Well, it's been a few days with no reply, I guess this group is pretty much done. I will post it in the Facebook forum and see if they can help me.

Well I've gotten pain on the side of my abdomen as well but I just figured that's from my stomach or something. I've heard about pain in the sides from pkd but not that area you seem to be referring to. I get a lot of pain in different areas but I also have back problems so I can't say for sure it's because of my kidneys or not. When I talked to my nephrologist he told me that it's rare for pkd to cause pain because the kidneys do not have pain receptors. Have you already tried talking to a doctor about it?

Norma, try not to be so ready to throw in the towel with this group all the time. There are all sorts of reasons why members cannot always respond to posts immediately. Many of us do have serious health problems, after all, and may not be feeling well enough to post on top of juggling families, domestic disasters etc.

Anyway, yes, I have the sensations that you describe. Whether it's actually the kidneys or not I don't know. It could be from adjacent structures which are being impacted upon by the massive organs pressing on them. I have this spasm like pain more from my liver, which I believe is the liver capsule expanding to accommodate yet more cyst growth. This can be very painful indeed. Could yours be from your liver? I haven't found anything that helps particularly. My GP asked a liver cancer specialist for advice on pain management for the liver and he recommended morphine, which I've so far resisted. I can't drive my kids around whilst doped up on morphine so I just put up with it as best I can. It's difficult, though. Let us know if you have any interesting responses from your Facebook group.

Chewitt

I don't think it's unreasonable of me to expect some sort of reply 3 days after I first posted. I was in such pain that I could hardly see straight! The liver is basically on the right hand side of your body, this pain was on both sides of my stomach, trying to squeeze the life out of me! I am sorry if I offended anyone, that was not my intention. I am way to old to be tolerating this type of pain with no resolutions. I am finding it more and more difficult to live each day and am always looking for some type of pain relief. I have Percocet that is about as effective as baby aspirin and the docs have no intention of giving me anything else. My days of suffering are coming to an end sooner than later.

Norma, my liver fills my entire abdomen, so is on both sides. Could your pain be intestinal? You can buy anti spasmodics over the counter in the UK which can help. I'm guessing you've tried the usual hot water bottle? It may sound counter intuitive, but I find that if I can drag myself out for a walk, sometimes the pain improves as everything relaxes a little and rearranges into a more comfortable position. Sitting for long periods can be very bad for me.

This could be a number of things, besides those already mentioned. Have you considered kidney stones? Gallbaldder? It could even be trapped gas, which can be very painful indeed. Prior to my diagnosis I used to have pain for many days and never did find the cause of it, but it was bad that I coukd hardly walk. Pain can also be referred to sites away from the area afflicted, so it's sometimes hard to know the actual source just from where you're feeling it. You should probably see a doctor to have the pain checked out in case it is something that needs further medical attention, aside from pain relief. I'm sorry you're suffering and hope you find some relief soon.

Chewitt

Yes, I understand too. And like you Chewitt, I haven't a clue anymore what the hurt is, because there is so much crowding. I could go through a huge list of "what it might be". And for me, my transplant center is a couple thousand miles away, health insurance is a joke... I go through the "I give up" and "I will try to figure this out" stages. We are all different personalities, and when I am in trouble, often I don't ask for help... I am a bit too much of an introvert, I suppose. I just don't know how anyone can figure out which organ is hurting in these tightly stuffed bodies... without dissecting us. I know, I am no help at all...

Thank you for your suggestions. I have no gall bladder, that was the first to go. Jim and I go to the gym almost daily if I can manage it, so exercise is out. My doctor thinks the cysts are growing at a record pace! I never had a big belly until this past year, now I am fully engulfed with mammoth kidneys! They are literally squeezing the life out of me and I can't imagine what he is going to do? He mentioned aspiration, removing a kidney is not an option as I am hovering around 2.1 today and He fears that if he removes a kidney it will push me into dialysis and I sure don't want that! I am basically too old to do much of anything, and he is going to get me back in the pain clinic, it's my only option. I told him I am familiar with aspiration and that it's usually temporary relief at best, he agreed but is willing to do anything to help me. We shall see. Lots of love, Norma ...

With pain of the intensity that you describe the possibility of kidney stones should be considered. I hadq sever pain similar to what you had and was initially told that it could be a bleeding cyst. After morphine and percoset the doctors decided to do additional test which revealed a large 5.3 mm kidney stone. Like yourself I was miserable and the doctors were saying that they were not sure what it was. I literally insisted that they find out the reason for the pain and finally they did as result of proper testing.

Norma,,
I'm sorry I couldn't answer your question when you needed it most. I've been having a bad couple of weeks and simply haven't been up to getting on line.

