My bladder spasm experience

From “The Decision”

I mention bladder spasms above because of something that happened to me and because of experience with my patients whose prostate I have removed. The bladder is in essence a very large and strong muscle. Any manipulation of the bladder, including removing the prostate and then placing a catheter, can cause bladder spasms. A catheter is necessary after removing the prostate because you have separated the bladder from the urethra by removing the prostate, and the catheter allows for the drainage of urine while the new connection between the bladder and the urethra heals. This usually takes 7- 10 days, which is why you have the catheter in the length of time you do after surgery.( Please see the  previous diagram of the prostate removed.) I have had several patients, one of whom was a friend of mine, tell me that the most painful part of the whole surgical experience was wearing the catheter and bladder spasms. This particular patient mentioned this fact to me at the time of his hospitalization and then asked me why I had not told him about it ahead of time. I told him it did not happen often, and, if it did, we had medicines, B and O suppositories in particular, to handle it. I remember listening to him discuss this issue, but I don’t remember it making an impression on me to the extent that I began warning patients about it or taking other precautions to keep it from happening. A bladder spasm is very painful.  If you have ever seen a professional football player collapse on the field because of a muscle spasm in his thigh, you then have noticed how they grimace in pain and have to leave the game. A bladder spasm is very similar to this, a very painful contraction of the bladder muscle that causes excruciating pain at the bottom of your abdomen. When I woke up in the recovery room after my prostate was removed, I experienced a bladder spasm first-hand, and it was the most horrible pain of my life. I am a wimp when it comes to pain related to dental work, but otherwise I am pretty good with pain. I have had three significant knee injuries with sports and subsequent surgery for each, so I know pain. Instead of waking up peacefully, feeling happy that my surgery was over and I was safe, I was in intense pain. I found myself having an ongoing dialogue with the recovery room nurse, who I believe was trying very hard to help me, about how badly I was hurting and the need for more pain medicine. She said, “You’ve already had 100 mg of Demerol.” “Yes ma’am, but I am still hurting. May I have some more or something else? I may need a B and O suppository or maybe a couple of Levsin S.L.s, do ya’ll have those?” After she put in the suppository to no benefit, she then brought me two sublingual Levsin S.L.s. The Levsin S.L. should dissolve immediately under your tongue and give almost immediate relief, but mine just sat under my tongue like little bricks and got stuck there, negating any benefit they might have had. I ended up having to chew them up into big chunks and then swallow them whole, just to get them out of my mouth. I continued hurting the entire time I was in the recovery room, and finally I told the nurse that the “100 mg” of Demerol she mentioned was “just a number” and that I needed more. I am sure that this remark came across as condescending, and she was probably thinking that I was just another one of those wimpy doctors who “can dish it out, but can’t take it,” and make bad patients; I may have been. After about 45 minutes of me hurting and asking for more pain medicine, in walked my doctor. “John, are you hurting?” “Yes, I think I am having a bladder spasm that will not break, and it is killing me. Is there something else you can do?” “What would you recommend, John?” Between groans I told him, “Well they’ve tried Demerol, Levsin S.L., and a B and O suppository, but nothing has touched this pain. How about giving me some morphine?” My surgeon looked at me somewhat puzzled as I writhed around clutching my lower abdomen and said, “Morphine, John? For a bladder spasm?” “I don’t care what you give me, I‘d like this pain to go away, please.” He said he’d order more pain medicine for me, and as he was leaving he said with a smile, “John, I had a good day.”(This is exactly what I wanted to hear.) I said, “Thank you for what you have done for me.” He ordered additional medication and the pain gradually went away about an hour after I returned to my room. My surgeon may not have appreciated the degree of pain I was experiencing. Despite my patients telling me for years how painful bladder spasms were, I did not fully “feel it” until I had one. My wife said she was fine throughout the whole process of my cancer journey until she saw me on the stretcher upon returning to the room, moaning with this bladder spasm. She said she had never seen me in that much pain. After the pain went away in the room, it never returned. Later my wife asked me if I thought I would be a better, more caring doctor now that I had been though this surgery and in particular this bladder spasm ordeal. I told her that as a rule I was fairly sensitive to patients’ needs already and that my experience probably would not make much difference. About two weeks later and now sporting a condom catheter with a leg bag on underneath my scrubs, I am checking on a patient in the recovery room whose prostate I have just removed. I am wearing a condom catheter because the amount of urine I was leaking filled a diaper in less than an hour, and a prostatectomy usually lasts two. As irony would have it, the patient is having a bladder spasm, and as I arrive he is clutching his lower abdomen and pleading with the nurse to give him medicine for the pain. “He has had 100 mg of Demerol,” the nurse says as I approach. He tells me this while indicating by his facial expression that he thinks the patient either has a low pain tolerance or is just pretending to be in pain to get more pain medicine. I saw myself lying there. “I am not as interested in the number of milligrams of medicine he has had; that is just a number. I am more interested in the relief of his pain; please give him more until his pain is gone.” I stayed in the recovery room, and he got more medicine until he was comfortable. The point of the above story is two-fold. For one, I am a more sensitive doctor having had this surgery and all the things that went with it, from being told the biopsy had cancer to dealing with the surgical aftermath. More importantly for this section of the book, I am making a point about luck. Don’t forget the role the luck factor plays in how well a decision pans out. There is no way to predict if a surgical patient will have bladder spasms or, for that matter, any other potential complication. I was unlucky in that regard and for no reason. A well thought-out decision, qualified doctors, and a little luck are what I am hoping for for you. At every step of your treatment, no matter what you decide to do, there is an opportunity for your situation to go well or not. There are issues about your anatomy, your cancer, your doctors, and how your body responds to treatment that cannot be predicted. You need to know this and be aware and prepared for the possibility of things not going precisely as planned. 

