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» Honey decreased my pain considerably!
Yesterday at 12:53 pm by mhhh

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» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

» Newbie and feeling helpless
Thu Jul 12, 2018 6:35 pm by emalita

» Using dilators
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» Hello. In Need of Advice, Please and Thank You. Long Read.
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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 5

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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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lavrose

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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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