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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1


Looking for answers

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Looking for answers

Post  alessandria on Sat Dec 07, 2013 6:09 pm

Hello all! I've been lurking on this website for a while, and was hoping to see if anyone else has a similar story to mine. I had always been a very sexually healthy person in the past, and was the type to want sex multiple times a day if I had the time for it. I never even had cramps or an unmanageable period, a UTI, a yeast infection, anything even slightly amiss until about two years ago. It was then that I got what I assumed at the time was my first yeast infection. My normally translucent discharge had become thick and white, and I was terribly swollen throughout my labia, vagina, and clitoris. I emailed my doctor, who was certain that it was yeast when presented when my list of symptoms. When the Monistat did nothing, I scheduled an appointment with her -- while she thought my discharge surely looked like yeast, the culture came out totally negative. All STD checks were clear, every single test came back negative. They recommended at that time that I switch to all-cotton underwear, loose-fitting clothes, change my laundry detergent, and a thousand other things that just didn't help. I kept trying to have sex for a while, but it was so excruciatingly painful that sometimes I even bled afterwards from how raw and irritated my skin had become. My discharge remained strangely altered, to the point that all 5 doctors were initially certain I had a yeast problem on exam, but no culture ever came up positive for yeast. When I was diagnosed with V originally, I was in denial and desperately hoped that the doctor was somehow wrong. The way she portrayed it was that I was, at 23 years old, going to have to deal with the fact that I was never going to enjoy sex again. I found it too devastating to deal with, and stopped going to the doctor for about six months' time. I did everything in my power to get healthy and somehow change my fate, from running every day to eating an immaculately healthy diet. I found that while my 24/7 V pain had disappeared, I still had stabbing pain with any insertion, and still had this strange yeast-looking discharge at all times. I grew increasingly terrified about sex, and my libido decreased from being higher than any of my friends, all the way down to zero. Because of my problems with V, my relationship of years fell apart, and I am now single. I get asked out on dates all the time, but am too scared to go out with anyone because I know sex is a normal human expectation in relationships. Thankfully, I have a very full and exciting life other than this issue, but I'm not thrilled about having my sexuality taken from me. I'm scared I'm going to live and die alone, even though I'm a perfectly good person, because of V.

Here's my problem as it stands: I no longer have generalized V, and it's primarily only provoked. I only have maybe a day or two each cycle that I feel some discomfort/irritation, but it's maybe 2/10 on pain and can be ignored. My Q tip test was actually negative in my doctor's office this last time, which meant that I don't get to be referred to the expert (who prioritizes her time for only the most severe, cannot wear jeans without 9/10 pain type cases). For now, I have been referred for physio, since the new doctor said that I have constant tension in my pelvic floor and I cannot relax my muscles properly. Has this helped anyone? I really feel like the fact I still have this yeast-like discharge signifies that I have some kind of infection or underlying physiological problem in addition to muscular problems, and I'm disheartened that I cannot go to the expert because my case "only" prevents me from having sex.

My questions for you all:
1) Did anyone else have a dramatic shift in their discharge when their V started? Does anyone know what it means?
2) The expert I'm close to uses a YAG laser for therapy, has anyone had experience with this? I know I'm less important than the expert's other patients because my days are quite pain-free as long as I don't have sex, but I still think I deserve to get my health back by whatever means possible.
3) Has anyone been able to restore sex drive and ability to be attracted to people since suffering from V?

Any help is greatly appreciated Smile

alessandria

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Re: Looking for answers

Post  EviE°Bee on Sun Dec 08, 2013 7:43 am

Wowie. I'm sorry to hear about your relationship. Crying or Very sad 

Let me begin with the pelvic floor muscles, from my own personal experience, when engaging in sex my brain is automatically programed to mess up my libido. I know penetration is gonna hurt either a little or alot and I'm gonna have consequences to deal with after (burning, irritation, etc) and I'm gonna have a laundry list of things to do to try and alleviate this pain. All the worry/frustration/confusion will cause a dry vag and stiff muscles. Some say pelvic floor therapy helps, some don't. You lost ur relationship from this which is more pressure when it comes to performance, the next beau who comes into ur life and maintaining your VV symptoms. VV treatments are different for everyone so try and stay positive and maybe look into calming excersises or go see a sex therapist while trying different V treatments. There are so many things that can be done in the bedroom, try not to let VV get the best of you. Unfortunately, this includes non-penetrating sex.

