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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

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

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


Hey, the latest on what Ive been doing

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Hey, the latest on what Ive been doing

Post  lavrose on Mon Oct 15, 2012 2:17 am

ok. So far, Im living a normal and completely healthy sex life for the last 2 months, and I just want to list what Ive been doing.

After being on the ABX for six months, Im currently taking my supplements which include multi strain probiotics, twice a day morning and nite, and water soluble vitamin E 400IUS morning and evening aswell as::

Coconut Oil: 2 TBS at nite (makes me quesy during the day)
Coconut water thruout the day
Womens multivitamin
800mcg Folic Acid once or twice a day
Cranberry pills, 2 a day
Beta Carotene (1 pill twice daily)

Im also reading up alot on vitamin deficiencies and vaginal problems. Lack of vitamin D and A aswell as B vitamins can apparently cause alot of problems, and Ive read on some forums of women curing themselves with Vitamin E (which I can personally vouch for) and beta Carotene, aswell as folic acid and Vitamin B6.
One lady said she hasnt had problems in five years since she started the beta carotene (about 75,000IUS a day) and all her lady friends also have had success with the regime.

Good Luck and God bless!! Love you guys! tongue flower
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Also...

Post  lavrose on Mon Oct 15, 2012 2:19 am

Vitamin D...
and Maca powder in my smoothies, about 2 TBSP a day everyday, and Spirilina, about 2 TSP.

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bladder

Post  lavrose on Mon Oct 15, 2012 2:22 am

I also want to add, my bladder is also feling alot better, since taking the Bactrim and Macrobid.

I think Ive finally beat this bladder thing too. (Fingers crossed)

I thought I was still having problems, and made an APP for a Urologist next week, but if I avoid acid foods like salad dressing, lemons, and tomatoes, I seem to be fine, so apparently I have some kind of scar tissue thing goin on, or residual pain from the interstitial cystitus, THANK GOD!!

Im thinking this nitemare is finally over. Please God let this be so. Keep praying.
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questions..

Post  lavrose on Mon Oct 15, 2012 2:34 am

I still cant understand what just happened to me with the interstitial cystitus thing that last 7 months. Why my urine wouldnt culture out for the longest time, why none of the antibiotics I was on worked. Why I was told I didnt have an infection when I know I did. Why NOTHING WORKED. Then one day, in the 6th month of this nitemare, that I was contemplating suicide over, I finally get a positive urine test for a UTI, (a bad one) and I was put on Macrobid. After the Macrobid, it came back, then TWO rounds of Bactrim and it was gone. WTF???? Idea

what the Hell was that all about?????what just happened to me??

was this an antibiotic resistant infection???or what? Its the scariest thing Ive ever been thru and I will never let this happen to me again.
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Re: Hey, the latest on what Ive been doing

Post  Darkhorse on Wed Oct 24, 2012 4:17 am

Hi lavrose,

It's great to hear of your progress and what you're using. Thank you so much for posting this and all the other information you do about your self-healing therapies (the suppositories)!! I'm following your posts a lot (though I've had some stressful bouts of "life" happening here, so haven't been on here as much as I'd wanted to be last couple of months.) Your story comes very close to what I'm discovering about (and what I intuited for ages) about my pains -- the infections being a culprit behind it.

I don't think infections may cause all cases of vulvar pain, but I think that's the ticket for me as well as you. Because I've done tea tree oil washes and hydrogen peroxide suppositories and even when I was told THERE IS NO INFECTION, it helped. So I know that there are bugs that either are bothering us in such small quantities that the tests don't pick them up, or they are bugs that have yet to have good/sensitive testing techniques for.

Thanks to you and your posts about the ureaplasma, I've asked my GYN for the same tests as they do at the Cleveland Clinic. He was skeptical, but he did the research and took the specimen and tomorrow I'm seeing him about results -- so I'm pretty anxious (I actually hope it's positive, because I want to NAIL this thing!!) What's interesting is that since I have so many other disabling symptoms (I have fibromyalgia and Chronic Fatigue Syndrome), I've gone through doctors who have blood tested me for mycoplasma, and I'm positive. This is a similar pathogen to ureaplasma -- it's a type of bacteria that has no cell wall, so it's a bit like an ameba that can morph easily and change shape. So the test he's done is for mycoplasma (which can like to inhabit the vagina/muscous membranes) and ureaplasma. It wouldn't surprise me that if I had a blood test positive for mycoplasma that it would be in my vaginal tissue. I hope this turns out to be true, because then I HAVE SOMETHING I KNOW CAN BE TREATED.

So I wanted to thank you so much, girl, for turning me on to the tests suggestion -- he was not knowledgeable of any tests for this until I read your posts about getting tested. Then he took it more seriously to look into it, and I'm crossing my fingers for my culture to show something informative.

I have two thoughts on the bacterial questions you ask:
1. I think as I said we may have infections that don't show up UNTIL you get enough bacteria for the lab to show it's positive. I don't have interstitial cystitis, but I used to have (and still do have) touchy/sensitive bladder and once had a bad bout of urethritis...and I kept getting negative tests until one day, it came out positive. What I found out was that to show an infection, you need like 10,000 bacteria cultured (not sure the units, but there's a NUMBER that needs to be met) to be "positive." What that means is that if you're below this, maybe bacteria are causing pain but it doesn't meet the criteria as being a high enough number, so we just suffer anyway and it looks fine!!! Grrrr!!!

2. My doctor (not my GYN -- he's an environmental doctor that does a lot of cutting edge stuff) is looking into chronic infections in me as a whole. And we are discussing biofilms. Do you know what those are? That's a gummy like substance that the bacteria make to hide from the immune system. All bacteria do this in nature -- the slippery stuff on rocks in rivers is from the film bacteria make. That creates a protective coat around them so that they are undisturbed by things that will destroy them. That includes antibiotics! So an antibiotic may kill off a certain amount of bacteria, but if the biofilms are there, it won't necessarily get all the bugs, and the infection will just restart. So that explains why the infection comes back again and again, I think.

There are some supplements out there, particularly nattokinase and lumbrokinase that are designed to break up biofilms in the body so that antibiotics (or natural herbal antimicrobials) can work better. So maybe you should research this if your infection comes back, or even just to take so that all your other herbal treatments help more. It's possible your bladder is STILL harboring some bacteria that have hidden in the biofilms. In which case it'd be more effective to take biofilm busters along with your treatments, to dissolve the biofilms and THEN kill the bugs.

Can I ask you:

-- which abx were you taking for 6 months? Several different ones? Or just the bactrim?

-- do you have other health problems, like fibromyalgia or chronic fatigue syndrome? Or do you ONLY have bladder/vaginal problems?

-- have you had a repeat culture to prove that you are negative now for ureaplasma?

Thanks again, hon, and hope you see these comments! xx

P.S. I have a few questions about your use of the suppositories to answer in the PM you sent me a while ago -- so I hope you keep checking here and your PM box!!




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