Overactive bladder
Posted , 7 users are following.
I've had an overactive bladder for years, along with a prolapse bladder. I've tried everything.....meds, biofeedback, etc, etc. Had my urethra stretched a few years ago and this helped for a while. Just had a 12 week PTNS treatment and I was doing pretty well. After the 12 weeks Dr put me on a maintenance program where I go once a month. Well, I do have some good days, but most days I feel like I have to go constantly. It really gets to me.Dr suggested Botox, which I really don't want to do. Watch my diet, no spicy foods, no caffeine, etc etc.Dr doesn't want to do surgery. Has anyone had any success with other things and can offer me any suggestions. Thank you.
0 likes, 56 replies
trudilu ann_marie93564
Posted
I said I would keep you up to date on my PTNS "tens" treatment and it's not looking good. I plan to finish it, but I'm beginning to feel more & more skeptical!
This week was the 6th treatment, and the time where one is supposed to notice some improvement but I've had none so I have 6 more to go because I'm out of options at this point.
How do Drs. expect people to live this way? I'm very depressed right now.....so I'll write later.
ann_marie93564 trudilu
Posted
I didnt notice any improvement until maybe my 8th treatment. So dont give up. I know how you must feel. I still have good and bad days. Some days I'm fine and other days have to pee constantly. When we go away I'm much better, probably because I'm relaxed and off my feet more. One thing it has really helped is my sleep. Used to get up 4 or 5 times, Now I only get up twice.
A friend of mine is having botox where they inject something right into your bladder. She's in a lot of pain. She has to go for 6 weeks. Do you have a prolapsed bladder. A pessiary helps that. My Dr also told me about bulking. Don't really know what that is but you could ask your Dr
Sorry you are depressed. It's terrible what women have to go through . Hang in there and certainly hope things get a little better for you
ann_marie93564 trudilu
Posted
Havent heard from you i awhile and wondering how our doing. Have you finished the 12 weeks of PTNS and has it worked at all. I still have good and bad days. Some days it feels like I always have to go. Went to the gyn this weeek for my maintenance treatment and then the dr cleaned my pessiary. Since then I feel like I always have to go. Afraid if I take the pessiary out it will only get worse. I have a bad cold too, so maybe this is adding to my problem. Im better if I stay off my feet. We were on a 2 week cruise and I was fine. Coming off the ship I pulled a heavy suitcase and I think this is the reason Ive had this condtant feeling. Stayed off my feet all day yesterday so will see what happens.
A friend of mine who had the same treatment as I did, didnt have any success with it. She's not considering Botox, but is afraid to try it. Hope they come up with a miracle drug soon.
Just wondered how you are doing????
trudilu ann_marie93564
Posted
You read my mind. I was going to write everyone today!!! Because my hopes seemed to have gone down the drain.
About the 8th 'tens' treatment, there were nights that 4 whole hours went by before I had to get up to go to the bathroom. I was so happy and really thought this might be working. I have had other good days as well.
Wednesday was my 11th treatment. That night and last were the most awful nights that I can remember; I was up about 10X during each night and into the morning. I had a hard time getting up at noon because I felt exhausted (still do). So, I think doing the last tens treatment will just be a waste of time.
Now I don't know what to do. What I do know is that I can't live like this. I think you might know what I mean. I love to get a good night's sleep and it's impossible with this whatever it is.
I just left a message to the person who has been doing the tests and we both were very hopeful but I was in tears when I left her the message after these past 2 nights. I really pinned my hopes on this procedure and perhaps 5 good nights made me believe it might be working and I was encouraged to finish thinking I'd be one of the Lucky ones.
So, today I'm miserable. I also woke up with everything 'aching' (I don't know if that's related or not) but I don't want to live this way. There must be a way to treat this.
I hope I have not brought you down and hope you are doing a lot better than I am.
Trudi
ann_marie93564 trudilu
Posted
I'm so sorry to hear this. Have you talked to your Dr about other possible treatments. A friend of mine has been miserable just like you and she's going to do botox.I'm doing pretty good, but I feel for you. Perhaps you should go for another opinion.Don't know where you live, but I would consider going someplace like the mayo clinic. Also, are there any urogynecologists you could see. Don't give up....explore all possibilities. My thoughts and prayers are with you that you can find a solution. Let me know how your doing.
trudilu ann_marie93564
Posted
I will be talking to my Dr who is very supportive of my needs. These past 2 days just happened so just left a message that I will NOT be going to my 12th tens treatment - why?
I would be afraid to do Botox (except it it works!). I'm going to be talking to my PCP sometime today. I live In San Franciso, which has some of the greatest hospitals and research facilities so there ought to be someone who can take this more seriously. If you don't have it you can't possibly understand how it affect your life. I'll ask my Dr. If there are any urogynecologists I can see. I have not had a gynecological exam in quite a while although nothing feels swollen inside.
