Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Question About Ruptured Cysts

It has been discussed several times how a cyst rupture may (or may not) bring pain, along with blood. My question is regarding the blood. If a cyst is attached to, but mostly located outside the kidney, when a rupture occurs, how exactly does the blood end up in the urinary system?
I may understand that if a cyst ruptures form its base (no medical term here, just going by what I think), blood may leak inside the kidney, but I suspect such ruptures are less probable that just having a cyst explode (sorry for the term), maybe due to an impact, in which case blood (in addition to whatever other liquids are inside the cysts) would be spilled outside the kidney, not inside. So does anyone know exactly what goes on with the cyst rupture and the blood?



don't really know what happens during a cyst rupture but if the cyst is on the outside I imagine the blood would just go into the belly cavity and be absorbed back into the body. cysts on the inside are probably the ones that cause blood in the urine.
injuries can cause cysts to rupture but they can happen spontaneously, like a balloon having too much air. they can hurt or be painless. when I had the bloody urine there was no pain at all, just a sudden, strong urge to pee and it seemed like it was all blood.
I know this didn't clear anything up but its all I can offer.

Any excess fluid from a cyst that is not part of the collecting system just goes into the organ (keep in mind that blood is not always part of cyst rupture process) and gets absorbed by the kidney or liver (depending on the organ involved). In the case of an external cyst, the fluid is free of the kidney or liver and is reabsorbed by the body and gets metabolized and excreted as appropriate. Depending on the size and amount of cyst(s) that rupture, free fluid can sometimes be seen in the abdomen (for liver cysts) or retroperioneal cavity (for kidney cysts). However, because all scans are done while lying down, not while standing, where the fluid generally pools in one locations (e.g. the lower right side), the amount of free fluid seen on an image is genenerally minimal as it diffuses and spreads out over a wide area as soon as you lie down and is further shadowed by the cystic organ (I've had cases of large "pooches" of fluid after a cyst sclerosing, the remnants of fluid from cyst that were poked while getting to a specific target, but on the actual US or CT, that fluid wasn't really seen because as soon as I laid flat on my back, the fluid spread out instead of remaining in the lower right quadrant where it had accumulated otherwise).

I've had innumerable kidney cyst ruptures based on the images of my kidneys. Yet I have only seen blood (pink) in my urine when I had my one massive kidney infection and again after having the lithotripsy (sound waves) to break up the kidney stone that was lodged in the renal pelvis (that was the color of cranberry juice as the sound waves actually ruptured cysts as well as the created innumerable cracks in the stone). And while at times I've felt other cyst rupture, I've never had hematuria associated with the event, just pain, and I've also had silent cyst ruptures with no pain at all (these were probably more along the lines of cysts that leaked slowly rather than compression causing a large hole to suddenly develop). Liver cyst ruptures hurt like Hades, but never any blood in the urine or bowel (since the liver produces bile that gets dumped into the small instestines), just pain (and no question about the pain with the liver cysts; they are anything but silent ruptures that I know of).

There is no "normal" for cyst ruptures; we each experience them in our own ways. In many cases what we may think are ruptures based on the level of pain, may well be a new cyst developing somewhere else that is causing the kidney adjust position slightly (yes the kidney can move a bit; it's not tied down and stationary) and press on a different nerve or muscle group. The kidneys, while so fragile with their single-celled cysts, are also incredibly strong and can push on and somewhat displace the internal spinal muscles, thus exacerbating back pain, etc.

Hope this helps!

That helped me understand more...so thank you, Ruth!

And thank you PKDAD for asking the question :)

Something totally different than the pain you guys have, but it still hurts. For probably the past 20 yrs. or so I get pain so bad, that it brings me to my knees, doesn't happen every day but probably at least once a week. It feels as if something inside me is pulling, stretching, pain so bad that I can't breath. I have to totally stop what I'am doing and sit down, sometimes I have to lay down as the pain is so bad. The older I get the worse it gets and the doctor's always say the same thing, that it's a muscle spasm. WHAT? are you crazy, there are no muscles where I am having pain, only a liver and kidney, because it does happen on both sides, but more on the right side. I've had my gall bladder out and know what that pain is, don't wish that on anyone...so thats out. My sister has it too, she's the only one that I know of that has the same pain that I do. My sister is full of faith, I am not... no big surprise there, huh she says that God would not give her anything more than she could handle, bull shit is what I say, LOL. sorry for that one..:) I'am really tired of them and am gettng to the point that I'am afraid to go out anymore because it may happen while I'am not at home and I can't lay down or at least sit down and wait the pain out or to be done. It's usually done in a couple minutes, a very long couple of minutes, but sometimes not. I know it's something to do with PKD I just don't know what and being the person that I am, I need to know what is causing these things to happen. They really hurt bad and sadly do feel like some sort of muscle spasm. I just hate to think that something as simple as a muscle spasm in my belly can cause me such unadulterated pain!
I've never had the opportunity to ask anyone else about this and do know that there are people with PKD type II on this board and also the world's most informed medical specialist, Ruth! We sure love you Ruth! Thanks anyone that can help me. (PS: where is Heidi)

love as always,

Norma67 - I've had intestinal spasms that are quite painful. They lasted longer than what you describe, up to 30 mins. I doubt it was PKD related. I had them when I was much younger.

