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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico


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 …

Comments: 20

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

New and Feeling Down...

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New and Feeling Down...

Post  orchid27 on Wed Jan 01, 2014 12:20 am

I have suffered with pain for over 7 years. I married an amazing man 3 months ago who has been with me since before the pain started. I have provoked vestibulitis and underwent a vestibulectomy last week. The recovery is smoother than I expected, but what I didn't expect is the emotional toll. I am afraid my surgery will fail, I'm afraid I will will have to have another surgery if this one doesn't work. I am most affected by the ups and downs of the recovery; one day I feel great, the next day I feel like total crap. Lying in bed all day alone for a week is taking it's toll. I made a blog to try to help other women know what to expect who end up having the surgery, but sometimes I could really use some extra encouragement. My blog is at privatepainsupport. wordpress. com if you want to know about the surgery and recovery. Words of wisdom and encouragement would be such a help. I just want to smile again.


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Re: New and Feeling Down...

Post  Leslieg on Thu Jan 02, 2014 9:48 pm

Hi Orchid,
I hope you are feeling better today. I feel like the emotional toll of this might be worse than the physical pain for a lot of us. You are not alone in your emotional ups and downs. I struggle with this as well even after 5 years. My coping skills seem to be depleted. However, when my downs get severe I am forced to dig really deep within and somehow rally again. This is not easy, but we all have reserve somewhere. Allow yourself some time to feel bad about it.....you have every right. Then do something that you enjoy. I have different issues than you so I cannot offer specific advice. I just wanted to write and wish you well. I hope and pray for you that the surgery is the answer.

It's frustrating that so many of the websites re: V state that there is no cure. I would love to have the time, ambition and power to change that. Whenever I read that in a piece of literature I just want to flip off my computer :-0! It just isn't true and none of us should give up in finding our own cure. So many success stories I've read have happened 'by accident or by chance'. I hope/wish the medical field would pay attention to this.

You are an incredibly strong woman and will get through this. Try to stay positive and do whatever you need to feel happy and warm inside. You are healing. The smile is still there!


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Re: New and Feeling Down...

Post  Fingerscrossed on Fri Jan 10, 2014 10:14 pm

I had a vestibulectomy on Dec 17 for provoked vestibulitis, so I understand how you're feeling. You might even be feeling great now! I'm slightly past the three week mark and have been feeling wonderful. I was very tired of lying down all the time too because I wanted to move around and leave home. Unfortunately, I live right on a hill, so I can't really walk anywhere. If I go up the hill, I have to walk down and visa versa. I would also not recommend taking stairs for a while, even at the three week mark. I did my second checkup yesterday with my doctor and he said I shouldn't be doing that yet, after I told him I walked up three flights to get to the office because I wanted to get some exercise. He said that everything looked good and that I need to keep taking sitz baths, which I hate doing because it feels weird.

I have also been feeling those same concerns about the surgery not working. I've been told there is a 20% chance that the surgery won't work. When I was lying in the hospital bed by myself before the surgery, I started crying because I was afraid it was all going to be for naught and I felt so lonely. I know that if it doesn't work, I'm going to cry a lot and my husband probably will too because we want to be a normal sex crazed couple. Botox is super expensive and typically isn't covered by insurance. Even if it doesn't work, there are other options. I've thought about doing chiropractics because I've had back surgery and thought that perhaps I had a pinched nerve.

I hope you're feeling better!


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Re: New and Feeling Down...

Post  orchid27 on Tue Feb 04, 2014 8:59 pm

Thank you ladies! I just wanted to update and say I am doing better. I had a q tip test at my 4 week appointment with no pain! I am working with the dilators now with poor success and am having some struggle with physical therapy. Just trying to remind myself that it is a journey. I get so lonely being home all day by myself. I wish there was a face to face support group! Emailing back and forth with others has been extremely helpful though mentally. All your stories are so similar to mine, it is comforting knowing I am not the only one dealing with this.


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Re: New and Feeling Down...

Post  Alana3 on Tue Feb 04, 2014 9:06 pm

Yeah I had a vestibulectomy last year trust me what youre feeling is all normal!!!!


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Re: New and Feeling Down...

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