Vulvodynia Support
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» Hope to all my suffering ladies
Interstitial cystitus and Vulvodynia cure EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Interstitial cystitus and Vulvodynia cure EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Interstitial cystitus and Vulvodynia cure EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Interstitial cystitus and Vulvodynia cure EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Interstitial cystitus and Vulvodynia cure EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Interstitial cystitus and Vulvodynia cure EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Interstitial cystitus and Vulvodynia cure EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Interstitial cystitus and Vulvodynia cure EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Interstitial cystitus and Vulvodynia cure EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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 …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Interstitial cystitus and Vulvodynia cure

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

forum.prostatitis.org/viewtopic.php?f=2&t=434



https://groups.google.com/d/topic/sci.med.prostate.prostatitis/YVpEUHw6fTU


forum.prostatitis.org/viewtopic.php?f=2&t=434


www.curezone.org/forums/fm.asp?i=1981918

reato.com › Drugs › Zithromax

Marylynnreily
Marylynnreily

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Post  Marylynnreily 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!!!
Augmentin
Zithromax (z pack)
Doxicycline
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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