First, let me congratulate you for planning to get all your records and keep them current so that you have a reference to your entire history. This is so smart for anyone, but especially for someone who is dealing with a chronic condition.
The question of IC and trigonitis is interesting. As I research it, I find the terms used almost interchangeably. Some people get diagnosed with IC first and then trigonitis; many others are diagnosed with trigonitis, and later told it's IC. Some say that trigonitis is the old term for what is IC today. Others discuss them as two separate but similar conditions. Is this what you've found?
In a 2001 Q&A with Dr. Jay Burstein on the IC-network.com, here is how he answers a similar question:
"Q134: My urologist has diagnosed my condition as trigonitis. I can find little information on this disease and read that the symptoms are very similar to what I read about IC. What, if any, are the differences and what about treatment? My physician says there is no known cause nor treatment for trigonitis.
"A: Trigonitis is a non-specific reference to changes seen on a portion of the bladder floor called the trigone when evaluated with a cystoscope. It is a "generic" term commonly used by urologists and typically refers to squamous metaplasia.
"The trigone is a triangular structure with boundaries between the two ureteral orifices (the openings that bring urine down from the kidney) and the bladder neck (the funnel portion of the bladder where it meets the urethra). Squamous metaplasia is also called "pseudomembranous trigonitis". It occurs when normal bladder lining cells (urothelium) are replaced with squamous (skin-derived) cells. It appears as a white, patchy, bumpy area on the trigone and bladder neck region: kind of like a thin white membrane.
"The trigone is derived (embryologically) from the same origin as the vagina and therefore responds to changes in estrogen levels. The changes in the trigone as described above are actually due to low levels of estrogen and do not represent a pathologic or disease state. This is typically found in postmenopausal women but can also be found in younger women with fluctuating levels of estrogen and in men treated with hormones for prostate cancer. Autopsy studies have shown squamous metaplasia to occur in the bladder of nearly half of women and fewer than 10% of men. This then represents a normal finding and is not associated with inflammation and does not produce any symptoms.
"Why so many patients are told they have "trigonitis" is a question I cannot answer. However, if symptoms persist, a distinct, pathologic diagnosis is mandatory by obtaining further studies, such as hydro distention to rule out IC, or even seeking a second opinion."
When your new doctor told you you had trigonitis, did he mention any treatment or special diet or meds?
I thought I'd go and find out how the two conditions are defined, to see if any differences became evident.
Here is the Mayo Clinic's definition of IC:
"Interstitial cystitis — also called painful bladder syndrome — is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.
"Interstitial cystitis is a chronic condition that affects an estimated 1 million Americans. While it can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse impact on your quality of life.
"The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief."
Interestingly, the Mayo does NOT have a definition or a page for trigonitis, which makes one lean toward the "one and the same" theory. Same with the National Institutes of Health -- they discuss IC, but not trigonitis.
http://health.nih.gov/topic/InterstitialCystitis
Here's a good discussion from Dr. Stephen Liroff, affiliated with the Henry Ford Hospital, of this on MedHelp:
Does this help a little? It sounds like the most important thing here is for you to ask your own urologist what he sees as the definition between IC and trigonitis. His interpretation of the question is what's most vital here, since he is the one who will be treating you. Do you like him and does he respond well to your questions? Did he take the time to take a thorough medical history of you? Did he encourage a back-and-forth conversation with you? It's very important when you're dealing with something chronic, because you may be seeing him often.
Please write back and let us know anything more. If need be we can ask one of EmpowHer's medical experts to weigh in as well, but again, what truly matters is YOUR doctor's interpretation of the two.
Comment Reply
Hi, Anon,
First, let me congratulate you for planning to get all your records and keep them current so that you have a reference to your entire history. This is so smart for anyone, but especially for someone who is dealing with a chronic condition.
The question of IC and trigonitis is interesting. As I research it, I find the terms used almost interchangeably. Some people get diagnosed with IC first and then trigonitis; many others are diagnosed with trigonitis, and later told it's IC. Some say that trigonitis is the old term for what is IC today. Others discuss them as two separate but similar conditions. Is this what you've found?
In a 2001 Q&A with Dr. Jay Burstein on the IC-network.com, here is how he answers a similar question:
"Q134: My urologist has diagnosed my condition as trigonitis. I can find little information on this disease and read that the symptoms are very similar to what I read about IC. What, if any, are the differences and what about treatment? My physician says there is no known cause nor treatment for trigonitis.
"A: Trigonitis is a non-specific reference to changes seen on a portion of the bladder floor called the trigone when evaluated with a cystoscope. It is a "generic" term commonly used by urologists and typically refers to squamous metaplasia.
"The trigone is a triangular structure with boundaries between the two ureteral orifices (the openings that bring urine down from the kidney) and the bladder neck (the funnel portion of the bladder where it meets the urethra). Squamous metaplasia is also called "pseudomembranous trigonitis". It occurs when normal bladder lining cells (urothelium) are replaced with squamous (skin-derived) cells. It appears as a white, patchy, bumpy area on the trigone and bladder neck region: kind of like a thin white membrane.
"The trigone is derived (embryologically) from the same origin as the vagina and therefore responds to changes in estrogen levels. The changes in the trigone as described above are actually due to low levels of estrogen and do not represent a pathologic or disease state. This is typically found in postmenopausal women but can also be found in younger women with fluctuating levels of estrogen and in men treated with hormones for prostate cancer. Autopsy studies have shown squamous metaplasia to occur in the bladder of nearly half of women and fewer than 10% of men. This then represents a normal finding and is not associated with inflammation and does not produce any symptoms.
"Why so many patients are told they have "trigonitis" is a question I cannot answer. However, if symptoms persist, a distinct, pathologic diagnosis is mandatory by obtaining further studies, such as hydro distention to rule out IC, or even seeking a second opinion."
Here's that page, which has many other Q&A's:
http://www.ic-network.com/askthemd/feb2001.html#134
These women are speaking about trigonitis, not IC, and you may be interested:
http://www.pandamedicine.com/rt_education/239-12.html
When your new doctor told you you had trigonitis, did he mention any treatment or special diet or meds?
I thought I'd go and find out how the two conditions are defined, to see if any differences became evident.
Here is the Mayo Clinic's definition of IC:
"Interstitial cystitis — also called painful bladder syndrome — is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.
"Interstitial cystitis is a chronic condition that affects an estimated 1 million Americans. While it can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse impact on your quality of life.
"The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief."
http://www.mayoclinic.com/health/interstitial-cystitis/DS00497
Interestingly, the Mayo does NOT have a definition or a page for trigonitis, which makes one lean toward the "one and the same" theory. Same with the National Institutes of Health -- they discuss IC, but not trigonitis.
http://health.nih.gov/topic/InterstitialCystitis
Here's a good discussion from Dr. Stephen Liroff, affiliated with the Henry Ford Hospital, of this on MedHelp:
http://www.medhelp.org/posts/Urology/Do-I-have-IC/show/912691
Does this help a little? It sounds like the most important thing here is for you to ask your own urologist what he sees as the definition between IC and trigonitis. His interpretation of the question is what's most vital here, since he is the one who will be treating you. Do you like him and does he respond well to your questions? Did he take the time to take a thorough medical history of you? Did he encourage a back-and-forth conversation with you? It's very important when you're dealing with something chronic, because you may be seeing him often.
Please write back and let us know anything more. If need be we can ask one of EmpowHer's medical experts to weigh in as well, but again, what truly matters is YOUR doctor's interpretation of the two.
October 20, 2009 - 8:39amThis Comment
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