Catheter pain is is probably greatest when the thing is being put in, and sometimes when it’s being taken out. But after you’ve survived urinary catheter insertion, at least for most people, the worst is over. However, depending on the type of catheter you had installed (a urethral or a suprapubic catheter), you may still experience some catheter pain, especially in the case of an indwelling catheter that is expected to stay in your bladder for awhile – usually from a few days all the way up to forever.
My catheter is of the suprapubic type of indwelling cath. It is a Foley catheter, which means that it is held in place by a balloon inflated with saline inside my bladder. Now as you can imagine, having something the size of a golf ball with a little straw-like tube sticking out of it (that’s where the urine goes in) sitting in your bladder is going to feel odd to some degree, and occasionally cause some pain.
In my case, the catheter pain felt mostly like an urge to pee, which is fairly unpleasant, especially since you cannot just relieve it by going to the bathroom. Your new reality is that you don’t go to the bathroom in the same way anymore. Your bladder pumps out your pee through the catheter. So what do you do about that urge-pain?
So what can you do?
My urologist called it a tickle. The catheter is tickling the inside of my bladder. I don’t really agree that it felt like being tickled, although that would be one way to torture me. I HATE being tickled. Anyway, he said (and this is true) that feeling would diminish over time. But later I started to feel an different kind of catheter pain – a bit sharper and lower down. I called the nurse at Urology and asked about this. He said the catheter was probably sitting low in my bladder and that I could just pull it up. Wait, what!? Yup. He said just to gently pull the tube so that I could raise the position of the balloon and tip of the catheter in my bladder so it wasn’t sitting on the bottom.
I gotta tell you, that was a weird thing to do. But it worked! I’ve seen some on-line warnings against pulling on your catheter, so I was a little surprised when I was told to try it. But my assumption is that those warnings are there to stop people from yanking on them. After all, the ARE held in place by an inflated balloon, and some folks may not know or remember that fact. If they try to remove their own catheter without first deflating the balloon (done with a syringe using the 2nd tube ending), well, it could do some damage and cause some REALLY serious catheter pain.
By way of a disclaimer I am not a doctor or a nurse. So make sure you check with your medical professionals before trying the “pulling method” I described above. But it does work for me. And hopefully it will help you as well.
Since I had a suprapubic catheter, and not one “the normal way” (transurethral or through the penis if you’re a guy:-P), things were a bit different. The balloon of the catheter was supposed to be on the side of the bladder with the tip projecting into the middle space. So pulling it back against the bladder wall made sense. This pulling remedy may not work if the have the catheter the normal way. But there is good news (at present, mainly for the folks in the US though, sorry to say – but watch this space for news on that!)…
The Best Way To Prevent Pinching Pain Entirely
No matter how your catheter is inserted, there is a way to completely eliminate the pinching/sucking of the catheter tip. And that is to use a new type of catheter called The Duette. You can read more details about it here: The Duette – A Better Catheter Than The Foley. But the bottom line is – unlike the standard Foley catheter (Foley is a brand name, BTW), the Duette has 2 balloons with the inlet holes in between them. This means there is no tip at the end to stab the interior of your bladder and to suck on the bladder wall. With the Duette, the little inlet holes can’t make contact with your bladder wall (being between the balloons), and so not only will you not get the pinch pain, but your risk of catheter induced UTI (CAUTI) is reduced due to the reduced trauma. See the video on my article about the Duette.
So how do you get a Duette?
As I alluded to above, Poiesis Medical (the creator of the Duette) cannot ship outside the US. There are a lot of legal hurdles they need to clear to make it practical. And they are working on it hard. But if you are in the US, all you need to do is contact your nearest DME (durable medical equipment) supplier. The Duette does not require a prescription. So you CAN simply purchase them directly from the DME for about $13 apiece. If you are getting your supplies through your medical insurance though, just contact the DME for how to set up billing for that.
Cheers.
Ken
After 3 days of a Foley it is out for 2 days is there anything one should do aleviate the pain from peeing seems like my uretha is bibber feeling but flow was really forceful at first now it is getting less and varied stream, has anyone heard about massaging it or anything else to bring relief and best outcome I had the inside of my bladder catarized to trat the Hunners ulcers, anyone have any tips on that ? please send to my email
Bucko,
I’m not a medical professional, so keep that in mind here. But my take on your situation is that your bladder may have be having occasional spasms. At the very least, your condition and its surgery will have traumatized your bladder quite a bit. So it may take awhile to start working correctly and reliably again. I would recommend asking your doctor about a medication called Oxybutynin Chloride. That is to help control bladder spasms and bladder pain. In any case, you should definitely call your doctor about this to get an official medical opinion.
Hope that helps!
If anyone else has input, please comment!
Cheers,
Ken
I am having SEVERE pain at the end of my penis since having a spc fitted.
The specialist says it is Transffered Pain.
I was given tablets to relieve the spasms supposedly the problem. NO relief
So I am going to try the Gentle Pull method.
if the catheter is sucking on the inside of my bladder I hope this is going to help. Wish me luck
Oh my. I’m so sorry to hear that, Steve. It does seem strange to have pain at the tip of the penis if you have a suprapubic catheter, since there is no pressure on the penis at all. If it is the skin/tissue at the tip that is painful, maybe some topical ointment like Neosporin with pain relief (lidocaine, I think) would help? Either way, good luck with this!
I found a form of lidocaine rubbed around the insertion helped. Better yet use it a day before and on the insertion date. I then toook two Tilonal.
Thanks!
Hi, I have MND and Interstitial Cystitus and was doing self catheterisation until a fall has left me pretty much little or no mobility. I have an IDC at the moment which is causing severe suction type pain. I usually use latex, but this time we have tried silicone, and the first week was great! Did anyone else try silicone and how was it? They are suggesting that I consider the SPC but after reading a lot of comments on here, regarding pain etc, did it really “help” or give you “quality of life?” I am confused as to which way to go now, as pain and I are not friends!
Hi Carmen,
I can only speak to SPC vs urethral catheter, not having had to deal with the other stuff you’re dealing with. But I can tell you with utmost confidence that for me, having the SPC was a godsend! I had to have an indwelling catheter for 5-6 months and it would have been SOOOOOOOOOOOOOO (getting the idea?:)) much worse if I had to deal with any kind of urethral catheter. Yes, it was a huge quality of life enhancement. There was rarely any problem once I got ready for the day – putting a securement sticker on my upper leg with enough slack not to pull on the entry site, but a secure enough grip that weight (or a pull.yank) from below on the bag tube couldn’t affect the actual catheter – I could attach a bag under loose-fitting pants and be totally independent and free. When I had the post-op cath in my urethra, it was a constant discomfort. I was always aware it was there, whereas with the SPC, I went hours when I didn’t think about it at all.
I hope that helps.
Ken
My husband has the SPC (1 week ago) and Dr. thinks it will be permanent. The SPC seems to be working OK, however, he has had another problem – cannot sit down – it puts pressure on his uretha area and pain. Did you have any of that? Doesn’t have a Dr. appointment for several weeks and does not have any pain meds.???
Hi Gina. Sorry to hear about that. You say his urethra hurts him? So that wouldn’t have anything to do with the catheter, since it’s an SPC and goes straight from the bladder to the catheter outlet. So that sounds like it’s something to do with why he has the SPC. If he might have to have it be permanent, that’s probably more than just a stricture, right? Either way, if he is having such bad pain and cannot even sit down, you should try to get him into the doctor sooner. At the very least, you should call them and tell them what’s going on. He should not be having so much difficulty with just simple sitting down without somehow managing the pain. If you can’t get any help from your current doctor, maybe go to an emergency room? Or try to get an urgent appointment with another doctor? Hope that gets better.
Yes I suffer from discomfort sitting.
Told my Urologist and was told “yes lots of people get it,it’s just the catheter pressing on the bladder” that was it! No offer of help or cure
Hi Gina. Are in the US, by any chance? Because if you are, it might be worth looking into getting a Duette catheter, which doesn’t have the stem at the end, which is the thing that both pokes at the tip and sucks against the bladder walls with the holes on the sides.
I have just had my 5th catheter replaced since it was inserted 15 months ago It still gives me a continual painful stinging sensation which is almost as painful as the 3 monthly replacing operation I have tried every analgesic I now of ,without
getting any relief sometimes if I keep perfectly still for a while it abates slightly but as soon as I move it’s agony again and my nights are sleepless and agonising
Does anyone know of a painkiller strong enough to give me even the slightest bit of comfort . Please reply to my e-mail if you can help me . My GP is completely useless
Thanks
Hi Gordon. I’m sorry to hear about the pain! If it is being caused by the tip of a Foley catheter bumping up against the bladder wall, it could be “aspiration,” which is when the (pretty much) continual suction through the tip of the catheter actuall sucks part of the bladder wall into it – like if you put the end of a straw against something that is not a liquid. And yes, that suction hurts! Often, the reason this happens is that the balloon inside your bladder falls away from the opening where the tube comes out of your body, and floats around inside your bladder.
