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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!!!

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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


Trying something different

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Trying something different

Post  Sassymel on Sat May 07, 2011 7:49 am

Hi,

I'm also a newbie to this forum! And glad to have found it. I need some spirit lifting Wink I've had Vulvadynia nearly 3 years and am so determined that it won't become 4. To be honest, I think I have this condition milder than many of the women on here. It used to be so much worse for me, but I do think I'm getting somewhere with it. The hardest part for me is the difficulty to have sex with my fiance. I love him like mad and it's so tough not being able to express that in every way...and knowing how good it was before I got this!

I see a specialist fairly regularly rather than a doctor. I was originally going to the doctor for reoccurant thrush and I'm so glad she realised whatever I had was outside of her knowledge and referred me on. I'm lucky because here in NZ my treatment, through the sexual health clinic, is heavily subsidised by the government. I feel really lucky because as I understand it that's not the case for ever country. My specialist is excellent and I have full faith in her. I've been on Nortryptoline almost from the begining but my dosage has dropped now. I used to wonder if if it was doing anything, but looking back at how painful it used to be and how it's not as bad as that now, I realise that it must be doing something!

I also see a physio and am happy with how that's going. She's taught me a number of exercises to help relax the pelvic area and my muscles. She's also got me doing vibrator work and a diaphram that I'm slowely moving up in size with. It all felt a bit awkward at first, but I'm determined to see change so I got over that.

My next step will be going to see a psycologist. I think both myself and my fiance should go, because this isn't only a physical thing and this doesn't only affect me. Our minds play such a big part on our health and having V can create a lot of frustration, sadness and the rest, as you all know, and I think it'd help to talk to someone professional about it. So it can't make things worse and I'm willing to pay what it takes (hopefully it's not too much haha) to get into a better head space. Because although I know things are improving it's such a slow process and it gets me down... My fiance is really supportive and happy to come with me. He wants me feeling better as much as I do.

My gosh, sorry, this is a novel. It's just so good to be able to talk to people in a similar position as I am. Sometimes I feel so alone in my plight!

Sassymel

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Age : 31
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Re: Trying something different

Post  noni on Sat May 07, 2011 10:25 am

Hello and welcome !


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noni

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Re: Trying something different

Post  Mouse on Sat May 07, 2011 9:17 pm

Kia ora Mel!

I'm also in NZ. I'm glad you have found an amazing specialist. It seems to be luck of the draw in this world. I have one in Auckland who is pretty fab. Although I'm also taking this thing by the scruff of the neck. I've taken responsibility for my healing and have attacked it from all sides.

A psychologist is a great step to take. I see a sex therapist, she has several clients with this shizzer specific knowledge really helps. This thing really does your head in so unloading all the crap is essential. It's great that your partner is so supportive and willing to participate. I didn't take my hubby initially and now it's become my therapy really. You may be able to get funded therapy through your GP?

I do physio as well, no drugs though I couldn't make those work for me. My pelvic floor locks up sometimes, strange how tension shows up there. I meditate and have made significant dietary changes. I try to do anything that gives me endorphins. Yes smiling and even laughing do that! Singing is even better. I love singing but it's usually restricted to "home alone", in the car or when I'm bladdered Embarassed

We are all different so don't get caught up with comparisons. Any version of this is absolute crap. Silent illnesses and particularly ones that affect our lives so greatly are bloody unfair. It sounds like you are being really proactive in your recovery, that's fabulous!

Take care and be gentle with yourself.
V. grrrr it pisses me off that the signature I've used for decades is now the symbol of evil!!!

Mouse

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Re: Trying something different

Post  Sassymel on Sun May 08, 2011 2:18 am

Thanks Mouse. Great to hear all of that. Yeah I'm in Hamilton and yes I'll inquire at my GP about therapy funding, I hadn't thought of that! Yeah I think something that annoys me the most is that each of us are such different cases and there is no such thing as one size fits all! Not only do I want to get through this, I want every woman out there suffering to get through it...and it frustrates me no end that everything is such trial and error...

What kind of diatry changes have you mde? I've read so many theories...and I don't want to drastically change my diet if it's not worth it...but I'm making a real effort to reduce yeast, acid and sugar intake. Which really sucks as I enjoy beer, wine and baking! Sad But rather than eliminating completly I'm just doing as much as I can to replace it with something else when it suits. I'm not much of a drinker anyway so I tell myself that that helps...who knows though!

I've picked up my exercise (also to increase the happy endorphines) and have been doing yoga to help with relaxation and flexability. I was doing a bit of belly dancing for a while too and that's supposed to help with muscle tention in that area and learning to control muscles separately so I try to keep those moves up too when I'm doing mundain things like the dishes Wink

Trying to tackle it all "holistically" Wink

Sassymel

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Re: Trying something different

Post  Mouse on Mon May 09, 2011 12:49 am

Mel it sounds like you are doing some great work! It makes sense to me to look at everything you put in and do to your body.

I'm gluten free but that's because I'm lucky enough to have an auto immune disease. I'm now sugar free also which was quite an adjustment! It really works for me though. I think that if burning pain is an issure reducing acid foods is worth a shot. I hit the chocolate hard at Easter and had a major relapse, it was also period time so everything went wonky.

I'm really keen to start pilates. I used to do yoga and really enjoyed that.

We are on FB if you want to join. It's a private group, just email sebby and she will hook you up Smile

Mouse

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Re: Trying something different

Post  Aussie on Tue May 10, 2011 6:49 am

Vicki,

Not sure if pilates is such a good idea. I always used to do it before v and my specialist said that it is a bad bad idea for people with v as we have a hard enough time relaxing the pelvic floor. Alot of the moves in pilates increases ab tension and when you tense your abs you kind of cant help doing your pelvic floor... my tummy's gone to pot since i stopped pilates....so occasionaly I do a work out, and boy does my v flare the next day...it is not worth it, trust me.

Mel,

your approach sounds similar to mine and Vicki's I wish Aus medicare would help out with the costs of physio, your lucky over there. I get 5 sessions subsidised a year....I have used them all in 5 weeks. I have never heared of such a costly condition, even mum with all her medical things pays less than me a month for drugs/physio/massage etc. Keep going with it, it works! I too have come so far with the help of physio. Sex is now pain free almost all the time, mayabe a little burn afterwards but mostly great...I just can't go too wild (haha). So you will get there. My problem is I still have pain wearing jeans and even when I am wearning nothing, but sex, is pain free...in fact it is the only time other than sleeping I do not feel pain, go figure?!

Claire

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Re: Trying something different

Post  Mouse on Tue May 10, 2011 7:07 am

Thanks hon, I was going to ask my physio first. There are some pilates instructors who work alongside physios. My pelvic floor locks up as it is. Hey I'm probably too lazy anyway!

Mouse

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Re: Trying something different

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