 

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44 Replies to “My bladder spasm experience”

  1. HI. Thanks for having this site.
    I just had RP by Divinci last monday, today is friday. 51 Y/O, was told would be overnight, eneded up being 3 nights.. fever & high HR gave them concern, had x-rays, tests, but we never figured out what was the cause.

    Now, I am home, perks help with the pain.. but the entry points are indeed painfull still,, and I feel (and look) bloated, adding 10 pounds while I was in the hospital eating lightly.. they tell me its natural, that it is air and water.. that it will go away over a few weeks, the excess weight with it.

    My question,, I had a nasty sore throat last night and trouble swallowing,, it is better now, but just ate a salad and it actually burned my tongue. Dont know why I should still be in pain? Whi the throat and tongue issues. Also, should I be exercises for the muscle while I have the catheter in? Should I drink alot of fluids? Thanks in advance.. this is my life, so I appreciate it.

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    1. sore throat probably related to having been intubated…the tube goes into the trachea…
      bloating is probably air and water…
      would wait on the kegel’s… i had a prostatectomy and never did them… i’m not sure they even work… they don’t hurt however…
      drink to thirst…

      i remember telling a friend after he asked me if it were true that the “robot” didn’t hurt. i said, ” imagine being mugged in an alley way and you were stabbed seven times in your abdomen. how would that feel?”

      good luck to you… i have to be careful about advice… i would discuss any concerns with your doctor…. i apprec your remarks. jm

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  2. This is a great story for me as I once had Prostisitis and the pain was the same .Just horrible . I just had Robotic Prostate removal 4 days ago and all went very well . Out of hospital in 16 hr after recovery .Third day while having 1st bouwl movement the pain started and wow a surprise and concern . So thank you Dr for making this story available .

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  3. Doc: thx so much for your sympathetic comments. I had a prostate biopsy today and have had several spasms, probably bladder. It is excrusiatingly painful and although I must urinate to flush out the blood, I dread it. I will soak in the tub of warm water if this continues as per my uruologist and take a Vicodin if it gets worse. The pain is enough to make me shaky and weak, feeling like I am going to black out. But the fact that I am passing urine, however slowly shows no blockage. I am can certainly relate to this terrible pain.

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  4. Doctor, thank you very much for sharing your own experience. I had a da vinci prostatectomy on April 4, had the catheter removed April 11 and was fine until the evening of April 14 when the spasms first started. By early morning April 15 I was in the emergency room begging for help with something I didn’t understand. I ended up being recatheterized by the ER team, since no pain medication they provided cut the pain at all. The second catheter was removed April 21 and I experienced two mild but very real spasms this past overnight. (It is now the morning of April 23.) Your summary and others i have read this morning let me know I’m not unique and there are solutions to seek other than yet another catheter.

