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Homepage – Forum Forums Newly Diagnosed With Bladder Cancer More pain than I could have imagined – any tips?

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #41620
    awakeanddreaming
    Participant

    Summary: I had WAY more pain after cystoscopy and TURBT than my urologist said I would.

    I’m a 34 year old female with zero risk factors for bladder cancer, other than being a bit over weight (every single health provider I have seen – nurses, doctors, anesthesiologists etc… have asked me if I smoked, literally not once in my life). This will be a bit lengthy as it’s the first time I’m getting the whole narrative out.

    In January/February I started noticing blood on toilet paper, and given my age, sex, and the fact I was running a COVID isolation site I initially thought it was just spotting due to stress. After getting my period I realized I was actually peeing blood. After at a panicked no sleep night I hit up the urgent care and after a CT (no contrast), x-ray, a pregnancy test, blood work, a pelvic exam, an ultrasound and a phone consult with urology, no one could figure out what was wrong, other than the fact that yes, I was peeing blood, and sent me home to wait for a referral to urology.

    Fast foward to March, the bleeding had stopped, all my urine tests came back completely clear (blood, tumor markers, etc…) but due to my travel history I asked my new urologist if I could have schistosomiasis. Though he thought this unlikely he agreed to do a cystoscopy and immediately found a growth in my bladder. I had burning and pain for 24 hours after the cystoscopy, which maybe should have told me things would only get worse. I had a second CT scan in April (this time with contrast) and the only thing it showed was the 1 growth in my bladder.

    On May 7th I had a TURBT on the last day before surgeries were cancelled due to a COVID outbreak in my city. The hospital experience was awful. The poor nurses were all getting redeployed to ICU/Emerg, the PACU had been turned into a COVID – ICU and I came out of anesthesia in a waiting room (with the proper monitors – but the nurses were super distracted as their lives were about to get turned upside down). As I recovered in the day surgery unit everything looked great, I had zero bleeding in the catheter bag during irrigation, just pure clear fluid. Then as my spinal wore off I started experiencing incredibly severe left sided back pain. The nurses were at a lose as I hadn’t had anything done except removing 1 small tumor. After the worst pain of my life, it eventually resolved with some tylenol and a heated blanket and stretching so we figured it must have been a back spasm. It took me forever to pee on my own, but when I did there was no bleeding at all and I got to go home.

    At home I was totally unprepared for the amount of pain I would feel during and after peeing, as well as the frequency. For the next three hours I lay on my couch, peeing every 10 minutes and in agony. The tramacet the doctor had reluctantly prescribed me barely touched the pain. In his words there should be minimal recovery, I would need no time off work, and shouldn’t need anything more than tylenol. So as the pain continued, I felt broken and betrayed. By Monday (surgery was a Friday) I returned to working (from home) and could barely focus due to the intense pain in my left lower back. I mostly just laid on my floor in agony, while still peeing every 20 to 30 minutes. I talked to my family doctor and we figured out the pain was probably referred pain from my bladder (tumor was on the left side) and came up with a pain killer and follow up plan and things slowly got better.

    Fast forward a week and the pain is back when I pee and I’m peeing more and more often again with some nausea. I managed work Monday but halfway through Tuesday I couldn’t do it anymore, my heating pad was barely helping and I was constantly peeing, couldn’t eat etc… I called my urologist’s office who said I should head to emergency, which didn’t appeal to me so I headed back to urgent care where they eventually (it’s a bit busy due to our crazy COVID numbers) started me on IV antibiotics due to the severity of my UTI. Probably should have gone in sooner, but I figured this was just still surgery recovery. I’d been peeing clots and blood all weekend, so figure it was just my bladder being weird.

    Wednesday was a whole new level of pain. I spent the day taking multiple pain meds so they over lapped each other with a heating pad up my crotch to try and relax my urethra. Nothing really helped. I eventually slept but was up at 4:30AM. Called my family doctor once they opened and was able to get an immediate appointment with a nurse practitioner. She called my urologist, and the response again was….go to emergency. So I headed back into a COVID zone to spent more time waiting, so the ER doc could talk to my urologist and they eventually prescribed oxybutin for the spasms plus more tramacet for the pain. It’s Sunday now and between the IV antibiotics, the Cipro and the Oxybutin I’ve been able to quit the pain killers.

