I am 68 years old. I was informed in January 2023 that I have Stage 4 CKD (GFR of 28) - unfortunately I had NEVER been told that I'd been in Stage 3a an 3b CKD for the previous 10 years! After a ultrasound and MRI I was informed I have a 3.5 cm cyst IN my right kidney (= the cyst is taking up 33% of that kidney). I've had just one appointment so far with the Nephrologist, and she says the cyst is of no concern, unless it's causing pain. I told her I believed it is. She asked me to point to where the pain was (right under my ribs in the front and back) and she said that's not the right place for kidney cyst pain?! But the ultrasound and MRI didn't show any other reason for the constant pain. I end up spending way too much time in my recliner with a heat pad due to the pain. Heck, even my dog seems to know there's something there, she keeps nuzzling where the pain is! So do I bug the doctor again, the pain is limiting my ability to function normally during the day. FYI - I have been trying to follow the proper diet now, and my GFR 2 weeks ago was up to 38.
Kidney Cyst Pain: I am 68 years old. I was... - Kidney Disease
Kidney Cyst Pain
There can be pain and if you feel it, it is real. Any doctor who dismisses pain in my book is worthless. It may be from the cyst, maybe not.... but to tell you are wrong is inexcusable. It is your body. And.... the fact she doesn't want to do a biopsy to see what kind of cyst is troublesome. There is something that is affecting your kidney function and she is going to let it just go....... bye bye Doc!. Advocate for yourself and ask to see if she is going to do further testing. If not, find someone else.
I plan on bringing it up on my next appointment the end of June. At my first appointment, when I mentioned the pain and she brushed it off as normal and non-concerning, but she did order the MRI. But the MRI just said "yes, there's a 3.5 cm cyst in the kidney". I can't believe that a painful cyst that's taking up 33% of one kidney is "normal". Since everything from the ultrasound and MRI says that my kidneys and bladder (and everything around them) are perfectly normal and healthy, then why did I have a GFR of 28 in January (now 38)? Pain, nausea, fatigue, headache, feeling like I have a bladder infection (recent tests said there is no infection), not "normal" to me. Sometimes I think doctors don't want to take action until the patient is bad enough to need the constant and expensive treatments (dialysis)!
A GFR of 28 and even 38 is not normal. Hope you get better support at the next visit. BTW, stay away from ibuprofen for the pain. It will destroy what is left of your kidney function.
Thank you. Yes, I got rid of my ibuprofen and aspirin, though I never used either much anyway.
You're right of course, to want to track down and heal the pain. Do you think the kidney cyst could be pressing on a nerve, or other organs, so the pain is displaced a few inches? Does your doc understand that you need to be free of the pain or at least know what's causing it? Maybe a nerve chart would help? As for not knowing you had a kidney problem, I was diagnosed when my egfr was 28, I think its pretty common since kidney problems don't cause any symptoms in the earlier stages. (my egfr has been in the 50s lately, on the vegan kidney diet)
By all means, advocate for yourself and insist that your pain is addressed. Frankly. I think if it isn't, you know you have to change doctors. Good that your GFR Has improved but it's unlikely just the diet after such a short time, but it's certainly cant hurt. I'm wondering why it's taken since January to get one visit with a nephologist. Its a long time to sit around with pain??? Are you located in an area where medical services are sparse?
I'm sorry that you're having these problems and sincerely hope thst you can get it resolved soon. Please keep us posted.
I live just north of Madison, WI which has excellent medical care, 4 huge hospitals, several smaller hospitals surrounding me, and lots of specialists. But it seems that to get an appointment with ANY specialists always takes 2-4 months for the first appointment. People come to these hospitals and specialists from all over the state, so there seems to be a long waiting list - unless you're near death, then suddenly they can get you right in!
Oh, wow. That's good and that's bad about not being able to schedule appts with specialists easily. Still hoping you can get some pain relief and mostly information about what may be causing it.
I had that experience pain in my right side just above the ribs,being told that my kidneys are not at that location, so it's not kidney pain. I still have pain in that area. I am stage 4 22 % function.
Hope you get some answers my urologist requested an MRI to compare the last MRI I had last May, and I get the news that I have a cyst on my right kidney. I also have a kidney stone on that kidney that he is monitoring, because of it's location they would sugericaly would need to remove it. He told me not to worry about my cyst and it shouldn't give me any problems at the stage it is. Great I thought to myself more problems to my poor kidneys as they need more than what they are dealing with. Also found out I have stomach hernia which came out of no where, but hopefully your cyst isn't what's causing you pain.
