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Second opinion on hematuria/ cysts?
I am wondering if I should get a second opinion on my diagnosis and /or visit a nephrologist. Two and a half years ago
I was and to this date continue to have chronic hematuria, several UTI's a year(4-6) and lower back nerve inflammation pain. I had a CT with contrast and a cystoscope. The urologist diagnosed urethral syndrome though he described to me that the infections were likely from stricture at the bladder neck that was being scarred from repeated growth of what looked to be fluid filled polyps and I was having retention due to that. Since then I am dilated at the bladder neck approx. every 3 monthes and he says that bursts also these fluid fluid filled tissues as well as opens the neck. When I am symptomatic for UTI I take a standing macrodantin order in the times between dilations.
My concern is my history, my father has polycystic kidney disease(ADPKD) and is on hemodialysis. My general overall health decline in the past 3 years parallels his experience when he was close to my age and had cysts but yet no kidney failure at that time.
I had four cysts on one kidney and five on the other when 2 seperate imaging tests were done. Two sets of cysts were described as mildly complex. The radiologist said they were simple cysts. I have now developed hypertension, continue to have hematuria and frequent UTI's and have a general loss of feeling of good health. BUN and Creatinine are normal. I asked the urologist if I should consult with a nephrologist to rule out ADPKD and he stated " No, you just have simple cysts" I am concerned that the "fluid filled polyps" at the bladder neck are actually small cysts as cysts in ADPKD can develop on other tissues . Have they ever been seen at a bladder neck?
It would be helpful to know if a second opinion or nephrology consult would not be unheard of... I do not want to step on the toes of my urologist or be overly concerned if there is no reason to be with the ADPKD gene. Thank you so much for your help!
I was and to this date continue to have chronic hematuria, several UTI's a year(4-6) and lower back nerve inflammation pain. I had a CT with contrast and a cystoscope. The urologist diagnosed urethral syndrome though he described to me that the infections were likely from stricture at the bladder neck that was being scarred from repeated growth of what looked to be fluid filled polyps and I was having retention due to that. Since then I am dilated at the bladder neck approx. every 3 monthes and he says that bursts also these fluid fluid filled tissues as well as opens the neck. When I am symptomatic for UTI I take a standing macrodantin order in the times between dilations.
My concern is my history, my father has polycystic kidney disease(ADPKD) and is on hemodialysis. My general overall health decline in the past 3 years parallels his experience when he was close to my age and had cysts but yet no kidney failure at that time.
I had four cysts on one kidney and five on the other when 2 seperate imaging tests were done. Two sets of cysts were described as mildly complex. The radiologist said they were simple cysts. I have now developed hypertension, continue to have hematuria and frequent UTI's and have a general loss of feeling of good health. BUN and Creatinine are normal. I asked the urologist if I should consult with a nephrologist to rule out ADPKD and he stated " No, you just have simple cysts" I am concerned that the "fluid filled polyps" at the bladder neck are actually small cysts as cysts in ADPKD can develop on other tissues . Have they ever been seen at a bladder neck?
It would be helpful to know if a second opinion or nephrology consult would not be unheard of... I do not want to step on the toes of my urologist or be overly concerned if there is no reason to be with the ADPKD gene. Thank you so much for your help!
MEDICAL PROFESSIONAL
AKPD is just that, a genetically dominant kidney disease that is managed by nephrologists. They are most knowledgeable about the nuances of the problem, early signs and symptoms and, of course, the care needed. Given what you have described, I think that an opinion from a nephrologist is indicated.
No the tiny cysts at your vesicle neck are not related to your ADPKD. I am unaware of the relationship between these mucosal cysts that are seen in many women without a history of voiding problems and urinary tract infections and bladder neck scarring bladder infections. Recurrent UTI's in women have many other possible causes, a common one being sexual intercourse. This type of infection can often be prevented by taking a single dose of antibiotic the morning after.
Hope this helps.
S.A.Liroff, M.D.
This information is provided for general medical educational purposes only. It
does not necessarily reflect the opinions of Henry Ford Hospital or the
Vattikuti Urologic Institute. Please consult your physician for diagnostic
and treatment options pertaining to your specific medical condition.
No the tiny cysts at your vesicle neck are not related to your ADPKD. I am unaware of the relationship between these mucosal cysts that are seen in many women without a history of voiding problems and urinary tract infections and bladder neck scarring bladder infections. Recurrent UTI's in women have many other possible causes, a common one being sexual intercourse. This type of infection can often be prevented by taking a single dose of antibiotic the morning after.
Hope this helps.
S.A.Liroff, M.D.
This information is provided for general medical educational purposes only. It
does not necessarily reflect the opinions of Henry Ford Hospital or the
Vattikuti Urologic Institute. Please consult your physician for diagnostic
and treatment options pertaining to your specific medical condition.
Thank you so much for your advice and taking the time to review my written history! I very much appreciate your service to this website and I think it likely helps MANY people!
Thank you again! pumpkin1122
Thank you again! pumpkin1122
After reading other entries I also need to add that I have developed pitting edema to just below the knee through the ankle that occurs over the day with 2 episodes that developed overnight in the past month. With elevation I can relieve this to only have it reoccur by the end of the day even with rest periods on a flat surface. I do not have a high sodium diet . I generally pass only about 50-60% of the fluids I take in within a day, here and there I seem to pass alot more than what I take in(1-2 days per week) The edema is new in the past 2 monthes and my weight will go up and down about 5 lbs overnight. I do not use a diuretic but have taken altace in the past but it was dc'd when my BP was better a year ago. Thank you for all your help!!
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