Jenny - I'm sorry you've so much trouble. Yes, retention may be an issue after botox, and it sounds like your doctor (hopefully a urologist) should have done a better job preparing you for this.
Why did you have the botox done? For urge incontinence? It has always worked wonders for me, keeping my dry for months.
If you are retaining urine, then you REALLY need to learn to self-cath. I know it's a pain in the bottom (literally! 
) but you don't want large amounts of urine accumulating in your bladder because it can damage the muscles (by stretching them to far) and you don't want urine backing up into your kidneys, potentially taking infection with it. Last you need is a kidney infection right now!
I have posted information on self-cathing here on IncontinenceNetwork. Use this information for reference, but follow any instructions from your doctor or nurse.
Self-cathing, even for a female, is uncomfortable. Ask your doctor to prescribe some lidocaine gel. You can use a small syringe (without the needle!) to inject some into your urethra before you insert the catheter. Ask your urology nurse to help you. Also, put some on the catheter along with surgilube. I think you will find it helps quite a bit.
You need to cath when you start to feel full. Don't wait until you are uncomfortable. The dribbling you talked about is probably overflow incontinence because your bladder is so full.
The most important point about self-cathing is cleanliness! Wash your hands thoroughly with anti-bacterial soap, wash yourself and make sure the catheter is cleaned. You can re-use them, but wash them thoroughly and let them air-dry before using them again. Some insurance plans, with proper certification from your doctor, will allow you to obtain enough catheters so you don't have to re-use them. I actually use betadine swabs when I self-cath. Also, the stinging that occurs afterwards will lessen over time.
I usually have retention for several weeks following my procedure and then my bladder slowly "comes back to life" so to speak.
As far as your other symptoms go (dry mouth and headaches) I'm not sure if botox would cause that. It never has for me. Your ankle swelling may be due to urine retention. My guess is you are on a diuretic for it, and this may be causing your dry mouth.
If self-cathing just doesn't work for you, consider asking if the doctor will put a Foley catheter in. These can be uncomfortable, but at least you don't have to keep cathing on your own. Another alternative would be a supra-pubic catheter, but doctors don't like to do this unless it's really necessary because makes a hole in your bladder. Again, this would be something to discuss with your urologist.
If you have anymore questions please feel free to ask.
Pete
Hi, reading all your comments on retention following Botox injections i am feeling awful, had one injection in March 2010 and still having to self cath 100% 15 months later. I had previously had three prolapse repairs and had a fourth three months later in June 2010. My consultant tod me of possible retention but said it would be a few weeks. Just wondering whether any of you out there are still suffering of have you been able to go toilet properly. Julia
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I underwent Botox injections on April 9th and as of this date have had to self cath ever since. My Dr. informed me that it would take 6-9 months to wear off. I had no idea that this could happen. Has it happened to anyone else 6262out there?
Botoxbarb
I just had 100 units of Botox injected 10 days ago and the same thing has happened. I did ask about side effects and was told retention was possible but at higher doses like 300 units. My doctor thought I should do 200 but I was only willing to do 100. I am completely mortified and sickened by this. I am an extremely active, busy mom and keep hoping I will wake up from this horrible nightmare. Please tell me you have improved. What dose were you given?
I'm really sorry you having this. I would think there could be retention at even 100 units. I had 200 early last spring, which wasn't enough, but still had some short-term retention. It all depends on how you and your bladder respond to the Botox. When I have 300 units, I usually have a Foley catheter for a weeks and then have to self-cath for a few more. In time your bladder function should return. Hang in there! ~Pete
Thanks for your reply. I am totally unfamiliar with catheterization but I suppose Foley is what the doctor originally wanted to do. I nearly freaked so they offered self cath which I opted for but left me with little instruction and said come back in a month. This was done at a major university and I today I am going so see a doctor I had seen before in private practice.
Most Botox practioners don't put a Foley in after Botox. They depend on showing the patient how to self-cath. In my case, because of previous surgeries, it can be difficult for me to cath. That's why she puts a Foley in a few weeks: I won't have to depend on my ability to cath to empty my bladder.
