Cystoscopy with hydrodistention

I'm scheduled to go in Friday for a custodian with hydrodistention, in which they anesthetize me and overfill my bladder with water to stretch it. I've had this done several times before, and it helps with my bladder pain but sure isn't much fun. I'll be sore for a few days, and more often than not I end up hospitalized overnight with anesthesia complications or post-rocedure pain.

I haven't had this done since I started getting Botox injections in my bladder about a year and a half ago. Those help a lot with my urgency and usually eliminate my incontinence for a few months, but this time around I've started having a lot more bladder pain not that long after the Botox. Many of my incontinence episodes lately have been where it's just gotten to painful to hold it in any more.

I always dread this procedure because it hurts, and because they never put a catheter in me or a diaper back on me, so I wake up feeling like I've got to pee desperately. I either find I can't go without a catheter, or I end up peeing all over the bed. The catheter doesn't bother me, so I'll probably ask them to put one in me during the procedure. Even if they put a diaper on me, it'd be one of the cheap hospital kind.

Good luck with your upcoming procedure!

I'm nervous about it. My interstitial cystitis had been active lately, and I'm in a lot of pain most of the time. I think that's going to make the pain worse after the procedure.

I'm also taking a medication that blocks the effects of opiates, so I worry that they won't be able to manage my pain very effectively. The anesthesia nurse who did my prescreening told me to skip one dose before the procedure, but that's still going to leave me with a pretty significant opiate block.

On the other hand, if the procedure goes well, I might be out of diapers again for a few months. That would be nice.

Italuv, I wouldn’t worry about the anaesthetist being able you to put to sleep for the procedure. They have drugs other than opiates that would work well. Having to take a drug that blocks the effect of opiates sounds like it might well be a problem after the procedure. Be sure that your physician understands your entire medical situation. Doctors need to know the whole story in order to prescribe optimal treatment.

I'm of the belief that if any procedure isn't expected to last a year or more, then it's nothing more than trying to put a bandaid on a severed limb. Completely pointless.

I can however, understand wanting to go through with it anyways. Hope it goes as you hope it will, and get every bit of the benefits you're hoping for.

I'm home, later than expected because of post procedure pain, and with an unexpected Foley catheter. The nurses said I'll need to keep the catheter in until my urologist follow up in three weeks, but I'm probably going to take it out in a couple of days and go back to my usual intermittent self-cathing schedule.

Slomo, you are correct that it's a bit of a band aid, but considering how bad the interstitial cystitis pain had gotten it's worth it just for a band aid. The Botox injections I get three or four times a year also help with the pain, but more so with the urgency and incontinence; the hydrodistention is mostly about the pain, but may also give me a couple of months of continence before I start leaking again.

I'm at a point where the incontinence scarcely bothers me, but when I spend days at a time with severe bladder pain and urgency that isn't relieved by urinating, I'll take whatever sort of band aid I can get.

Post-procedure pain was the biggest challenge. They gave me quite a lot of narcotics to overcome the naltrexone block, and that's even with being off the naltrexone for 36 hours. The whole point of naltrexone is that it blocks opiate receptors, and I was surprised they didn't want me off it for at least twice as long. I take it for itching caused by liver disease, so I was relieved that I didn't have to be off it too long - the itching is already ramping up.

Interestingly, they gave me a prescription for opiates for pain, and instructions to restart my naltrexone. I'm not sure which to do, but I'm not in much pain any more so I'll probably just skip filling the painkiller prescription.

ltaluv said:

I'm nervous about it. My interstitial cystitis had been active lately, and I'm in a lot of pain most of the time. I think that's going to make the pain worse after the procedure.

I'm also taking a medication that blocks the effects of opiates, so I worry that they won't be able to manage my pain very effectively. The anesthesia nurse who did my prescreening told me to skip one dose before the procedure, but that's still going to leave me with a pretty significant opiate block.

On the other hand, if the procedure goes well, I might be out of diapers again for a few months. That would be nice.

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If it's any help my friend I take a bucket load of opiates , combination of Fentanyl 100 mcg per hour changed every 2 days and 10 mg oxcycodone IR up to 6 times a day , along with those I also take Movantik that unlocks the opiod receptors in the bowel alowing me more normal bowel movements , it does not effect my pain control in any way , ordinarily I have neurogenic bladder and bowel with IBS C , so they have minds of there own, fortunately it's only once in a great while that I lose fecal control and usually it's when I am pretty sick with something else that causes loose stools , but fear not you will do allright .