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  5. I appreciate you sharing your experience but I would like to enlighten you on how bad it can get. In 2006 I had a TUMT done, which has left me with chronic bladder spasms. About every 4 to 8 weeks I have an episode similar to yours just out of the blue. This has been going on for 5 years. As an airline pilot I have not returned to work for more than 6 weeks at a time. I’m on all the usual meds….Vesicare, Diazapam, Ibuprofen and in extreme flare ups opium supositories. If you would have any suggestions I’d love to hear them…..

    Fred
    Wisconsin

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  6. i just had surgery on my left ureter for a UPJ obstruction laproscopy and they sent me home the next day (4 days ago) i started getting bladder spasms right after i voided my bladder the doctors at the ER would not give me pain medication and told me to breathe through a pain more intense than anything i had every felt before. it took from eight in the morning till after 4 for them to do ex-rays from the kidney stone they thought i had that i told them i didn’t and then drink contrast for a CT scan to see if my surgeon perforated an organ, and during that span of time they offered me Diloted twice but never at the time i was having the spasm and toradol right when i arrived that i never even felt make a bit of difference. this is a about the forth time in history i’ve had doctors judge me thinking i’m a junkie just for looking at me or simply reveling in the depravity without any sort of human compassion. the only way to describe the pain of the spasm is to say that some one slashes upen your belly sticks a couple of hook into ur organs and then starts pulling as hard as humanly possible, if someone were to have offered me a knife and that point to jam into my neck and end my life and all future events of my life devoid of that pain, or to suffer through it i’m pretty sure i would not have hesitated to take the knife. my father prayed over me as i screamed, going through this after every urination, and the only course left (as the ER refused to contact my surgeon until they had “more to go on” from their tests) and perhaps something that should have been done earlier, was to have my parents call everyone and tell them to pray and add them on all their individual prayer chains for their churches, it wasn’t until that moment that my urologists came in and comforted me, gave my anti spasm medication and got me a room upstairs with the most lovely nurses i have every met (or so it seemed after having the worst, in truth the upstairs ladies showed infinite more compassion, bedside manner, and down right humanity) also it wasn’t until Christ answered those prayers that He gave me wisdom to try to walk before i urinated, and to interrupt my flow when i could feel my bladder start cramping up and pain pulling on my kidney and with the combination of that and the oxybutynin and phenazopyridine did the spasms stopped. it has been 3 days without spasm and i am at home and still terrified they may return, that is a pain i can not endure, i am too frail. the upside is that i now know like i never had in my life, in only a way that 11 level pain on the 10 scale could show me is how utterly helpless i am and none of my pride and arrogance cant afford for me one once of self-sufficiency, Jesus the Christ is my sustainer, i can;t even breathe without Him and neither can i live a moment of my life without my organs internally collapsing and or combusting without His fingers holding together that which He has made. i am infinitely grateful from this lesson though it is harsh, but yet i am terrified that it might happen again over the next few days. thanks for letting me vent and provide some awareness that this is not a simple discomfort but a full out feeling of disembowelment, and that there are some things you can do (walking interrupting your urine stream to let your bladder rest for a millisecond and get on anti spasm medicine) even if the doctors have no idea what is going on and instead of giving to pain medicine they bring you benedryl for the allergic reaction to the contrast they are still telling you is impossible to have an allergic reaction to or they leave the room with your pain meds and you have the spasm and they take what seems like an eternity to find and once they do they wont give it to you until you breathe even though all you can do is scream, i know next time to pray that i might pass out, if that request might be denied by the all purposeful loving God, then i will claw my face off with my bare hands, i wish all doctors and nurses could take us at our word, take us seriously, my doctor said i have been having “pain issues” and i didn’t get what he wasn’t implying until later and i should have answered him, “yes my pain threshold is lower than some but that does not make it any less real, or intense”
    peter – fort wayne, indiana

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  7. I just came home from the hospital today after spending 4 days there recovering from my prostate surgery. My doctor explained that excruciating pain I am having is from bladder spasms, but is hesitant to prescribe medication for them since I was unable to pass gas after the operation which lead to quite a bit of pain. Here is what I was and still am experiencing: I start to get a flow of urine, but it kees going and going and going. It is very much like what you described. I had multiple spasms since coming home and am reduced to tears, wishing that something could end it and actually not too quietly screaming. Is there anything I can take or do? It comes on when I pass gas (I am scared what will happen when I have a real bowel movement), when I stand up after having been seated, or just as a notice a soft regular flow or seepage that then acts similar to the normal routine of urination. I need something. Thanks for any ideas. I could not have endured what you went through after your surgery. I am wearing a leg bag.