There is a fair amount of information on the Internet about self-cathing, but I would definately get help from your doctor. I have written several posts about catheterization, but have, on purpose, never included the actual procedure. I feel people should be shown how to do it by a nurse or doctor with the proper experience.
In my opinion, self-cathing, particularly for women, is better than a Foley. Foleys can be very uncomfortable. Remember, they can't be removed, so you have to sleep with it, connected to a night drainage bag. Trust me, they can be a real a pain in the bottom!!!
Yes, the Foley sounds terrible. I am sorry you have to deal with it. Good luck with trying the botox again. Even if(when) this calms down and ends up working I don't think I would do it again. Its a bummer beacause it sounded so promising and should have been the answer to my problems, but so far not.
I'm really sorry Botox did not work for you. It had been a God-send for me. Keeps me dry, and confident for months. Maybe once your bladder starts working again you will see positive results. I really hope so. ~Pete
Thank you...it's wait and see for now. I hope to God it will start to work.
BTW, where did you have this done? You said "A major university?" If you are not comfortable with telling me, that's fine. My procedures have all been done at Vanderbilt.
UCLA the alleged #1 Dept of Urology on the West and #4 in the nation... go figure
Hi-This is BotoxBarb again. It is very nice to get some response from people who are going through the same ordeal that I am. I still have to self cath after 18 months post-injection. At times I have leakage when I wait too long or during the night. Even when I stand-up after being on the couch watching TV or reading, so I am right back where I started only worse. I don't know how many units were injected, he never talked to me about that.
Now he wants to put an inter-stim device in -a wire lead is placed in your spine and attached to an electronic device that stimulates your pelvic floor muscles. Kind of like a pacemaker.Some people wear something similar for pain control. I have not agreed to that yet, because I need to do more research. Mayo Clinc and Johns Hopkins have articles about this device but what if something else goes wrong?
You are right about this being a nightmare! I feel betrayed by someone I trusted.
I should have gone to a Gyn-Urologist instead of who I went to see. He is Vice-Chairman of the Urology Dept. at a University Hospital so I thought he was a good choice. Hopefully we will both recover eventually. We need to share info about this
to others.
Barb, I'm so sorry you are still having trouble. I feel so guilty because it has worked so well for me and not for ya'll.
I have consider InterStim and my urologist knows how to do the procedure, but I probably won't as long as I have access to Botox. From what I understand, it does work to calm the urge incontinence. HealthCentral has several good articles on Sacral Neuromodulation. BTW, same as with "anonymous" would you tell me where your procedure was done? ~Pete
Wow, I can't believe it has been 18 months. That is just unthinkable. I also went to the Head of Womens Urology at UCLA who is a woman and feel like as soon as there was a problem she didn't want to deal or take responsibility. I went today to another urologist I had seen years ago in private practice and he was so much more understanding and is taking a slightly different approch. He wants me to try Flomax which is for men to help open things up again and get me off the catheter. Even if I get back to where I was before Botox (which was very frequent urination)that would be fine at this point. He does believe I was a good candidate for Botox and feels hopeful that the Botox still may work. He was optimistic, so I am goimg to try as well, but it has been so traumatic and depressing.
Pete, Can you clarify why you have to use a catheter if the Botox does work for you. I got a second opinion yesterday and the doctor believes that my situation should get better so maybe that could be the situation for me. I'm still not clear why retention would come before the Botox works. I was actually given Flomax which is for men but in women it can help for retention. I had a much better day today however the side effects are terrible. I am going to skip the Flomax tonight and hope my bladder will start to retrain and and least go back to how I was before... Which is constantly peeing
Anonymous, I apologize, I guess I wasn't very clear...
My reason for having Botox is urge incontinence that resulted from some surgery on my prostate (TURP). Without the Botox I get sudden, intense bladder contractions which I can't control. These can (usually do) result in leakage, sometimes quite a bit.
My bladder stops functioning for a period of time right after I have Botox injections. Because I'm swollen internally a bit and a "difficult cath" my doctor usually will insert a Foley for a week or two. Once it comes out then I usually have to self cath several times a day for another week or so. This means I have a Foley or self-cath for 3-4 weeks afterwards. After this time period (it does vary a bit) my bladder will start functioning again on it's own, but will void very slowly. However, this gets better as the Botox wears off. Several months later (usually 5-6) I'm back to urge incontinence again.