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Not filling the prescription was a big mistake. My bladder was hurting a lot yesterday morning, and by the time is gotten to the pharmacy to fill it, I'd gotten to a point where the first couple of doses didn't help the pain much. It was yesterday evening before the bladder pain really started to subside.

It wasn't helped by work calling me in yesterday, so I spent ten hours squatting in front of electrical cabinets (squatting or kneeling tugs on my catheter - ouch!) And walking back and forth between opposite ends of a big piece of machinery (which works the catheter in and out of my urethral opening - double ouch!)

This morning I've got a lot of redness around my urethral opening, and some white stuff oozing out. I can't tell if it's just mucus it if I've got an infection, so I'll go to urgent care and get it looked at.

I'm so tired of traipsing off to doctors' offices all the time.

Yeah people have no idea about catheters , they bitch about them when laying in a hospital bed , but that ain't nothing compared to mobile use , any tension on the bag get transferred directly to your bladder, and we wont discuss the hamburger your urethral opening gets ground into, this is why i always have lidocaine jelly / ointment & EMLA IN the diaper bag , of course the important difference is the jelly can be used around plastic and rubber where the ointment can't go.

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I went to urgent care, and they told me that they couldn't do anything with a catheter and that I should go to the ER instead. So I got to spend three hours waiting in the ER before I got in to see a doctor, who took a cursory look at my urethral opening and said it was all fine. They called a urologist to ask about the white stuff, which it turns out is common after a cystoscopy procedure. A urinalysis showed no infection. So, after four hours, I went home with just as much pain as when I arrived.

The nurse said it can take two or three weeks for my urethra to get used to having the catheter in place. Hopefully I can get it out before I reach that point.

Why didn't you ask for some lidocaine jelly! Or to have some instilled in your bladder ( kids don't try this at home lidocaine is an anesthetic but also a very potent cardiac drug ) is the pain from the bladder distention itself or is your bladder spasming and trying to expel the catheter baloon , easy way to tell is if you have urine coming out that is not thru the catheter , everytime i have an indwelling i still have to wear a diaper because i get blow by that comes out of my urethra instead of out the catheter into the drain bag .body "snot" is not unusual people with SCI who use bisacodyl suppositories on a daily basis get a clearish whiteish mucus discharge after bowel care that we just call "butt snot" and devolping a crust on catheters can also be either components of urine or body snot , many indwellings get changed prematurely due to mucos plugs.

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ltaluv said:

I'm home, later than expected because of post procedure pain, and with an unexpected Foley catheter. The nurses said I'll need to keep the catheter in until my urologist follow up in three weeks, but I'm probably going to take it out in a couple of days and go back to my usual intermittent self-cathing schedule.

Slomo, you are correct that it's a bit of a band aid, but considering how bad the interstitial cystitis pain had gotten it's worth it just for a band aid. The Botox injections I get three or four times a year also help with the pain, but more so with the urgency and incontinence; the hydrodistention is mostly about the pain, but may also give me a couple of months of continence before I start leaking again.

I'm at a point where the incontinence scarcely bothers me, but when I spend days at a time with severe bladder pain and urgency that isn't relieved by urinating, I'll take whatever sort of band aid I can get.

Post-procedure pain was the biggest challenge. They gave me quite a lot of narcotics to overcome the naltrexone block, and that's even with being off the naltrexone for 36 hours. The whole point of naltrexone is that it blocks opiate receptors, and I was surprised they didn't want me off it for at least twice as long. I take it for itching caused by liver disease, so I was relieved that I didn't have to be off it too long - the itching is already ramping up.

Interestingly, they gave me a prescription for opiates for pain, and instructions to restart my naltrexone. I'm not sure which to do, but I'm not in much pain any more so I'll probably just skip filling the painkiller prescription.

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Just curious, but is there a long term solution to your problems? Even full urinary incontinence maybe? And if so, why not just go that route, have one last surgery, and be done with the pain?

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ltaluv said:

Not filling the prescription was a big mistake. My bladder was hurting a lot yesterday morning, and by the time is gotten to the pharmacy to fill it, I'd gotten to a point where the first couple of doses didn't help the pain much. It was yesterday evening before the bladder pain really started to subside.

It wasn't helped by work calling me in yesterday, so I spent ten hours squatting in front of electrical cabinets (squatting or kneeling tugs on my catheter - ouch!) And walking back and forth between opposite ends of a big piece of machinery (which works the catheter in and out of my urethral opening - double ouch!)

