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Herpes causes interstitial cystitis/bladder pain
It has come to my knowledge, the reason why no doctor or lab can figure out what cause interstitial cystitis is because it comes from herpes, now everyone knows Interstitial cystitis is the outcome.
Find a cure for herpes and we will have a cure for IC.
The cure is in your ph balance.
For some relief.
Try:
1/2 teaspoon of baking soda in a cup and fill it up with warm warter. baking soda needs to dissolve.
I am not a doctor. Please check with your doctor about the side effects of baking soda if theres any.
please do not overdose on baking soda.
Doctotors, have you ever consider thats the reason why ?????????????
Find a cure for herpes and we will have a cure for IC.
The cure is in your ph balance.
For some relief.
Try:
1/2 teaspoon of baking soda in a cup and fill it up with warm warter. baking soda needs to dissolve.
I am not a doctor. Please check with your doctor about the side effects of baking soda if theres any.
please do not overdose on baking soda.
Doctotors, have you ever consider thats the reason why ?????????????
I have had IC for thirty years and it began after childbirth. I was treated by urologist but got no general relief so eventually learned what made it worse ( coffee, chocolate and citrus) and when it flared, I avoided these, and made sure I fully emptied my bladder. I also learned that a tsp of baking soda in a fourth cup warm water helped, as did puridium. Finally, I came to associate it with herpes outbreaks and would take oral acyclovir when I had outbreak. It is a nuisance...heating pads and good self care to anyone dealing with this!
1 Comments
I have herpes and a recent diagnosis of IC from a urologist, but she said herpes can be the cause of IC symptoms. Did oral acyclovir help you?
First of all please try to remember, everyone is different. They will react to meds that others will not. So to suggest that someone is wrong, would be ignorant on our part. Anybody doing research on this can figure out that everybody is different.
I was diagnosed with IC back in Sept. 2014. It has been one hell of a ride as anyone who gets any of these symptoms know. It took many many visits to my primary care dr. for me to finally get really mad and insist on seeing either a urologist or gynecologist to figure out what was wrong. The primary kept doing urine & blood tests. They came back negative so he decided it was in my mind and tried to force anti-depressants on me. After 8 visits of that, I demanded to see a specialist.
Since seeing the urologist & not that dr anymore, she has tried several meds for me. Nothing is really working right now. I am taking the Elmiron but not in the full dosage as I get some of the side affects. Like one of the ladies above said, it takes about 6 to 12 months to see if it's working or not. I get instillation's every week & have since Sept. 2014. I love this urologist because she is bound and determined to figure out how to resolve my pain & issue. I do a lot of research also. I have tried Valtrex as she said I tested positive for the herpes but says it's inside the bladder. Anyway, I tried that med & within the 1st day it made everything worse. By the 4th day I stopped taking it. That sent me to the emergency room with the worst pain I have felt yet. I'm not going to list all the meds I have tried as it is quite a few. I am very sensitive to meds so it is a little hard for the doc to help me. But she's a trooper I must say. I do want to add that I did try a compound in a vaginal suppository form made by a special pharmacist. I stopped that after 4 days as it made the condition worse.
The dr. is kind of at wits end as I either can't take it, makes it worse or it's just not working. She has suggested that she was thinking of doing the "potassium test". Says she can bring out of pain immediately. Since I seem to be getting worse instead of better she would like to confirm if it is IC or not. I also get CPP, extreme pressure in the pelvic area daily. Standing, sitting or lying on your back doesn't relieve it. That's why we tried a compound. I have also done the Physical Therapy. This condition is very rough for anyone.
Some say anti biotics work, yeast infection meds work, herpes meds work, compunds work, Emiron works, and so many others. It is definitely a roll of the dice. The dr can only try what is the regular approach and then you can hope you have a dr that will go the extra mile to help you find relief. You have to keep looking too. And hopefully you will have a dr that isn't offended when you tell them about something you read or heard about. My dr is not like that. She figures it's your body & you must know how your body reacts. She listens. I think that's part of the trick don't you.
I am always trying to find the common denominator between male & female as men can get this too. Maybe if that could be figured out, it might cut down a lot of trying anything & everything.
I wish everyone good health and freedom from this nasty condition, whatever it is...
I was diagnosed with IC back in Sept. 2014. It has been one hell of a ride as anyone who gets any of these symptoms know. It took many many visits to my primary care dr. for me to finally get really mad and insist on seeing either a urologist or gynecologist to figure out what was wrong. The primary kept doing urine & blood tests. They came back negative so he decided it was in my mind and tried to force anti-depressants on me. After 8 visits of that, I demanded to see a specialist.