I understand the need to know. I have that same need to know. I can handle the pain and discomfort, I just want to know what's causing it (to the maximum extent possible). Just please remember, I am a layperson, a patient, just like you, who has simply done a lot of research and is the proverbial 2-year old and asks WHY a heck of a lot. As a result I "challenge" my doctor, but in a favorable way. He's constantly reading and doing his research and catching up on the latest in PKD before each appointment (or sending me articles he comes across or vice versa) and thus broadening his medical knowledge as well...it's a very good relationship.

No offense, but your doctor may have a good point with the muscle spasms, but may not have explained it very well. PKD kidneys are notoriously "sticky" and one of the reasons surgeons generally do not like to remove them unless there is an overriding reason to do so is because they always, regardless of size, shape or age, have adhesions to the rest of the body, so a nephrectomy for a PKD patient is much more challenging and takes much more time than it does for any other diseased kidney (those other kidneys just shrivel up and become small peanuts and are generally very easy to remove).

The reason our kidneys are "sticky" is evey time a cyst ruptures, especially those cysts on the outside of our kidneys (and remember the outside of the kidney is constantly being replaced as new cysts form), they tend to leave behind an open area in the cyst wall, or even a small hole from leak. Those open areas or holes, during the healing process, naturally adhere to some nearby tissue, causing an adhesion. Deep within the kidney, this can be to another part of your kidney and not necessarily be a problem (but account for some of the strange internal shapes of a PKD kidney), but on the exterior of the kidney, it becomes an adhesion to the surrounding fascia or a even a muscle. As the kidneys enlarge, these adhesions can pull on the fascia, muscles (and in the case of the liver, other internal organs) and cause that "ripping" pain your describe, the type where it feels like your kidney (or liver) is trying to be rip or pull itself plumb out of its place in your body!

In addition, although our kidneys are delicate creatures with those single cell fluid filled cysts, they also have amazing strength and can dispace muscles and irritate the heck out of others by the pressure they put on surrounding muscle and fascia, so some muscle pain and twitches/twinges wouldn't be unusual at all. I know on some of my earlier images the displacement of a portion of an internal spinal muscles is quite noticeable; my kidneys simply pressed part of the muscle against the spine! That was a number of years ago; I can only imagine what the kidneys and liver have done now (beyond the former compression and liver relocating my abdominal and pelvic organs and preventing my diaphagm from fully expanding...and squashing my kidneys into chuncky blobs instead of the long, but relatively narrow organs they used to be).

That said, adhesions are by no means the ONLY cause for pain; there is so much going on inside our bodies it's nearly impossible to figure out exactly what the cause is for any one particular pain episode unless we were to live in a CT machine and the changes were to monitored on a near constant basis (and none of us want that, too much wasted time and expense, not to mention way too much radiation!). Our kidneys are incredibly ennervated with sympathetic nerves (nerves that sense pain, not just control function). It still baffles me why doctors not only expects but insists that part of the clinical diagnostic criteria for a kidney infection is pain in the kidneys, but then turn around and will insist that polycystic kidneys can't hurt...what nerves do they think causes the pain from the infection? But that's another saga for another day.

I get an internal stretching pain depending on which side I lie on; I'm fine on my right side (although my shoulder and hips ache from the overuse), but when I lie on the left side it feels like my liver and kidney are being pulled from their anchors (and yes, naturally your kidney is anchored to your body by tendons (and blood vessels); it's not exactly free floating but it's not solidly tethered in place either) and down to the left (how I don't know, since the liver already takes up all the available space on that side so there's really nowhere to go). But it downright hurts more often than not. So I simply avoid lying on that side unless I've needed to take my breakthough pain medication for some other reason (I won't take it just to find an ultra comfortable sleeping position, tossing and turning for hours at night is much more fun...I have dreadful sleep problems as it is!).