Now I have to preface this with the statement that I am NOT a medical professional. But one thing I was told to do by a nurse in Urology, in order to help with aspiration pain, is to GENTLY and slowly pull the tube away from your body until it stops. If the balloon was already secure against your bladder wall, it won’t move. So stop pulling. But if you are able to pull some slack, that might mean the balloon has fallen away inside the bladder, and you can pull it back into place by this gentle, slow pulling. I would do this until I couldn’t pull any more slack and the balloon was back in place. It might be worth a try.
If at all possible, though, I would do everything in my power to convince your doctor to replace your current Foley (probably) with a Duette catheter. In the following article, you can read and watch a video on why this would be better: The Duette – A Better Catheter Than The Foley I hope one or both of these things helps! Good luck!
Ken
get in touch with Poiesismedical.com They make a two balloon catheter. The upper balloon protects the wall of the bladder. The bottom balloon holds the catheter in place so there is no suction on the wall of the bladder.
Yes. I sooo wish I had been able to get one when I had my catheter(s)! I spoke with them this week and they are still only in the US, but hope to expand next year to other countries.
A million thumbs up for the Duette!
Ken
Belladonna and morphin’e suppositories helps alot.
Ken, different Ken from previous comments.
I had that feeling switched to a latex free and it is way less sensitive
Awesome. Thanks for posting, John!
I had a S.P.C. now for 6 years and while I note and have used the above advice to overcome the pain using the Oxybutynin Chloride tablets 1 twice a day this has resolved the pain.
However has anyone experienced pain at the end of the penis which occurs on a regular basis?
Bob
Bob – do you mean pain there while wearing an SPC? Or Do you also have a urethral catheter?
Ken
I find the pain relief has to be addressed MORE than twice a day. I r=eat hydrocodone like candy- once every 4 to 6 hours. Plus I take an anti anxiety so I dont despair and pull that thing out. This is f-cking torture. Can we use cocaine on it to numb it? Desperate needs make for desperate measures….but be safe and if the doc is human he will help you do what is possible. This IS survivable. Sorry to complain…. 🙂
It’s OK Bill. I was begging for more pain meds, which they were stingy with, on the day of and after my surgery. Finally they sent me home with a prescription and I took it as needed until the pain was more tolerable. Also, they don’t like you taking anti-inflammatories (motrin) within 12 hours after surgery. So when you can start that again, it helps a lot.
It does get better! Keep on keeping on!
Ken
My Urologist calls this “reflected” pain. Pain that comes from somewhere in the urinary system. It really is a pain in the penis!
Yes, I wake up in the middle of the night due to penis pain. Luckily my Dr. keeps my supplied with Percocet and I 5mg pill will take the pain away and I get back to sleep. If you can get to Canada you can buy ACC tablets without a prescription (Aspirin, Codeine, Caffeine) without a prescription and 2 of those will usually kill minor pain. You are only supposed to bring back 100 but they seldom check.
I’m on day one with a full time cath (until surgery/recovery). I self cathed for four days/four times a day. Surgery (TURP) is still five days away. The pain is excruciating and I wish I was still self cathing but prostate was getting irritated and bleeding. The urologist called me after hours and assured me the pain would get better. I hope like hell he is right. I also have the urge to pee and penis feels like it’s been slammed in a door!
Hang in there, Greg. I know it sucks. But in the grand scheme of things, 5 days will go by faster than it seems possible. And not having to self-cath daily will be a huge relief. Good luck on your surgery!
Ken
I know the cath is going to be uncomfortable but I don’t think it should be hurting so bad. The nurse never did return my call, she said it shouldn’t be hurting and she was going to talk to the Dr. Can’t wait to let him know how I feel tomorrow morning. I about ripped that thing out last night. I should have just went to the ER . if these caths are this painful I have a whole new respect for guys who have them full time.
Greg,
The amount of pain you seem to be talking about is not normal. Discomfort? Yeah. But actively hurting the whole time? That does not sound right. You should absolutely follow up with your doc. It does sound to me like something may be not quite right. Good luck and let us know how it goes.
Cheers,
Ken
Had surgery today. Feeling a lot better. The cath I have in now is not bad, but I haven’t got out of bed yet either. We’ll see how tomorrow goes. Thanks for the input.
Glad to hear it Greg. Best of luck in your recovery/healing.
Cheers!
Ken
Really helpful to read all this and feel fellow feeling with others. Thanks, Ken
You’re welcome, Jeffrey! Sorry for he late reply.
I been a uninary catheter patient for two years have I bladder spasms do you have pain with a subapubic catheter
Monique, this many years after your entry you may not see this, but, yes, I’m on here due to the pain in my bladder. I identified it as there by numerous self replacements. I wear the catheter through my abdomen, the suprapubic insertion.
The pain is in my penis, sometimes in the urethra near the tip, corresponding to ladies’ clitorus in fetal development, sometimes in the urethra near my penis base, but always in the urethra. One doctor in a comment here calls this ‘reflected’ pain.
It can be excruciating!
With the catheter out during a replacement, there is no pain.
A few moments of PEACE!
BUT, I also believe bladder infection can be a cause. If the infection test strip I use shows infection, I inject 1:1 clean water with provodone iodine. About 2-4 cc with a catheter syringe. I use a UGO catheter valve to hold and empty urine from my bladder, which allows this iodine to stay in my bladder to kill the microbe infection. I discovered Dr. Mark Sircus who shows how severely deficient our iodine is, and what to do to have health from enough.
Also, as this blog mentions the Duette catheter, I used it as a test, but the balloons fail in just two weeks, or less. At $12 + shipping, and pain of change, they just are not worth their much more comfortable inside bladder fit.
So, yes, there can be quite severe bladder pain from catheter wearing.
Hope my experience of now 5 years helps.
Read where some have pain reduction meds. I stay away from synthetic drugs, but this pain is really miserable at times.
I am a male and have a temporary foley catheter. The problem I have is feeling like I have to pee even though I really don’t because the urine is draining into the catheter. I have been fighting that urge thinking I may pee out the catheter or do some bladder damage somehow, but doing that is very painful. Based on some internet research, it seems like the description that most fits my problem is this that I found on AllNurses.com: “Your urethra will clamp down on the catheter. So, just relax, just like you have to pee. This will ‘declamp’ the tube, and the sensation will let up.” This works for me.
By the way, they sent me home with a prescription of Phenazopyridine (which can be obtain over the counter as Azo) to help with bladder spasms, but in my case, that doesn’t seem to help as much as doing the above relaxation trick.
Thanks for the tip, George!
Ken
I have cathere dont. Kknow what nutt pain at tip f my penis when the pee is draiiining imtrying avil now see whappens
I had urge to pee badly with cath, realized that i didnt get the sesation when sitting on the toilet. got a toilet seat and put it on a board on a chair. works wonders
maybe a hemmeroid cushion would do the same
Wow. That’s interesting Peter. That sounds like the way your catheter was sitting in your bladder; and when you sat on the toilet seat, it repositioned it maybe? I’m not a medical professional, though, as you know. So it’s only a guess.
Thanks for the comment and suggestion!
Ken
Hi I had a spc put in almost 4 weeks ago. It was feeling ok but now the area around where the tube goes in is very sore and I get sharp pains. There is about one square inch that feels quite hard. Is this normal? I called my dr office and was advised it is painful for a while after having it put in. I am going to have this thing permanently so want to make sure this pain is normal now and will go away. Thanks for any info!
Hi Angela. I did not have pain like that. My first catheter was stitched at the skin at the entry site though, so didn’t move very much. It was also not a Foley – it was a pig-tail type, so there was no balloon on the inside. I think that may have helped in my case, though I’m not certain about that – just guessing. They had put a dressing around where the tube went in and I peeled that off (on advice form the clinic) after about 2 days so I could clean it in the shower.
Did you have a dressing there? Also, that area you describe as “hard” sounds odd to me. I also didn’t have that at any time. I think this warrants you going in and having that looked at. I lived by the rule of “if I have any questions that aren’t really getting answered, go in and get seen.” I know I probably bugged them. But hey, it’s YOUR life and your pain. Do not hesitate to ask and ask until you are certain that you have the correct answer.
In your case, I would want a doctor to FEEL that hard spot and see if there is something amiss that may be causing that pain you describe. It may be that it just needs some topical ointment to help with pain and infection if that’s what’s happening.
Over time – the “hole” scarred open and though I’ve never had a piercing anywhere, I imagine that is sort of what happened. It didn’t hurt in the slightest and after 3 months, the regular catheter changes were also pain-free because they no longer needed to use the guide wire to keep the hole from healing shut.
I hope some of this helps. Good luck and let us know how it goes!
Hi Ken,
Your website has been an absolute blessing, I had a Urethroplasty 17 days ago, and I get my foley catheter out in 3 (it is so close). Every time I feel a slight jostle on my insides I panic, and it turns out you’ve been through most of it, so thank you for sharing. The worst part of this whole deal is the paranoia when something hurts or goes wrong.
Now I have the constant urge to urinate (like a tickle) around my foley. I love the terminology the Urologists use to make everything sound less harrowing. I’m going to call my doctor to see if this something I should try.
Thanks again for telling your story. It’s made my experience so much more tolerable.
