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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 …

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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 …

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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 …

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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

My Vulvodynia maybe caused by over-treated Yeast Infection?

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My Vulvodynia maybe caused by over-treated Yeast Infection?

Post  debmommy22 on Wed Jun 20, 2012 1:17 am

I'm new here and need help too. I am 45 years old and this problem started off small back in Feb. 2012 with a yeast infection that went on too long. I didn't reconized it as a yeast infection because the symptoms were nothing like it. I itched at first around my urettha I think, it was weird. I thought I had a UTI. They found nothing. I went to a NP who said she found yeast and treated me for it. Then I thought I was fine. I had my period next and after was over, I felt sore on my vulva area and thought it was yeast again, so I treated it myself, dumb thing to do. I used Monistate and it did not improved and I used my left over yeast infection cream applied to my outer area/vulva only. It got worse so I go a pill from my GYN for yeast infection. Nothing changed. When I went back, I was red and irratated. I had suffered for over a month with terrible burning, stinging pain, also a pulling and tightening feeling down there. I stupidly thought if I kept using the yeast infection cream I would get better. It was so bad I could not sleep at night. I cried and cried at night to my husband who had no idea what was happening either. I "finally" realized when I didn't use the cream, my pain let up, but by then the damaged was done. I believe the cream burned and damaged the nerves and before that I was probably developing the vulvodynia and didn't know it. I think the 2nd yeast infection was not one at all now. I did this to myself or made worse something that had been coming onto me since Feb.

It has been over three months of pain seeing my GYN for steroids and estrogen cream that did nothing, in fact the steroid cream seem to irrated my skin more. Too much touch or activy especially while wearing underwear always makes it worse. I have seem my Nurse Practioner who gave me antiboitics then antivals, tested for STD's-negaitve results. I could have told her that! I married and we don't fool around but oh well...must rule everything out. I am now taking a Opiate-Percocet for pain so I can sleep at and function during the day. Otherwise I have to walk around without underwear all the time and just feel like isolating mostly. I don't work and could not if I wanted to again. I get SS Disabilty because I also have Bipolar II depression. This has only made things worse. I "want" to be cured, normal again. Why and what caused this for sure? I just want it to go away. I have felt broken, no sex with husband in months and I am terrified to try. I have a sore areas on my vulva on one side that even the opiates can't completely numb, I use Lidocane part of the time, but using it more than once a day can irrated the area more. I feel like I am sitting on sandpaper all the time. I was on Pristiq which really helped the VV and my depression added to the opiate and lidocane, I at times, felt very little pain at all. I felt normal, but I knew it was still there, just masked by the drugs. Crying or Very sad
I feel pain with and without touch. Touch is very bad. I can't even wash the area with soap anymore which drives me crazy! I do during my period because I just can't stand not to, but I never had douched or anything. I just use soap and water though I tended to rinse too much which left my skin dried out a lot, my husband and I always used a lubricant...but the extra rinsing has gone of for many years, no problems. I wonder if that contributed to me developing the condition?

Sorry this got so long. Probably not the right place to tell my story, but I need help advice from anyone and anyone who may have had the same experiences with this. I need some HOPE that I can heal...ALL of us can heal. No one treatment seems to help everyone, I have learned online. I am just going to have to keep trying and seeing the doctors and not giving up until I can find the right one to help me who, I hope, has compassion and understanding of my condition and truly wants to help. I hope it is someone with insight into this.

Thanks for any help!
debmommy (Deb.)


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Forgot to tell you

Post  debmommy22 on Wed Jun 20, 2012 1:28 am

Sorry I forgot to tell you that the Pristiq caused a terrible rash with raised welts at times and other time they were flatter and less red that appeared on my arms, legs, and trunk of my body. I found out after trying to stay on the med that this was a severe allergic reaction to Pristiq and I have stopped it. My face started swelling around my eyes and my lips swelling up like balloons, not both at the same time thank goodness. Got a steroid shot and benedryl. The "poison" is still in my system so still having a rash and swelling, but I think it is improving. Takes 5 to 7 days for the Pristiq to get out of my system. Need to find an antidepressant that helps that I am not allergic to. I do think they help the pain for me, for my Vulvodynia.