Please give me any information that you can come up with. I felt so bad locking my cat outside of my bedroom just to TRY and get some sleep.
ann_marie93564 trudilu
Posted
I, too would be hesitant about getting botox although I heard my Dr say it has worked on many. Do some research.
Good luck.
trudilu ann_marie93564
Posted
The urologist performed many tests to rule out anything serious, etc. and found nothing to be alarmed about. I wish he DID find something so that maybe someone would know how to treat this because I'm at the point of jumping off some rooftop. I haven't had a gynecological exam in a long time. But I will ask my PCP for a referral who is always very supportive.
If Botox reallly works, I'd consider it over this - although it scares me to put a poisonous substance in my body! Today I woke up tired and all achy too. I feel like I'm dying.
ann_marie93564 trudilu
Posted
trudilu ann_marie93564
Posted
This is exactly what I plant to do! I have to do something.....
I'm the one at fault for refusing a gyne exam. The last time I had one, it was very painful for some reason; I think it was because my Cervix had tightened or at least that's what she said. Those antiquated instruments..anyway ever since that exam, I have evaded going to a gynecologist and because I thought I did not have any problems in that area, I just haven't gone.
I did not associate a urology problem with a a gyno problem, but maybe there is? Something has to be putting pressure on my bladder that the urologist could not see!
ann_marie93564 trudilu
Posted
trudilu ann_marie93564
Posted
My last PTNS treatment was yesterday after which I met my new urologist for now. I told him that I had pinned high hopes on this treatment and for a few days it seemed to have been working but it just went back to when it first began.
So my question to him was now what? I can't live this way. The first thing he wanted me to do was something I wanted to do from the beginning and I was told it was not necessary. That is, measure the quantity and time on a variety of days/nights, to see if that's normal or if my bladder is producing too much urine.
The reason for this is because I remember someone here considering trying botox, so I brought it up. He said, yes that's a possibility and he told me how it works and what it involved (which sounded a bit scary to me). But first, he needed to know the intervals and amount of urine that I void during the night for several nights and show him in 2 weeks. Only then would he know if I might be a candidate for Botox.
He said that I would be anesthesized and what the botox does is paralyze the bladder muscles from feeling the urge to urinate until such time the bladder is full. He also talked of catheters but I don't want a catheter in me. I also brought up seeing a gynecology urologist - and he said that can be arranged...so I'll know more in 2 weeks.
I started measuring as of 6PM last night, through the night until morning (12 hours). I get between 1-3 hours during the night, and I void just about 4 oz each time. Don't know what that means......
ann_marie93564 trudilu
Posted
How do you measure the amount of urine you produce and do you only do this at night? I never heard of this before. Did you ask if you have IC? My one friend has this and is so uncomfortable. She is now trying acupuncture to get some relief.
I'm so glad you are following up on this. Sounds like a good Dr
Good luck and let me know how you make out.
trudilu
Posted
Hi, I was furious and upset over the urologist's comments after he went over my meausuring of urine over the past 2 weeks. He is underestimating or not taking seriously the problem - ie. He said well it looks like you get up 3-4X night with a reasonable amount of urine being void! I did NOT see him personally as he had emergency surgery so he just looked it over.
I said to him, what are you talking about??? I wake up 6X during the night voiding 4 oz of urine (don't know how normal that is) and he said, well I don't count the late night and morning. Huh? And what about the day. I'm constantly looking for a bathroom during the day and it's driving me crazy. So when he underplayed MY problem, I finally said, I don't care what you think might be reasonable, I can't live with this!
He responded by saying we'll talk about other options, medications, etc. when I see you in 2 weeks. I don't even know if I want to see him given the way he calculated the measurements. If I made a record of both day AND night, it would be about 20x/day...sometimes every hour, sometimes, every 15 minutes. Occasionally I have a good night (i.e. 3X during the night) and I'm so grateful.
And - all I have is one ice coffee in the AM and nothing more. And I feel so horrible when I wake up; very tired...in fact I asked my Dr. For a note to be excused from jury duty only because I find it SO difficult to wake up so early in the AM because of disturbed sleep. It's screwing with my whole life.
I've read about Botox being injected into the bladder, and it sounds a little scary to me. The potential risks sound worse than the problem. I'm hoping it will just go away.
ann_marie93564 trudilu
Posted
I don't blame you for being upset.Don't even know what to tell you.Don't know if I would consider botox either. Can't imagine living like this. Hope you get some relief soon. Prayers coming your way.My friend has I.C. and just started botox. I hear my gyn recommending this to her patients. Just keep talking to people. Maybe something new will come along.
trudilu ann_marie93564
Posted
Could you ask your friend how she is doing on the botox? Does she have any adverse side effects? And I know there is an option for seeing a gyne-urologist (or something like that); I see my PCP next week so maybe I'll ask him if I can have an appointment with one. Any Dr. who underplays what I'm going through - I just don't know.
I can't wait for something to come along. I have to be proactive as it has been long enough and I think I've reached my limit. I am a slave to the bathroom