First of all, I have cerebral palsy, resulting in neurogenic bladder. I have been dealing with bedwetting since age 19 (began out of nowhere after years of dry nights) and daytime problems since 2005. I have worn protection 24/7 since then. I see a urologist and she says that there is no need for surgery at this time, because the problems are purely neurological. She said she wants to try meds first, but I have been on OAB meds for 7 years off and on, and frankly, I am at my wits end with them. Most of them (Except Detrol LA) cause horrible dry mouth, constipation, and blurred vision (which is an issue because I already wear glasses to begin with.) I go to a big teaching hospital (U of Michigan) to a urologist there, so I never get to express my frustrations with each med (as we try it) directly with her. That kinda upsets me, as I end up going off it because I just can't take the side effects, and she then wonders why and tries yet another. Detrol worked initially, but I just had a urodynamic study and leaked (was on it at that time) so she took me off it because it was not working in her eyes. (It wasn't.) I understand why she did that but I can't deal with the side effects the others cause me. She listens to me, that's not the problem. She is the best urologist I have ever had. I just feel like it is useless to try to keep taking medicines if they don't work. I am fine with having to wear protection now (was at first quite embarrassed about the whole situation.) and have it prescribed my this urologist so Medicaid covers it in ample amounts. The days of being embarrassed about it are over, and I have just accepted it as a part of my life. Sometimes the side effects of these medicines are horrible and they are far worse than the condition itself in my opinion. My mental health caseworker and I spent some time talking about this today. I am sorry this is so long. I am so frustrated and just need to vent to others who understand. As much as I try not to let this bother me, the tears just keep flowing today. I am at my wits end.
First let me say I wish I could be there to give you a hug! You have every reason to be upset, and feeling bad about your situation! We ALL need a "pity party" now and then.. and VENTING is the only way to get by it! So VENT all you need to!
I too have a neurogenic bladder due to nerve damage done during a hysterectomy.
I've been "self cathing" for 10 years. I am unable to pee at all on my own because my bladder is severly prolapsed and my urethra is at a 90 degree angle. The angle keeps me from having "free flowing urine" as you suffer from.
I'm a little puzzled as to WHY they are trying drugs to correct your problem? If the nerve to your bladder is no longer functioning..ie..."dead"(which is what I was told a neurogenic bladder is), why would they think OAB meds would work? This don't make since to me. I have had multiple Urodynamic studies over these last 10 years, and NEVER once was an OAB ever mentioned! If there is no nerve function, then a drug for OAB isnt going to work. I'm not understanding there thought process with this.
I don't get an "urge" to pee, the only way I know I need to cath is that when my bladder gets full it makes my urethra spasm. Do you get the "urge" to pee?
Have they ever had you try "self cathing" to at least empty your bladder prior to going to bed? And even several times a day, to make less leakage?
I know when I went to a Uro at a Major medical facility, he told me that I would need surgery again, but to put it off as long as possible, because I was at a high risk of having to wear a bag(free flowing urine). SO I have continued self cathing for the last 10 years. I have NOT suffered ANY UTI's in that time. WHich I understand is a rare thing, BUT I think the fact I dont use any lubricant, has been the reason for that. Intionaly I did use it, but found it less work, and not painful to go without it. My insurance pays for my catheters as well.
What type of surgery were they concidering for you AFTER trying these meds?
I certiantly feel for you, and hope the doctors at the VERY least put themselves in YOUR SHOES! If It were me, I would MAKE that point to them!
I read this a few days ago and just have not felt like posting. Just after I posted this, I got a call from my pharmacy. The darn doctor had called in another medicine, and I have been on it before to boot. I have not had the courage to call them and tell them I am not taking it. In fact, I don't even think the doctor herself wrote the script. I believe it was a physician's assistant, as I have become familiar with how the doctor writes her prescriptions. IE: If the directions are to take 1 tablet/capsule two times daily, she will write it like that. This script said "Take 1-2 Tabs. every 12 hrs." For this reason, I think the PA wrote it. It should be in my records that I have taken it before, and for some reason they didn't know that. Scary, I know.