You’re welcome Jonah. I’m so glad the site has helped. Good luck getting your catheter out!
Ken
Hi Ken, I had my surgery four days ago and had a catheter placed inside my penis, but whenever I have an erection, the pain is so sharp. Is there an anti-erection drug or any pain relief to stop the pain?
Ajayi – that is common. I don’t know of any medication to stop erections. But it might help if you make sure you have enough slack in the tube when you go to bed. Also, try putting some ointment (like vaseline or neosporin) on the tube near where it comes out of your penis. That might help when it gets pulled in and out.
I hope that helps!
Ken
I am 68 with a S.P.C.in my stomach for two years now my DR. changes it once a month the pain having this done is unbearable. Is it normal to get U.T.I on a regular basic . Have even seen a pain DR who was unable to give me any thing that would ease the pain even tried Oxycodone and it did not help.Even the head of my penis hurts can anyone tell me what to do, to help with the pain.Is in normal to have a constant, discharge ,
Robert,
After 3 months with the SPC, the hole in my abdominal wall was scarred over sufficiently that they didn’t need to use the “guide wire.” So it honestly didn’t hurt after that. BUT, the first few changes were, like you say, unbearably painful. It was completely because of the guide wire, which they have to use in those first few months to make sure the hole doesn’t heal up, which it apparently can in a matter of seconds. If after two year, your doctor is still using the guide wire, ask him/her if they can try the next one without it. When I had my 4th one (I think), it was a nurse and not a doctor. He pulled the old one out and left me lying there while he turned and got the new one. I said “won’t the hole heal up?” And he told me that at that point (a few months of having the SPC), it would take 2 or 3 minutes or more to heal up. So there was plenty of time to just turn and pick up the new one and slide it in. He did that and I felt just a little pinch when it touched my bladder wall and that was it! I was sooo happy. I don’t know if that is what is going on with you. But if so, it’s worth at least asking the question. It is not really normal to get a UTI on a regular basis. However, with an indwelling catheter, you are “colonized,” so the bacteria are there. It’s just a matter of keeping them from invading your tissues. I had my SPC for about 6 months and only had one UTI the first month. I wrote an article about this here: Urinary Tract Infection and Catheter Care. There are things you can do to help prevent a UTI, but mostly the stuff about using antibacterials, etc. is not – ironically – supported by any actual evidence. But you should keep things moving in the right direction – like not letting the contents of the bag drain backwards back into your bladder. So always try to keep the bag below the level of your bladder. Stuff like that.
As far as “discharge” goes, I don’t think that is typical. You should absolutely ask your doctor about that. I will say, though, that the inside of the urethra along the penis (well, the entire way to the bladder of course) does produce mucous to keep it lubricated and moist. So maybe it’s that? It isn’t usually a “discharge” though. Another thing is that sometimes (again, you need to ask your doctor about this), urine can get into the urethra even though there is an SPC in there. It actually used to happen fairly often when I was sitting on the toilet – a little pee would dribble out. That wasn’t a problem for me though. It was just what happens with an SPC because there is no tube or balloon to block it (because of the way an SPC is positioned in the bladder).
I hope all this helps.
Good luck!
Ken
Thanks for the info. I have leakage when i have bladder spasms and setting on the toilet . The DR, uses a number 22 catheter could they use a smaller one.My DR says they cant go down it will cause more of a risk of a U.T,I.
Use the infection control catheters they prevent UTI s you can get the from edge park medical or any surgical store don’t use the regular catheters you will get UTI s
I am impressed with all the information I have just read. I had a ‘straight’ catheter placed while in the ER room at a local hospital here in Tucson. I had blacked out at home. I tell you, the pain that I felt in the groin area brought me around. I was cathetered five times within a 12 day period. It was a grab, jab and stab operation and went along these lines: Nurse comes in tries to insert catheter. Can’t. Brings in another nurse. Grab, Jab, and Stab. This scenario went on the entire time I was hospitalized. I learned later that a urologist had told nursing staff to use a Coude #16. Staff did. Couldn’t get that in; called Dr. No response from his office. Back to what I was told was hospital “protocol” straight catheter; grab, jab and stab. Long story short, I am now being cathetered once a month with a Coude # 16 without pain, going on six months and never to stop. Recently I have had a terrible stinging sensation on occasion in the groin area and urinary track. Seems to have something to do with bowel movements and/or gas. Having read the complaints and comments in this blog the one that made sense was about pulling on the catheter a bit to release it from the opening or wall of the bladder. I just can’t do that after all the trauma that I first experienced and certainly don’t want to go to the ER and be subjected to their protocol of using a straight catheter rather than a Coude # 16.
Bottom line, I am pleased? to hear that others are suffering the same experience. It is somewhat of a comfort to know that I am not alone. Guess we need a catheterization support group or an enlarged prostate group as support. Today, Saturday, I will be calling my urologist first thing Monday and see if someone can see me. Darn it.
Thanks for your comment, James. It really does help immensely just to know others are going through the same thing you are. Your grab, jab and stab story sounds eerily familiar. I hope your urologist can give you a good plan moving forward.
Good luck with it. Let us know what comes next:).
Cheers,
Ken
Hey..
I am on SPC from 5 years as i am paraplegic Chest below.
It is great to have a spc as it keeps my social life active. And i change my spc every month.
But i have one major problem. –
I pass motions, once in 24 hrs. But the gas accumates in my stomach by the end of every day.
And it gets impossible for me to sleep due to the vibrations the gas creates with my spc. I even sweat alot the entire night.
Please suggest a remedy.
Thanks.
Nikunj,
Have you asked your doctor(s) or nurse(s) about this? Since I’m not a medical professional I don’t feel at all qualified to speculate on something I have not experienced myself. Maybe what you’re feeling are bladder spasms? I have no way of knowing that. But if it were bladder spasms, there are medications for that, such as oxybutynin.
I’m not saying to rush out and start taking it. But if your doctor/nurse thinks it is bladder spasms, that is what they might give you.
I hope you feel better.
Ken
i have the same problem with the gas everytime i pass wind i feel the urge to pee its a horrible feeling that you cant do anything about when opening my bowels twice the catherter has come out and had to get intouch with nurse and they came out and replace it i have had the catherter for 12 month now its only when they changed it after 3 months was up that i have this trouble the one i had in in november i didnt have any problem at all but this time its been awful one of the times it came out it pushed its way out with the balloon still up and i was in awful pain waiting for the nurse to arrive and she took at least 3 hours as i said in the end it came out very very painful so now i panick everytime i have to open my bowels thinking it is gonna come out again its a nightmare i never feel settled its ruling my life especielly with the urge to pee every time i pass wind which is quite a lot of times
So sorry to hear this, Karen. And so sorry for the late reply! The site stopped notifying me of comments. Trying to get that fixed now.
I don’t have any experience or knowledge of the problem you are having, though. But one thing I did when I had my catheter was to never stop asking if I didn’t get an answer to a problem. I’d just call and call and physically go in until I found someone who could answer the question.
I’ve been cathing for about 5 weeks now. I have a muscle spasm after I removed the catheter. I also get extreme abdominal pain afterwards. Does anyone know if there is anything I can do to prevent this. I’m ready to stop cathing even though I know it’s determental to my health. P.S. I’ve been told I’ll have to do this for the rest of my life.
Hi Vicki. Are you having to catheterize through the urethra? Or is it an SP catheter?
Ken
My name is Andy and I self cather every 4 hours. I have been doing this for years and my penis wall is getting sore. Is there anything I can do?
Andy, why do you self-cath? If you have a stricture, then there are things you can do.
Ken
Hi Ken, my name is Doug , thank you for your wonderful information so helpful, I got a SPC 4 days ago and am getting an extreme burning sensation on the end of my penis when i switch it on after it drains as if it was trying to drag air down my penis
My doctor asks me to void normally and then through the catheter into measure glasses so to try to train the bladder to start working more efficiently this is part of the prostate op I had, have you heard of this and does it work
Hi Doug. You’re welcome for the information. Thanks for the kind comment:). I have not actually heard of what your doctor told you. I was not voiding through the penis when I had the SPC, so I have no experience with what you are feeling. And since your doctor is the one telling you to do this, my advice would be to NOT be afraid to bug him (or his office) for questions regarding your pain. At first I felt like I was being a bit of a pest. But after awhile, I remembered that this was my body and my pain and if I didn’t have answers to my questions, I was going to get them. So don’t hesitate to call and ask the questions. It’s amazing what a difference it can make when you know if something is normal/expected or not. Good luck with this!
Cheers,
Ken
I’m reaching out. About 20 years ago I had a Gleason 7 and had my prostate procedure done with 6 weeks radiation and 26 palladium seeds. PSA is still down to hardly nothing. Ten years ago I had some blockage of the urinary canal and was sent to Duke U to see A Dr. Weber. He told me I was having scaring of the sphincter muscle which was blocking the canal. I started a program at Duke every 3 months I would go and and get the canal opened. Weber said if we did this to the canal as suggested it would stop scaring and remain open. Before Dr. Weber retired he called to inform me he was wrong. I would have to catheterize the rest of my life. They taught me how to self catheterize using a fr 16. I have done this for the last 5 or 6 years, every 2 weeks with no problems. Occasionally it would block and Urologist would open it and I would be on my way. Recently it began to block more and my family physician recommended another Urologist. This Urologist said probably by catheterizing we were creating more scarring. He told me he was having success by stretching the muscle. I am now in a 6 week procedure which starts with a Foley and a fr 14 for 2 weeks and next to a 16, than finally to a 24. Apparently his success rate is good for at least 1 year and maybe more.