Does this make sense? Again, I'm so sorry for what has happened to you. Seems that your bladder is more sensitive to Botox than mine is. In time it should wear off.
Thanks for the clarification. It is still strange how the Botox works. In general, I am very sensitive to medication however I felt this was very safe especially at the lower dose. When I went for a second opinion, the doctor performed a test and confirmed my bladder is definitely not "paralyzed." Again, I am hopeful that this is an adjustment phase and then the Botox will work. I actually went about five hours today without any urge or even need which is huge for me. What's strange is I am experiencing both frequency and retention in the same day. I guess the frequency is really a symptom of retenetion because my bladder feels the need even with very small amounts of urine are present but then I'm experiencing the urge and nothing happens. I have never not been able to urinate.. Unfortunately, it's not really clear why my bladder is so sensitive thus overactive. I don't think medicine knows"why" but overactive bladder clearly is a problem.
Not trying to muddy the water, so to speak, but have you ever been evaluated for Interstitial Cystitis? I don't have it, but I do know it can cause urge incontinence. Just a thought.
Thanks for the input. It has never been mentioned and since my bladder was just scoped on Monday... checking to see if the Botoxinjections could have done any damage.It all looked normal.
Hi,
Do you mind if I ask what was the original diagnosis was before having Botox. 18 months seems like a long time to still be having to self cath. It seems the Botox should have worn off and put you back to where you were before . I definitely am worse off now than before Botox but I hope at least I go back to how I was. Unfortunately, I guess this is what happens when you are essentially a human lab rat.
Anonymous, are you asking me (Pete) or BotoxBarb?
In my case, I have had chronic UTIs for years. In 2006 I had a TURP to remove some infected prostate tissue. My urge incontinence developed as a result of this TURP.
FYI, you can create an account on IncontinenceNetwork. They don't ask any private information. The only requirement is a valid email address, but they don't share it with any other members.
Browse to www.incontinencenetwork.com (this site). In the upper right corner click "Register now." Like I said, no private information is required to participate.
Once the account is created, you can communicate directly with other members using the message system (also accessible in the upper right corner), similar to email. This would allow you to exchange private messages with BotoxBarb without having to post replys to my SharePost.
Of course, you are more than welcome to continue posting replies. Others may benefit from yours, mine, and BotoxBarb's experiences.
Just want you to be comfortable while working through your issues! ~Pete
Hi Sorry for the confusion .It was meant for BotoxBarb. You have been very helpful and kind. I will set up an account however I feel it is really important to let others know what's going on. I was not able to find any other discussion on Botox side effects out there. If I post again it will be under Karen instead of anonymous.
Karen - From the context of your question, I figured it was meant for BotoxBarb. However, I didn't want to leave you hanging.
Have you thought about making this a real SharePost? It would get much more visibility that way. Might get more people with similar problems responding. It's easy to do.
These replies to my original SharePost are kind of "buried" if you know what I mean.
Also, there are other resources (read: other websites) that have discussed this issue. I will dig them up and forward them. I've found even small bits of knowlege can help!
Good luck, and if there is anything else you want to know, just ask! ~Pete
Could you please tell me what your original diagnosis is and what is going on now 18 months later that you still need to self cath. I can't believe that when the Botox wore off the symptoms didn't go away. I originally posted under anonymous and am just trying to figure out what is going on. This is so devastating. I have been virtually house bound for three weeks and the reality has just hit that I am going to have to cancel a very expensive trip planned for my anniversary and birthday. I am supposed to leave two weeks from today and don't see how that will be possible.
Karen - I hope this is okay, but I sent a message to BotoxBarb indicating you had some questions for her. I'm sorry you are still having problems. I will keep you in my prayers. ~Pete
Hi Karen- My original diagnosos was urge incontinence, but being a nurse I have concluded that there was another factor involved that was a plain and simple anatomical problem (pelvic prolapse). However my Dr. said the Botox would help so I trusted him. By the way I had this done at UC-Davis in Sacramento.
