Anyone with a large kidney or liver cyst?

[Lilylakeside]

A large kidney cyst on my left side was discovered incidentally back in 2019, it was classified as a Bosniak 2F, with the F meaning follow up so for a couple of years it was monitored with US scans and I was discharged in 2022 as no change seen. It measured 6cm back then.

I have suffered with a lot of digestive issues over the years and in 2024 I had asked my gastroenterologist for a scan on my upper abdomen due to suffering with a lot of nausea and indigestion (which is still ongoing) and had asked for my gallbladder to be checked. All came back ok but when I looked at my notes online earlier this year I noted the kidney cyst had grown so a few months ago I asked my GP if I could have the kidney cyst checked again. The ultrasound scan noted that it has grown further so I had a ct scan early September, the results went to a MDT meeting and I’ve just had the result back.

They have noted the kidney cyst appears to remain stable although it has now grown to 9cm and I have also developed a liver cyst measuring 7.2cm. The MDT team have advised for yearly ct scans to continue monitoring with no current alerts or urgency.

I am now wondering though if these cysts are contributing to my upper gut issues. I’ve measure them against the fruit I have in the fridge lol and note the kidney cyst is the size of two clementines and the liver cyst the size of a lemon. I’m not a very big person and wondering if the size of these combined may be causing some kind of compression against my inner organs?

I had a telephone consultation on Friday with my GP but she’s not concerned.

Has anyone had a large kidney or liver cyst and did they cause you any issues such as pain or digestive problems?

Should add that over the last 6 years I have had clear colonoscopies, gastroscopes and bile acid malabsorption scans to rule out any other digestive diseases so no idea why I would continue to struggle with these daily gut problems.

Almost

I have an enormous mass on my adrenal gland, which is on top of my kidney.

When it was first discovered they thought it was on my kidney but further tests revealed its actually attached to my adrenal gland.

Mine takes up most of the space under most of the left side of my ribs, and is displacing my spleen, pancreas and kidney, so my kidney is down and not protected by my rib cage. Its abour 12cm cubed as a spherical type shape and growing

I am waiting for pretty major surgery to remove it, which will require 2 endocrine surgeons and a stay in a major hospital. (my NHS trust, and indeed most NHS trusts can't / don't deal with what i have)

I dont have digestive issues, which is a huge surprise to my medical team as they would expect it to press my stomach, but for some reason it isnt. (If this happens, it could stop me beig able to eat, so I would have the surgary urgently if this were to happen, which it could)
In theory mine should also cause me pain, but 99% of the time i feel no pain at all.

I have also had other surgary where I had grapefruit and satsuma sized cysts removed from my insides (which i had at the same time as my adrenal) and im also a very small petite person so no idea how so much fitted inside my insides!!!

I had something mentioned (picked up on a scan for something else) but they never even bothered getting me in to be seen again, so clearly weren't bothered about it. If you are getting issues as you say though, they need to follow up and explain what it is, and how to relieve it, whether it's this or something else causing it.

also, just to add you can see some examples of these on the bbc series Saving lives in Leeds.
(its not curently on iplayer but is on youtube)
Kidney / adrenal / Liver cysts

It's amazing how big these things can grow to isn't it? I've measured mine out, it's around 9cm square cubed and looks massive once drawn on paper. Do you experience any adrenal issues from yours? I do have a very small adrenal cyst but they aren't concerned about that at all. I wonder why some of us are prone to cysts? I have endometriosis and did wonder if it's related but my GP doesn't believe so.

I do enjoy the Saving Lives series, I'll go check that out.

Good luck with your surgery, hope all goes well.