What you may have experienced is renal colic, which occurs when the entire kidney goes into spasms. They can be exceedingly painful and can last for minutes, hours or even days. Generally you can't find a comfortable position and don't want anyone to touch you anywhere (when this happened to my brother after his cross country skiing accident that led to both of us being diagnosed with PKD, the only place he could tolerate being touched was his big toe, and so a very gentle squeeze of his big toe substituted for a hug and a kiss since everything else was off limits!).

I wen through this after having lithotripsy to break up a very large kidney stone; that bout of renal colic lasted 2 days, but fortunately I was already in the hospital and the event was expected by the doctors who immediately responded with heat and lots of heavy duty pain medicine so I don't remember much of those 2 days other than my trips to the bathroom (TMI, but my urine was the color of dark cranberry juice, as expected after they had been slamming my kidney/stone with sound waves for 1.5 hours). The good news was that the renal colic subsided and the stone broke up into such tiny pieces it left my body silently and painlessly (well, once the lithotripsy and renal colic was over). Never knew what kind of stone it was and never has another one.

Hopefully you will never have another bout of this again. But also don't assume that what you had WAS renal colic.

REMEMBER, we're a system of systems and not every pain or problem we have is caused by our cystic kidneys or cystic liver. Pain can be referred and what you perceive as being kidney pain may well be coming from your GI tract or your back or some other internal organ.

Norma,
2.1 is not dreadful. Your nephrologist isn't going to know what the impact is of removing one kidney if he doesn't run a nuclear renal scan to determine how much each kidney is contributing to the whole. It may turn out that one kidney is barely working and the other is carrying most of the load, so removing the one that's not working much at all will have a minimal impact on your overall kidney function and you won't be any closer to dialysis than you are now. He needs to be proactive, but you need to push him to be so.

Getting back with the pain management clinic is a good thing; your pain needs to be managed properly regardless what direction you go.

Consider yourself hugged, very gently.
Lots of love,
Ruth

Thank you all for your good suggestions! Something new is going on, for instance if I lean in an arm chair, my kidneys raise holy hell! I have to sit up straight immediately or get up and walk. After about 15 mins. Or so, it goes away, excruciating pain to say the least. Like I have touched a cyst or something. I have no clue what that could be. We have to go to Virginia beach in a couple weeks for yet another graduation. This is our 3rd this year! We have been to Boston, Albany, NY and now VA. Each time I do these things it takes me weeks to recover, I am dreading this one the worst! As I am in such poor health. Of course I don't look like I am sick and no one really believes me when I say I am not well! I would like one of these people to walk in my shoes for just one day!! One stinking day!

Thank you Ruth for your encouraging words, I hope you are feeling a little better yourself. What you say does makes sense and when we get back from Virginia, I am going to suggest this to my kidney doc, Dr. jay for short, love this guy, wouldn't you know I finally have found the most wonderful and compassionate doctor in my life at the end of my life. Consider yourself hugged by me

Norma,
I now find it impossible to sit without very considerable discomfort. It feels like my ribs are digging right into my liver, front and back. At the same time, organs lower down seem to catch on my pelvis, which is most unpleasant. This is in addition to liver/kidney/ squashed organ pain. I twist into strage positions to try to find some relief, and find myself sitting with my arms above my head to try to increase the space available a little. It's not exactly restful! I fully sympathise with you regarding the discomforts and pain resulting from travel. I have to think long and hard before I commit to anything now, as everything seems to be exhausting. I hope you manage to negotiate the graduation trip without too much suffering.

Wishing relief to all who have these rampaging organs,

Love Chewitt

Thank you chewitt, I can't even imagine having a liver as huge as some of you have, it's just not fair to anyone Quite some time ago, I requested that my NP stop sending me for ultrasounds every six months. Not only does it hurt, it seems to serve no purpose, what do you think? Does your doctor send you off for them every 6 months? I asked why one time and was told by the NP that people with PKD often get kidney cancer! What I said!!! I have never heard of anyone getting cancer, let alone PKD patients and if they do, it's pretty rare! That FB group has thousands and thousands of people from around the world a never have I heard of this in all my life! However, I am at the point of asking them to take a look just to see how big these dam things really are and if there is any sort of possibility of taking one out, also a neucler scan! I am at the end of my rope and can't imagine how you and Ruth are coping! Lots of love, Norma ...

Norma, I haven't had any imaging of any sort for four years. Nobody seems to bother. I had an MRI scan before my one appointment with the liver consultant, and the renal consultant sent me for an ultrasound when a new, large, painful lump appeared to check it was nothing sinister. I now have tennis ball sized lumps sticking out everywhere but since I'm never examined by anyone, they are ignored. I have heard that kidney cancer is slightly more likely in PKD patients, but as you say, I haven't heard of anyone with it.

In a way I'd like to know more about what's going on in there, but on the other hand, I wonder what the point would be. It won't achieve anything. For you, it will be necessary if considering removing one of the kidneys. As for coping? Just about, because we have no choice.

Love Chewitt