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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» 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

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: 4

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

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


New girl from the states

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New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 5:21 am

Hi everybody. I have been suffering from vulvodynia for as long as I can remember. I am only 22 years old, but I have never lived without intense pain upon penetration (even when I was a young teenager and trying to insert tampons). I am kind of at the end of my rope at this point and I have found it very difficult to get over my spells of depression lately. I am incredibly lonely and I feel absolutely hopeless. I decided to finally join one of these support groups in hopes that I can work through my emotional and physical pain alongside others who understand. This condition is absolutely awful, but I am glad to have found a place with empathetic women who are working hard toward finding a cure! I look forward to sharing stories and treatments with you all.

seagirl88

Posts : 14
Join date : 2011-03-14
Age : 28
Location : Washington, USA

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Re: New girl from the states

Post  naomi on Mon Mar 14, 2011 9:15 am

Hi hun!

Welcome to the forum...you're among friends here so no thinking you are on your own anymore! I felt like that about 2.5/3 years ago and struggled away until I came across this forum cruising the health sites etc for any help I could find. Sebby (admin) is a god send for setting this website up as there seems to be little accessible help out there.

We are all working on this condition together on here.....crap days, crappy days and better days! And believe me we can all relate to the feelings of despair, hopelessness and depression...know that all too well Sad

There are loads of treatments that are possibilties and these are the girls to get to know! Since I joined in July it has been my main place of mental relief.

The regulars on here are a bunch of nutters but completely harmless Smile heheeee, I think they are all lovely and we do have fun on facebook (message Sebby the Admin or me on here and I'll get you on the secret group on facebook where were are all real girls woooooooh Smile there's about 20 of us on there now, all spread across the globe, so there is always someone around to chat to if you are struggling...or talk about general rubbish Smile It is a secret group so no telling the world about ur La-la problems Smile

I hope ur day is good. And dont forget you're not alone in this anymore!!

Naomi xxxxx
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Re: New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 7:12 pm

Thanks so much Naomi! I actually JUST deactivated my Facebook after having it for 5 years because I was finding that it was only bringing me down (i.e. always reading about everybody's perfect lives and love lives). If I decide to reactivate it I'll definitely join the group!

seagirl88

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Location : Washington, USA

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Re: New girl from the states

Post  Sebby (Admin) on Mon Mar 14, 2011 8:02 pm


Welcome to the forum Smile

Yes we can all relate to how you are feeling. This condition is so isolating as you don't feel able to talk to many about it like you would if your arm hurt!

I too have always had pain witht penetration, during sex, tampon insertion (since I tried at 13) and medical exams. This does not mean that it will be any harder to treat just because you have had it for a long time.

I have dealt with feelings of utter despair and there are days when I just don't feel I have the strength but the women I've met on the forum help to refill my strength bottles..lol I really dont know where I got the term strength bottle!

What treatments have you tried and what treatments are you currently on?

Im going down the route of pelvic floor biofeedback which may take months to take effect but I am plodding on and remaining hopeful

I have also been on 300mg on Pregabalin for about a month and have noticed a reduction in general pain and flare ups last a day or two rather than several days

I am also spraying the vulval area with water after urination and applying vaseline as a barrier against rubbing which Im also finding helpful

If you wish to joing the facebook group you can always set up another fb page even with another name, just to allow access to the group

Take Care


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Re: New girl from the states

Post  seagirl88 on Tue Mar 15, 2011 6:40 am

Thanks Sebby. It's so nice to know that there are other people who are going through the same thing! Also, creating a Facebook account under a different name is a good idea-- I might do that. As far as treatments go, I've had a hard time admitting to myself that this is a problem that isn't going to go away on its own. Therefore, I probably haven't tried nearly as many treatment options as most of you all have. I have definitely gone down the route of oral antifungals a couple of times (because I was either diagnosed with a yeast infection or BV) and those of course didn't do anything. I then used Estrace cream for a while in combination with a steroidal cream, but those didn't do anything either. I JUST finished a treatment prescribed to me by a naturopathic doctor where I douched with chamomile tea and slippery elm bark and vaginally inserted both natural antifungals and probiotics. It may have helped slightly but not significantly.

seagirl88

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Age : 28
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Re: New girl from the states

Post  Mouse on Wed Mar 16, 2011 8:14 am

Hey hun and welcome!

We're all here to help =) We have a lot of fun on the FB page and it's a great place to have a whinge also! So give that some thought.

It's really easy to get down, this thing can be soul destroying. Have you got a therapist? Mine virtually saved my life, I was circling the drain six months ago. Now I meditate, have radically changed my diet, do PT, aim for good sleep hmm and try to destress - that's a work in progress. Most days it works.

In the mean time do you have a pelvic pain specialist or a vulval specialist? Check out Sebbys consult with Howard Glazer there is really good advice on there.

Sadly there are a lot of women your age on here but all of us are desperately seeking a cure. Making a commitment to finding that is the first step so well done! Ideally living the cure rather than the disease - sounds good in theory doesn't it!

I hope you are having a good day. Take care
Vicki


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Re: New girl from the states

Post  seagirl88 on Wed Mar 16, 2011 7:59 pm

Thanks Vicki! I actually just made an appointment with a therapist for this coming Monday. I've gone to therapists before about dealing with my anxiety and depression, but I've always been too embarrassed to mention my vulvodynia. This time, I'm just going to let it all out! I also booked an 8 hour meditation orientation for the end of May, so hopefully that helps.

Currently I'm still going down the route of diet change (and a possible upcoming detox and candida treatment). My plan is to spend the next 3 or so months doing that. If I don't have any significant improvement I will definitely look into going to a pain or vulva specialist.

Thanks for your support!

seagirl88

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Re: New girl from the states

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