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  8. I HAVE THE DRUG FREE SOLUTION TO BLADDER SPASMS !! It is NOT about pain medication or muscle relaxers!!! It is about the Mind-Body connection that has been corrupted by the surgery and 2–4 hours of general anesthesia. The same conditions that mess up your balance, digestive system and body heat control “systems” after surgery. Here’s my story of how my bladder spasm came and went in UNDER 20 SECONDS.

    I was at home hand washing my support stockings in the bathroom sink on day 3 after robotic prostate removal at Northeast Georgia Medical Center. Swishing the water with my fingers to agitate the stockings in the soapy solution is what triggered my bladder spasm. It came on from zero to a million in 2 seconds. It was eye-tear-popping excruciating pain like I have never experienced. It felt like I was trying to empty an overly full bladder and something was closing off my urethra. I was on a leg bag catheter and my bladder was empty . . . WHY WAS THIS HAPPENING??? Realizing that, I turned around, facing the toilet and did exactly what I would do to urinate. Take a-hold, take aim, pull the skin back and let it go!! The bladder pain released within 5 seconds and I felt as if the huge urine backup was quickly released. I stood there another 5 seconds using the urethral muscles to enjoy those last 2 or 3 pulsating squirts. It was over. I found the cure. It’s just the bladder’s autonomous mind-body control circuit needing a re-boot.

    Several hours later I again felt the low level beginnings of another bladder spasm episode. Since I was far from the bathroom (still wearing the leg bag catheter) I went to the nearest garbage can and used it as my toilet. The same phantom yet very real movements did the trick again. The bladder pre-spasms went away. A day later and they have not yet returned. When they do, I will know what to do. Any nearby container will do.

    If this happens to you early-on while lying down (wearing a catheter), roll over on your side, grab a suitable container and going thru your elimination routine as realistically as possible, Fill-It-Up!

    My name is Robert Chemerynski (shimmer-rin-skee) from Gainesville GA. My catheter comes out in 3 days. This technique will work for you too.

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  9. This article was very helpful. Thank you. My husband just went through a RP and has been having these spasms on his 3rd and 4th day. While I was hoping he wouldget better with time he seemed to be getting worse. He has just had his first Vesicare and hopefully he will feel better.

    So I am not sure why the urologists don’t include this in the plethero of information that they give you to help you make a decision. We do have an amazing urologist though!

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    1. Yes it can be taken twice a day or 10mg at one time. It may or may not be more likely to have the side effects. Drugs like Pyridium also are helpful for symptoms associated with a catheter. Hope all con’t to go well and thanks for reading. jm

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  10. Thanks so much doctor. We have just started the journey you seemed to have gone through. I really find your diaries insightful, although its frightening to know just what we might be headed into. Kind regards.

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  11. My husband had da Vinci surgery on October 8. He had spasms for the 7 days his catheter was in and primarily for that reason was on Vicodin. The spasms would start whenever he had a bowel movement or passed gas. The urologist gave us some Vesicare samples but we were hesitant to add more possible side effects to what was already going on and didn’t use them. The catheter was removed yesterday and thinking there would be no further need for the Vicodin, my husband stopped the pain meds. About an hour ago, at 4 a.m., he had the most awful and intensely painful spasm yet. It must have lasted 20 minutes or more. I almost called an ambulance, as I have never seen him in that kind of pain. He was shaking, doubled over screaming, and in a cold sweat. I am frightened by reading how many people still experience these spasms well after surgery. We will try the Vesicare. Any other suggestions would be most appreciated. Thank you.

