Hi I’m 16 and have drain pain when I use the cycler on PD and the pain is unbearable I also have pain on CAPD which I’m currently using but it’s much much much more bearable. The pain was in my groin and rectum area the pain was in my testicles penis penis head and my bladder muscles would quickly contract. My PD nurse said it’s the way boys bodies are and after 2 weeks it would get better but on Monday when I tried it still hurt and I also didn’t have any fluid in me. My PD nurse said that the catheter is hitting a nerve in my pelvic area and I assume that the catheter is to low but everyone says it’s fine I also have a catheter that circles around like a pig tail. What suggestions do you think I can do or just keep doing CAPD till a kidney comes. Sorry this is so long lol.
That pain is horrible and am sorry a young guy like you is going through this. The good thing is that this pain for certain will go away and I say that since I do a fair amount of PD at our institution. Your nurse is correct about irritating a nerve in your pelvic area. Could you describe when the pain is worst, such as at the end of drain? or is it whenever it occurs? If its primarily with the drain, tidal PD could be an option. you could check with your nephrologist to see if a very low dose gabapentin may be of benefit, but since you are on CAPD that choice may be moot.
keep your PD nurses abreast of everything and this will get better.
It’s whenever it occurs when I was on the cycler but with the manual or CAPD it’s when I’m empty but I sorta do my own tidal with the manual drain I close it after nothing really is coming out. Also what is gabapentin is it some type of pain killer. I also still have some oxycodone for when they put the catheter in back in April.
Judith Bernardini says, “First of all, I would like to say that PD is not to be painful, so we must address this problem right away. You have been told correctly that the tip of the catheter is clearly pressing on a nerve or several nerves perhaps. Drain pain is caused when the catheter no longer floats in abdominal cavity, and then pushes against organs, nerves, bowel, etc. I presume you do not have pain when you are full. When you are on CAPD, you can manually slow the drain of fluid and stop it altogether when pain begins. What you need to do is determine how much fluid remains in your abdomen when the pain begins. And at that point you should stop draining. You will know how much you put in for that exchange and how much you generally drain. And how far you are from a complete drain. On the cycler, you can program the machine to stop draining at a certain point and begin filling again. Since you are new to PD, you probably have a lot of residual renal function (that is, you still pee a fair amount), so having full fills and drains are not as important as might be for someone who relies totally on dialysis for their clearance of fluids and solutes (creatinine, urea, phosphorus, etc). Your PD nurse can help you determine how much PD you need. It is possible you need an xray of your abdomen to determine where the tip of the catheter lies. And you should consider replacing the catheter, getting a shorter catheter which should solve the problem. Waiting for a kidney transplant can be quite a long wait so try to get your PD nurse and nephrologist to make life better now. Best of luck.”
I would add that some folks have had success with raising or lowering the cycler relative to their heads–often just by a few inches, but sometimes even by as much as a foot.
Thank you for your help and information when I was on PD when I was 8 months old to 4 I never had any pain and I was on the cycler do you know why and if I was to have my catheter position changed where would the best place be. Also why is hemodialysis and peritoneal the only dialysis options
@Dori_Schatell Thank you for your help and information when I was on PD when I was 8 months old to 4 I never had any pain and I was on the cycler do you know why and if I was to have my catheter position changed where would the best place be. Also why is hemodialysis and peritoneal the only dialysis options
Go get a 2nd opinion from another surgeon!!! A good reputable one, not sure how close you would be to a place like the Mayo Clinic, Cleveland Clinic, UMPC. There are plenty of different ones in NYC. That’s the type of place to get a 2nd opinion from. Get an X-Ray done! I’m in the process of doing that now. Going to see a surgeon at Cleveland Clinic.
It is NOT supposed to hurt like that! Having pain once in a while is fairly common. But in your case, Something is wrong…
I am interested to know the outcome of your situation. Please update us.