YEAST!!!! I've been having yeast problems the last 2 years. Like you, I never used to get them but I seem to get one once a month. I don't think mine ever goes away. My yeast symptoms differ then anyone elses as well; I itch like crazy, but no discharge, no foul odor. You can try Candida Diet, some people say it helps but I've yet to try it (bleh) you can see if that helps.
My thoughts on discharge is that it must be hormone related. We discharge regularly but more during ovulation. Ph balence is off for some reason.

This didn't really answer any of ur Q's lol but I guess I just wanted to let u know that ur not alone in ur struggles babe.

EvieBee

EviE°Bee

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Re: Looking for answers

Post  The_Joker on Sun Dec 08, 2013 1:27 pm

Hi Alessandria,

I was really interested to read what you had written as I too have the same change in discharge from normal and clear/translucent  to constant thick/white and opaque at all times. I wondered whether this might be hormonal but it only really started when the V symptoms appeared. I did read somewhere that if the tests come back negative for yeast, then the discharge is thick and white because it contains leucocytes (?)/skin cells ie there is some inflammation somewhere and the body is trying to clear itself by shedding more skin cells as a reaction... this made sense to me anyway!  Not sure if this helps you at all but might explain why you have the change in discharge, either that, or the doctors are not testing the discharge for all types of yeast only the most obvious ie Candida albicans.

The_Joker

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Re: Looking for answers

Post  Leslieg on Sun Dec 08, 2013 2:25 pm

I would definitely give PT a try to relates probable muscle tension. Have you tried a quality probiotic for vaginal health. (Ultimate flora or fem dophilus)?

Leslieg

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You are all amazing!

Post  alessandria on Sun Dec 08, 2013 6:39 pm

It was so great reading this from you all this morning, thank you!! Even though I would absolutely never wish VV on anyone, it is comforting knowing I'm not the only person going through this. EvieBee, I definitely think a lot of the problem with getting back to normal after VV is all of the programming our brains have done to suggest that sex is going to be pain -- it's like the classic negative reinforcement experiments they teach you about in psychology class! It makes me super curious though how we can reprogram ourselves back to not being afraid, and I'm sure that will just be a matter of persistence and finding someone patient enough to work through all the issues. I've been thinking of doing some reading on how former victims of sexual abuse learn how to reprogram themselves to enjoy sex again, since they have also gone through some very negative experiences associated with sex, and I am guessing the topic is a lot more researched than VV is. Maybe there are some good techniques out there for us to try! I still suspect that my problem isn't yeast, but at the same time, I'm not sure what specific cultures have been done to see what might grow (and it would be so, so cool if this was something easily treatable, like yeast!)

The_Joker, the crazy part is that they did a full analysis of a sample from me, and didn't find increased epithelial cells or leukocytes! I have no idea what exactly is making the discharge so opaque, it's like some kind of medical mystery. I have read previously that some yeasts cannot be cultured by the time they are in discharge, either due to being outside of their normal environment or being already dead by the time they are collected for analysis. I wish my physicians were a little bit more communicative to me about what they are doing and whether they are really doing everything in their diagnostic power to figure this one out.

Leslieg, I haven't actually given the probiotics much of a chance yet! I took mine for about two weeks, and then felt like I was getting a UTI or something and immediately stopped. I am considering trying again though, since I could definitely see altered vaginal flora being a cause for VV. I've also bought a ton of yogurt and should probably start actually eating it Smile Hopefully the PT helps, too!

alessandria

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Re: Looking for answers

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