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  12. Doctor McHugh
    Thank you so much for publishing your ‘story’. I had the davjnci prostate removal surgery on October 23rd,2012. I guess I was a challenge for my urologist as I was on the table longer than most.
    Doctor John, although I believe I am healing well I am much concerned that my incontenince ( I think I murdered the spelling on that) is not getting any better.
    After 7 weeks of post-op, should a 71 y,o, patient be seeing some signs of progress for the bladder being able to hold the urine.
    I have done the excercises, not religiously, but at leaast a couple times a day.
    How do I train my bladder to hold mor than 1-2 ouncess before it (the bladder) thinks it has to void.
    I will really appreciate an answer

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  13. Hi,
    As you may have read I leaked completely for 3 months. One day it just stopped. This part of the process is very variable. I’d advise patience. This article by Walsh helped me and if you don’t mind I’ll use your question to do a post later today. Here’s to your recovery. “Tincture of time.”

    https://theprostatedecision.wordpress.com/the-female-side/incontinence-after-surgery-it-will-probably-be-the-wife-buying-the-diapers/

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  14. Hey doctor John, I have a question. If the reason for a psa blood test is to check for the possibility of a cancerous growth on the prostate, why do we need to have our psa checked after removal of the prostate. Will the psa test also give notice if there is cancer, say, within the renal system or somewhere else?

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  15. Hi and hope all well….
    The psa after treatment is very reliable for recurrence of prostate cancer after treatment regardless of the modality. It is specific to the prostate cell, so a rising psa after surgery or xrt means the possibility of recurrence of the cancer. It should go to near zero and stay there. Here is a blog I did on it and if you search the site you’ll find others. Thanks for reading. JM
    https://theprostatedecision.wordpress.com/2011/11/06/prostate-cancer-musing-psa-is-very-reliable-when-following-prostate-cancer-after-treatment/

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  16. Hi Dr. John,
    I can’t tell you how grateful I am to have found this site. I had bladder suspension surgery last week with complications from blood loss and had a catheter in till it was removed 6 days later. I thought that I had urinated a few hours later so was not concerned. Later that afternoon I started with the most excruciating pain as I could feel myself beginning to attempt to urinate. I sat in the bathroom for over three hours, screaming out every time what almost felt like contractions occurred in waves. I tried for 2 hours to get a response from my surgeon through his service because I wasn’t sure what was happening, didn’t know if I could get up, and did not want the ambulance squad who had seen me last week, 4 and half hours after the surgery who had to respond because my blood pressure kept plummeting; I did not want them to see me in the situation I was in now. My husband got me to the ER while I lay in the back seat of our car and a catheter was inserted again after about 12 very painful attempts. Sent home again by another doctor from my surgeons group. After researching what was happening to me, I found this site and what you described as a bladder spasm is exactly how it felt to me. In all honesty, it felt like I was experiencing childbirth again, without the benefit of an epidural. The pain was all encompassing. I described what happened to me to my surgeon, finally, at about 2pm in the afternoon the next day, when he finally returned my calls, and he completely discounted what I said and told me that Bladder Spasms were not what I was experiencing. I was incensed. How dare he tell me what was happening to my body when he wasn’t even there. I am copying this article and bringing it with me to my meeting tomorrow, to discuss next steps. Before he even spoke to me yesterday, he had a receptionist contact me to set up an appt. for 7:15 tomorrow morning to remove catheter. I said “No Way!” Not getting it removed till he can guarantee the same won’t happen again. I hope in this meeting he can provide me with some other way to ensure that my bladder is working properly and I don’t experience again what I went through on Monday. I saw another blog wherein a patient described a medication he was given prior to having cath removed which would prevent spasms. Are you aware of any such product?
    I thank you for allowing me to vent my frustration here. I am a very young, healthy 50 year old woman with no tendencies toward drama and I hope no one ever has to experience what I went through. I only wish every doctor were as empathetic as you!
    Kathy W.

