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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, …

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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


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

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

New to this, here is my story.

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New to this, here is my story.

Post  NJay12 on Thu Nov 01, 2012 6:09 pm

I used to be a healthy person who rarely got sick. My worst (and possibly only) health diagnosis I have really ever had is hypothyroidism which was discovered a good 5 years ago. I take levothyroxine daily ever since the discovery and have been fine since. However, a year ago I started feeling a pressure/heaviness in my pelvic region. I went to the doctor who ran a bunch of tests and couldnt find anything other than an ovarian cyst in which they told me was the cause of the pressure/heaviness in my pelvic region. I accepted that answer, however, a month or two later my vulva became enflamed and sore. It's never really itchy, just very red and sore. I went back into the doctor who diagnosed me with a yeast infection. They gave me diflucan and an over the counter prescription cream to use-- which didnt help. I went back in after that dosage was done and they told me that they didn't see any yeast but they would give me another round of prescriptions anyway to see if it would help clear up any small amount of yeast that might be left that they're not seeing. This again, didn't work. I am married and have been with the same partner for 7 years but I had them run STD tests anyway, just to rule that out and those all came back negative. No UTI, no BV, everything was clear. Eventually the soreness and redness either went away or at least toned down because I didn't notice it anymore. Until a few months later it came back- again another round of yeast meds for yeast they found- again it not helping, but then eventually weeks down the road going away. It came back for the 3rd time a month or so ago but this time it came back with urinary symptoms which I was then diagnosed with a UTI. (They didn't find any yeast this time so no yeast meds this round.) I've never had a UTI before in my life, but after having this one I realized thats what the original pelvic pressure/heaviness was that I was feeling at the start of this. It was the exact same feeling- even though when they checked me back at that time, the cultures and tests were all negative. Anyways, after trying 3 different medications it finally cleared up the UTI and the urinary symptoms went away, but the vulval soreness and redness is still there. My gynecologist explained to me the condition of vulvodynia, showed me the ropes on using the right soaps, buying the right underwear, etc. (which none of that seems to help.) and now, even with no UTI, the urinary symptoms come and go. I think it MIGHT be related to my hormones and my cycle- as I notice the week before my period and the week after the vulval irritation is horrible. But at any rate- I am accepting the answer the doctors are giving me which is vulvodynia and IC.. it just still shocks me how it came about out of nowhere. One day i'm fine, and now im battling this. One thing I had noticed since the start of all of this was it was also accompanied by lower back pain. I recently decided to see a chiropractor to see if that would solve the issue but all it's really done is taken away the low back pain. But I'm also on my 3rd week at the chiro so maybe I just need to give it time...

I'm so glad to have found this forum. It's nice to hear from people with similar stories as mine, even if it is unfortunate that we have all come together over this very annoying issue..


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Hi! And here's my story

Post  angrybird84 on Thu Dec 20, 2012 9:11 pm

I'm new here too. Your story sounds similar to mine, so I will share ... and I think you'll understand exactly where I'm coming from.

About a year and a half ago (August 2011), I had a short-term relationship which I ended because the guy was an asshole. It was after I slept with him I started noticing severe vaginal irritation. I went to the doctor who prescribed creams. Nothing helped. It turns out it was a yeast infection, but one dose of diflucan and it was gone. And then shortly after, I ended things with the guy.

Less than a month later, I met my current boyfriend. We'd been having sex for about a month and everything was fine with that - no burning with this man at all (before I go on, I am "unofficially" engaged to this guy now!). However, I went in for a routine urine test in January of this year ... just to check to make sure I got no STD's from the previous guy. I never heard anything about the results from my doctor, so I figured everything was fine.

On the evening of February 10th at exactly 6 p.m., my whole life basically went out of control. That's when I first noticed the terrible burning after I went to the bathroom. (Don't mind me with my exact knowledge of dates, I'm OCD and I'm a news reporter). Over the next 24 hours, it progressed extremely quickly. While at work the next day, I started noticing huge amounts of blood in my urine and I almost fainted from the combination of the pain and just looking at the blood. One of my coworkers used our radio station's community cruiser to drive me to the nearest hospital ... it was kind of funny, but heck, we promoted our brand at the same time. My boyfriend rushed down to the ER to meet me, and after about two hours, I was given a diagnosis of a UTI and handed Macrobid, and then told to "eat a bagel" and go home. Going home was hell. I couldn't sit and when I got home, the pain tripled in intensity. This is coming from someone who has a congenital heart condition and has had three heart operations - I'd never felt anything like this in my life.