Since seeing the urologist & not that dr anymore, she has tried several meds for me. Nothing is really working right now. I am taking the Elmiron but not in the full dosage as I get some of the side affects. Like one of the ladies above said, it takes about 6 to 12 months to see if it's working or not. I get instillation's every week & have since Sept. 2014. I love this urologist because she is bound and determined to figure out how to resolve my pain & issue. I do a lot of research also. I have tried Valtrex as she said I tested positive for the herpes but says it's inside the bladder. Anyway, I tried that med & within the 1st day it made everything worse. By the 4th day I stopped taking it. That sent me to the emergency room with the worst pain I have felt yet. I'm not going to list all the meds I have tried as it is quite a few. I am very sensitive to meds so it is a little hard for the doc to help me. But she's a trooper I must say. I do want to add that I did try a compound in a vaginal suppository form made by a special pharmacist. I stopped that after 4 days as it made the condition worse.
The dr. is kind of at wits end as I either can't take it, makes it worse or it's just not working. She has suggested that she was thinking of doing the "potassium test". Says she can bring out of pain immediately. Since I seem to be getting worse instead of better she would like to confirm if it is IC or not. I also get CPP, extreme pressure in the pelvic area daily. Standing, sitting or lying on your back doesn't relieve it. That's why we tried a compound. I have also done the Physical Therapy. This condition is very rough for anyone.
Some say anti biotics work, yeast infection meds work, herpes meds work, compunds work, Emiron works, and so many others. It is definitely a roll of the dice. The dr can only try what is the regular approach and then you can hope you have a dr that will go the extra mile to help you find relief. You have to keep looking too. And hopefully you will have a dr that isn't offended when you tell them about something you read or heard about. My dr is not like that. She figures it's your body & you must know how your body reacts. She listens. I think that's part of the trick don't you.
I am always trying to find the common denominator between male & female as men can get this too. Maybe if that could be figured out, it might cut down a lot of trying anything & everything.
I wish everyone good health and freedom from this nasty condition, whatever it is...
I totally agree: there are many scientific articles on viruses that cause cystitis, just Goggle "viral interstitial cystitis". And when people say that they have interstitial cystitis, it only means that they have similar symptoms, primarily pain in bladder and no infection that can be detected by standard tests. But nobody tests for viruses, just bacteria. There are also those that have bladder lining abnormalities and those that have absolutely normal lining but still have pain that perhaps is caused by spasms.
I have a recurrent CMV virus and think that this is the cause of my cystitis - both seem to happen at the same time, and when my CMV titer goes down, my cystitis goes away.
I have a recurrent CMV virus and think that this is the cause of my cystitis - both seem to happen at the same time, and when my CMV titer goes down, my cystitis goes away.
1 Comments
How are you getting on now? Did antiviral medication help you? How did you find out about the recurrent CMV virus? And do you have hunner lesions?
Hi there,
I know it has been many years since your post. I have been suffering with chronic bladder pain for many years and I am sure it's related to the virus I have. I can't find the doctor who would support my theory. Did you get relief after seeing that doctor in Long beach? I live in CA so I would love to see that doctor but I don't know how to find him. can you please post his name. I am a long time sufferer, I would do anything to get relief. Thank you.
I know it has been many years since your post. I have been suffering with chronic bladder pain for many years and I am sure it's related to the virus I have. I can't find the doctor who would support my theory. Did you get relief after seeing that doctor in Long beach? I live in CA so I would love to see that doctor but I don't know how to find him. can you please post his name. I am a long time sufferer, I would do anything to get relief. Thank you.
I actually have to agree with the above comment. IC is just a symptom of some sort of disease or virus in the body. If you can get to the root of your problem and treat it, IC can be GONE! You may not have herpes, but it's possible you may have hpv, some type of parasite infection, Candida, etc or even recurring yeast infections.
Most IC'ers have high protein, blood in their urine, and sometimes the urine has a strong odor. All this is representation of an infection or virus. Although, there's no bacteria present in the urine.
I was diagnosed with hpv 15 years old, I believe that's the source of my IC. I'm currently on a 10 day cleansing . After that, I will begin my treatment to get rid of the hpv.
I would highly recommend going to a knowledgeable herbalists, but most importantly do your research and just get all you can get to get to your root cause of your IC symptoms.
That's probably why....most researchers believe that it represents a spectrum of disorders rather than one single disease.
Most IC'ers have high protein, blood in their urine, and sometimes the urine has a strong odor. All this is representation of an infection or virus. Although, there's no bacteria present in the urine.