This morning I've got a lot of redness around my urethral opening, and some white stuff oozing out. I can't tell if it's just mucus it if I've got an infection, so I'll go to urgent care and get it looked at.

I'm so tired of traipsing off to doctors' offices all the time.

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Two words. Lidocaine ointment.

It is 5% lidocane suspended in a thick ointment (water based but somewhat similar to petrolium jully). Not that normally thin gel, so it stays around longer before getting absorbed.

With my numerous surgeries down there I was greatful for having it. You just gently pull back the tip of your penis, then generously coat the first inch of exposed catheter with the ointment. It burns just a little at first, but then numbs and lubricates it for up to several hours afterwards. This GREATLY aleviates any pain or discomfort, prevents the skin from catching on the tube and being piched, and effectively eliminates any swelling or redness.

Wish I'd known about that lidocaine ointment! I used lots of lidocaine jelly, but it would only keep things lubricated for a little while. Then I'd be numb and have the catheter sticking to my urethra, which ended up making things worse.

I called the doctor this morning and asked if it was ok to take out the catheter. They told me to come on in to get it removed, but after I asked they said it was ok to take it out myself. I had the right syringe on hand for deflation the balloon, so I didn't waste any time getting it out. My urethral opening is swollen and bleeding a bit, but it's much better than with the catheter in.

The pain is on again, off again. It seems to have a mind of its own, and isn't related to whether my bladder is full or empty. I'm taking the narcotics they gave me, so I'm not taking my naltrexone. That leads to itching, caused by my liver disease, that is usually blocked by the naltrexone. Once the bladder pain subsides I'll be able to get that back under control.

My bladder pain is due to interstitial cystitis, and even things like bladder removal don't necessarily eliminate the pain. Incontinence is not usually considered to be a symptom, but I may also have OAB, or maybe I'm just special.

I don't know what I'm going to do long term about all of this. The liver disease will kill me eventually, but in the meantime I'm thoroughly tired of my bladder pain and urgency ruling my life. With all the publicity that the opiate epidemic is getting, pain control for non-cancer pain is very difficult, and even asking for pain management is likely to get me flagged as a drug seeker. So I suppose I'll just grit my teeth and try to hold everything together until my kids finish high school, at which point I can evaluate my options.

I'm just sick and tired of being sick and tired.

ltaluv said:

Wish I'd known about that lidocaine ointment! I used lots of lidocaine jelly, but it would only keep things lubricated for a little while. Then I'd be numb and have the catheter sticking to my urethra, which ended up making things worse.

I called the doctor this morning and asked if it was ok to take out the catheter. They told me to come on in to get it removed, but after I asked they said it was ok to take it out myself. I had the right syringe on hand for deflation the balloon, so I didn't waste any time getting it out. My urethral opening is swollen and bleeding a bit, but it's much better than with the catheter in.

The pain is on again, off again. It seems to have a mind of its own, and isn't related to whether my bladder is full or empty. I'm taking the narcotics they gave me, so I'm not taking my naltrexone. That leads to itching, caused by my liver disease, that is usually blocked by the naltrexone. Once the bladder pain subsides I'll be able to get that back under control.

My bladder pain is due to interstitial cystitis, and even things like bladder removal don't necessarily eliminate the pain. Incontinence is not usually considered to be a symptom, but I may also have OAB, or maybe I'm just special.

I don't know what I'm going to do long term about all of this. The liver disease will kill me eventually, but in the meantime I'm thoroughly tired of my bladder pain and urgency ruling my life. With all the publicity that the opiate epidemic is getting, pain control for non-cancer pain is very difficult, and even asking for pain management is likely to get me flagged as a drug seeker. So I suppose I'll just grit my teeth and try to hold everything together until my kids finish high school, at which point I can evaluate my options.

I'm just sick and tired of being sick and tired.

