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Have a mild platelet disorder. Urology test and renal MRI done. Do I have interstitial cystitis?

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General & Family Physician
Practicing since : 2009
Answered : 983 Questions
Hi. I have recently undergone a number of renal / urology tests in an attempt to find the cause of my hypertension, tachycardia and high cholesterol. My renal MRI indicated only one scarred functioning kidney, (the other is atrophied) and my GFR is 72 on last test so okay for now. Urology tests have consistently shown blood and often protein, sometimes pus cells, but no recent UTI although I have had them in the past. A cystoscopy revealed an inflamed bladder lining. I also suffer frequent pelvic pain and backache. I have been doing some research and my question is do I have interstitial cystitis (my GP wasn't very familiar with it and I don't see my urologist until next month)? And if so, is Elmiron the best non-invasive treatment option? I have a mild platelet disorder and I'm also a haemophilia carrier (Factor VIII, levels approx 60% of normal), so I'm concerned about its anti-coagulant properties. Thanks for reading! XXXXXX.
Posted Tue, 21 Aug 2012 in Urinary and Bladder Problems
Answered by Dr. Aparna Kohli 1 hour later
Thanks for writing in.
I would need a little more information before I can comment on whether you have interstitial cystitis or not.
a. The most common symptoms of this issue are urinary frequency and urgency. Let me know if you have them
b. Has a urine culture been done for you? If yes, what were the results?
c. Could you share the whole cystoscopy report? Was a overdistension test done? Were there any glomerulations in the bladder wall?
d. Has a urodynamic study been done for you?

The question on the Elmiron can be addressed once I get these answers
Awaiting your reply
Above answer was peer-reviewed by
Follow-up: Have a mild platelet disorder. Urology test and renal MRI done. Do I have interstitial cystitis? 1 hour later
Hi Dr XXXXXXX - thanks for your response, I guess I'm jumping ahead a little! I am just so fed up with every test result being borderline normal and not having any definitive diagnosis and plan for treatment. I should start at the beginning - my depression / anxiety symptoms have been ongoing for approx 4 years, I see a psychiatrist who prescribes the meds and a therapist weekly. I have had bouts of depression in the past but none that required medication.
The hypertension and tachycardia (about 110-120 bpm) started about 5 years ago. I have been treated with various ACE inhibitors, diuretics, and beta-blockers, currently on Bisop 5mg which seems to work. I attend a hypertension consultant in an outpatient clinic approx every 2-3 months and he referred me initially for renal assessment through ultrasound and subsequent MRIs. The renal consultant has referred me to the urologist.
I don't have the cystoscopy report, my GP was just sent a brief letter. The cystoscopy itself was brief, just an initial assessment, no distension I don't think, (at least no fluids were injected, just a camera). No urodynamic study but I guess I discuss all that with the urologist at my next appointment. I was last tested for a UTI a week ago, no infection found on culture, but pus cells evident (I have had UTIs in the past, mainly e-coli infections). I do have urgency and cramp like pains, frequency is not really bad, I would say between 10-15 times a day on a good day? Urgency causes cramp-like pains in my abdomen. This sounds weird but I'm always "aware" of my urinary tract, like a kind of pressure or something. Not painful though. Coffee and alcohol make it worse and cause a sharper pain in my back, usually it is quite dull but persistent and can move up or down. It seems to be period related too, worsening just beforehand.
I've had a stressful last 5 years or so, personally and work-related, and I have had typical depression symptoms of fatigue, lack of energy, interest, sleep disorder, mood, etc. The main problem being my constant fatigue and inability to do anything!, I've raised this to my psychiatrist, GP and hypertension consultant, and their response is pretty much "well beta-blockers will do that to you". I then though that it might be caused by my kidney problems and /or hypertension and hypercholesterolaemia. Now potentially by cystitis? I don't know! I'm exhausted all the time, I've tried natural supplementation, multi-vitamins, thyroid support, kelp, you name it. I'm only 39 and without medication, I have the blood pressure, cholesterol and kidney function of somebody twice my age. There is a family history of high cholesterol and MIs / strokes on my fathers side and renal problems on my mothers side, the haemophilia is maternally inherited, although my platelet disorder is all my own :)
In case it's relevant to the urology info - I have two children, first at 17, primary pph and stitches but no other issues. 2nd child at 27, no issues but very actively managed 3rd stage. I have my last 4 or so bloodwork results.
Thanks for listening, XXXXXX.
Answered by Dr. Aparna Kohli 15 hours later
Thanks for writing back.
I think there are several issues to be addressed here. Lets start with the cystitis. Negative cultures with positive pus cells is called sterile pyuria. Causes can be inadequately treated UTI, tuberculosis, stones, interstitial nephritis and even a chlamydia or gonorrhoea infection. So we need to do some more tests like testing 3 early morning samples for tuberculosis, urethral swabs for chlamydia and possibly a kidney biopsy.
Chronic kidney disease itself can lead to the fatigue. But you have stage 1 CKD and I would not expect you to have such overwhelming fatigue due to this.
Also, this fatigue is partially contributed by beta blockers. You're on very low doses for that. Which brings us back to the depression and the anxiety.
We need to understand here XXXXXXX that its possible that these conditions are not getting controlled. This can in itself lead to the frequency, cramping and urgency. I would not completely rule out interstitial cystitis at this stage, but would definitely be wary of making this diagnosis till I am sure we have ruled out other things.
As far as the treatment is concerned, psychotherapy remains the cornerstone of management. There is no permanent and 100% effective cure. Also, you should be avoiding stuff which triggers off the situation like coffee, alcohol, tomatoes, vinegar and spicy food. Thirdly, as far as the drugs are concerned, Elmiron produce improvement in only 30% of the people. Other drugs like amitryptiline and hydroxyzine have been tried with varying success.
As of now, I think the best way forward would be to get a thorough assessment.
Let me know if I can address any more concerns.
Above answer was peer-reviewed by
Follow-up: Have a mild platelet disorder. Urology test and renal MRI done. Do I have interstitial cystitis? 39 hours later
Hi Dr Kohil - I have regular urinalysis checks, all are positive for blood, either trace up to ++, usually protein @ trace, but last two tests were clear for protein, but positive for pus cells. I have to send off more samples next week, I had my period this week so preferred to wait to get a completely clean sample. I am pretty sure I don't have TB or haven't had it in the past; and very sure I don't have chlamydia or gonorrhoea! ... apart from the fact that I haven't been able to have sex for about 6 months, my partner is also free from STDs. My coagulation consultant is very reluctant for me to have any kind of biopsies especially kidney biopsies because of the risk of bleeding. I don't respond well to DDAVP.
I agree, psychotherapy is good in the sense that it gets your mind back on track, (I also have monthly meetings with a psychiatrist who rxs my meds) but my concern is that my depression and chronic fatigue has a physical cause that is not being addressed. So I would prefer to find the physical cause and treat it!

Thanks, XXXXXX.
Answered by Dr. Aparna Kohli 7 hours later
Thanks for writing back.
As we discussed, chronic kidney disease can lead to both depression and fatigue. But I would definitely not be expecting these symptoms to be this severe at this stage of the disease.
If your consultant is wary about doing a biopsy, we could take the reverse approach. The first thing is that we culture the urine for fastidious organisms. Secondly, we should be considering bladder distension with cystoscopy. If these tests are negative, we could be reasonably sure that inadequately treated UTI and interstitial cystitis is definitely out.
Hope that helps.
Above answer was peer-reviewed by
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