I would appreciate any comments.
Hi Bill. Wow that’s a serious challenge, having to self cath for the rest of your life! I know this may seem like I’m a hammer and treat all pee problems like it’s the nail of urethral stricture…but, has your doctor ruled out urethral stricture? Your other doctor was right about repeated catheterizing possibly causing scarring, which can easily lead to a stricture. It may be possible that you have both issues – the muscle and a stricture. If it IS a stricture, that can be corrected with urethroplasty surgery. My advice would be to try and rule out stricture before agreeing to self-cathing for the rest of your life.
Hope that helps.
Cheers!
Ken
Ken,
Thanks for the reply. I mentioned this new procedure of stretching the sphincter. Any comments about that procedure.
Bill
Hi Bill – Sorry about that. I’ve never heard about that procedure. So I can’t really comment.
Ken
My nurse forcefully put my SPC in me very fast and too far! My left leg jumped and I experienced sudden pain to the left of my bladder and severe nerve pain in my anus area. It feels very painful to the point where I cannot feel when I need to push to empty my bowel. Do you know what has happened? Thanks Ken!
Oh my! I can’t possibly say, not being a medical professional. I strongly suggest going to a doctor about this soon.
Good luck with this. It sounds awful.
Ken
Ken,
My neurologist and pain doctor seems to think my nurse hit a nerve. I have an appointment with my urologist on Friday. I just hope there’s no permanent nerve damage! Will let you know more once I know more!
– Lisa
It’s good that you have your medical pros on this. And yes, I’d really be interested to hear the result.
Good luck and thanks!
Ken
I just received a temporay catheter do to enability to urniate from a UTI. I have a sharp burning, stinging pain in the head of my penis at the urithria. It make me think something is not set correctly. I was not given any pain meds. or instructions on what to do or expect after I left the doctors office. I’v look at several videos to see how the catheter shouls be located in referance to the penis and I have noticed a lot of the devices taped down. Again mine is just waving in the wind with only my underware to keep it in place. HELP?
Hi Jerry,
So sorry for the late reply. If you are still having the pain, it may well be due to how the tube pulls and/or pushes against the tip. I always used a Grip Lok sticker to hold the tube in place on my thigh. This way you can control how much slack or how tight the tube is in your pants. I always tried to have a little slack so it did’t pull too much.
I hope that helps some.
Good luck.
Ken
Ken, I have a Foley catheter after having bladder mass removed by cystoskopy through the urethra. I was experiencing spasms every hour or so, feeling like I must pee and of course I cannot. I tried gently pulling the tube forward and it moved about 2 inches before stopping. Since then, some pain but not quote as bad. THANK YOU for this tip because it appears the ball was not positioned right or moved. So it is helping now.
You’re welcome, Peter! I’m am so glad it helped you:).
Ken
I am a wheelchair user who was suffering from constant UTIs despite my partner administering an intermittent catheter several times a day (I only have use of one hand so cannot do it on my own). My consultant put me on a 3 month course of low dose antibiotics and that worked but when it came to the end of the 3 months my GP refused to prescribe any more and referred me back to the consultant. The consultant was abit annoyed that the GP refused to follow his advice and it was decided to do a SPC. I had some discomfort and some bladder spasms for awhile but the first change in catheter after 12 weeks went well. However since then I have been getting considerable amounts of sediment in my tube and bladder spasms are getting worse. I have had to call the district nurse out 3 times over the last 6 weeks due to the tube being blocked. When this occurs I have really severe spasms and can’t get off the toilet due to constant voiding out the back end. I have noticed that usually the nurse measures the length of tube she is going to insert against the length she removed but on my last change she did not do,this and just rammed it in. Since then (just under a week ago) it has been feeling uncomfortable and I have several severe spasms a day sometimes causing my to uncontrollably void at the back end again. I have seen my GP again but he wants me to wait until my next appointment with my consultant in mid November before doing anything else. I am already on Oramorph and Paracetamol for the pain associated with my disability so there is nothing he can do for the pain. However, reading the posts above I am surprised he has not offered any anti spasm drugs. I have also asked if my partner could change the catheter when blocked so I do not have to wait for a district nurse but they refuse to allow it. This seems ridiculous as they were doing the intermittents and also when we went on holiday and flying they also did a urethral catheter for the flight. They say changing a SPC seems easier than a urethral one so we cannot understand the problem. Nurses are often rushed and do not take the time whereas my partner would I feel be a lot more considerate.
Andy,
So sorry to hear about all the problems. Do you know if your catheter is silicone or latex? Silicone ones last longer and may well help prevent the blockages better. Also, it might help to get the cath changed every 4 weeks. That’s what I had and I never had any blockages. finally, the reason they probably don’t want your partner changing your SPC is that there is a risk the opening could heal up before your partner got it changed. Apparently, the healing can happen in a matter of seconds in the first months of having the SPC. After 3 months or so, though, it takes several minutes to heal up and you have more time. What would happen if your partner did change your SPC? Would you lose benefits or something?
I hope some of this helps.
Cheers!
Ken
Has anyone tried Maintain on the tip of the penis to negate the discomfort? It’s Sunday so I can’t call to ask the doctor if that’s safe. Maintain is sold to numb the man a little bit to prevent premature ejaculation, but is just benzocaine ointment. I gotta believe it’s safe but will wait to ask the doctor.
I didn’t use it, Joe. Hopefully others will have info.
Ken
I have bladder cancer, and today was the first treatment of BCG.
I have had a lot of pain in my life, but having a catheter pushed into my penis to my bladder, was so excruciatingly painful, I almost passed out. It was absolute torture. I’d rather have my leg cut off than do this again! Bad thing is I have 5 more scheduled. I don’t know if I can stand it again.
Is there anything I can do to lesson the pain?
I take hydrocodone regularly for my back, but it didn’t seem to help the procedure at all today.
Thanks for anything you can suggest!
Hi Tim. I also had the excruciating pain for that. In my case it was because of the stricture. They didn’t know about it or they wouldn’t have tried it without Lidocaine gel. I was told that if there is no obstruction, it should be uncomfortable but not excruciating. So maybe you have an obstruction?
When I was having my SP catheter replaced, I also had excruciating pain form the guide wire. And yeah, the hydrocodone did absolutely nothing for that. So I understand. I would recommend two possibilities – ask to have the catheter inserted with an IV so that you can have fentanyl, which would be a huge improvement. They probably won’t do that for you, but if they do, that would be really good. After they say no to that, ask for them to use Lidocaine gel before inserting the catheter. That should help a lot.
One last possibility is if you could have one or more of your changes during a surgery when you’d already be out.
Best of luck with it next time!
Ken
Thank you Ken.
That was helpful!
You’re welcome, Tim!
Ken
I have urgencies so bad that pain pills don’t work. I can’t take it any more. Does anyone have any ideas or help?
Angela,
So sorry to hear that! What kind of catheter do you have?
Ken
I have a super public Cath
Hi Ken
The information and knowledge in this blog is very useful – thank you. I have self-catherized for the past 31 years. Owing to a stricture, I had a SPC inserted 2 months ago. My pain and discomfort is similar to the others with pain at the tip of my penis. When I move the catheter I get some some relief. When I had my catheter changed, my urologist showed me the balloon in the ultrasound scan. When he moved the ballon I felt the pain at the tip of my penis. In spite of securing the catheter with StatLock which is similar to a Grip-Lok, the catheter still moves around. Is there any other means I could try to secure the catheter? What else can I do to ease the pain?
Hi Sagie,
So you have a suprapubic catheter? That shouldn’t involve the penis at all. If you meant simply that you’d had a more permanent, indwelling catheter inserted up the “normal” way (i.e. up through the penis), the only things I found eased the pain there were to make sure there was enough slack between the tip of your penis and where you secure it to your leg. If you secure it to tightly, there will be constant pull and that will cause pain. You are trying for enough slack above the StatLock/GripLok, but enough security/grip below it to prevent something pulling down (like a full bag or even getting the tube caught in something as you walk by). It’s a bet of a fine line. I hope that helps.
Cheers!
Ken
I have had an SPC now for 2 years. I get two or three UTIs a year which leave Me exhausted.
My main problem is with the SPC balloon sitting low at the base of my bladder and the fact that my bladder is seriously scarred due to a hospital infection post prostate cancer, I get a constant nagging pain in the bladder.
Rest helps but with a little lifting and movement the pain returns. It is ok overnight but comes on again when at the toilet or any aggregation of the bladder through movement.
Its possible that the balloon is constantly rubbing on the bladder wall.
I am finding that paracetamol eases the pain but am concerned that long term use of paracetamol could cause other problems. I usually take , on some days 4 paracetamol.