In the end, it eventually calmed down that night. The antibiotics seemed to kick in immediately and so did extra-strength Tylenol. I stopped peeing blood by the next morning. But then the symptoms never went away entirely. I kept returning to the doctor or the nearest emergency department, only to be told the UTI wasn't gone and they would put me on additional rounds of antibiotics. Then a few days later, I'd get a call saying I didn't have a UTI and to go off them. This happened THREE times, and over a period of four weeks, I must have seen my family doctor and the ER department at least eight times. One time I was admitted for the day and given an IV morphine drip - but all that did was make me itchy, exhausted and nauseated! I remained in severe pain, between the burning and stabbing sensations. There was also a guess from my family doctor that I may have passed a kidney stone, but a CT scan showed my kidneys were clear. A bladder ultrasound a month later showed there was nothing wrong there either.

In the midst of this, I found out from a resident at my family doctor's, that my urine test had come back positive for infection, and NO ONE called me. I am disgusted to this day, because now I believe my vulvodynia could have been prevented if this infection had been taken care of immediately in the first place. I am continuing to look for a new family doctor, because my current one has been useless and has not taken any initiative in helping me get back to normal. The other problem was I was having trouble going into work. Working at a radio station means you've got interns nipping at your heels all the time. I didn't want to call in sick because I knew that meant I was putting my career in jeopardy, but there were literally days I could not get out of bed.

This story is getting extremely long, so I will get to the point. After what must have been 10 specialists, four rounds of STD tests, 10 urine tests, and god knows how much else, I saw a specialist yesterday who diagnosed me with vulvodynia. It has been one hell of a year ... the pain never goes away for more than an hour, but even then, the area remains sensitive. There are some weeks where I work very hard to function normally, and other weeks where I can cope well. I was better for a few weeks in April, and then from September to the middle of November, but my boyfriend and I had sex three times in a week and then suddenly, I was thrown back to the way I was in March. I tried not to let it get to me this time. I've just been promoted to news anchor at my job and I can't let this get in the way, so I don't. I work through it, even on my worst days. I just make sure I have an ice pack with me at all times, and that I don't wear jeans.

Dealing with two chronic health conditions is a pain in the ass, but at least I know this isn't all in my head. I'll be tested for IC in a few months. Dreading the cystoscopy but what else can I do? Besides, at this point, whether I have IC or not won't make much of a difference. It will just give me peace of mind, knowing I won't be tested for a million STD's anymore.

This is how vulvodynia has affected my life:
-I haven't worn jeans or belts in 10 months. Doing so causes such severe pain that I only last for a few hours and then suffer for the next day or so.
-My boyfriend and I rarely have sex. He worries every time we do that it's his fault I'm in pain, because these issues only came up since we've been together. I feel so bad for him. Luckily though, he is EXTREMELY understanding and never complains. Don't know how I found such a good man!
-I carry an icepack with me at all times, even in the newsroom!
-I can't wear tampons during my period.
-My periods are absolute HELL. The combination of the blood on the pad burning my skin and the feeling of the blood coming through my vagina is horrid.
-I can't go swimming or dancing - swimming is not a big deal, but I love to dance, so that sucks.
-I can't sit through movies. I love baseball and football, but I usually sit through games in severe pain.
-I have to drink a lot or it burns like hell (both inside and outside) when I pee. Tea makes it sting, but I won't give it up because it's the only thing I can drink in the morning.

However, I think I'm coping quite well with it otherwise. In the past year, I got a major promotion at work and achieved my career goal - at the age of 28!, had my boyfriend set our wedding date (the ring will come soon!) and enjoyed an incredible road trip - even in severe pain!

Every day, I try to focus on what is so good about my life ... focusing on that helps to alleviate the pain a little bit. Not sure how I'm going to go about my treatment because everything costs so much money.


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Join date : 2012-12-20
Age : 33
Location : Canada

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