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  17. I am a 31 year old woman who just returned from a night in the ER due to bladder spasms caused by a UTI. Thank you for this article. I have a history of UTIs, but had never experienced anything like this. The pain was excruciating. As another woman commented above, the waves of pain were similar to childbirth. However, I had a completely natural childbirth and I can say unequivocally that bladder spasms were worse. I have a high pain tolerance, and even during the most painful period of labour, transition, I was totally calm and thinking “this is manageable”. Bladder spasms brought me to my knees sobbing. I vomited due to pain. My husband was terrified. I experienced the spasms for about 36 hours without any pain medication – I couldn’t take most medications because I am breastfeeding. Finally, the antibiotic started to clear up the infection and the spasms subsided. As you say, the doctors were sympathetic, but ultimately seemed to say “it’s JUST bladder spasms”. This article helped me to understand what I was going through.

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  18. My brother is confinded to a wheel chair due to a car accident. He has catheter changes monthly done in the home by a nurse. After each cath change he experiences very painful muscle spasms. I think that most feel he should not feel pain due to the paralysis however he does have feel from the bellybutton up. Case worked is recommending Detrol LA the night before the cath change but I am not sure of the side effects of this drug. Any insight would be helpful.

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  19. Thank you for sharing this passage on spasms. I did not experience them until two days ago right before bowel movements. I couldn’t believe the pain. I get my catheter out tomorrow and hope this will help with the spasms.

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    1. The balloon of the catheter is the size of a golf ball and is a ” thorn in the side ” of the bladder. The bladder is a big muscle, doesn’t like the foreign body in there and is trying to ” spit it out.” You are correct, when the offending agent is removed the bladder will begin to behave. JM

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  20. Thank you for sharing. My husband had a prostatectomy in November and is still suffering side effects. In the recovery room they had trouble keeping his oxygen levels up (nurses did not put his C-pap machine on) so they did not give him pain meds. Could the hours he suffered bladder spasms cause more damage to the already delicate nerves

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  21. Thank you for sharing your story. I had my prostate removed 6 weeks ago but developed complications causing my bladder to separate from my urthea. The tissue was to weak to sew so my surgeon has placed me in “traction ” with my catheter. on the 7th day I began to experience extreme bladder spasms. My Dr. Has started me on hyoscyamine and myrbetric. The spasms have subsided somewhat and do not last as long

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  22. My husband had prostate gland removed 10 days ago and has virtually been in agony with bladder spasms ever since. No medication seems to work, could the catheter come out earlier than the 3 weeks we have been told?

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  23. Vesicare worked a little for my husband. Unfortunately the risks associated with removing the catheter are far greater than dealing with the pain. So hang in there with your hubby. My thoughts are with you.

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  24. I am 8 days into recovery from having my prostate removed (robotic)
    Everything was going as expected till the catheter was removed. I was filled by the nurse and I was able to hold it for a second and then had no problem voiding. Great I thought. Went home and went about my business. I’ve also was very constipated ….5 days without a BM. So I started to do what ever I could to go. I was givin a stool softener but it wasn’t till I drank some magnesium citrate and gave myself a home enama that I found some relief. That was the day before the catheter was removed. So I felt I had to have a BM and was pushing some pee out as well and that when I hit. I fell to the floor on my heads and knees and could hardly breath the pain was so intense. I had no idea what was happening. My wife wanted to help but there was nothing she could do. She called an ambulance and they took me to the er. I was about a hour before pain slow down. They did an X-ray and a cat scan and saw nothing…and then it hit again. This time my wife said it lasted for about 2 hours. I never knew there could ever be pain this excruciating. I asked them if there was a way they could just knock me out. My Dr. Finally came to the ER put the catheter back in and prescribed oxybutynin to help relax the bladder. I stayed over night in the hospital. Oh ya…they pumped so much pain killers into me and nothing seemed to help. So I’m back at home praying I will never ever experience pain like that again. In 4 more days I go back to get the catheter taken out again and pray I don’t have to same experience. But if it does happen again I now know what it is and will just have to muscle though it. I will try and do what another poster said and finish voiding though the pain. I hopping the new medication will help as well. I have to tell you, I was glad to see that I’m not the only one that has had this experience. Thanks for all who posted and for your stories.