Any thoughts?
Graham,
So you tried the “gently pulling” technique from the article? If that does not do the trick, it may have something to do how you secure the tube to yourself on the outside. It needs to be secure in both directions – can’t be pulled down/outward, but also should not be able to sink down in your bladder. It should be snug up against the bladder wall with the outlet/pokey bit pointing into the middle of the bladder. If it isn’t that – and you can’t find another solution – then I would attempt to at least try to get a different type of catheter. Did your read my post about the Duette? See that here: http://livingwithacatheter.com/the-duette-a-better-catheter-than-the-foley/. the only fly in this particular ointment is that Poiesis does not yet have licenses to export the Duette outside the US (they are working really hard on this!). But there are a few 3rd-party vendors that will sell you some. It just wouldn’t be something covered by insurance.
I hope some of this helps!
Good luck.
Ken
Hi,
I had a Foley cath in due to not being able to urinate during a UTI. I had it removed last Friday and attempted to urinate. As soon as I tried I felt the burn and just couldn’t urinate. I had another Foley cath put in the same day. I will get the second Foley cath removed tomorrow morning . I’m afraid the same thing will happen tomorrow. Is there anything that will help relieve the pain while urinating? I tried pain mess and Azo, and drinking nothing but water, all dosent help. Please help!!
Hi Angel,
This is something I always recommend bothering your doctor(s) relentlessly until you get an answer. As for what might be causing it – well putting in and taking out a Foley catheter can definitely be irritating to the urethra. After surgeries (non urethra surgeries:)) I often have painful urination for a day or so. But if it’s really bad and lasts longer than a day or two, it’s time to get a doctor to scope you to make sure there isn’t any damage in the urethra.
I hope that helps.
Ken
So I just make myself pee through the pain?
Np. You should never do anything “through the pain.” Pain is your body telling you there’s something wrong. You need to see a doctor immediately if at all possible. I am not aware of anything over-the-counter other than Azo (Phenazopyridine HCL) that you can do to ease painful urination. And you’ve said that doesn’t work. So if it were me (and remember, I’m NOT a medical professional) I’d go to an emergency room. You should not just try to tough this out. I hope that clears things up. And I hope you feel better soon?
Thank you . The pain when urinating is unbearable . My next option was going to be marijuana while I go pee. I’m desperate at this time
I’ve been living with catheters a lot from fall to early winter. I have a lot of experience at ER as well as
at the doctor’s office.
Here are INVALUABLE tips:
1. Before having a catheter inserted, insist on URO-JET, which is Lydocaine gel that numbs and lubricates. It is the difference between NIGHT & DAY as far as pain and discomfort. YOU HAVE TO INSIST UP FRONT.
2. I have found the Dover 100% silicone catheter is MUCH more comfortable.
3. Drink TWO CUPS of Cranberry Juice daily to keep infection risk down. NOT the diluted sweet variety, but the 100% concentration with maybe 10% of the sweetened added to make it palatable.
Thanks Evan.
Good tips. As for tip number 3 about the cranberry juice, it certainly can’t hurt. But the evidence for cranberry juice preventing UTI in men is lacking. For women, different story. And if you have an indwelling catheter, cranberry products do nothing for anybody because the bacteria are already present. See the article here: https://livingwithacatheter.com/data-driven-information-on-prevention-of-catheter-related-problems/ and here: https://livingwithacatheter.com/urinary-tract-infection-and-catheter-care/
Thanks again for the tips!
Ken
I have read through the discussions and found them very enlightening. I have a SPC that was inserted on 12/9. I have horrible pain upon standing and sitting. When lying in bed, urine doesn’t always flow into bag. In fact, I often have to get up to get flow started. Have you ever heated a similar story?
Thanks Sharon. Glad you have found some helpful stuff here. I’m sorry about the pain you’re having. If you haven’t read this post – https://livingwithacatheter.com/catheter-pain/ check it out. I found it helped me to pull the tube gently to make sure the balloon is secure against the bladder wall. About lying in bed, you should be sure you’re wearing a bedside bag. It has a long enough tube to put the bag on the floor. That way the flow will be in the right direction. If you just use a leg bag attached to the leg or lying on the bed (even if it’s the bedside bag, it should not be on the bed), all the urine will be on the same level. You need the bag to be below the level of your bladder.
I hope some of that helps.
Ken
Ken, thank you for the info. I did try the “pull up” exercise, but didn’t get too far because stitches stopped any “rotation.”. Since then pain has increased along with blood in urine. I know this can be normal, but it persisted for many days. I have Dr. appt on Tuesday 1/3. Anxious. Thanks.
Sorry to hear that, Sharon. Yeah, that really only works if you have a catheter with a balloon and there are no stitches. I could not have done this with my first catheter, which was a pig-tail (no balloon) held in place by a couple of stitches. I probably should have been more clear about that. I hope you get some relief qt your appointment!
Ken
Hi Ken, just an update. Dr. appt. went okay. My doctor is going to put the Duette in on Jan. 23. I am really counting on it to relieve my pain and other problems, e.g. bleeding. I will let you know how it goes. Thanks again for your support.
Glad to hear it Sharon. I’m jealous:). I never got to try a Duette. I look forward to your news.
Ken
Have a spc but feel need to urinate most of the time. Is this normal
Chris,
It’s not normal. You should call your doctor. Post back when you find out what the issue is. And good luck!
Ken
Actually, I had that sense of needing to pee even with the SPC. So much so that it would keep me up at night. My guess is that when a tiny bit of urine entered my urethra instead of leaving through the catheter it would get stuck near the distal end of my penis where my stricture was. Eventually some of it would drip through and that sensation would lessen. But when they first cut through my urethral opening, I had that sensation nonstop for three or four days.
Ugh. that does not sound pleasant.
New to this blog but have had a superpubic catheter in since 6/20 and foley for 3 days earlier in the month.
Just want to share my story. Started with a hypospadias when I was a baby and for 2 and half years (I’m 27 now) been dealing with re-current UTIs that ends up as complete urinary blockage (like a blood clot of the urine) and often takes hours or my worst was not peeing for 2 days (worst feeling ever).
I had one surgery October of 2015 for a urethra cleaning to remove scar tissue but this surgery was unsuccessful since I had 2 UTI blockages this year.
About a month ago after getting the foley I was guided what would be needed for a urethroplasty since the urethronomy(I think that’s the name) was unsuccessful. This showed I had a diverticulitis or pouch and a utethral structure that would not require taking any tissue from my mouth.
Well I was supposed to have surgery on 12/20, and recovery of 2 weeks but my urine had become infected(this happens easily) and and a lump on my testicle that was drained.
So now it needs to heal and supped to have the surgery on Jan 31st to hopefully fix everything.
I have a few questions if you or anyone would like to answer. I’m from New York and surprisingly getting this resolved hopefully with a pediatric, not regular urologist. This was recommended by my adult urologist.
My questions are:
-What is the best way to make sure the superpubic catheter doesn’t get infected? (I currently have a gaze pad above it along with a lot of tape to keep it in place because they told me not to wash it)
-What should I expect after the
Urethroplasty?
-How do you go out or do normal activities, like walking around a lot or driving a lot without it moving around too much or getting muscle spasms? (It always seems to feel weird and I seem like I limp when I walk for some reason to make sure it stays)
-Do you or know anyone that had a successful urethroplasty and can share their story? I’m just concerned about the outcome and months following.
Thanks again for this website and helping people in our scenario. I never thought I had someplace to share my story.
Hi JP,
I don’t know why they told yo not to wash it. that seems really odd. You do not, however, need to do anything out of the ordinary to try to prevent UTI. Once you have an indwelling catheter, the bacteria are already there – colonized. So the question about getting a UTI is all down to if those bacteria decide to invade the tissues or not. All the antibacterial detergents, etc. in the world won’t help. You just need to keep things moving (the pee) in the right direction and keep yourself healthy. As for after the urethroplasty – afterward, you’ll have a swollen scrotum for awhile. Don’t be surprised by that. And oddly, the pain in the scrotum/testicle area is going to (probably) last a long time and heal quite slowly. this is also normal. You will likely have a foley catheter for 2-3 weeks before going in to make sure you can pee without it and that the surgery worked. Then you’ll be free! Just be aware that the healing takes a long time. Read my posts on the site about that stuff.
I hope that helps.
Cheers,
Ken
I have a foley catheter and use both a nighttime bag and a daytime leg bag. Three questions. First, I use a statlok to minimize movement of the catheter (but also allowing for some slack) but I still feel some discomfort at the tip of my penis. Is it okay to use a lidocaine cream to deal with this or would vaseline be a better (and safer because it’s non-medicated) alternative? Second, when I use my leg bag, I find it most comfortable to wear sweatpants without underpants (classic Jockeys). When I’m in bed, however, I don’t use the statlok (too constricting) and wear underpants to keep things in place. What do you think? Third, if you drive with a leg bag, can the bag be on the leg you use with the accelerator? I have got used to having the bag on my accelerator leg and prefer to leave it there because it feels more comfortable.
Hi David.
