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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

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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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0

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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