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  25. My husband had brachytherapy treatment in 2004. He was told the burning would subside as the radiated seeds became inert every 2-3 months, with the pain and burning sensation gone in about 6 months. Six months came and went and he was still in pain. During this time he had to urinate every 20 minutes or he wouldn’t be able to hold it. He called his urologist during this time and was told he was just going to take longer then most men to recover. FOURTEEN months later, after contacting the surgeons and being told that what he was experiencing had NOTHING to do with his brachytherapy surgery, his bladder spasms began. He said he knew one was coming because his left butt cheek would begin to ache, and the spasm would hit 20-30 minutes later. Still no answers from the urologists or doctors. They did continue to prescribe norco for his pain. FOUR months after this, we were staying with family and he woke up early with his butt aching. He would take his pain medicine and the spasm would hurt, but the medicine calmed it down. This time however, his pain kept getting increasingly worse. It took eight hours for the pain to subside. This eventually turned into ambulance calls at 3am, hospital stays of 2-3days, a LOT more pain medicines, along with b/o suppositories. All this time and the doctors had no idea what was wrong with him. We eventually got a referral to the university hospital near us and he didn’t even have time to sit down before the head of urology told him he had radiation cystitis caused by the seeds burning the nerves in his bladder. After the 3rd or 4th emergency trip and hospitalization – and a tremendous amount of arguing on my part (I would go with him and stay with him in his room), they finally continued to give him as much pain medicine as he needed to control the pain. One nurse was extremely kind and helpful and would literally run back and forth to his room, giving him boluses every 15 minutes for 1 1/2 hours. New doctors on call would argue with me and tell mne he would stop breathing if they gave him that much. This continued off and on for 3 months and they inserted an intrathecal pain pump, while continuing his oral meds. He then received daily 2 hour hyperbaric oxygen treatments for 21 days that did not help.
    He continued in manageable pain, though constant, especially the need to urinate several times an hour, until 5 months ago, when the pain returned, only this time tremendous aching in his bladder and HORRIBLE pain when urinating. I forgot to mention – the original pain he had was close to the man above who compared it to being “disembowled”, but he would say it felt like he had 10 gallons of molten hot liquid in his bladder and an elephant was standing on it, while someone was twisting and pulling on his genitals. He just had a cystoscopy last week and was told everything looked “normal”. He is taking tomaslafin, cialis, pyridium, and just added nortriptyline, but still is in agony. He says he just dribbles while urinating and is in horrible pain in his bladder the entire time, which will last 10 minutes or more until he;s done. Then repeats it 20-30 minutes later. Even though I’ve written a lot – there are mant more details left out because it would just take too long to write. So – this is twelve years later with no end in sight. Does anybody have a similar story or advice? Thank you.
    Mare.

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  26. Hello, i am so glad to have found your site. My husband has stage 4 cancer which is now in the liver and bladder. He recently had a second TURP to remove scar tissue and discovered it was cancer growth instead. Ever since, he has been having horrid bladder spasms. Thank you all for sharing your stories and insights. I am still a mewbie at this spasm thing and it is the most horrifying thing we have been through yet. He lives on morphine and dilaudid, now they have added pyridine and tried b&o suppositories in the hospital. Which help some. In addition to this I have discovere 2 accupressure points that help in a crisis and we are currently testing out a homeopathic remedt which seems to ease the spasm. The accupressurempoints are on the outside of each foot just below the knuckle of the little toe, look up the exact spot. Hard pressure for 15-30 seconds or until the spasm eases sometimrs works. Its painful to do, but he says its worth it. The second one is in the crease on the back of the knee. The homeopathis we are working with is nux vomica because it also works on the transverse bowel which is also involved for steve. We are working with a naturapath. And it does help.

    Also, i have now learned how to flush and adjust the cathader. If it has slid down into the urethra at all, it puts pressure on the pproblem and also cannot drain or sometimes it is blocked by clots, scabs, and cancer debris. It can be hard work and sometimes even the nurses have to really work to get a clot to clear out. Or we end up at the urologists office.

    I hope this helps someone. I will be keeping the meds shared here in my mind for future conversations with the drs. Who are sometimes rather unimpressed with the problem.

    Thank you for sharing.

    Like

  27. Thanks for sharing your bladder spasm experience! While I still have my prostate, I’m currently wearing the 7th foley catheter this year because of colon cancer that has invaded my bladder. And spasms are THE worst pain I have come across on my journey.

