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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

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 …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Interstitial cystitus and Vulvodynia cure

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Interstitial cystitus and Vulvodynia cure

Post  Marylynnreily on Sat Jul 09, 2016 3:40 pm

Listen you guys. Ive been fighting this for five years, and it has destroyed my life. I cured it TWICE. Ive been on every juice, herb and supplement known to man, and they all help. BUt the only thing that Cured me, and I WAS diagnosed and ready to do all the IC treatments and Elmiron, was antibiotics. The first time, I also had Vulvodynia with IC, I had an understanding doctor, and was put on 3 WEEKS of Clindamycin, and I was cured. To prevent an intestinal problem called C DIFF (a dangerous intestinal infection that can happen from antibiotics completely wiping out your good bacteria, and allowing the bad to take over)which can happen on antibiotics, especially clindamycin., I took massive amounts of Kefir, and followed the directions on the bottles for oregano oil, and Grapefruit seed oil and Propolis everyday in between the antibiotic doses to prevent this, and it worked.. Please talk to your doctor, i am NOT a doctor. Clindamycin is such a broad spectrum ABX, it is the one that causes C DIFF more often than any other, and thats why doctors hesitate to prescribe, but hey, it cured whatever I had, when no other ABX could. I was clear for about 2 years. After my C section I got it again after sex,when I was very tight and 3 weeks after c section. Could never culture out for a bladder infection even tho I was in debilitating pain.Its been a year of Hell, and I was ready to go on all the IC treatments again. I tired diet again. Didnt help me. Im currently on Biaxin(for a respiratory infection) now day 7 all symptoms are gone. Hopefully it will stay this way.

what caused me to learn about clindamycin as a treatment, was researching prostatitis, actually and I found a link to a guy who cured it with clindamycin. He did get mild colitis from it, and his doctor helped him with that accordingly.. Speak to your doctor, colitis and C diff could end up being side effects in some people, so be careful. I AM NOT A DOCTOR.Guys, this IS an infection, its a bacteria, mycoplasma, ureaplasma infection. ANTIBIOTIC RESISTANCE IS REAL> , and it seems they are ineffective.These small bacteria are very resistant nowadays. Why we cant cure. Not all infections progress to the kidneys. Sometimes the bacteria just hangs out in the bladder for years. Women and men who become prone thru REPEATED infections, get this bacteria lodged in their urethra more easily, and it gets harder to cure aswell. This is what happened to me. After the first 4 or five bladder infections, I was getting them from anything and everything all the time. Finally I got IC. Ive also had good results with a product called Monurol, I was cleared of symptoms for a week and then it came back. Ive also read on the IC boards of women who cured with one or two coursed of azithromycin after testing out for ureaplasma infection. Please research urology at the Cleveland clinic, and ask got a test for urea-plasma. Ask your docto..

Basically the normal flora in your vag, all the sudden gets lodged in your urethra very easily now because of scar tissue from repeated infections. Your body is not the same, Prevention is key. or you will get it again. I was careless and I got it again. You cannot afford to get bladder infections, or you will end up with IC, a bladder infection they cant cure basically. Cranberry, and methanine, (from Azo) is a must everyday for the rest of your life. The 2 antibiotics I tried were unusual and not prescribed very often. My theory is bacteria is not as resistant to them, but are very resistant to drugs like Bactrim, Macrobid, Keflex, etc..

If you research Lyme disease, theyre problems are similar to IC. I was always ont he Lyme boards. I even thougtht I had Lyme!They get on very strong courses of antibiotics. Please consult your doctor.

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Re: Interstitial cystitus and Vulvodynia cure

Post  Marylynnreily on Mon Jul 11, 2016 4:27 am





reato.com › Drugs › Zithromax


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Re: Interstitial cystitus and Vulvodynia cure

Post  Marylynnreily on Mon Jul 11, 2016 4:40 am

Ureaplasma, is an IC breakthru!!!!!!

Posted by: deleted_user 4 years ago Mood: Ok
I was recently diagnosed by a cutting edge Urologist with Ureaplasma. Hardly any urologists test for this, and if you ask them for a test, they will either say they've never heard of Ureaplasma or no!! As many Urologists do not believe in Ureaplasma being a cause for IC.
The reasons are ::
A. The test is expensive
B.Treatment requires long term, strong antibiotics
C. Because Ureaplasma is considered "normal" genital/bladder tract "flora" (actually a malignant bacteria) in 70% of the adult sexually active population (men and women) it cannot be a factor in IC.

Its considered a sexually transmited disease but not. Its not considered an STD. People arent born with it, they get it thru sex. But so many people have it, and it doesnt cause a problem for them, many docotrs and urologists dont see it as a problem. However there's a theory that some people are actually "allergic" to it., or there immune systems arent stronf anough to handle it.
Ureaplasma has been linked to miscarriage, early deliveries, and infertility as well as INTERSTITIAL CYSTITUS.
It is also linked to chronic vaginal and yeast infections aswell as Vulvodynia.
In Cleveland Ohio, at the Cleveland clinic. They are cutting edge on the research of interstitial cystitus.
They BELIEVE IC is caused my Ureaplasma. Please guys, do your research on this and prepare to fight to get tested and treated.
Many Urologist will insist on other treatments that dont work!! In their minds, a negative Urine culture means you do not have an infection. And ther is more and more hype about the overuse of antibiotics. They insist on addressing the symptoms, but not the cause. If you have to, Find a gynecologist, or fertility specialist that test for it. As more fertility doctors are open minded to it then Urologists. Lie and say your trying to get pregnant, even if your not, and you wanna test for Ureaplasma.
There are only three antibiotics that work against for Ureaplasma. This is war!!!
Zithromax (z pack)
For many women it takes several rounds, and months to years of low dose antibiotic treatment to eradicate Ureaplasma. Keep retesting.
Im currently on Augmentin, before that, I did one z-pack. I feel 98% better, but even after finishing these antibiotics, the pain may return. The answer is long term, antibiotics. Many Urologists claim they get a cure rate of 50% of their IC patients after treating them for ureaplasma and eradicating it.
I was lucky enough to find a urologist that sees the connection, and is willing to try all avenues to help me. Because she is so far away, I had her order me a retest at my family physicians lab. I called 4 other urologists in the area and they dont know what Im talking about and refuse to help me. I was lucky to find her. Fight, fight, fight to get tested and treated!!!!! Please do your research guys, this is truly a breakthru.
I asked God to help me, and he did. Its a miracle.
ok, UPDATE, been two weeks since I wrote the last post. 2 Z (zithromax) packs later, and a full course of augmentin, and currently on Doxicycline, I am all but cured!

I am floored and silent about this. I am in shock and humbly thank God for literally saving my life.
My Vulvodynia that I have been living with for over decade seems to be gone too.
16 years of pain and suffering, and it is all gone. Gone. Everything. All the diets, and alternative medicine, healers and natural medicine, homeopathic remedies that helped me try to live with this situation, and I feel back to when I was a child.
The answer was strong and Long courses of antibiotics. Ureaplasma was the cause.
Also, i want to add, because I did feel like I was the only women suffering from somethng I knew in my heart was not normal, i read that not 70% but maybe 40% to 50% of the population has this thing. Becuz of more people had it, I think it would be more recognized, as it kinda ruined my life, for a long time.

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