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I feel you my friend IC is curse i dont wish on anyone had a friend who did have there bladder basicly removed and still in pain, its like phantom limb pain , you think doctors give you shit about pain in parts they can see, just wait till they cant dumbasses really get clueless then , i am in palliative pain management my doctor is fantastic , she graduated school and practiced neurology for 3 years decided she didnt find it intresting but liked pain it was challeging and went back to school to do pain , she has been practicing as pain doc 40 years this year,she doesn't give a shit about the CDC optional guidelines and has been doing pain management for much longer than it's looked cool on a business card , the doctor I had before Her was incredible and started me on pain control , she moved away and the guy that took her place tried to ruin me saying he didn't "understand my pain" and at best i was a seeker and worst an addict it was two years of struggle before i landed her and it took a leap of faith for her to belive the patient and all my other doctors over this clown but she did ,and she has been squarely in my corner for many years now , her and her entire staff love me, respect me , and do whatever they can do to make my life easier (which is frankly amazing these days) they know I am terminal that's a fact , suffering is optional and they move heaven and earth to make sure I don't .doctors need to wake up not every patient is an addict trying to scam them and working under that assumption is killing people ....

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Tetra said:

I feel you my friend IC is curse i dont wish on anyone had a friend who did have there bladder basicly removed and still in pain, its like phantom limb pain , you think doctors give you shit about pain in parts they can see, just wait till they cant dumbasses really get clueless then , i am in palliative pain management my doctor is fantastic , she graduated school and practiced neurology for 3 years decided she didnt find it intresting but liked pain it was challeging and went back to school to do pain , she has been practicing as pain doc 40 years this year,she doesn't give a shit about the CDC optional guidelines and has been doing pain management for much longer than it's looked cool on a business card , the doctor I had before Her was incredible and started me on pain control , she moved away and the guy that took her place tried to ruin me saying he didn't "understand my pain" and at best i was a seeker and worst an addict it was two years of struggle before i landed her and it took a leap of faith for her to belive the patient and all my other doctors over this clown but she did ,and she has been squarely in my corner for many years now , her and her entire staff love me, respect me , and do whatever they can do to make my life easier (which is frankly amazing these days) they know I am terminal that's a fact , suffering is optional and they move heaven and earth to make sure I don't .doctors need to wake up not every patient is an addict trying to scam them and working under that assumption is killing people ....

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I wish I couldn't do a 'me too' on dealing with non-cancer pain. I deal with chronic cluster headaches--imagine a nasty migraine that hits every six hours, like clockwork, every day, for the last eighteen years. When they get insanely out of control, I'm in the ER with my blood pressure through the roof, screaming and banging my head into the wall. Typical remedies like oxygen therapy don't work for me, I've only had two drugs ever work to help. One lost it's effectiveness after two to three months, the other I've had to back down from an effective dosage because it has been slowing down my heart.

I've lucked out in finding the right neurologist, one who I can honestly say has kept me alive (I would have ended my life long ago if I hadn't found someone like her willing to help me) and she understands just how debilitating chronic pain can be on your body. She warned me at the beginning that she would drop me in an instant if she ever thought I was a drug seeker, and she still has me as a patient to this day. Before her, I had doctors try to threaten me with forcing me to take medications or they would have me forcibly hospitalized (good luck with that!), one doctor who told me my skydiving was the cause of my headaches (even though I started jumping AFTER the headaches started, how does that work?) and another who, when I called up complaining about the current medication regimen losing effectiveness and asked what to do, told me she didn't trust me to follow her guidance (why the hell would I even be talking to her in the first place then?).

Never been an addict, but been on high does opioids to deal with the pain when nothing else worked. Off of them now that I found something that does work, but I still have to explain to a lot of doctors that when I go talking about my pain levels, that they need to re-calibrate themselves as what I call a five on my pain scale has most people screaming uncontrollably. A good indicator was one time I was in the ER with an out of control headache and a coworker came in with a dislocated elbow. He was given 2mg of morphine to deal with the pain and was loopy as hell. They gave me 30mg (yes, thirty!) of morphine and it was just enough to get me back to normal, but not enough to make me loopy.

Yeah, there are some of us in this world who deal with pain and understand it well. Finding a doctor who works with us to overcome that isn't easy.