    What frustrates me most about all of this is that no one told me about the pain. Everyone kept insisting it was a simple recovery. When I was at urgent care the doctor didn’t even suggest pain killers for the UTI. My urologist insisted I would need no time off work. I feel broken. How has this sidelined me so completely. I’m healthy, I’m active, I drink water, I sleep, I don’t smoke, I don’t drink much, and here I am, in crippling pain that people insist I shouldn’t have with a tumor no one understands how I have.

    So I guess what I’m asking is what have others done to cope with the pain? Has it been this bad for other people? I don’t get the pathology results till June 3rd but I read my surgery report and it was a superficially papillary tumor, and just one. Any tips for dealing with pain for what I assume will be upcoming cystoscopies and possibly future TURBT?

    #41626
    marysue
    Participant

    Hi awakeanddreaming:

    I can’t believe what you have been through.  I know COVID has complicated things greatly but this is crazy.  I’ve had 2 TURBTS and didn’t experience anything close to what you did.  I was given a script for an antibiotic and pain when leaving the hospital.  I was told to take the antibiotic to prevent a post op UTI and the pain killer was in case Tylenol didn’t work.  I found 2 extra strength Tylenol did the trick.  I did need to rest a lot for the first couple of weeks after surgery.

    I wasn’t working the first time around but if I was I would have taken 2-3 weeks off because I just felt really tired after the surgery.  The second time I was working part time retail and took 3 weeks off based on my experience from the first one.

    I do know that the majority of people recover from TURBT surgery without incident.  Why you have gone through this absolute hell I have no idea but the medical system owes you some assistance to get the pain under control so you can rest and heal.  I suggest drink lots of water and stay off caffeine.  The water will help the wound in the bladder heal. As you’ve discovered the heating pad is a good thing.

    Another thing I can suggest if you haven’t already tried it is acupuncture treatments.  I did have some back ache after the surgery and the nurses told me it was probably from being positioned in the stirrups for surgery.  I do have sciatica so the legs up in the air probably aggravated it.  Anyhow, acupuncture on my back worked.  They can treat the front or back along what they call the bladder meridian.

    The only thing that I can think of is that you may be experiencing complications from the spinal as well as pain in the bladder from the wound.  I had a general anesthetic, not a spinal.  I was given the option and told the anesthesiologist if he wanted a well behaved patient he’d better put me under.  I’m also very leery about spinals in general as I’ve had friends who had them when they were in labour having a kid and they had issues afterwards so that was another reason for not choosing that option.

    I’m not sure who you’d see about getting checked out about the spinal but maybe talk to your urologist who did the surgery.  Anyhow, these are my thoughts.  I hope they help and that you do get better soon.  ((((HUGS))))

    #41631
    awakeanddreaming
    Participant

    Thanks for this.

    It all just really sucked. It seems like between all the antibiotics and the oxybutin things have finally calmed down. I think I’m going to be paranoid about peeing for a long time now though worried that the infection will come back.

    I did talk to my doctor about whether it could be a complication of the spinal, but we don’t think so. It’s the second one I’ve had. We think it is more likely either from the positioning on the table or referred pain. I have a phone call with the urologist next week to get my biopsy results and a phone call with my family doctor the week after so if anything comes up I’ve got appointments already scheduled.

    Next time anything goes up my urethra I’m asking about preventative antibiotics and some better pain killers!

    #41632
    marysue
    Participant

    Hi awakeanddreaming:

    I remember prior to my first TURBT I did experience a dull ache in my back right above my tail bone.  Once I had the surgery the pain was gone.  I never felt it again until the cancer recurred.  At first I thought it was from sciatica pain but after thinking further I realized the pain felt different. It was just this deep dull ache which I had never experienced before. I’ve never had the pain since. When I mentioned it to the nurse post op she did tell me that it could have been referred pain.  The tumours might have been what was causing the pain but it travelled to my back.  I have since figured out that nerves are weird.

