Hi billylyne5,
So sorry you're having trouble again. I think there a a number of points to make:
1. You don't really know what's happening without a scan. It may or may not be cyst bleeds.
2. Cysts could bleed in both kidneys at the same time if you are doing something to cause it like lifting or carrying heavy things. (It doesn't take much weght at all for my cysts to rupture. Just turning over in bed awkwardly can do it). Some people do have recurrent bleeding issues.
3. It could still be the infection which is never actually going away completely. You may need up to six weeks of the correct antibiotics. (http://www.pkdcure.org/document.doc?id=22)
Some cyst infections are hard to treat because the antibiotics don't penetrate the cysts easily.
4. I had no consultant when I was hospitalised and it was hopeless. Unless you have a consultant who knows you at the hospital you're admitted to, you will struggle. I made sure I was referred to a consultant after that episode and have had regular contact since. The secretaries are good about responding to calls, too. You need to change.

In the meantime, you need to rest, as you know. Have a think about whether you might be doing anything to cause cyst bleeds. It could be something very simple that you do frequently but don't realise the effect it's having. Lifting, carrying and bending are prime culprits, but also anything which is high impact eg. Jumping, running, dancing. I had to give up grocery shopping as it caused me problems every time.

Take care,

Chewitt

Thanks Chewit

I am seeing my GP tomorrow so will sort out changing my renal consultant, I'm a bit annoyed the urologist didn't sort that out, but he made it quite clear he thought it was too complicated for him to do which is just him being lazy as he is in the same hospital.
I know you are right about not knowing exactly what is going on without a scan, but I can't keep having CT scans it's not good too have too many, ultra has never shown up anything in the past so not sure how this would be managed.

I am not getting typical symptoms of infection, no high temp, and blood and urine not showing infection so Drs discount the possibility.

I have struggled through work this week, I don't doing anything excessively strenuous and nothing has changed with my usual routine, but of course I do lift the shopping and carry the washing basket etc the usual things that are everyday life, short of doing nothing at all it's a bit difficult to cut things out,although if it stops this happening I don't have much choice I guess.

The pain is in my loin,s very sharp and agony at times, then settles to a more dull ache, but also in front under ribs and also into my bladder area and even hips.
My poor GP must be fed up of me, I spend my life peeing into sample bottles and being prodded in the kidneys, it's driving me mad.
Well I have 4 days off work now so am resting as much as possible.

Hi there,
I know it's hard to imagine not doing all of those things which are part of everyday life like shopping, carrying laundry etc. It took me a while to accept that unless I wanted to have constant problems I had no choice. It's a good way of training the kids to take out the rubbish etc. and I make good use of suoermarket delivery services. If I go out to buy anything heavy, I have staff carry it to my car and leave it there for someone else to take in the house when I arrive home. I find stretching is another thing to avoid too much of. It's frustrating but necessary.

I think you're probably right to think that you would feel ill with an infection. I certainly did. Of course, often urine samples prove negative because the cysts are cut off from the urinary system so the bacteria stay in the cyst. I asked my consultant about the pain I experience in my hips and groin area. Apparently it's referred pain from the kidneys.

I understand what you say about scans. My liver obliterates my kidneys (and everyhting else) so ultrasound is useless. I've never had a CT scan and haven't had an MRI scan for several years. The only sure way of checking for infection is to sample cyst fluid, which is a bit extreme.

One more thing: don't let doctors prod you too much. That in itself can cause problems like ruptures of fragile cysts. I always tell them not to press too hard and they get the message.

Hope you feel better soon,

Chewitt

I agree about the prodding, some of them are very rough especially the ultrasound radiographer who I told to stop pressing so hard as it hurt.

Well GP has done refferal to nephrologist at my local hospital but they have appointments as they are very stretched so it could be a while, so I will keep my appointment at the other one as well, at least I can ask them some questions.

My last blood results are in and amazingly my creatine and egfr are improving and are actually the best they have been for ages
Creatine is 85 and egfr is 71 so pretty good, which is a relief I was getting a bit nervous they all this pain and problems were an indication of things getting worse.

My GP has told me to see my occy health at work again to just try and make sure I can manage my work, which is an issue when I am suddenly incapacitated with pain. I'm not sure how to handle work really.
Thanks for your input x

What exactly is a bleed?

A bleed is when there is bleeding into the body of a cyst. It can be very painful indeed.