Because no one else is replying, I will give it s shot! I have had the same pain as you describe and I have heard literally 100's of people say as you describe. My doctor doesn't seem alarmed and neither do the others that have complained. I don't know what to tell you it is, mostly I get crippling pain in one of the other of my sides, stops me dead in my tracks. I wish someone would reply that knows more than I do, we will just have to wait and see. If it helps any, you have my sympathies. Lots of love, Norma ...

Yes, I have that. It's just one of many pains so I accept it as part and parcel of having huge cystic kidneys and liver, wait for it to go and carry on as best as I can. It could be a cyst rupture, something being squeezed.....who knows. You would have to walk around attached to an ultra sound scanner to have a chance of really knowing what's going on! I'm just grateful whan it goes away.

Chewitt

You know, something I have been thinking about (with the many issues we go through) is that unless a doctor has been through this, they really can't fully understand, unless it is in their "recipe book" as I call it. For instance, my dentist has gone through some of the gum grafting that I have to have done, and wow, to have him understand, I can really trust him. But yes... sometimes our issues just don't compute with what little experiences some of our doctors have.

Only just this week, I discovered on my own that I have vaginal hemorrhoids, or varicose veins, not sure what you would call it. But it is just one of many issues that I don't bother to share with the doc. even though he is a good doctor.

But really, why the pains come and go as they do... I just don't know, and don't know how the doctors would know. I mostly have it at night when trying to sleep, but there was a time in the past that it hurt sitting, and other times standing. It's never the same.

When I have had this it has been bleeding cysts confirmed by CT scan, usually end up in hospital on morphine when it's really bad and not settling, I also have oramorph at home to manage it.

I use a wheaty bag to help ease the pain it seems to help

What is a wheat bag?

I can definitely echo everyone else here on this subject. I would say that most people with PKD are familiar with a whole spectrum of pain, from prolonged and achy, to sharp and intense (and sometimes lasting for a while), to days when you don't feel too badly at all and almost forget you have it! One of my theories (that my neph supports) is that the more intense kind of pain is associated with stretching of the cysts and/or even small bleeds and ruptures that don't show up as visible blood in your urine. He believes, and I have noticed this, that fluctuating estrogen levels may actually have a contributing factor. I've noticed since being in menopause now that my bouts of more severe knife-like pain are fewer than they used to be. (I tend to wake up with them at night a lot, which they say is when estrogen rises). Other things like sitting a long time or after strenuous activity I may really notice it too. The most confusing thing for me is knowing when the pain is indicative of an infection. I usually run a temp with infections, as many do, so I rely on that, but any bad pain that doesn't go away after a few hours is always worthy of a call to your doctor for at least a urine check. I THINK what they mean by wheaty bag in this thread here are those wheat- rice bags you can heat in the microwave and put them on your back. I heat up plastic bottles of water and use those sometimes or use a heating pad. Heat seems to help most! :-) Hang in there and know you are not alone! This site has been a great support to me in that way...even if many of us are still searching for the answers to things! Cheers to you!

Wheaty bag is a bag of wheat you heat in the microwave it is fanbloodytastic for pain in the kidneys

I have a microwaveable cherry stone warmer which I use for neck/shoulder pain. I also have an electric heat pad which can be used anywhere and can be very helpful but a bit much on warm days!

I agree with chrissy about pain coming from cysts stretching. This is a major source of apin in the cystic liver. As cysts expand, the liver capsule stretches and can be EXTREMELY painful. I'm currently struggling with my ribs being in the way of my still expanding organs. I don't know whether my rib cage can expand any further, but I'm in trouble if it doesn't. I can't find a comfortable position wherever I put myself. I also feel my liver sort of catch on my hip bones/pelvic girdle, which is horrible. No amount of heat will help this particular problem; I just need a very much bigger skeleton.

Best wishes to all,

Chewitt

My mum is waiting for a liver transplant due to her liver getting so massive thanks to the cysts, it scares me to think I may end up the same as she has been very unwell due to it stopping her being able to eat properly, and just getting about is difficult.

I've recently had that pain as well, it was on the right side and it was very pain. It lasted for about 2 days and was pretty scary, I wound up seeing my doctor the next day or so and by then the pain was gone. Since I also have spinal problems as well he recommended me to get an xray of the spine to see if that was the problem and also wanted me to get a urinalysis to see if there was a problem with my cysts. When I went to the lab to give a urine sample, what came out had me completely scared as my urine was red and that was the first time it ever happened. By this time the pain was already gone, but I feel that it might have had something to do with it. I seen my neph. shortly afterwards and he basically told me that it's something that happens to people with pkd and what not. I haven't had the pain since then but I definitely do not look forward to it again.

Billylyne,

I wish your mother well with the liver transplant. Please keep us informed of how things are going for her. I really hope that your liver doesn't go down the same route, but it doesn't necessarily follow that you will be like your mother.

Enigmatic,
Cyst rupture can be accompanied by bleeding, but it's not something you really need to worry about. I once had severe bleeding into liver and kidney cysts following a bout of strenuous activity (the snow shovelling incident) which came a couple of weeks after the (unbearable) pain started. The bleeding produced urine like red wine for a week or so then stopped, but the pain lasted for many weeks. That was the worst event I've experienced and I hope I never have a repeat. No more shovelling or other such activity for me since then! I can't carry any weight, do shopping or anything like that without triggering severe pain. I just have to tailor my life to my limitations.

Chewitt

Chewitt
Thanks for the response, that red wine is a good comparison. That is what it really looked like for me as well. It only lasted for a day for me, and it must be hard for you I'm able to relate to that as well, it's very limiting.

My husband has had PKD since he was 12. He gets these pains and they can last up to an our. It is a cyst popping. Drinking caffeine can make the cysts multiply and dark pop makes them thicker. I'm thinking the thicker cysts cause longer pain.