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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, …

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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 …

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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 …

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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: 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

New member thankful for this support system in this horrible nightmare

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New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Tue Jul 16, 2013 9:13 pm

Hello everyone. I am so grateful to have a place to tell my story. I apologize for how long this is, but I just need some insight

I'm 25 and was diagnosed with vulvodynia 2 months ago. My issues began last year when I decided to try the Depo Provera birth control shot. Biggest mistake of my life!!!! I believe this was the start of my vagnial issues. I never had a yeast infection/bacterial infection before the depo shot, though if I think about it I have always had instances of painful intercourse, and have never been able to wear tampons comfortably.

So, about 4 months into taking the Depo shot I began a terrible cycle of illnesses. I had the flu for months, and on top of that began having excess vaginal discharge. I visited my gyno at the time (second biggest mistake of my life) who didn't bother to take a culture and simply gave me a gel for BV. To my surprise the gel didn't help. I returned and was given the same antibiotic in pill form, which made the discharge worse. At this point I was not only dealing with discharge but began feeling a faint discomfort, a sort of burning, aching sensation. I switched to my primary doctor at this point, began taking a THIRD round of the SAME
antibiotic, and halfway through received a phone call from the  office informing me that the whole time they were treating the wrong bacteria. I began another round of antibiotics plus Fluconazole (just in case), and still didnt feel better, and began feeling pelvic pain and pressure. After a final round of antibiotics, this time for a UTI  (which I don't believe I ever had), my primary care doctor said she could no longer help and sent me to a specialist. At this point my stomach was a mess from the antibiotics and my vagina was red and raw and burning.  The specialist sent in a culture for everything you could possibly have, and prescribed the vaginal lubricant/prebiotic Luvena, which helped the pain immensely. The results of the culture were not surprising: Candida Albicans. I was so relieved I almost cried. I began a Fluconaole regimen of one pill a day for 7 days. I cannot describe my dismay when this didnt make me feel better. The red raw feeling went away, but I was still having faint aching, itching, and burning. The specialist informed me after two more visits that there was no yeast (by visual diagnosis only) and diagnosed vulvodynia. She prescribed Zoloft, which made me desperately depressed, new birth control which made me extremely sick to my stomach, and lidocaine. Now, about a month later, I've quit all birth control and had my first period after 8 months. A couple days before my period started I felt like I was on fire! I was in so much pain, the burning horrible. I switched to all cotton, organic pads and liners with no relief. Once my period stopped I took a second round of 7 day Fluconazole, but only had relief for one day before the aching, swelling, and burning returned. Unfortunately I have to wait a week to see the specialist again.

I'm so confused and tired. My relationship is strained by the lack of intimacy, and I'm at the end of my rope. Just when I think it's gotten too much to handle, it seems to get worse. I'm way too young to have a sexless relationship. Is there something the doctors are missing? My primary care doctor did inform me that I have a strep b overgrowth, but that they don't worry about that because its supposed to be harmless unless you're pregnant.

Is it yeast? Is it some weird bacteria? What the hell is going on? I feel like I'm trapped in a hideous nightmare.

Last edited by cupcake25 on Tue Jul 16, 2013 9:14 pm; edited 1 time in total (Reason for editing : Typo)

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Re: New member thankful for this support system in this horrible nightmare

Post  Sarah001 on Wed Jul 17, 2013 9:17 pm

We've all been down the UTI/yeast/B.V road so you're not alone, doctors "diagnose" those things because they are commonly found in women but the only way to be sure is ask them to culture a swab and a urine sample so they can see exactly what's happening. Don't use anymore creams or take anymore antibiotics until you know what's there and what's not because they can make matters much worse. If it is yeast they can do a lengthy treament of oral tablets only so that could be ruled out. If you found using a probiotic lube a great help I'd add a supplement orally too if you haven't already and Vitamin D3 is very good for the immune system so that might help too. It might be an idea to go down the hormone testing route if those things don't work, expect barriers if you ask though because lots of ladies get told it can't be done because of how our hormones fluctuate each month but stand your ground if it's something you want done, I'm not sure where you're from but here in the U.K doctors aren't keen to test hormones unless your cycle has become abnormal. I want to clarify that they also don't mean abnormal to you they mean abnormal by the general population standards. If you're from the U.S you have a much better chance of getting the test done without much resistance. The book "When Sex Hurts" is excellent for helping figure out the cause and available on Amazon, I highly recommend it and once you know what is a possibility and what isn't it will give you a list of possible causes and treatments to start working through. It also has more detail about the hormone testing too. Good luck and don't give up, but please don't just slap anything downstairs they give you because it can make things so much worse. Wink 

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Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Fri Jul 19, 2013 6:05 pm

Hi Sarah! Thanks so much for your response. I expect hormones to be my root issue. Hormones messed up by birth control mixed with my immune system being compromised  because of the golden combo of celiac disease + the depo provera shot = bad bad bad. If only someone had told me the depo messes with your immune system!!!! Shame on me for not researching...
Anyhow, considering I never suffered a vaginal infection prior to the birth control fiasco, I'm hoping once it's all out of my system my body will regulate itself. If it does not, however, hormone testing will be a necessity. I have a feeling right now the testing won't be quite accurate because I just quit birth control a couple weeks ago. I also realize once certain infections (like yeast) get a foot in the door it's tough to get rid of them Sad.

I've been taking an oral probiotic for my stomach for a year or so, and it works wonders for tummy troubles. I'm sure it helps down there as well, though my gyno swears it only works if you apply it down there.
I actually began taking a Vitamin D supplement a couple days ago, and maybe it's in my head, but I swear I already feel better...

Best wishes,

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Re: New member thankful for this support system in this horrible nightmare

Post  Elc88 on Sun Jul 21, 2013 7:58 pm

These stories all sound so familiar... Although if you have just had a contraceptive injection, is there a chance you have an STI/STD? It's another intrusion, but it's worth going to your sexual health clinic if your swabs didn't already test for it. Definitely stand your ground and say no more creams and pills until you know what it is. You can use emulsifying ointment on a daily basis as a moisturiser, which can ease your discomfort. It's a fairly neutral waxy ointment, most pharmacists keep it behind the counter, but it's not too expensive.

You are really lucky to only have to wait a week between Gynaecologist appointments - I typically had to wait between 16 weeks to 6 months!


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Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Sun Jul 21, 2013 9:01 pm

Hi Elc88! Thanks for your response.
Yes, I'm finding more and more my experiences are so similar to those of other women, which is heartbreaking. If only I had been more educated when this first happened--
I didn't even know what BV was!

Fortunately I have been tested about 1,000 times for every STD under the sun, and am clean. I have been in a committed relationship for a while as well. I was diagnosed with genital herpes years and years ago, but I never have outbreaks (knock on wood) and don't see any correlation between the issues.

I'll look into the moisturizer you recommended. It's worth a shot! Thankfully I see my doctor soon O_O

Wow, I'm sorry you had to wait so long for appointments. I've become so accustomed to being in the doctors office every week so that sounds like torture! Part of my issue is being impatient, though. I've bounced between doctors-- which did far more harm than good.

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Re: New member thankful for this support system in this horrible nightmare

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