I was diagnosed with hpv 15 years old, I believe that's the source of my IC. I'm currently on a 10 day cleansing . After that, I will begin my treatment to get rid of the hpv.
I would highly recommend going to a knowledgeable herbalists, but most importantly do your research and just get all you can get to get to your root cause of your IC symptoms.
That's probably why....most researchers believe that it represents a spectrum of disorders rather than one single disease.
2 Comments
Did you ever find relief? I'm going to try Acyclovir.
Do you have hunner ulcers? Did antivirals help?
I get bladder cramping when I have a herpes outbreak. Doctors test urine and culture it and find zero infection. Dr. has just put me in Acyclovir to see if that improves my bladder cramping after voiding. I have dealt with this issues on and off for over 8 years and this is the first Dr. to put me on Acyclovir to see if that helps with the cramping... I wish everyone the best. It can be frustrating. I do avoid foods that irritate my bladder and I also try to pee right away when I have to go and I also find that masturbation helps to relieve the cramping. So... not a bladder infection for sure more like a muscle spasm.
1 Comments
Did Acyclovir work? I'm about to try
Hey there,
Yeah, I'm one of those who agrees it's a herpes viral thing..thank you for the posting ...it makes sense because herpes symplex causes inflammation and usually that is in the abdominal/pelvic region and the flare ups and break outs cause burning sensation in bladder/urethra/vagina/labia. Sometimes though it comes with a UTI so that's even more annoying. I think the other explanation is e-coli infection that never really went away with antibiotic use
Yeah, I'm one of those who agrees it's a herpes viral thing..thank you for the posting ...it makes sense because herpes symplex causes inflammation and usually that is in the abdominal/pelvic region and the flare ups and break outs cause burning sensation in bladder/urethra/vagina/labia. Sometimes though it comes with a UTI so that's even more annoying. I think the other explanation is e-coli infection that never really went away with antibiotic use
Well, if doctors are unsure what the cause of I.C is then i'm sure you yourself without any medical knowledge can NOT say what the cause of I.C is either ? I have had I.C since the age of 5 years old, Herpes is either a virus which gives you cold sores and makes you run down, or an S.T.I, to what i understand anyway ? I've never had cold sores and I can tell you for sure i know i didnt get an S.T.I at the age of 5. It's people like you that make people with a health problem (To no fault of there own, may i add) less able to look for help and understanding, this is a disease, it effects the bladder wall, it becomes inflamed due to many infections. it's something we all as I.C sufferers will have to deal with, so if seeing other peoples NICE comments helps us a little get on with are illness and manage are day to day life a little easier, then so be it. "Thank you" to everyone for your helpful comments, it's nice to know i'm not alone. And for people with the silly nasty comments "i think" you need to read more information before going onto a site that deals with patient comments looking for help off of (helpful people with the same problems, and doctors who are looking to help answer are questions) not be slandered
Please, Please listen to this: I was diagnosed with IC a few months ago, Ive been in so much pain. Im taking Elmiron and ES Vicodin daily, like candy! So, I was chatting with my neighboor who is a Nurse and I told her what I have and she said OMG I HAD (not have, but had) the exact same condition. She told me she saw a very good doctor in Long Beach, Calif who is from Canada and specializes in Viruses! So, I went to see this guy two weeks ago (paid cash for the visit $60 and the blood test $200) which I didnt mind at all, just find whats wrong. The doc just called me and said I am positive for Epstein Barr Virus which is a Herpes Virus and "LOVES THE LINING OF THE BLADDER".
He believes my IC is caused by this virus. Im going in to see him tomorrow to being anti-viral therapy.
So, I called the Urologist who diagnosed me and he said "Its very controversial and its not a proven fact if viruses cause IC". I then asked him "But it can right?" He said, yes it could be a cause. Call your family docotor and ask to have a VIRAL test panel done to identify if you are a carrier of: Epstein Barr Virus, Cytomegalovirus and Coxsackie virus B1 and B4. These three viruses love the bladder.
If anyone lives in Calif and wants the name of this wonderful,open-minded, progressive Family Practitioner email me at: ***@****
He believes my IC is caused by this virus. Im going in to see him tomorrow to being anti-viral therapy.
So, I called the Urologist who diagnosed me and he said "Its very controversial and its not a proven fact if viruses cause IC". I then asked him "But it can right?" He said, yes it could be a cause. Call your family docotor and ask to have a VIRAL test panel done to identify if you are a carrier of: Epstein Barr Virus, Cytomegalovirus and Coxsackie virus B1 and B4. These three viruses love the bladder.
