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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


One more for the pot

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One more for the pot

Post  ves on Mon Mar 21, 2011 2:03 am

Hi there,

Seems there's a new one joining every day now so thought I would take the plunge and say hi. It will be nice to talk to others with similar issues....

So, I'm 27, live in London, and was diagnosed with what was then called vestibulitis when I was 17. So far 10 years and no change despite every treatment under the sun- canesten (even though no thrush, thanks doctor)hormone gels, emollients, cortisone etc. Funnily enough when I was on the umpteenth visito to a new gyno years ago for this, she didn't have anything to add about the vestiublodynia, but discovered I has PCOS which was useful I suppose! One thing I haven't tried is any PT, any kind of biofeedback, dilators etc- reason being that I haven't so far felt I needed them or that my pelvic floor is particularly screwed up. However I may need to rethink that (see below!)

I know the research is still pretty patchy, although I would assume that I have the primary or congenital version, as my pain was not precipitated by any type of infection as far as I can remember, although I do remember it beginning quite suddenly when I would feel burning after peeing for about 5 minutes, which is what first took me to the doctor. Thankfully that seems to have gone now but the essential symptoms (red and raw, basically) have never fluctuated regardless as far as I can tell of medication, cycle or anything else! I was put on amitryptylene (can't remember how to spell it) which sent me to cloud 9 for about 2 months after starting it before I got used to it. That was nice as I was incredibly happy, however it didn't actually help the pain !Laughing . Since then I've stopped it as the side effects (dry mouth, wooziness) got to me after a few years.

I was offered lignocaine 5% as well which is pretty great, I don't find the burning associated with it disturbing thankfully as I know some do and I don't have a reaction to it. my complaint is that it's not strong enough, if it really knocked the nerve endings on the head properly, it would vastly improve my sex life! I assume it's not produced in greater strength as that presumably wouldn't be too good for you if used regularly, sigh.

Anyway, my last relationship was ok thankfully, it didn't hurt too much and I applied lignocaine when it did. However I had a fairly horrific experience the other day- have just started dating again, finally got down to it, and um.... it turns out I can't really deal so well with anyone much er, larger, than my ex. In the end we just had to stop which was pretty embarrasing as you don't want to have to go into your gynecological history with a guy you haven't been with all that long, it's not the greatest pillow talk after let alone if you can't finish the act! I hadn't used lignocaine as I hadn't thought I'd need it but clearly I need to rethink that.

Anyway, I try not to get too despondent as I guess there's no point really, but as I know you'll all understand, this does get very frustrating at times and so I look forward to talking to everyone on here and hopefully having a look through and getting some tips.

Surgery does seem tempting at times, but then I read the horror stories!


Anyway, hello...

ves

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Re: One more for the pot

Post  noni on Mon Mar 21, 2011 2:19 am

Hey!

Welcome!!!

I would love to write more but I am super tired!Its late in this part of the globe!

Take care,
noni
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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 11:46 am

thanks Noni Smile

ves

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Re: One more for the pot

Post  Sebby (Admin) on Tue Mar 22, 2011 8:00 pm


Hi ves and welcome to the forum

I have VVS since 13 when I first tried tampons and sex has always hurt to some degree.

I am currently trying the pelvic floor biofeedback option. I am using the home training kit from Dr Glazer's site Vulvodynia.com. It will be many months before I notice any improvement although unfortunatly I have developed an allergy to the electrode I place under my belly button! Thankfully im ok with the vaginal sensor.

I am also on Pregabalin and have noticed a small reduction in pain and shorter flare ups. I have been on 300mg for about 5 weeks. Dr said it could take up to 2 months to see the full effect

I have asked to be reffered to Whips Cross hospital as they have a dermo vulval clinic and am still awaiting the appointment

I deff think its worth giving the whole Pelvic Floor thing a go.

I have been told I need to start dating again (been single for 2years) by Dr Glazer and to regain my sexual self lol If there is a sexual self left lol

I would tell anyone I was serious about dating regularly about the V from the outset. I would also not rush into intercourse but learn to enjoy other aspects of sex again.

Its a scarey thought and one that I have not yet ventured into yet as I really dont know where to start! Good luck with your treatment and keep us updated also good luck with the dating Smile

P.S. read my video consultation with dr glazer post. It tells you what he said about the pelvic floor and sex and dating

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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 10:17 pm

Thanks Sebby,

I will def have a look at the video consultation thread- interesting about Whipps Cross as well I didn't know about them! I think, yeah, I do need to bite the bullet and have a look at my pelvic floor. I think I've just been avoiding it because my general reaction to all this is hoping that if I ignore it it will go away or I somehow won't notice it, which is not very sensible really. I think it's because I just kind of resent its presence in my life so much I kind of want to show it what's what by just ignoring it (which I know is kind of childish and also clearly bonkers... Rolling Eyes )

Anyway I will definitely have to go about the dating thing differently if last time was anything to go by, and yes will keep you posted!

Anyway I'm off to read the rest of the board so I can 'meet' everyone.

God this is just such a stupid condition, you know? And it's not like walking around with a sprained wrist where everyone asks if your wrist is hurting and is careful of you and sympathetic. You can't just sit down with a group of strangers at a meeting, say, and say 'wow, my vagina really hurts today' and have everyone nod in sympathy! I think it's that aspect of it that annoys me most (which is why I'm glad I found this place!)

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Re: One more for the pot

Post  Mouse on Wed Mar 23, 2011 9:20 pm

Hey there and welcome!

Definitely give the physio a go, it's just nice to know what's happening down there. Physio has worked wonders for me =)

Maybe also acknowledge the bastard and attack it head on! There are some great resources for sex without penetration also.

It's awkward having a chronic pain condition of this nature. It does help to talk though, have you got a therapist? Most of us do, it's a crazy and frustrating condition, unloading all the frustration helps a lot. You could say to people you have pelvic pain, only the nosey or very stupid would ask further questions.

We are on FB if you would like to join, it's private and doesn't post to your wall. Sebby can hook you up with that.

So a huge welcome. I hope you find some helpful information. We're all doing the same thing every day and some of us are making great progress!

Vicki

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Re: One more for the pot

Post  naomi on Thu Mar 24, 2011 11:27 am

hello! welcome to the forum!

these girls are a bunch of nutters...but lovely nutters at that Smile

Nai xxxx
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Re: One more for the pot

Post  Sebby (Admin) on Sat Mar 26, 2011 6:05 pm


Yep it frustrates me too that I cant just come out and say "oh my vulvar really hurts today" like you can with other areas of the body but I do wonder if men with willy conditions feel the same? Im guessing they do...Hmmm wonder if there is a willy condition forum? lol

I've got my dermo appt through from Whips Cross, not till May but I did ask to be seen by the top consultant so I guess it would be a wait. I will let you know how it goes.


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Re: One more for the pot

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