Thanks agian!
Deb. Smile


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Re: My Vulvodynia maybe caused by over-treated Yeast Infection?

Post  bluekangeroo on Wed Jun 20, 2012 9:06 am

Oh Deb, that sounds awful, what a horrible time you've been having...

Have you seen this; http://www.theglobeandmail.com/life/health-and-fitness/yeast-infections-linked-to-chronic-genital-pain/article595188/

thought you might find it interesting.

as you are at early stage, maybe they can do something about it if they understand what is going on?



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Thank You for the article

Post  debmommy22 on Wed Jun 20, 2012 6:29 pm

Thank you for posting the link. This really helps me. I can't believe how much sense this makes. It very well maybe what caused my nerve damage or V, I think they maybe the same thing. This is what happened to me for the most part. This is knowledge I can take to doctors if I need it, someone who will listen I hope. Smile The infections may have cause more nerve growth or irrated nerves I have, I may have more nerve endings than some women, just speculation.

Thank you so much again!... and for the private message. I will try to answer it later tonight.

Deb. Smile


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Response to over treated yeast infection

Post  Debbie627 on Mon Jul 30, 2012 11:58 pm

You are telling my story. But I figured it out. There is an ingredient called propylene glycol that is in yeast meds, steroids, lidocaine, personal lubricants, cottonelle pads, liquid laundry detergent, estrogen creams, shampoos, toothpaste, mouthwash etc. read your labels on any and all products that may potentially come in contact with your vulva. If you stop Using ALL of these, you will see improvement in 24 hours.

Let me know how it goes.



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Re: My Vulvodynia maybe caused by over-treated Yeast Infection?

Post  Loulou on Wed Aug 08, 2012 8:38 pm

Deb - i feel for you. I'm a similar age (47) and I too think my vvd was started or at least exacerbated by overuse of canesten cream and pessaries (like you i thought i had thrush but all the tests kept coming back negative tho my doc kept treating me for thrush!).

Once I was diagnosed, and after trying lidocaine which didnt work for me - made it worse, I decided to put AS LITTLE AS POSSIBLE on my vjay to try and help things calm down. Now I only use E45 wash/shower emollient to wash down there and I only wear knickers that have a high front gusset seam (usually 'granny' knickers so not very sexy i'm afraid!) so it doesn't rub on my tender bits. I found it definitely helped to leave it alone - things we/docs think will help can make it worse if the soreness and inflammation IS a reaction to overuse of thrush creams.

When the pain was really bad I relied on painkillers, camomile tea and relaxation techniques. The only thing I put on down there was a cold compress to relieve the burning. It took a while but my pain levels did decrease and I think it was because my body was able to heal to some degree without 'interference' from irritating topical creams.

Also pain causes you to tense internal muscles (without you being aware of it) so you might find some of your pain is from that. If you can see a physio to have your PF and other related muscles assessed I'm sure you will be able to get some relief from learning how to de-tense those muscles. Also get your pelvic alignment checked. My chiro diagnosed me with a tilted pelvis which she thinks has caused or contributed to my vvd. I never knew my pelvis was out of kilter or that my muscles were tense so i never would've thought of it as a cause or factor in my vvd. But since dealing with those issues I have been much better. (i also sleep with a small cushion between my knees and find this helps)

So there is definitely hope. i think the positive for you is that you've only had this since Feb (which isn't long compared to some tho I understand it will feel like an eternity for you) I started with my vvd in Nov last year and after a few months of agony decided on a 'do nothing to my vjay' policy because i hadn't had it long so thought there was a chance for this to work. Everyone's different but thought i'd share my experience in case its of some help to you.

Last edited by Loulou on Wed Aug 08, 2012 8:48 pm; edited 1 time in total (Reason for editing : explain why i was using canesten)


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