I don’t think there is any problem using lidocaine there. I used to use neosporin and never had any problem. I always had a Grip-Lok on my leg even in bed. it never presented any problems, I didn’t find. And I was terrified I would get out of bed to empty the bag and step on the tube and yank on the cathether (shudder). As for driving with the leg bag, that’s what I always did – left it on my accelerator foot. Should be fine. Hope that helps.
Cheers!
Ken
I had Turp surgery ( scraping the Prostate to make the pathway open to pee because of retention) For 5 days they flushed my bladder in Hospital. I have been out 4 days. I am not getting any blood in the bag but on the 5 day soon as they gave me the walking catheter Pee flowed out of the penis and went all over the floor. I got cleaned up and attached the walkig catherter again only to have it working 50/50 from the penis or into the bag ( here is the problem, when it comes out of the Penis I get a huge cramp ( pain level 7 ) briefly for about 30 seconds to a miniute. I slump over in pain and have to start breathing like a Women giving birth just to get through it. I am on county insurance – my doctor will not see me untill another week and a half. My only option is go to ER. I hate that place. I think its clogging for some reason. I read on the forum that perhaps I should pull on it but I have had surgery and it has to heal. I don;t see no way out but to wait. Unless the ER can give me some morphine but I would rather figure out another solution. I actually tried pumping in clean fluid in reverse hopeing it would unclogg the catherter, That was wierd but why not ( it did not work ) THE ONLY POSITIVE THING IS WHEN I AM LAYING DOWN I DON”T GET CRAMPS – but I don;t want to be bed ridden. I got cash flow problems to worry about. I need to work.
Wow Jim. That sounds awful. So you’re saying that pee is coming out of your penis around the catheter tube as well as through the catheter into the bag? That can only mean that there isn’t a good seal/block at the opening from your bladder into your urethra. Do you know if it is a Foley catheter? In other words, does it have a balloon at the end (inside your bladder)? That is supposed to – when it’s properly inflated (with sterile water) sit over the opening at the bottom of your bladder and block it. If you do have a Foley, the balloon may have become dislodged (in which case a GENTLE and SLOW pull away from your penis might be a help – to reposition it. If you pull and you get resistance though, then stop. Another possibility (again, if you have a Foley) is that the balloon may have deflated partially, allowing pee to come through your urethra and down and out your penis.
The cramping sounds to me like your bladder trying to push against a blockage of some kind. It wouldn’t normally do that if the catheter is properly set. I used to get the exact kind of cramp you’re talking about BEFORE I had my catheter put in initially. It was my bladder trying to push against the stricture blocking my urethra. but as soon as the catheter was in, there was sufficient drainage that the bladder never had to push against a blockage.
Here is some info on how the Foley works – in case you didn’t already know: https://www.bardmedical.com/media/3110/Bard%20Foley%20Catheter%20Inflation_Deflation%20Guidelines.pdf
I would advise having a nurse or other medical professional do the deflating or inflating of the balloon if you need to havr that done.
Best of luck! I know you have insurance and money issues to contend with here as well. But if you have to go to an ER, I would do that ASAP if this doesn’t get better soon. Yeah, you might have to wait for a few hours, but just think – the next day, your problem might well be fixed.
I hope some of this helps.
Get well soon!
Ken
I’m new to the foley. My penis hurts at the insertion site. When I first inserted the indewelling I was given a 16Fr. It was uncomfortable so we removed it and used a 14Fr. Should I lubericate the penis head at insertion? If not what can I use? I also get a pulling sensation when I stand up sometimes. Any suggestions?
Hi Mike. Remember that I am not a medical professional. But my personal experience showed that using a bit of vaseline or even bacitracin ointment at the insertion point did help and caused me no harm. Also make sure you wash that area of the tube each morning. It used to get some build-up from the mucosa in the urethra. That stuff can harden and cause some pain. As for the pulling – make sure you have some slack between the penis and where you have it attached to the leg. If there isn’t enough, yeah, it will pull. Just don’t put too much slack because you don’t want a loop of tube to catch on something.
I hope that helps.
Ken
I had MRI guided prostate biopsy under full sedation. When I woke up I could not pee. After a few hours of IV and drinking water I still could not pee.
I got a folly installed with a leg bag. It is not that bad except for the extreme pain at the tip of the penis. It is like there is a razor blade there.
I am taking pretty strong oral Rx pain pills and have put lidocaine cream on it but it still feels like there is broken glass there at the tip.
Could the tip just be referred pain from further up the plumbing?
Any ideas to relieve tip pain?
Wow Lester. That sounds terrible. I don’t remember having a sharp pain like that. Just spit-balling here, but have you tried pulling the tube down/out (or the tip of your penis up) a bit? The reason I ask is that when I had my urethral catheter, there was about a 2-3 inch area that went in and out of the penis all day and night. IN the mornings there would be a little hardened crust-like build-up that I would scrape off with some gauze and soap. I imagine if that were inside, it would be pretty painful. I don’t think this is likely, since you’d probably have seen it. But it might be worth a check. If you don’t feel better than this tomorrow, I think you should at least call your doctor’s office and ask.
I hope you feel better soon!
Ken
I woke up this morning and the pain was extreme. I could barely move. The bladder was trying to eject the catheter. I got to the doctors office and they took it out. It was extremely painful. I sat on the table for 20 minutes and deep breathed. I am able to urinate now but it really hurts. My urethra is very, very sore and burning. The doc said on a scale of one to ten I was a ten in terms of urethra sensitivity.
I am so scared because I think I will eventually have to get prostate surgery and I cannot imagine having it in for a week. Is there a nerve block or anything that can he done?
Lester – I’m so sorry to hear that! Remember that I am not a medial pro of any kind, so any advice I give is from a regular non-medical guy. Ultimately you should definitely see a nurse or doctor about this. I do know that there are medications they give to folks with UTIs that are designed to directly or indirectly reduce pain in the urethra. If there is an infection, you should be taking the correct antibiotics, though I would think the docs/nurses would have caught that. Anti-inflammatories are the first next things to consider, since many types of pain are caused by inflammation. If it’s localized near the tip, there are topical (lidocaine, etc) gels. Antispasmodics like oxybutynin also are often used for bladder/urethra pain. And then there is always the narcotic pain meds like hydrocodone. I hope this helps some. And I hope you feel better soon!
Cheers,
Ken
Thanks for keeping this up. Ken. Have had a Foley for a week today and can’t shake the pain (yes did the pull on day two, not trying that again). I may be lucky, am having it removed tomorrow. Hope is to expand a structure.
Good luck with the removal! Glad the site could help to some extent!
Ken
Thanks, you’re my new guru. I’m done with the turp procedure and have had a he’ll of a bad run with uti. Back to the pain of a folly. Just nice to know I’m not the only one who is suffering. Bless you and your significant other.
Pete
You’re welcome, Pete! So glad you’re finding the site helpful. Best of luck with TURP recovery.
Cheers!
Ken
I had TURP, which did a nice job of cleaning up my prostate and ending the continuous infection cycle I was experiencing. Unfortunately, during the TURP, they identified three strictures and dilated them so that they could perform the TURP. Within no time I had so much scarring, after an additional procedure to dilate and remove scarring, that I could no longer urinate more than a couple drops at a time. Eventually it led to two stage urethroplasty of which I am 4 weeks past the stage 1 procedure. This is a very helpful site. Thanks for putting it together and keeping it afloat well after your procedure.
Thanks Pete. I’m glad you found some helpful stuff here!
Ken
I had a radical prostatectomy on February 14 (Happy Valentines Day….not 🙂 ) I have a Foley in until March 8th. Earlier this evening I had a sneezing fit and ever since feel like my bladder is going to burst. From the sneezing it looks like I’ve pulled the slack out of thevtube and its pulled down about 2 inches. Any tricks to get it back up or should I go see the doctor?
Bruce,
Yeah, you’re going to want to see a doctor about that. If the tube has come out more than you’ve seen it, there COULD be a possibility that the saline (assuming your cath is a Foley) balloon is partially deflated and things may be wonky up there. Just to be on the safe side, I’d call them ASAP.
Best of luck moving forward!
Ken
Hi I had an SPC fitted 7 days ago. After years of self catheterisation. I have had some “tickles” and am going to ask for medication to help out.
I have found this site invaluable and have learned far more here than from the professionals. Will be reading with interest.
Thank you for this invaluable service.
Christina
So glad you find it help it helpful, Christina! I hope things get better with the tickles. I was not a fan.
Ken
I’ve had my catheter in for a month 2 weeks into it got a infection and been in pain since feel like I have to pee and it hurts is this cause by the infection
Sue,
Sorry to hear about the infection. Did you get treated for that? They were fierce about treating me when I got a UTI with my catheter – being aggressive with the antibiotic and making sure it was the RIGHT antibiotic for the the particular type of bacteria. Infections can cause pain for sure. But you can also experience pain with a catheter if you DON’T have a UTI. So unfortunately, there’s no way I could know. I highly recommend seeing your doctor about this as soon as you can. I hope that helps.
Ken
Thanks very much for this invaluable information!