No matter-the damage has been done . Actually I have gotten past the anger phase and I 'm more comfortable with my situation. I don't have UTI's any more. They were making me very sick each time one came along. Now that my bladder is completly emptied each time I cath, there isn't any old urine sitting in there cooking up an infection.
As for your travel plans, please do not cancel your trip. I felt the same way for the first six months. How can I go anywhere, what will I do in an airplane restroom and on and on. Sheer panic! At first I ordered the small catheter insertion kit and the short 12FR catheters and kept a supply of them in a tote bag. When needed I would find a restroom, hang the bag from a hook or handle and work out of the bag. I carried a package of anti-bacterial wipes for my hands also. Several small plastic bags, like sandwich bags come in handy.
Now I make my own kits. I use the blue plastic freezer bags, I leave the catheter in the original wrapper and cut off about six inches and put piece of tape across the open end. I purchase lubricant in the individual packs. It is much easier for me to insert the catheter if I am standing over the toilet. Also there is less chance of contamination. Make sure the catheter is pointing straight down, sometimes they will curve from being in the bag.
Either method would work for you on your trip I think. You just have to figure out how many to take with you, plus cleansing wipes and lubricant. Just because I have this fgured out dosn't mean I like it. I will still continue to find a way to fix this. Hope this may help you somehow. Good luck. BOTOXBARB
Karen - I agree with BotoxBarb's sentiment: Don't let this keep you down. We have all learned how to manage this and I have faith that you can too.
I myself have had to travel with catheter supplies. It's not fun, but the alternative is to stay at home. Means you miss out on a lot.
We are all here for you!
BotoxBarb- Thanks for getting back to me. I do realize somehow I will manage if I have to. Just the fact of going away so soon is what scares me. If it were six months from now I'd think I would be ok. Ironically, I did this with what I thought was well in advance of my trip so I would not have to worry about complications( the worst I thought being UTI) and thought I would happily reap the benefits of a long plane ride without having to get up all the time. I certainly wasn't expecting this. Anyway I am going to wait until Monday to make my final decision.
I had another doctor appt. today (not at UCLA) and the doctor really thinks I will be ok. I am really back where I began just with retention now. I feel the urge with very small amounts in my bladder however my bladder does have adequate capacity so he says the retention doesn't really make sense. Unfortunately, I think much of medicine is just a guessing game.
I also believe if Botox becomes FDA approved there will be many more cases of retention reported. I read one article that said studies were flat out stopped because of retention and another study where patients are sent home with catheters after the procedure.
Having been a former pharmaceutical sales rep I know that companies lie, twist words and avoid publishing side effects and adverse reactions as long as they can. It's truly one of the most corrupt industries in my opinion.
Pete,
Thanks for all your info and insight... It has been very helpful.
Karen
Karen, I have to agree with you about medicine being a "guessing game." Also, when people like us have sort developed chronic problems, no one wants to deal with it. Just like BotoxBarb, your problems were exacerbated by the very people that you went to for help! And now that you have developed these issues, they don't know what to do with you, and so don't want to do anything.
I'm in the same situation with chronic UTIs. No one caused this (it started about 6 years ago) but no one wants to deal with. All I want is help when I get one. I've given up on wanting to know why they happen. My primary care physician wants to defer to my urologist at Vanderbilt, but she doesn't know what to do. The department I deal with is Urologic Surgery, and I guess they are not prepared to deal with chronic infections, only to deal with procedure induced infection, which can be cured with a few days of antibiotics. In the past I've known that I have had one, sent them an message indicating this, and had them respond that I don't! Without any sort of test! Guess they use mirrors...
As I've stated before, I'm sorry Botox did not work you and BotoxBarb. It definitely worked for me, but I know everyone is different.
Good luck, and I hope you do take your trip! I think you will find having to cath while traveling is not as bad as it sounds! And I'm a "difficult cath!" Take care, ~Pete
Hi Pete,
I'm probably driving you crazy by now, but when do you know you can stop self - cathing? I have just gone over 24 hours without having to cath. I am having frequency but not really urgency. I would love to be able to get off the catheter. I am able to go on my own and have held out when necessary. I know you said after about four weeks you are ok. I am wondering if this could possibly be the same situation. I don't want to be too hopeful but I think it's definitely a positive sign. Thanks again for all your thoughts!
