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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


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


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

Newly diagnosed...still unsure

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Newly diagnosed...still unsure

Post  MarieJo on Fri Jan 11, 2013 10:27 pm

Hello, my name is Marie and I am new to this board. I have had a rough time over the past year, but am feeling hopeful after finding this site. It's so hard having a condition that you can't really talk about to anyone.

My story started in March of last year. I had the first UTI of my life, took a 5 day course of antibiotics and went about my day. Two months later, the UTI resurfaced along with a new burning sensation. My doctor believes that the original UTI had never gone away. I was put on another round of antibiotics that took away my UTI symptoms, but never took away the burning sensation.

In my mind, I justified the burning as residual inflammation from having the infection for so long. After a few weeks, the burning went away and I thought I was in the clear. Then a few weeks later, the familiar burning returned. Over the last few months, the burning has come and gone with the time in between the "flares" becoming shorter and shorter. The burning is now constant except when I am sleeping or when I first wake up.

I went to my gynecologist who thought it sounded like Interstitial Cystitis. I then made an appointment with a urologist who did not think my symptoms sounded like IC at all. I do not have any frequency issues, bladder pain, etc. She instead diagnosed me with vulvodynia after doing the q tip test. She gave me a script for physical therapy and a compounded cream.

I just started the physical therapy this week....I guess I am just still worried that something is being missed. If I truly have vulvodynia, then I am prepared to move on and deal with it, but I can't stop this nagging feeling in the back of my head that says it's something else. I do have scheduled appointments in Feb and March with two different specialists, but it's so hard to wait when you are miserable.

I feel like I'm not giving the physical therapy my full attention because deep down I don't feel like it will work. Sad Is this a normal state of denial I'm in after being newly diagnosed? I guess part of my problem is that I really can't tell where this burning is coming from. My physical therapist had a model of the pelvis in her office and told me to show her on the model where the pain is, and I couldn't do it because I truly don't know. And as for the q tip test...wouldn't that be painful or uncomfortable for everyone? Dry cotton being poked or dragged along such sensitive skin seems like it would be similar to the feeling of pulling out a dry tampon.

I would really appreciate it if anyone could give really detailed descriptions of the burning pain you experience. Are you able to pinpoint an exact area? Or is it more general?

Thank you!


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Re: Newly diagnosed...still unsure

Post  meelie on Sat Jan 12, 2013 2:03 am

Marie, I am new here also, I was diagnosed in September after I had self treated for what I thought was a yeast infection. After the monostat didn't work I went to the walk in and was diagnosed with BV. He took samples for tests for STDs, BV, yeasts and I don't know what else. Was put on Flagyl and another yeast medicine. All the tests were negative and then he put me on Estrace vaginally and a steroid ointment to the perinium. No results.
Anyway, to answer your question my burning is just generalized all around my labia and vulva. Like you the only relief I have gotten is when I'm sleeping and for about an hour after I get up. Then the discharge starts and the burning starts again. My pH according to my gyn is normal. I was just put on Neurontin last Friday along with a muscle relaxer. I also have been going to my chiropractor every week at first now every 10 days. Yesterday and today have been the best days I've had since Sept. 4. I do not know what is helping. A yea a whole lot of prayers also. I am still burning but most of the last two days have not been as bad as the other ones have been.
I don't use any soap on my vulva, just warm water and have quit using deodorant soap at all, using Dove bath lotion.
I hope I answered your question.
Oh yes, the reason I thought of the chiropractor is because I suffered a fx pelvis a year and a half ago and have not been able to relax my muscles down there since.
I have set on my right buttock since the accident and I figured I have pulled my sacrum out or something from the constant tension. I have also had a very very stressful fall emotionally. I'm figuring all of that is contributing to my problem, especially since I cannot relax.
Hope this helps. I'll keep watch for your reply.


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Re: Newly diagnosed...still unsure

Post  Sarah001 on Sat Jan 12, 2013 1:49 pm

Hi Marie, my V started the same way from my first ever UTI and I spent quite a long time thinking it surely couldn't be the pelvic floor. I have a very unstable pelvis but I still couldn't believe the pelvic floor could cause my symptoms then I started doing alot of research and finding lots of women who started thie same way and it was indeed the pelvic floor because they got on top of it with physio (PT) so I took myself off to get my pelvic floor checked and it's the tightest pelvic floor the physio has ever seen in her 30 odd years of practice. I find now if I can avoid clenching it makes my pain much less and if I clench it gets much worse. Because of my unstable pelvic joints I haven't had the trigger points removed or any stretching of the muscles done yet but I can now see the connection. I think it's quite normal to think it can't be the pelvic floor, I know lots of women online who sound like very typical pelvic floor cases who are reluctant to even get it checked because they can't believe that's their problem so it's good you've taken that step. UTIs can cause the PF to spasm because of the irritation so it's perfectly plausible that's your cause. If you're worried about other causes you can go to a GU clinic and be tested for all infections, try a week or so of 1% hydrocortisone cream to see if it might be a skin condition and of course cut out all chemicals to the area without needing a doctor to do those things with you. The q tip test is a very light touch so women with no pain wouldn't really feel anything except a light tickling sensation but of course it only tells us what we already know, we have pain there! Try and make good of your PT sessions because if the PF is your cause it could be your answer and you can still try other things alongside the PT you don't have to try each thing seperately. Your PT should be able to tell if you have spasm in your PF and I assume she can feel some or she wouldn't continue with treatment so it's a necessary step to carry on with it. Regarding the UTIs I get repeated ones since this started and my physio said it's because the tight PF inhibits the detrusor muscle and the detrusor muscle is responsible for emptying the bladder so incomplete emptying leaves urine in the bladder which makes us very susceptible to infections. Makes sense when I know the technical reasons! I do double emptying to try and get as much urine out as possible each time and try to keep my PF as relaxed as I can get it to help with the pain. There are a few of us having PT in the physiotherapy and biofeedback thread so if you want to talk more about your sessions you'll find us in there! Wink

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Re: Newly diagnosed...still unsure

Post  MarieJo on Sat Jan 12, 2013 5:01 pm

Meelie- Thanks for taking the time to reply. I am glad to hear that you have been feeling better lately. I can totally relate with not knowing what is helping or making the condition worse. Mine seems to have no rhyme or reason for what causes it to flare up or get better.

Sarah- Thank you for the PT pep talk. Smile I know I need to stick with it and give all my effort. I think if I could just get my stress level under control, I would be so much better off. I've just been so worried for so long about what is wrong with me. On top of that, my husband and I had plans to start trying to conceive right when all this started happening. I think that is just adding to my stress because it's starts a vicious cycle of worrying about my biological clock ticking and seeing no light at the end of the tunnel with this issue. I've only had 2 PT sessions so far so I know I need to just be patient.


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Re: Newly diagnosed...still unsure

Post  Sarah001 on Sat Jan 12, 2013 5:46 pm

Ask your PT about some deep breathing exercises Marie, not only will they help relax the PF but also help with stress. You're very welcome for the pep talk and I hope you start making some progress really soon.

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Re: Newly diagnosed...still unsure

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