I’m female with a (hopefully temporary!) SPC. When lying down, I seem to have to manually adjust the tubing every hour or so. Otherwise, I wake up with a very full bladder feeling, and the point of the SPC is to keep my bladder dry so a fistula repair can heal. The night bag is below my bladder (on the floor) but we have a pretty low bed and the urine just doesn’t seem to flow to the bag. Any tips would be much appreciated. Thanks!
Hi Sarah. Glad you’re finding the site helpful! Sorry to hear about the issues you’re having. You definitely should be filling your bag overnight, assuming you have drunk enough fluids. Since I’m not a doctor or nurse, my first advice is to call your doctor and ask about this. But if I were to opine on the matter, I’d say something is blocking the flow of urine to the bag – and that could be a few different things. First, the inlet eye on the catheter inside our bladder might be angled funny – too high so that it isn’t submerged into the urine, or pressed up against your bladder wall, which would typically cause a pinching feeling – or something caught inside the catheter, blocking the flow. If it’s the latter, the nurse at your urologist should be able to flush the catheter with saline to clear a blockage. If it’s the former (angle or position of the catheter in your bladder), you might want to check that the balloon (if you have the Foley type catheter and not a pigtail or some other non-balloon type) has not fallen away from the inside of your bladder wall where the tube is inserted. That was the thing I was trying to guard against/fix with the procedure in this post. Making sure you have something to secure the tube on the outside can help here. I used the Grip-Lok stickers, which prevent the tube sliding either up or down too much. But for night-time, you might could even use tape to keep the tube where it should be and help prevent the inlet of the catheter go “walkies” inside your bladder.
Not sure any of that will help immediately. But I do think you need to call your doctor soon for this one.
Hope this gets fixed soon!
Ken
I have a foley snd I have bladder spasms that it hurts in my back and my abdominal area I have to the prescription azo and meberquet r how evey u spell it and plus I take percect nothing seems to help and I carry yeast in my kidneys
Hi Peggy. I’m so sorry to hear about the pain you’re having. Since this is not anything I ever experienced – not to that degree anyway, I really don’t have any personal answers for you that would be guesses. Really the best thing you should do is contact your doctor. If he/she has not been able to provide you with any help, try another doctor. You shouldn’t have to live in pain like that.
I hope that helps a little anyway!
Ken
Hey everyone. Could you help me out? I put together a VERY short survey tor subscribers on this site to help me understand how I can help folks with their catheter problems better. It would really be a help to me if you could take just a couple of minutes (seriously 🙂 ) to do this survey. If you can do this, just click here to go to the survey. Thanks so much!!
Ken
Hey I am 20 years old and about 8 days ago I had a urethrotomy, which is a urethral stricture widening operation. This urethral stricture I probably had since birth.
They put me under anesthesia and I woke up with a foley catheter size 20f. It all seemed fine until the first night came, and I thank God that I was at home and not in the hospital.
So I got an erection at about 3 am and was in excrusiating pain. Blood all over the place. For a long time, more than a couple of hours I believe, I could not get out of it. It was torture. I actually freaked out, the urine was dark orange and I still had the bag from the hospital in, with the long tube. Thoughts and feelings of the dark side arose. I felt that the urine was going back in my kidneys and since I was bleeding, I had these weird thoughts that I would blow up or get an infection of some kind.
The worst in the following week, apart from not being able to move and the constant “tingle” in the tip of the penis….Was the bladder spasms…boy oh boy those HURT!!!! I could feel the balloon squishing and trying to get through the bladder… And the really worst part was the pain inside the penis…right where I had the urethrotomy done.
And now… 3 days after the catheter removal… Most of my peeing sessions involve high amounts of pain usually mid-to the end of peeing and sometimes it lasts quite long.And what sucks is…I can’t get an erection. I feel pain where my stricture was.My Dr. said its normal… but did not tell me when it will go away… and it kind of scares me…
He said the catheter was pretty big and its expected to have these symptomps…
I have been drinking water which has helped but not much. The erections are really painful.
Of course I in no way want to offend people who live with these kind of symptoms or had to have a cath in for longer periods of time, this could be a really itchy subject… But I got really depressed and even had some weird things happen to my psyche in this whole ordeal.
I pray to God that I won’t have to deal with this again ever in my life, and wish anyone who does to go through it as painlessly as possible.
Does anyone know when I should get better?
Wow, Kos! That’s awful. I’m so sorry to hear about that. I never had a urethrotomy. They went straight to the urethroplasty, which has the best chance of a long-term fix.
With the urethroplasty, it takes many months to heal up because of how they have to cut through other parts of your body to get to the stricture. Since the urethrotomy is much simpler, going directly to the stricture and cutting it out through the penis, it should be a much faster healing time. I hope someone here who has had a urethrotomy can answer your question. My ubest guess is that it will be as long as 2 weeks for the site to heal up.
It sounds like you’ve gone to your doctor with your questions. That’s good. I encourage you not to give up though. If you are experiencing intolerable pain every time you pee or get an erection, I think you should try to get a solution to that, even if it’s only better pain medication, at least until it heals.
Best of luck to you with this. It sounds terrible. I hope it gets better soon!
Cheers,
Ken
Thanks for replying! 😀 Really appreciate it! Keep up the good work!!!
Hello,
im am 19 years old and was recently diagnosed with kidney damage and bladder issues i have spoked with doctors and they said the solution was i would have to catheter myself 4 times a day for the rest of my life im not going lie im scared but cant stop thinking on how i can live normal life i am looking for some insite on how people with catheters live there life?
Thank you,
Hi Billy. I’m so sorry to hear about that!
I’m asking two doctor friends about this so I can get you a good reply. Should have something by Friday.
Hang in there!
Ken
Hi Billy,
We really would like to offer support to you as with all our readers. For your question, our doctors (we have two doctors working with the site now) tell me they need more information before offering any advice. What kind of damage do you have with your bladder and kidneys? Any advice they could give would need to be based on a specific diagnosis you’ve been given by your doctor(s).
Also, since you are 19, I’m curious whether you have support from parents or other family and/or friends. And one last question for you – are you in the US or another country?
With that information we can offer better advice.
Cheers,
Ken
I found success trying one guy’s advice. When a spasm is starting, don’t fight, relax as if you will pee yourself, the pain will continue maybe to 75% of a bad spasm but continue to 40+ seconds and when it slightly eases stop pretending to wee with the usual bladder brake we use after weeing. The spasm will not reach it’s height of hell. Try this method and if it works for you share like me on this blog. Ken is a good moderator of info. Thanks Ken for your sympathy and patience with us guys.
Thanks for the tip, Ed! And thanks for the kind words.
Ken
Hi Ken,
I’m so relieved I found your blog, but I wish I had discovered it sooner. I’m a 25 year old male from Europe, and I have dealt with these strictures all my life. I hope my story can be of help or consolation to someone in the same situation. Prepare for a wall of text …
I most likely got these strictures from a urinary tract infection when I was a kid(quite common) and I lived with it for almost 16 years before it became critical. I could not pee or ejaculate normally, as it would leave me on the bathroom floor crying in pain. From age 16 to 19 I was in and out of hospitals and tried all the regular methods. Everything from urethrotomy to self-catheterization. Nothing but momentary solutions.
Flash forward to age 21. After several infections and much agony, I decided to try what the best hospital in Norway had to offer. They told me I was scheduled for urethroplasty, but I ended up getting something else because they told me it had a higher success rate. To this day, I’m still not sure what they tried.
So I woke up with a Foley catheter, and I remained in bed for almost a week. After I was sent home, I used a special doughnut pillow to relieve pressure off of the scrotum(that stayed with me for 3 months), and I had the catheter in for another two weeks. It all went relatively well, all things considered, until the last two days of having the catheter. I started getting the worst kind of cramps, and I would push to ease the urge to pee. It only made things worse, and the catheter became covered in blood. I could see tissue from the bladder ooze into the bag. I was mortified. I eventually managed to calm the sensation by taking strong painkillers and fall asleep.
After I took out the catheter, I peed with the force of a garden hose and recovery seemed to go smoothly. That is, until I recognized the cramps from before coming back. For the last 4 years, I’ve endured countless crippling moments where these cramps will just knock me out. I become completely immobilized. I have dealt with them taking painkillers and relaxing my lower body. But needless to say, I don’t go anywhere without anaestetics.
So here I am, 4 years later, and I find myself in a situation that is all too familiar by now. An appointment at the urologist taught me that I have scar tissue in the bladder from the time I wore a catheter, and that this could be the reason for my bladder spasms(still just speculation) Moreover, I have to pee more often now and I can feel the stricture tightening like a noose.
I had high hopes for this procedure, but it seems inevitable I have to go back in. I really want them to try urethroplasty this time, but i’m so scared the catheters will further damage the bladder. Do you know anyone who might know something about this? The doctors I had didn’t seem to know what I was talking about when I described the cramps, so for a while I thought I was imagining things. The whole thing is putting a lot of strain on me mentally, and it’s definitely hurting my significant other as well.
Just wanted to get this off my chest, sorry for the long comment. If anyone is interested in starting a group chat – count me in.