Karen
Hi Karen! Looks like things are improving for you! I'm really glad!
If you are voiding on your own, and pretty much emptying your bladder when do, then I would think you could stop.
The "four weeks" I mentioned is typical for me after I've had a "full" round of Botox (300 units.) I had only 150 units last February and so Foley only stayed a week, and I had to self cath for another week or so. In that situation, 150 units was not enough, so I was fortunate to have another 300 a few months later. I guess what I'm trying to say is the "cathing period" will vary from person to person, and even for the same person, depending on the amount of Botox and how their body responds to it.
Short answer is I would think you could stop now. There are risks associated with self-cathing. The main one, of course, is potentially inducing a bladder infection.
Have you decided on your trip? I really hope you will go! And no, you are not driving me crazy. I'm glad sharing my experiences has helped. It's what we are here for!
~Pete
Well it's been almost one week and I am voiding normally! I still have frequency but back to where I was pre Botox which at this point is a godsend. I have accesssed some studies from pubmed and a very recent study shows 42% retention post Botox in patients. Patients should most definitely be aware of this very scary side effect before considering Botox.
Karen
Botox Barb
I wish I had read these comments before I did the procedure. My problem was "freguency." Sometimes every hour. I'm now 2 months post-procedure and I'm still self-cathing. My urologist keeps saying it is temporary and will go away. None of her patients have had this problem for so long. She won't define "temporary." To make matters worse, my frequency problem is worse. Having to self-cath limits what I can do outside of staying in the house. This is very depressing. Someone said 18 months? I can't imagine what that period would do to me.
Jerry
Ive had botox injections for incontinence,following a bladder prolapse ,THAT DIDNT GO TO plan! and ben incotinet since I had the botox a month ago now ,and i am suffering. with a_: with dry mouth constant,urine retention headaches swollen ankles.I wn self catheters by the incont' nurse prior my op,and tols to practice but i prob nevr ned to use them..Now following Botox injection/bladder treatment I have and burning in bladder and agony trying to pee it just trickles out,i was given small self catheters just incase .I went back to hospital,the urogyne nurses scanned me,and after two pees i was still retaining 50perent of urine .she told me to self catheterize for 3weeks and come back for check up,meantime ive bad burning in bladder dry mouth as if in a desert; also bad headaches when i was considering this botox treatment wasNT TOLD THAT ID HAVE TO SELF CATHTERIZE EVRY DAY BECAUSE i cant pee out hardly at all,.and now my ankles are swelling big time. i ASKED nurses as 2weeks post op could i see consultant,she saId no not usual unless you need more botox.PERSONALLY I WUDNT GIVE THIS TREATMENT TO MY DOG,LET ALONE A HUMAN!!!!THEY MENTIONED ONCE I MAY GO INTO RETENTION,BUT NO ONE SED IT WOULD BE A twice DAILY OCCURANCE.HOW LONG WILL THIS LAST?I AM NOT A HAPPY BUNNY, AS YOU CAN TELL AND NO WAY WOULD I EVER HAVE BOTOX IN MY BODY AGAIN,BECAUSE, APART FROM FELING SO ILL, A.M I CANT PEE AT ALL AND P.M I LEAK.SO NOW I HAVE THREE PROBLEMS AS APPOSED TO ONE.
