Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
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.
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.
I tried many natural remedies to no avail.
This is a hidden, elusive bacteria, and hard to detect, hard to treat but SO LINKED TO IC!!
Ive done unrelenting research on this.
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.
Thanks again for sharing. If this works for me I'm going to make it my life's mission to spread the word!
I was so hopeful that I might have Ureaplasma and would finally have an end to this daily torture. I asked my OB to test for it and it came back negative. I was crushed. I just feel deep down inside that this is some sort of an infection. I have had IC for 3 years now- and I find it interesting that anytime I have been put on Doxy, Macrobid, or Cipro (for 10 days at the most) the symptoms dramatically subside. How could it not be something bacterial when you consider those factors. I know so many people counter that argument with the idea that antibiotics have an "anti inflammatory" effect on the bladder.
I have been reading a lot about this put out by the Cleveland Clinic. I have family there and they would really like me to come see someone there. Could you message me who the Uro you are seeing is. I would apprecitate it. Please keep me posted on your progess- good or bad.
I live about an hour away from Cleveland Clinic, and have beed suffering form IC for about 2 years now. My symptoms are not the exact same as most IC patients and I would like to know what Urologist you went to see. If you could message me that would be great. I can't seem to get anyone to help me with my urination problem and maybe this Dr will. Thanks.
I was diagnosed with IC in 2007. and I've lived for six years with "treatments" and "therapies" and "lifestyle accommodations." I don't respond to any of the traditional medications, and one urologist I saw told me I didn't even have IC. When I asked her what it was, she told me it was "complicated," and reccommended biofeedback. *sigh* This is the kind of thing that makes us IC sufferers feel helpless, and hopeless.
I honestly thought that I was just stuck with this, and that I would never, ever find out what was really going on. Research and information have improved a lot over the last few years, but no real information.
Long story short--last December I got Mononucleosis, which crapped out my immune system for 2 months, and caused my IC to go into overdrive: leg cramps, bloat, irregular menses, and of course screaming bladder pain 24/7.
My internist did the usual urinary analysis and found the same thing he always found: trace amounts of blood, some protein--evidence of something infectious, but no white blood cells. We've been seeing this for years, along with negative urine cultures. I've been prescribed several different antibiotics, which seemed to get the symptoms to a dull roar, but my internist was starting to get worried about antibiotic resistance. Scarey.
He referred me to a different specialist this time, one whose focus is "pelvic health," not just urinary problems. I couldn't believe it when her nurse called me yesterday morning with some real information: the "normal" culture came back negative, but they did another culture and found Ureaplasma. All she could tell me on the phone was that it was different from other bacteria, and needed particular antibiotics.
I had never heard of this before, and after I Googled it, things started to snap into place; painful urination, swollen bladder (I can feel the exact outlines of my bladder when I have a flare) problems voiding, burning, vaginal pain, painful sex, flare-up cycles . . .
I wondered if Ureaplasma mimics IC, or if there might be a deeper connection. If someone is establishing a causal connection, it would be a huge breakthrough in understanding this terrible thing we all suffer with.
Ureaplasma is a weird bacteria: it doesn't have cell walls. Most antibiotics attack cell walls, so no wonder they weren't working! Apparently Ureaplasma inhabits normal blood cells in some kind of symbiotic relationship, so it's REALLY hard to find. Also, since it's classified as an STD, many doctors (especially urologists) may not think outside the box enough to look for it.
One thing to know about this bug: it can kill you. It can migrate through your mucus membranes into your spine and brain (meningitis), into your bloodstream (sepsis), into your lungs (pneumonia), and a long-term infection can cause lasting if not permanent damage to the tissues it infects.
I don't know what the next few weeks will hold, but I feel hopeful about my IC for the first time in years, because this is a fact, real information, not just more guessing/conjecture/adjustment and grim acceptance. I also feel fortunate that somebody caught this, because it could have gotten a LOT worse.
If you have IC and you haven't been tested for Ureaplasma, please don't put it off. The possibility that you could find actual long-term relief from your symptoms.
Sorry this post is so long!! Like Roselav, I got so excited when I learned that there might be a (I'm still scared to say it) cure for me and others like me, something simple, without implants and other invasive stuff. I'll keep posting as the medicine works . . . or doesn't. Either way, I already feel better. Knowledge IS power.
One last thing: if you test positive and you're sexually active, get your partner tested. Because I'm so sexually dysfunctional from the IC pain, my husband and I have only had intercourse once in the last year. Nonetheless, he could now be a carrier (many people are and never have symptoms), and if he is, he can re-infect me.
I really hope this helps someone else . . . and if you're in the Dallas area, I have a really great specialist to recommend.
Im in Cheshire, Uk. thank you so much for your sharing your ground breaking cure with us.
It doesn't surprise me that this condition is caused by a difficult to trace bacteria. That is how it feels doesn't ? It feels as though something very noxious is attacking the bladder.
I have suffered for 5 years now and I too felt death would be better than the constant agonising nerve pain and urine retention. However I have a had a little relief with Lactulose. This is wierd I know because Lactulose is for the Bowel. But I then read that an ulcerated bowel can cause the smooth muscle in the bladder to constrict with all the symptoms of IC. I have just had a bowel scan so I will let you know if this is my cause for IC.
I will ask the Doctor to test for ureaplasma too. It seems to me that there may be several causes for my IC. After what i have been through I will pursue any successful course of treatment.
Do any of you guys get very bad sweats with this ?
Thank you so much for sharing your stories. The very thought of not having to suffer every day is so wonderful!
The problem I have is that the antibiotic doxycycline is giving me horrendous pain in my muscles which even pethidine cant control. So I have been stopping and starting and doing the best that I can.
Life has been an absolute nightmare.
I got to this tread by following something an other IC sufferer posted in the IC association website. I have lived with IC and all its horrific reality for almost 10 years now, This past year I tested positive for Ureaplasma and I took two rounds of antibiotics (two of the three recommended for this bacteria) I felt so much better , but not soon after I was done with the two rounds , my flares are back and my daily symptoms are just as they were before.
I am going in again to test for this bacteria one more time. But before I continue bombarding my body with more antibiotics. ( My body reacts in a very unfriendly way to them) I would like to know if any of you continue the long term antibiotic treatment?
Any of you had success with curing your IC symptoms by doing this?. I see the last post was in 2018. Can anyone please share what ended up happening for them with this bacteria and its connection to IC? Did it work? to take long term antibiotics?
Thanks for sharing