Neurogenic bladder does not mean the nerves are "dead" but I can see why you were told this. Neurogenic bladder is any type of voiding disorder caused by neurological factors, whether it be incontinence as in my case, or retention, as in yours. So while the nerves aren't "dead" they don't get the proper signals from the brain to function properly. With me, I have total urinary incontinence at night, because according to the urologist I don't get the signal that I need to urinate when sleeping. As the bladder becomes too full, I void in my sleep because I have no indication I have to go. The only reason I know it's happened is because I wake up with a wet diaper. During the day, without meds, it is pretty much the same thing. I get the indication to void, but my bladder contracts before I can get to a bathroom in time most of the time. So, essentially, the signals during the day are delayed resulting in incontinence.
During my most recent urodynamic study, the doctor saw that my urethra does not close properly when my bladder becomes full either. So, I have 2 factors that lead to incontinence during the day.
They have mentioned CISC, but only once when I have had retention issues from a medicine. Gotta love meds, don't ya? I do empty my bladder before bed, but for the reasons I mentioned, I do not have any indication that I am wetting until I wake up wet. So this has not helped much. I have even tried going to the bathroom every hour to lessen leakage, and it was still happening, so I just gave up on that. Now, I just go on with my life and let it happen if its going to, and go to the bathroom to urinate when I can.
What I don't like is that Dr's feel bad if they can't fix the problem so they keep trying things, even if they know they likely won't work. I hate that I have to wear diapers, but if it means a better quality of life without the side effects of meds, I am all for it. Any suggestions on how to talk to my urologist about this? I will still need to be under her care as I get frequent UTIs, but I want to abandon the meds for awhile. Even if it's just to give myself a mental break for the time being.
It's good to hear that "going on with your life" is what how you feel. The hard fact is there is nothing we can do to change our situations, so being positive is the only way to deal with things. Not that I dont "Fall" myself, but moving forward is the best thing we can do.
As far as how to approach your Urologist with the subject, I would talk to her the same way your telling me. "You" know, and "I" know the meds arent going to help your situation, and for that matter "they" know as well. It sounds like they are doing this to make "YOU" feel they are trying to help? I think at this point you need to let them KNOW, that "YOU KNOW" it isnt going to change the situation. A pill, is NOT going to change and anatomical problem. The fact your urethra dosent close properly is THE problem, and thats what they have to address if there is anything they can physicaly change about that. I guess I would ask them IF they can CHANGE the problem with the Urethra itself.
If Im understanding this correctly, your nerve to your bladder isnt getting the right message, so that would tell me there IS STILL SOME nerve function, but its "mis-fireing" sort of speek? Have they ever mentioned the "Interstim implant" to you? Quite honestly I dont know anything about CP and what effects it has on nerve function ect..But the Interstim implant is a "pace maker" sort of speek for the bladder, and can help the bladder with contraction. Not sure if thats something that would work for your situation, but may be worth looking into? For me, Interstim would'nt work because there has to be SOME nerve function, and Mine as I said has NONE, no contraction at all.
What is this surgery/procedure they have mentioned to you about "CISC" I dont know what that is.
One thing I have learned with all the medical issues I suffer from is that WE are the only one who can stand up for ourselves. Be Our OWN ADVOCATE, only YOU know what you go through on a daily basis, and YOU know your body better than the Doctor. Quite honestly, "GOOD" Doctors actualy respect a patient who is well informed about their conditions! It makes THEIR JOB easier! Less explaining, ect...Don't be intimidated with the "white coats", they are NO DIFFERENT then WE ARE. I think it will go a long way if you sit down with the Doctor, and simpley say,Look, I know, and you know these meds arent going to change the situation...IS there ANYTHING that can be done, to possibly improve it? That is the way, "I" would handle it, because I myself dont like the wishy washy approach, I like the no nonsence, honest, up front facts.., then I educate myself in any of their recomendations.
I dont know what kind of person you are, and you have to do what is best for you, and address this situation in a way that makes you comfortable, but dont forget, YOU diserve the BEST Medical care, and thats what you have to EXPECT. The Doctor is getting PAID for their services, its their JOB, and you need to learn to expect them to do their best by YOU. You don't have to be rude, or disrespectful, but let them know, YOU are informed, and expect THEIR best efforts, NOT for them to "put a bandaid on an open artery". Not that Im saying they can "FIX" everything, thats why its called "Practicing Medicene", sometimes it DOES take a trial and error approach, BUT they need to approach things in a realistic manor. Thats just My opinion Kelly, You need as I said to do what YOU are comfortable with.
I really wish you the best, and HOPE you DO get some answers.
Just know your NOT alone, and We are here for YOU.
Take care and GOd bless,