    The first time I experienced them was when I went to ER because I had blood clots from a cancer tumour. They were so large that they prevented the free flow of urine, which was painful enough. A 24 French 3-way catheter relieved me after hours of waiting, but soon the spasms started. Not being a doctor, I had no idea about spasms, that they could occur, what they would feel like or how to relieve them. So I keep screaming and screaming for hours (and I usually don’t do that), and was offered plenty of painkillers: Morphine, Percocet, Dilauid – and none of them have any pain relieving effect on me.

    Finally, after seeing the second urologist the next day, he told me that what I was experiencing were in fact bladder spasms, and that his colleague isn’t give me medication against those. He introduced me to Ditropan and that did the trick for me.

    I still have trouble identifying what is a bladder spasm and what is just catheter related pain, and Ditropan doesn’t always work either. Would you recommend anything else against the excruciating pains of spasms, like Myrbetriq?

    All the best!

    Like

  28. The night I got home after prostate removal, I experienced the most pain filled twelve hours in my life. I am 68, I have had open heart surgery and two 4/5 disc replacements , but having three 45 minute spasms over twelve hours was a pain level of 9. My wife said she thought about hiding my pistol because she in 40 years, had never seen the pain in my face as it was.

    I didn’t receive very much “pity” from my Doctor, which was rather put off by her. I got Tynalol 3, and have determined they have a two hour life span. We found some relaxing pills, use while playing golf, they were much more effective. I skipped several day before my next two spasms, each as bad as the prior.

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  29. I had seed implant, external beam radiation at Radiology Clinic of Georgia, Decator, Ga. in 1998. About a year ago stated passing some blood. Urologist did a cystoscopy and saw radiation cystitis in the bladder but no lesions. Passed some really big clots the size of my thumb right after the procedure, but no blockage and they eventually stopped a short while afterwards, however I have had burning sensation when urinating ever since.Over the succeeding months started passing blood and small clots intermittently every week or two. In August experienced two back to back blockages with admission to the ER, large 3 way catheters for 24 hours with the accompanying excruciating spasm pain every 15 minutes lasting 1-2 minutes, with pain levels as related to by other persons in this blog. At the end of August I was able to get into Hyperbaric Oxygen for 30 sessions which really seemed to help, however for the past month I have been passing small amounts of blood every couple of weeks.

    I am scheduled to go in for 20 more Hyperbaric Oxygen treatments and hope that will get me over the hump. My urologist wanted to immediately do another cystoscopy but since I felt the original one exacerbated the bleeding problem, and Dr Muruve of the Cleveland Clinic advised to avoid having anyone go back into the bladder with another cystoscopy if at all avoidable, I want stay with the HBOT for the moment.

    This brings me to my primary question at this point in time. Is their an alternative method such as M3 parametric tesla MRI to determine the source of the bleeding which we believe is coming from the prostate area rather than the bladder? Perhaps someone has some experience with the MRi question or Dr McHugh could comment.

    Like

    1. A MRI would probably not be helpful in terms of the bleeding. The most common area of bleeding is from the bladder or prostatic urethra, which can be seen with cystoscope. Although these areas can be fulgurated to stop the immediate issue, often times the XRT changes are not cured but ameliorated temporarily hence the use of hyperbaric O2. Of note a diagnostic cysto with flexible scope would the best method to determine the bleeding sources but this limited in terms of treatment, the larger scopes being necessary. So, if there has been improvement, I’d stay the course. JM

      Like

  30. Michael Phillips

    Thank you, Dr. McHugh, for sharing your experience and illuminating what we must describe as the ordeal of bladder spasms. I’ve laid down motorcycles, losing plenty skin and almost a leg, yet nothing has approached the excruciating pain of a bladder spasm. Perfectly debilitating. My doctor removed my prostate last Tuesday (10/10) and I came home on Thursday (10/12). On Friday, the spasms began in earnest and just in time for the weekend. Fortunately, I contacted my hospital discharge nurse who, in turn, contacted the on-call Urologist, who prescribed oxybutynim. And this drug has helped, diminishing the spasms by a factor of 10, although they still arrive each time I feel the need to pass urine or stool, or just stand up after a few hours in a chair.

    Anyway, thanks again, Doctor McHugh.

    Bless you!

    Like

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