I remeberbthe first lesson I learned in pain, people's scales are very different , I take 100 mcg of Fentanyl ever hour and change my patch every 48 hours with oxcycodone IR 10 MG UP TO 6 times a day, but my doc knows i am not reckless and i have good days that i hardly touch the pills , the flip side of that are days that just being a line is torture , so she tells me on those days take it every 2 hours if I have to, this doc earned my undying respect and love on my first appointment ( nobody can figure out what she did to me , that caused me to be do loyal to her, if a doctor screws up I let them have it) on my first appointment she said " I know you have sufferred imensley to get here, you are my patient now , and i will not allow you to suffer needlessly anymore, that was something I desperately needed to hear, and more importantly a doctor who meant it!
I fortunately don't have migraines but They run in my birth family, but I saw 1st hand what They did to my mother and it wasn't nice , especially in the 1970's when less was known about them than even today , I have heart disease , epilepsy and a few other genetic goodies , From the known ones I decided not to have kids it was just a gut feeling , that friends and doctors told me i was wrong " blowing it out of proportion" until i got the diagnsis thats killing me, now I am every bodies hero they thank me for my courage and for listening to my gut , otherwise I would have started a genetic chain with each person being sicker than the last ( more profoundly effected than the ones before) .any way Dr's need to stop conflating the opioids problem with legitamite pain patients very few of us have been involved ( it's less than 1% ) we may have a physical dependence because of or health but certainly not the addiction that causes us to lose everything we own including our lives.

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ltaluv said:

Wish I'd known about that lidocaine ointment! I used lots of lidocaine jelly, but it would only keep things lubricated for a little while. Then I'd be numb and have the catheter sticking to my urethra, which ended up making things worse.

I called the doctor this morning and asked if it was ok to take out the catheter. They told me to come on in to get it removed, but after I asked they said it was ok to take it out myself. I had the right syringe on hand for deflation the balloon, so I didn't waste any time getting it out. My urethral opening is swollen and bleeding a bit, but it's much better than with the catheter in.

The pain is on again, off again. It seems to have a mind of its own, and isn't related to whether my bladder is full or empty. I'm taking the narcotics they gave me, so I'm not taking my naltrexone. That leads to itching, caused by my liver disease, that is usually blocked by the naltrexone. Once the bladder pain subsides I'll be able to get that back under control.

My bladder pain is due to interstitial cystitis, and even things like bladder removal don't necessarily eliminate the pain. Incontinence is not usually considered to be a symptom, but I may also have OAB, or maybe I'm just special.

I don't know what I'm going to do long term about all of this. The liver disease will kill me eventually, but in the meantime I'm thoroughly tired of my bladder pain and urgency ruling my life. With all the publicity that the opiate epidemic is getting, pain control for non-cancer pain is very difficult, and even asking for pain management is likely to get me flagged as a drug seeker. So I suppose I'll just grit my teeth and try to hold everything together until my kids finish high school, at which point I can evaluate my options.

I'm just sick and tired of being sick and tired.

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When in a "pinch", you can also use petrolium jelly. I found that when it dries out it leaves behind small sand like crystals though. That can be worse than nothing if you don't clean the catheter often, so you have to be really carefull with it. Still better than the gel though.

As for the bladder pain, I too had that with my urges. It took many years to finally get a urologist to understand the ONLY way to prevent my urges was to prevent my bladder from filling up. Catheters gave me the desired result, but like you I have a sensitivity to catheters and can't use them long term.

I went through too many sphincterotomy surgeries, and a recent prostate removal, to get me there. I'm hopeful it finally worked though as I'm finally leaking pee all the time. The temporary pain from the surgeries was worth it though. With my bladder always empty, I haven't had any more painful urges. Full diaper dependence has saved me, and it's unfortunate most urologists just can't accept that.

I want to thank all of you for your insights, your sharing of experiences, and your kind words. It's hard not to get down when it seems like my life is just a journey from one episode of pain to the next, often with no break between. I try to count myself lucky for my many blessings, but I'm not always successful. It's easier to count blessings when I'm not hurting.

I appreciate all of you for the help you've given me.

ltaluv said:

I want to thank all of you for your insights, your sharing of experiences, and your kind words. It's hard not to get down when it seems like my life is just a journey from one episode of pain to the next, often with no break between. I try to count myself lucky for my many blessings, but I'm not always successful. It's easier to count blessings when I'm not hurting.

I appreciate all of you for the help you've given me.

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I know the feeling of life being just one episode of pain after another. It's not a pleasant one, and it is really rough to not drop into depression (very common with chronic pain) and keeping spirits up all the time is near impossible. I will snap at my wife when things get bad, and then immediately apologize as it was not something I meant to do. I'm lucky that I have her by my side and she understands me well enough to know that the pain often is what is talking instead of me.

I'm here to talk if you need it, sometimes having someone who understands to some extent can make life easier.

My catheter is back in. The pain this afternoon just kept ramping up until it wasn't manageable, not to mention four different accidents through the afternoon. I switched to a silicone catheter instead of silicone-coated latex, so maybe it'll cause me less trouble.

I still need to find some lidocaine ointment.