So my LAYPERSON guesstimate would be your kidney is pulling on some internal tissue due to some past adhesions (which occur whether you feel the cyst ruptures or not) and may well be irritating/aggravating some muscles on your side. If you were to move so the pressure of your kidneys were more on the other side (actually towards the side with the pain instead of pulling against it), or even a gentle adjustment in how you sit in a chair, it may help alleviate the pain and pressure a bit faster. So will heat (just keep a plug in heating pad next to your favortite chair and turn it to low and apply to the area to help relax the muscles and surrounding area when this happens). Since your pain isn't long lasting, pain medications and muscle relaxants are going to take too long to kick in and do much of anything but cause delayed pain relief and probably some sedation with the muscle relaxant (if it works at all; I've always found them to be utterly ineffective and wondered why they still make Flexeril since no one I know gets any relief at all from it).

Our abdomen and back have so many muscles, large and small, which are what enable us to walk upright and remain standing and each serves a very specific purpose. With PKD we often aren't able to get those muscles the exercise they need, but instead manage (not intentionally) to get plenty of adhesions to the attached fascia and muscles themselves and thus cause additional pain, above and beyond that caused by the expansion of the kidney capsule itself.

BTW, unless you're already doing an abdominal routine with the approval of your physician and are NOT experience cyst ruptures or pain, when you have PKD, it's essential that before starting one, or doing any exercises that use the abdominal muscles and increase intra-abdominal pressure (to include Pilates and some Yoga positions), you need to have a serious conversation with PKD literate nephrologist. The increased intra-abdominal pressure caused by crunches, twists and other exercises that can compress the abdomen and cystic organs can cause serious damage and alas, even 6-pack abs aren't going to keep your kidneys or liver in if/when they continue to expand. I had fabulous abs and a well-defined waist (the classic hourglass figure) for decades, but as time went by and my organs became more cystsic, I have to forgo the abdominal exercises (and running, which thrilled me as I hate, loathe and abhore running and only did it because the Air Force mandated it and I did as little as possible just to meet my annual run requirement (otherwise did brisk walking, treadclimber, elliptical, bicycle, etc.)!) to avoid cyst ruptures and while I still kept my waistline for many years, there came that point of where my liver expanded and took over my waistline (weird; it was not my kidneys, but I have the liver that wants to rule the world, but is stuck in one body at a time!) and I suddenly no longer had a waist (sobbing ensued, vanity, thy name is woman who no longer has a wardrobe that fits!).

On yet an entirely separate note: I've always wondered why preganant women don't hurt like heck when they go from carrying a peanut to carrying a moving bowling ball in their uterus, but I also understand that portion of our bodies (women at least) was meant to expand and the type and amount of hormones racing through the system during preganancy prevents the sensation of pain from the rapidly expanding uterus (a very complex system).

Alas, we don't have the benefit of the same process and hormone excretion to ease the way for our kidneys and liver (and it wouldn't be good for the liver in any case; too much estrogens are a known contributor to liver cyst growth...but there is first something else that causes the liver to develop extensive cysts; having children is NOT to blame!). They are not meant to expand for starters, but instead are incredibly ennervated with sympathetic nerves (those that sense pain, not just tell an organ how to function), and we get no benefit from a positive hormonal surge that causes us to glow and prepares us to "deliver" these enormous kidneys and/or liver...for life!

And Norma, there is no difference in how pain and cyst ruptures are experienced between the PKD 1 and PKD 2. This is a single disease and the genetic phenotype is just what you happen to have, but makes no difference in how a cyst ruptures or how you feel (keep in mind there are those who have undergone genetic testing, even here on the board, who test negative for both known form of ADPKD, but most assuredly have ADPKD and all the clinical markers. They have a yet-to-be-identified genetic anomaly, so there is still at least one more ADPKD genes to be found and there are multiple standalone autosomal dominant polycystic liver disease genes to be found as the two known genes only account for about 1/3 of all PLD-only cases!). We're still in the infancy stages of PKD/PLD genetics; the first PKD gene wasn't even found till 1994 or 1996, so we have a long, long way to go before the genetics are understood (but the PKD1 gene had over 200 known mutations as of 2005; invariably many more have been found in the last 5 years!).

As usual, I've written a novel and long since digressed from the topic at hand. Bottom line: Yes, I suspect you are experiencing a stretching, pulling senstation that does involve muscle and fascia due to former cyst ruptures that caused internal adhesions from your kidney against the internal fascia/muscles of your retroperitoneal cavit and back as well as the peritoneum. So your doctor isn't completely off base in calling them muscle spasms, but didn't do a very good job at explaining how or why they occur.

I hope my ramblings and musings have helped clarify how and why the fascia and muscles get involved...this disease involves so much more than just the kidneys!

Best wishes for a pain-free day!

Thanks so much Ruth, I've just finished reading your mini novel..:) It does make perfect sense the way you explain it all and much more in depth than just saying with his head down, that they are muscle spams and not much anyone can do about them.. I need to know why things are happening and you have helped tremendously! Now I can explain to my sister why we have these awful pains in our bellies and that God had nothing to do with it.