Best,
Emilio
Thanks for your story, Emilio! I’m so sorry to hear about all the trouble you’ve had.
As for moving forward in a way that won’t damage your bladder, I believe the kind of catheter you use can be critical. Remember that I’m not a doctor – just need to get that out of the way. I have no way of knowing for sure, but it’s possible that your bladder wall could have been damaged by the inlet hole sucking against the bladder wall. This can result in bladder wall tissue being irritated and even damaged. For this reason, Poiesis Medical invented the Duette catheter. Check out my post here for more on what this is: The Duette – A Better Catheter Than The Foley. Unfortunately, it is not officially available to ship outside the US (for hospitals and insurance purposes) due to licensing and import legalities. You can, however, order them from 3rd-party supplier. Here is one link. It might help.
I hope things work better for you this next time around!
Ken
Thanks, Ken. I will definitely look into those! My only concern is that they will not use it. They were already skeptical about bladder spasms to begin with, so i’m not sure i’m able to convince them.
Thank you for all the informations and stories shared here! Especially in regards to the latest creation of catheter, The Duette !
I managed to get them deliver all the wat to Brunei. I had to use a forwarder company in the US to get the item for and have it delivered to Brunei.
And today is the first time I got my SPC changed since the first installation that was in June 18th 2017. Yes, nobody noticed that I needed to have it changed on a monthly basis. The hospital actually forgot about it too. Thank you to this amazing website, I found out about the one needs to do their replacement of catheter on a monthly basis at least 30 days.
So, the removal of the old normal single balloon catheter was slightly difficult due to crystalization inside, they had to slowly remove it and it took a very loooooong while for it to finally off my belly. Yes! It was painful.
So when it was about time to put in the Duette catheter, it was slightly painful and burning feeling and minute later, it was done!
So I hope with this new catheter I will not be having anymore burning sensation, poked feeling, haematuria and UTI.
Oh, the reason for the SPC is due to severe urinization process where it was only dripping not flowing and my urologist said there is a problem with my urethra. I had the normal urethral catheterization twice in a span of 2 weeks and it was the most painful situation ever, not only during the installation and removal BUT throughout the time having it inside.
And for those (not in the US) who wants to get those amazing dual balloon catheter, try to get them via the forwarding company. I have used this company called Stackry! They are the best!
That’s all for now,
Cheers.
Thank you for posting that! I’m so glad this site was able to help, and that you got your catheter changed before getting an infection. Wow! Also, I’m so glad you got the Duette. Once the pain of changing catheters subsides, I would love to hear how you like the Duette – if it’s much better than the Foley.
Also, thanks for the information on Stackry! (https://www.stackry.com/). Do you mind my asking how much you had to pay for shipping using Stackry?
Thanks again!
Ken
I have large prostate…63 yrs old. Biopsy normal. Last week one night i could not pee-at all. Rushed to hospital er. Catheter inserted and sent home with it and leg bag attached. Went to my urologist…was getting bladder spasms. He put me on a drug to shrink the prostate (over about 6 months) AND flomax. I have taken 2 flomax (1/day) and go to have the catheter removed tomorrow.
Am i freaking out unnecessarily thinking i still wont be able to pee?
Hi Tom. they actually thought I had enlarged prostate when all along it was a stricture. I was on Flomax for the better part of a year leading up to the day I couldn’t pee at all. The only reason they discovered it was a stricture was they could NOT get the catheter up there. If you were able to receive a catheter, it might mean you don’t have a stricture. But if after they remove the catheter you still cannot pee, that might be what’s going on. If I were you, I’d hang around the clinic/hospital after they remove the catheter and drink lots of water until the urge to pee came around. Try peeing. If you can’t, you’ll be right there. You can go right back to the clinic and report this to get it taken care of right away and not have to go to the ER, which is what I had to do. Best of luck!
My older brother had an enlarged prostrate gland and didn’t Know it.. He had an epileptic seizure and was in the hospital in a coma for two weeks then woke up. When I brought him home, every time he urinate every one can hear him scream in pain teal LOUD !! I took him to his doctor and the doctor said the nurses didn’t know his prostrate gland was enlarged! So his doctor did an x-ray or whatever and said the catherer device caused damaged to his urethra in the prostrate gland! Told my brother he’ll have pain for a while and will eventually heal and put a law suit against the hospital for damages….
That does NOT sound good. Watch for a reduced pee stream after the pain goes away as the urethra scars. It may cause a stricture (narrowing) of the space for pee to pass through. And that can only be fixed (long-term) via surgery. Hopefully that will not be necessary.
Ken – We have a new urinary catheter and we are looking for people interested in participating in a clinical study. You can see some images of the catheter on http://www.kohlicatheter.com. How can I send you the patient brochure for posting on the Website?
R. Adams
Sounds interesting. One thing that was a huge problem when I promoted an exciting new catheter a few years ago – the Duette – designed to do what yours is trying to do, prevent tip contact with the bladder. People wanted it in many countries other than the US. And they couldn’t get it. Many of our readers/posters here are from other countries. So would you new cath be available outside the US?
Ken – We are just coming to the market and we have not applied for a CE Mark to enable OUS distribution as we felt it was more important to validate the approach in the US first. We have one patient who is using the catheter and she has had huge success with reductions in clogging and pain. The goal of our study is to validate these experiences in a larger group (<30) patients.
Thanks for the clarification. OK, I can post about this with the caveat that if validated, it might not be available outside the US for while. What do you have that you an send me to post?
Ken – I am a novice blogger and not sure how to attach a file to the message so I sent the Patient Brochure to your email address from the sign up email.
Hi, I have a male friend who has had a catheta for around 4 months and he is inserting and removing it himself. He is finding that he is in constant pain since the tip of the is sore. Because it is sore it hurts every time he moves. His nurse suggested that he should try wearing it on the other leg but he feels it will then irritate the other side of the tip of his penis and then be sore all over it. The nurse seems to think that soreness is common.
Sorry to hear this. I am not a doctor or nurse. But possibly could he try switching legs and reduce the pain on the one side by at least half. It’s not a big area so having half the amount/severity of pain – even on two sides, would seem to be better? I think it is worth a try. Also, does he need an in-dwelling catheter? If he’s already putting it in and taking it out himself, with his doctor’s permission could he try an intermittent catheter? That way he wouldn’t have to wear it all the time. Just some thoughts.
Thanks Ken. He does want to try having time without it. He hopes he can still control his bladder or learn to control it again. He has prostate cancer so with the treatment he is a bit shot at in that whole area. I will pass on your advice. Is this a common problem as I have googled it and no one really mentions it? Many thanks for your kindness. Michele.
I don’t know how common or severe it is in others. I can only speak for myself. I only had an indwelling catheter “the normal way” (through the penis) for about 10 days after my surgery. And yes, it was uncomfortable and a bit painful. So I imagine having it for many weeks or months would mean more pain. One thing I did was to apply lidocaine cream to the area to help with the pain. Hope that helps.
We are seeking participants for an IRB-approved study evaluating a new suprapubic catheter that we will cause less discomfort and be less prone to blockages. Could we present this study information to your followers?
Yes. Can you send me something to post? Id you already ask me this or was that someone else? I’ve been on pain meds from a surgery last week.
Omg – you’ve just saved me from a 3rd night at A&E due to unbareable pain,
I have a spc, it’s been in for 4 weeks now, (should be out soon as long as I’m ok peeing)
I’ve had what I thought was bladder spasms on and off, it’s was always worse when I stood up,
It was also causing blood to come out my penis (told this was normal after the surgery I had,)
Then I Google what I was feeling from the spc and came across your post, (I never read the first thing Google shows me)
I pulled on my spc about half a centimetre and guess what, I already feel better,
Thank you so much for sharing your experience,
It’s just a shame no doctor or nurse has thought of this over the last 3 weeks
Thanks again
Thanks for you comment, Ajay! And I am SUPER glad this helped you :-). These catheter designs are not great and they often do cause extra damage to us while they are doing their main jobs. Hope things are good until you get the thing out!
You dont say why you had a catheter fitted, was it just for acute urinary retention? Cant pee?
Reason i adk is last friday a sickness and bad tummy just came along within a few min of me waking up.
Ambalance came, said i had a tummy bug
Its stayed all week, in tge end i rang the uk 111 none emergency number, tgey booked a call from a doctor who said i need to go into hospital to gave bladder drained.
Come on we are not all doctors, saying things like that was meaningless.
So they fitted a catheter, i open the tap when about 400ml in there..
But here i am with it fitted, back home, and still i have bad tummy pain and sickness.
So it didnt stop pain, one day so far
Ive rang 111 again right now live, waiting for phone call from doctor
Sorry to hear that John. I was fitted because I could not pee. When I went in, they THEN discovered I had a blockage – a stricture. But the surgeon said it needed to be a suprapubic catheter (goes in through the belly rather than up the penis) because there needed to be no stress or inflammation when it was time for surgery.
I am not a doctor or nurse (or any kind of medical pro), so I cannot say what is happening with you. My only advice is to physically go to your doctor and make sure they understand what is happening. ER doctors may not be the best for this. Try your GP and try to get a referral to a urologist. Best of luck with this!