    I have extra nerves on the inside of my jaw line that I didn’t know about until I needed extensive dental work.  When my dentist gave me freezing, he thought that I’d had enough and started to work on me.  I yelped because I could still feel what he was doing.  He stopped and took a second different kind of x-ray and that was when we discovered the extra nerves.  So now when I need dental work I get a hefty extra dose of freezing on the inside of my jaw.

    I don’t blame you for wanting to take extra precautions for the future.  Many uros will prescribe antibiotics as a preventative prior or post cystoscopy exam or surgery.  You will need to bring this up with your doc to discuss what is right for you.  My first uro automatically gave me an antibiotic script but my current guy does not.  I did need antibiotics post cysto in 2018 as I developed a horrible UTI afterwards.  That was the first any only time that I got a UTI after a procedure.  So when I had my annual cysto in 2019 I asked for and was given an antibiotic.  I didn’t bother in 2020 and was fine.  I bone up on the cranberry supplements and water intake about 1 week prior to a cysto check and also start drinking cranberry juice.  I continue this for 3-4 days post cysto.  It seems to work for me.

    AS for the pain killers, if you discover what works well for you, then yeah, I’d be asking for that too.  I’m glad that things are finally calming down for you.  All the best with the rest of your recovery.  (((HUGS)))

    #41635
    MrC
    Participant

    I’m really sorry to hear about your nightmare experience.  I’m a 44-yo male, and recently went through a TURBT procedure, but my experience was quite opposite.  The whole CT/US/Uro/Cystoscopy/TURBT time-frame was within 3 weeks, which was helped by the non-urgent surgeries being cancelled due to COVID, so I was fast tracked.

    Fortunately I didn’t have any pain after the TURBT, only discomfort from the catheter, which I had to keep for 5 days.  They put me on IV antibiotics immediately after the surgery, kept me overnight at the hospital, and then subsequently sent me home with a script for antibiotics that basically ended the same day that the catheter came out.

    Did you get antibiotics right away?  It sounds like perhaps you got a UTI early on.  The crazy thing that I have found is that there is no pain/sensation in/around the bladder, but only at the “tip” (I’m male).  I suppose that makes sense with nerve endings where they are.  I did have some mild back discomfort yesterday which was immediately followed by a large clot and blood in my urine, but that seems to have stabilized, and I’m hoping it was the scab falling off.

    I wasn’t given any super clear instructions on what to do/not do, but from my research, lifting anything greater than 10lbs is greatly frowned upon.  Not sure what your job entails, but long periods of sitting or standing should be avoided, as well as lifting.

    My heart and thoughts go out to you.  Like you, the doctors were surprised, since I also am a lifelong non-smoker, and am relatively young.  My suspicion is that many more people could have it and not know as the majority of patients only have blood in urine as a symptom, and unless it is gross hematuria (blood that you can actually see), it may go unnoticed and/or dismissed for a long time.

    Sounds like you caught it early, so hopefully your awful experience will be short lived and you can put this past you ASAP.  Good luck with your pathology results.  Mine came back within about 1 week, so hopefully you have some answers sooner.

    All the best!

    #41644
    awakeanddreaming
    Participant

    I think that was probably the problem. I got antibiotics in my IV but none to take home after.

    I have my follow up appointment tomorrow and I’ll mention the intense pain to my urologist. I am going to see if I can get follow up tests to make sure that my body has also truly cleared the infection.

    My scab seems to have come off in two pieces. I lost most of it about 1 week after and then the last of it seems to have come off 3 weeks after. Hopefully that’s all the clots and bleeding I end up having.

    Hopefully the rest of your recovery is as pain free as the beginning!

    #41658
    awakeanddreaming
    Participant

    Well, I got literally the best news that was possible. I’m still a bit in shock and awe but the end result of all of this was papillary urothelial neoplasm of low malignant potential, which means they found no cancers cells! It can still reoccur, and I get to have cystoscopies for the next 10 years, but there was literally no better outcome than this!

    #41669
    Nightingale
    Keymaster

    Very glad to hear your happy prognosis.  And especially glad you no longer have the pain.  I was late catching up, but after I read your initial post, I was thinking that there may have been some blockage in your Ureter from the surgery.  Thank heavens that is behind you now and you can go on living life to it’s fullest!

    My best,

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