Stay blessed 🌹
I've heard of dogs trained to detect all sorts of medical conditions. And I've heard stories of pet dogs that have alerted their owners to medical things without being trained to do so. So the fact that my Chocolate Lab "Molly" keeps pushing her nose into the area under my ribs that hurts and looking at me concerned - is concerning for me. But the MRI says everything is fine! But I'm not giving up. Unexplained pain is hard to deal with. At my age, arthritis, etc... is understandable, but this isn't arthritis or my fibromyalgia.
The pain is REAL!!!! I was brushed off by my first nephrologist and after a few months being ignored, I went for a 2nd opinion and sure enough there was a problem. Don't allow them to brush you off, go to a new doctor and bring copies of the MRI with you and any/all other tests.
Being a "secretary" all my life taught me organization. So I now have a 3-ring binder with all lab results, doctor visit reports, etc... in it - and it's helping so I'm not trying to remember everything. Doctors are amazed - and I'm amazed when I have to remind them of their own reports and lab results!
by all means find another doctor. A Dr that dismisses your pain and concerns should go back to med school. If you are near a university that has a hospital and teaching center start there. Yelp or google the doctors for others opinion. I live in a big city with several renowned hospitals and large medical centers and it took me 3 months to get an appt w the nephrologist that I wanted to see.
Good luck, let this forum know how you are doing
fyi....there's a world of difference between an eGFR of 28 and 38. You need to make sure you're always well hydrated when they're drawing blood, and you need to start charting your creatinine or eGFR levels at least every 6 months.
That’s what I’m doing now. Using the lab work results now available online (confidential) I’ve printed out all the CKD-related lab results for the past 10 years. That’s how I found out that I’ve been Stage 3a & 3b all those years, but doctors didn’t say anything until I tested Stage 4 in January. I see my GFR was 41 last June. In August I got COVID, not hospitalized, but very ill for a week and I’m still dealing with shortness of breath. Then January my GFR was 28. I asked the doctor if COVID could have affected my CKD. She said it’s possible. GFR up to 38 a couple weeks ago. Will be checked again within next month prior to my next Nephrologist appt.
I'm in the same boat. I had Covid (2nd time) the beginning of March. Mild to moderate case that lasted a week and a half. Still feel tired and get winded quickly. Now I find out that I may have a cardiac issue based on a stress test. Will have to wait until June to see a cardiologist. Sickness sucks. May your eGFR ever rise. 
We’re close in age. I retired August 2021. Heart monitor, stress test say my heart is fine. They say my high blood pressure is genetic; keeping it under control with meds. ultrasound and MRI say my kidneys and bladder are fine, yet GFR says otherwise. Golden Years - where’s the gold! Oh well, better than the alternative.
We definitely think alike. 
Hi. My stress test about a year ago said there was a slight abnormality with my heart. The transplant cardiologist said I needed a heart catheterization to see what was going on. Wouldn’t do it right away since I was close but not yet on dialysis. They put me inactive on the transplant list. My cardiologist said he didn’t think I needed the heart cath, but would do it if they wanted one. He thought they would find very little if anything there. (I’ve been with him since 2010 when he filled the hole in my heart).
About a month ago my nephrologist and I decided to have the heart cath done by my cardiologist. I am totally clear- not even a hint of blockage started. So we wasted a year waiting and wondering.
I hope yours gets resolved more quickly.
Agreed. New doc needed. Pronto. You can’t do anything with dismissiveness. You need a n experienced urologist or a nephrologist to come up with a plan. That’s a heckuva cyst… best
Dear appledonut,
As a Kidney Transplant Receiver, now Ten Years Ago, and without reading any other replies, my Gut Feeling is 'Yes' DO go back to your Doctor/ Consultant. This level of pain could, very well, be 'Indicating' a Further/ Additional Problem(s).
Hopefully this is 'just' Referred Pain, from elsewhere, and is Treatable- perhaps with other Medication- or maybe Surgery (though I obviously wish Not!).
Can you let me/ us all know please appledonut. Sending my
Very Best Wishes
AndrewT
Thank you. I go to my next Nephrologist appt. June 24th, and I’m working on a list of questions & concerns that she needs to address, or I find someone else!
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