Pain of Unknown Origin

[GinnyTang]

I am in a dilemma, here is what I know so far:
I have Polycystic Kidney Disease, currently I have normal kidney function and until recently was able to keep my BP to around 104/65 to prserve kidney function. Seven weeks ago I woke from sleep with acute pain in my right flank, you think of cyst expansion in the kidney right, well I call my nephrologist, he suggested either cyst expansion or haemorrhage into a cyst, he prescribed vicodin. Vicodin did very little to relief my discomfort, nephrologist suggested cortisone shot into my side, staing it should work for 4-6 weeks, it lasted 4-6 hours! I had two more injections of the cortisone, with longer and longer needles until he was injecting me with spinal needle, same thing no relief. Nephrologist suggested cyst decortication and referred me to a laparoscopic surgeon. I met with the surgeon, he looked at my last CAT scan (from October and stated that my external cysts were approximately 5 centimeters in size and he would not do the de-roofing unless they were 7cm or larger. The surgeon sent me for a new CAT scan, new scan showed a lot of activity in the left kidney (cyst size average 7-9cm)but the right kidney not much going on, a lot of cysts but only in the 6-10mm size, therefore nothing to cause such chronic (7 weeks) pain. He told me he would not recommend surgery, a decision I understand and thoroughly agree with (for the right kidney).

I would like to add that I my BP is stable at 148/102 (no idea why it is elevated), medications I take are Hyzaar 100/25 q.d., Toprol XL 150mg q.d., Lipitor 10mg q.d. and Aciphex 20mg q.d.

Other problems going on are microscopic hematuria, bilirubin in urine (dipstick shows +++), occasionally I have gross hematuria. pain levels are between 5 and 11 depends on the day I guess, there is no difference in dietary changes, exercise does not makes it any better or worse, sitting upright is uncomfortable, so is lying down, best position seems to be either semi-reclined or leaning over (neither of which I can do for very long as then my back aches).

This constant pain, which feels like a really bad cramp (all the time) with searing spasms that last a few seconds but can happen a couple of times a minutes or a couple of times an hour, each time it takes my breath away.

I am meeting with my internist on Wednesday and know he is just going to refer me to a general surgeon, who in turn will tell me they can feel nothing and go away.

Please could you point in any direction to try and get answers to this dilemma, I am not enjoying this quality of life and need it to stop soon.

Thank you in advance.

[Bluesgirl236]

A related discussion, Pulsation in stomach in PKD patient was started.

[Jan C]

I have had numerous urinary tract/bladder infections, cysts on my ovaries in the past.  I now have pain in my lower back, my hip and a cloudy, foul smelling urine in the morning and afternoon.  Should I have my doctor check for PKD?  She did an xray on my hip last year, but no real diagnosis for the hip pain and it seem to be getting worse along with the lower back pain.  I also have cysts in my breast.  I am 43 years old

[Kevin Pho, MD]

Difficult to say without examination.  It is possible that the kidney cysts may be causing the pain.  The CT scan should be able to determine whether a stone was present.  Other diseases affecting the right side would be the appendix, inflammatory bowel disease, or the gallbladder/liver.

You can consider evaluating these GI causes with an abdominal ultrasound (to evaluate the liver and gallbladder), or an endoscopy (to evaluate the bowel in that area).  

If you are female, you can consider a transvaginal ultrasound to evaluate the ovaries.  

Seeing the surgeon is a reasonable option.  If the workup remains non-revealing, you can consider the various GI tests discussed above in conjunction with a GI specialist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[GinnyTang]

Can I also add that I had colonoscopy and endoscopy 4 years ago showing that I do have a hiatal hernia and diverticular disease (not a surprise there knowing that I have PKD)