GOOD LUCK TO ALL WHO TRY,WHO KNOWS IT JUST MAY WORK FOR YOU,
ALL IVE FELT IS VERY ILL SINCE AND DOCTORS ALL THEY SAY IS I DONT KNOW ENOUGH ABOUT BOTOX TREATMENT/SIDE EFFECTS ,GO I ASK NURSES AT HOSPITAL, I PHONED THEM AND THEY SAY THEY DONT KNOW EITHER,ENOGH ABT BOTAX SIDE EFFECTS AND SEAD THAT MY CONSULTANTS IN SURGERY ALL DAY,AND SUGGESTED TRYING THE N.H.S DIRECT,AS IF THEYD KNOW,IF DOCS DONT!LEFT TO SUFFER FOR TWO WEEKS COZ NO ONE KNOWS ENOUGH ABT THIS TREATMENTS/SIDE EFFECTS THEN BANK HOLS,CAME COULDNT GET APPOINTMENT,POST OP, I FINNALLY GET,AN OUT PATIENT APPOINTMENT ,UROGYNE,AND A TELLING OFF FOR NOT SELF CATHETERISING MYSELF DAILY,WHEN IN CHRONIC RETENTION!!!! AFER TWO WEEKS OF TRICKLING URINE ONLY,hOW THE HELL WAS I TO KNOW,WHAT TO DO,OR IF WAS SIDE AFFECT OR SOMETHING ELSE WHEN MY G,P DIDNT KNOW EITHER.! AND WHEN TOLD TO PHONE BY NURSE AT SURGERY i WAS PASSED FROM PILLAR TO POST.ONCE YOU HAVE BOTOX SEEMS YR LEFT TO ONE OWN DEVICES WHICH I FEEL IS DANGEROUS,AND ITS ALL OUR FAULT APPARENTLY.FOR BEING MISS INFORMED!!!!ID DIE BEFOR I HAD ANYMORE BOTX BLADDER INJECTIONS AND NEARLY HAVE DONE !!!!!!!
Jenny - I'm sorry you've so much trouble. Yes, retention may be an issue after botox, and it sounds like your doctor (hopefully a urologist) should have done a better job preparing you for this.
Why did you have the botox done? For urge incontinence? It has always worked wonders for me, keeping my dry for months.
If you are retaining urine, then you REALLY need to learn to self-cath. I know it's a pain in the bottom (literally!
) but you don't want large amounts of urine accumulating in your bladder because it can damage the muscles (by stretching them to far) and you don't want urine backing up into your kidneys, potentially taking infection with it. Last you need is a kidney infection right now!
I have posted information on self-cathing here on IncontinenceNetwork. Use this information for reference, but follow any instructions from your doctor or nurse.
Self-cathing, even for a female, is uncomfortable. Ask your doctor to prescribe some lidocaine gel. You can use a small syringe (without the needle!) to inject some into your urethra before you insert the catheter. Ask your urology nurse to help you. Also, put some on the catheter along with surgilube. I think you will find it helps quite a bit.
You need to cath when you start to feel full. Don't wait until you are uncomfortable. The dribbling you talked about is probably overflow incontinence because your bladder is so full.
The most important point about self-cathing is cleanliness! Wash your hands thoroughly with anti-bacterial soap, wash yourself and make sure the catheter is cleaned. You can re-use them, but wash them thoroughly and let them air-dry before using them again. Some insurance plans, with proper certification from your doctor, will allow you to obtain enough catheters so you don't have to re-use them. I actually use betadine swabs when I self-cath. Also, the stinging that occurs afterwards will lessen over time.
I usually have retention for several weeks following my procedure and then my bladder slowly "comes back to life" so to speak.
As far as your other symptoms go (dry mouth and headaches) I'm not sure if botox would cause that. It never has for me. Your ankle swelling may be due to urine retention. My guess is you are on a diuretic for it, and this may be causing your dry mouth.
If self-cathing just doesn't work for you, consider asking if the doctor will put a Foley catheter in. These can be uncomfortable, but at least you don't have to keep cathing on your own. Another alternative would be a supra-pubic catheter, but doctors don't like to do this unless it's really necessary because makes a hole in your bladder. Again, this would be something to discuss with your urologist.
If you have anymore questions please feel free to ask.
Pete
HI BOTEX BARB
TUESDAY 7th JUNE 2011
JUST WONDERING HOW YOU ARE NOW ? I HAD A BOTOX INJECTION IN MARCH 2010 AND WENT INTO RETENTION 2 DAYS LATER. I HAVE BEEN SELF CATHING FOR 15 MONTHS 100%. I WAS TOLD THIS COULD HAPPEN BU IT WOULD ONLY BE FOR A WHILE. PLEASE TELL ME YORS IS BACK TO NORMAL. JULIA