If anyone lives in Calif and wants the name of this wonderful,open-minded, progressive Family Practitioner email me at: ***@****
I should also remark that even though herpes shows itself externally for the most part it comes and goes and usually resolves itself. IC never resolves and is a permanent fixture in one's life.
Um.. first Elmiron has been around for something like 10-15 years. They have no idea why elmiron works (It is NOT an antibiotic). They THINK it has something to do with coating the bladder since the GAG layer of the bladder is destroyed. Majority of elmiron users find it not helpful. The majority if IC patients will not ever find any help or "cure" for this disease.
There is no scientific reasoning of WHY anyone gets IC. Yes it usually comes with other unknown uncurable disease but doesn't have to. There is no cure.
I can't, nor can anyone, say if it is herpes related as no one knows the cause. There is no proof of bacteria in IC patients as antibiotics do not help. There is a theory that long term (year plus) antibiotics have helped a couple people but you will not find a doctor who will give antibiotics for more than a few weeks.
The tests they do for IC are barbaric. The potassium test is what Dawn was refering to. If you have the symptoms, are in bladder hell... you have IC. There is no reason to go through hellish tests to figure that out. IC patients are VERY sensitive to most ALL foods such as bananas (high in potassium). ONE test (which I would never recommend anyone doing) is to shove a catheter in an already inflamed and swollen urethra and pour potassium in it. If it hurts worse you have IC. Dumb test eh? Let's pour lemon juice on an open ulcer and see if it hurts ok? THEN I'll say you have IC. Absolutely ridiculous.
Again there is NO cure, there is NO known cause, there is NO bacteria, NO virus.
There is no scientific reasoning of WHY anyone gets IC. Yes it usually comes with other unknown uncurable disease but doesn't have to. There is no cure.
I can't, nor can anyone, say if it is herpes related as no one knows the cause. There is no proof of bacteria in IC patients as antibiotics do not help. There is a theory that long term (year plus) antibiotics have helped a couple people but you will not find a doctor who will give antibiotics for more than a few weeks.
The tests they do for IC are barbaric. The potassium test is what Dawn was refering to. If you have the symptoms, are in bladder hell... you have IC. There is no reason to go through hellish tests to figure that out. IC patients are VERY sensitive to most ALL foods such as bananas (high in potassium). ONE test (which I would never recommend anyone doing) is to shove a catheter in an already inflamed and swollen urethra and pour potassium in it. If it hurts worse you have IC. Dumb test eh? Let's pour lemon juice on an open ulcer and see if it hurts ok? THEN I'll say you have IC. Absolutely ridiculous.
Again there is NO cure, there is NO known cause, there is NO bacteria, NO virus.
OK - I have never heard of that and I have never had Herpes. I have Lupus (SLE), and endomytriosis and have had adhessions due to surgery - it is not uncommon for it to come alone with one or more of these conditions - but herepes? I am also very diligent in staying current on my medical conitions as well as who is treating me for them.
WHAT???? i have IC, and my urologist who is a pro with this DISEASE!!!! for sure IS NOT; NOT FROM HERPES ANYTHING!!!! The FDA just approved not long ago the medicine called Elmiron for oral and vaginal for installations. This DISEASE is by far caused from HERPES. It is almost the same as diverticulitus, as though the bacteria grows ON the walls of a week bladder. alot of cause is due to bladder RETENTION, pelvic surgeries, a major kidney infection, bladder infection, or UTI'S, major amounts of stress. Scar tissue as a child baring mother, or endo can caus this DISEASE, IT IS CURABLE. It is little pockets of infection on the wall of the inside of the bladder. Elmiron takes several several months oral to get into the blood system to take affect, thatswhy Dr. whos it, came up with the wonderful IDEA of " BLADDER INSTALLTIONS" DONE SO BY A CATH INSERTED INTO THE URETHA AND THE MEDS ARE INJECTED INTO THE BLADDER. I have had up to 3 installations in one week, and have first hand seen the debris in the urine sample that the DR. showed me to prove that my bladder was shedding the bacteria. I have now had several installations, and my was due to pelvic surgerys and scar tissue on my bladder and having surgery on my bladder to take and repair from scar tissue. NOT FROM HERPES ive never herd of such a thing. well im no DR, but my urologist has been study this illness for years and years and is the best Urologist in the Southeast. In order to be properly informed if you have the disease there is a test they can do....and omigosh if you have IC and this test done...YOU WILL KNOW WITH IN 10 SECONDS IF YOUR POSITIVE OR NOT.
what???where did you here that?????Im told its bacteria, not a virus,, broth culturing is showing its bacteria, based on what ive researched...
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