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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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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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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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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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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