good, but am still getting fatigued easily. I'm less worried as time goes by.. starting to look forward to the 6-week mark (I'm not quite half way there.) so that I can maybe start physio and get back to it!

Thanks to everyone who's responded to my questions/comments/concerns. Your responses are so very much appreciated! I can't thank you enough.

Chrisk

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Re: I'm New! and recovering from surgery

Post  Alana3 on Sun Mar 09, 2014 1:38 pm

Honestly I wouldn't change doctors now. You made the commitment to be with him others are going to be reluctant to see you until you've healed.

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Re: I'm New! and recovering from surgery

Post  Chrisk on Mon Mar 10, 2014 12:09 am

yes. agreed

Chrisk

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Re: I'm New! and recovering from surgery

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