About carrying a screaming infant inside your abdomen for 9 months, it doesn't hurt, anything close to the pain I experience with PKD. Sure after we are in our 8th month and can bearly walk, sit or stand up tall, we have a certain amount of discomfort, but nothing compared to what I have going on now and nothing is going to come out of me to relieve the pain. It is amazing as you so thoughtfully pointed it out to me. Then again I was a very young woman when I had my children, now I am a very old woman trying to do the very same thing? Odd, isn't it?

I'am fairly certain that I've had cysts rupture in the past with some pain and bloody urine, but not enough to send me off to the doc's. Interesting about the kidneys being "sticky" as a result of that happening, makes perfect sence. I'am having an ultrasound done to take a look at my kidneys in the next couple months. I've gotten pretty good at being able to tell what the techs know and don't know and have somehow wiggeled my way into their good graces, with innocent questions that they are happy to answer and probably shouldn't, but I've got this thing that I do and it usually works! Yes there's the rare occasion that it doesn't, but we can't all be perfect can we. If there's anything they can tell me, I try very innocently to get all the information that I can. I know, I'am a very bad girl, but I can't seem to help myself. So perhaps I'll be able to get a better look at these "things" inside me, other than a radiologist's report.

Thanks again Ruth, you have restored my faith in the unknown!

lots of hugs,

I am constantly asking the technicians questions and as soon as they know that I am well versed in my disease, they are more than willing to let me see my images as long as there isn't a supervisor around who is adament that patients can't see their own scans (and I'm finding that to be rare as even they are fascinated with what they see and I can often point out markers and identify structures better than they can!). From my first ultrasound on, I've been able to see the screen and have always asked questions...I told the technician up front that I knew I had a 50/50 chance of having PKD and knowing my family history (what little I knew at the time, father, uncle, brother) it was more likely to be 100%, so even he let me view the screen. And since I was calm when he identified the first cyst, he continued to let me view the images as the appeared and I've done so ever since. The only times that hasn't been an option is during some echocardiograms when my position, the image on the screen and my ability to spin my head around more than 90 or so degrees simply don't match up, otherwise I watch those too, in utter fascination (and have learned to warn those techs about the cysts in my liver as they will scare the bejeebers out of the technicians when they invariably find one or more!).

There's nothing wrong with asking to see, at least once you know you have PKD. What you can see can be fascinating, although I'll be honest, ultrasounds are blobology to me and I have no idea how anyone figures out what any structure is! But the echos of the heart are fascinating (you can see the heart pumping and the blood flowing, just upside down and backwards on the screen; just as all CT scans and MRIs are viewed as if you were standing at the foot of the patient and looking down or up at them, so left is right and right is left...something I've had to remind my nephrologist and even a radiologist of a couple of times!

I'm glad I could shed some light on the "muscle" pain. I'm quite confident you've had plenty of cyst ruptures in your lifetime, probably a large number of them without any noticeable blood in the urine or maybe even pain (the ones that cause the hematuria were generally still part of the collecting system or involved multiple cysts that were near or part of the collecting system, thus the presence of blood). And pain, well that can be from ruptures, or just the stretching of the kidney capsule, or pressure on adjacent structures or the tug of adhesions or nearby structures, fascia or muscle expressing its displeasure at being inconvenienced by the presence of these cystic organs. There is no one answer that fits every conceivable situation, but that head down, must be muscle spasms answer is a reasonable one.

Lots of gentle hugs and hopes for a much more understanding and calmer musculature system...and fewer issues with your spinal stenosis as well!

Oh Norma I feel for you!

I have that too!

I went to the ER recently because I seriously thought something may have been wrong and they said I must have pulled a back muscle.

Gave me anti inflammatory drugs that did absolutely nothing for me.

It's hard when others and especially doctors don't understand. I was told by my good nephrologists when I had them that cysts just cause pain in some patients. And it depends on the person as to what degree of pain they're in. Some of us are just not as fortunate as others. :(

But yes...I know the feeling of the sudden, knee dropping attacks because I get them all the time. I avoid going out a lot because I don't want one to happen somewhere in public. I don't always like to rely on the mobility services available at stores. I like to get exercise where and when I can. But I have epilepsy too so worrying about seizing in public is already hard enough.

I hope you find some relief. I just do my best to distract myself. I sing. I find someone to talk to. Anything...

*super big hugs*

Thanks so much Jen, I have never known anyone who had these things and drop to the floor pain, is exactly what they are. It's crazy to get comfort just from knowing that other people are in the same sort of pain that you are huh? The power of networking! Take good care of yourself and how are you doing by yourself now, great I hope! Remember we are always here for you!

lots of love,
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