Fixes for OAB??: I’ve been having a terrible time... - AMN EASIER

AMN EASIER

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Fixes for OAB??

jolocny profile image
jolocnyVolunteer
13 Replies

I’ve been having a terrible time with OAB. My urologist has suggested some treatments and I’d like to know what experiences people here may have had? Two of the least invasive are Botox and Interstim. I’d like to know if anyone has had these done and their experiences with them?

The doctor has said there might be need for catheterizing after Botox ? Is there any pain with the injection? How long did it last for you? Any problems with voiding after a while? Any other things you can share about it?

I haven’t heard much about the Interstim ... size of a pacemaker? Is there pain involved? How much does it protrude? If the doc gets it right the first time and connects to the correct nerve - what then? Is catheterizing necessary at all? Is there much pain besides the surgery? How does it work after the placement of the Interstim? Again, anything else you can share?

Thanks to everyone and anyone who can share their experiences!

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jolocny
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13 Replies
StevenSims profile image
StevenSims

Hi,

I’ve had Botox injections for the past 8 years and the problem with that is you won’t be able to go without a catheter! Awkward when your out without one!

Because of the pandemic I was unable to have it done this year so I thought I’d try Mirabegron / Myrbetriq and it works brilliant! I recommend trying it as it definitely relaxes the bladder! It took about 2 weeks to work though!

All the best

Steve

jolocny profile image
jolocnyVolunteer in reply toStevenSims

Another choice for me is to self cath , which I’ve done but it wouldn’t be easy to do at work. Although it may be where I end up!

tieaknot profile image
tieaknot

Hi! I have gotten 3 or 4 rounds of Botox now for my bladder and have NEVER needed to cath. My urogyn does them in her office and it takes about 15 min. (I know different docs do it differently).

First they use a numbing gel via a catheter to make things more comfortable. Then the shots are done via cystoscope and can be uncomfortable (a pinchy feeling in the bladder, but it’s really not that bad or I wouldn’t go back every 3 months! (Haven’t been able to go due to Covid with the office closed).

I find it starts working within a few days, reaches max effectiveness in about 2-3 weeks and for me, lasts a few months and I can feel it start wearing off in my 3rd month. Apparently it usually lasts longer for people. (My migrajne Botox doesn’t last too long either so maybe I’m a fast metabolizer or something).

I was so worried about having to self cath, but it never happened. And now I’m even willing to do that if need be in the future if it continues to help. Sometimes I have to sit a bit longer on the toilet, but that’s all. They can start with a lower dose the first time to see how you respond. I think I just got 100 or 150 units the first time. Then up to 200. Last time it was 200 and deeper in the muscle to see if we could make it last longer. I still get the urgency and I still wear a pad or liner because for me, it’s not 100% , especially after coffee or beer, but it helps me hold it longer and if I do have an accident it’s not a gusher!

Sorry TMI lol

I’d give it a shot (yes, pun intended). It’s completely reversible with time...

My doc has mentioned the interatim but I never gave it much thought because I have so many issues where I need MRIs (most not AMN related) that having anything implanted is a no-go for me.

Let us know how it goes for you, whatever you choose!

Oh and the mibergeron (Myrbtriq) was the only medicine that was helpful for me but my insurance wouldn’t cover it 🤦‍♀️. But yes like Steve said it took weeks to start working. Thanks for the reminder...I might try to get that covered again!

jolocny profile image
jolocnyVolunteer in reply totieaknot

Thanks SO much for all the details! It isn’t TMI for me ... I appreciate the candid response. My insurance hadn’t covered the external stimulation and I have to call the Urologists main office to find out if this is covered. It sure seems, if I respond the same way, that this would be a godsend for me! Thanks again!

I hope more respond to this...

nan17 profile image
nan17 in reply tojolocny

Hi, I used Myrbetriq for about a year successfully, and then got one of its side effects, dizziness, so I had to stop. That might work for you. I am supersensitive to most medications. Best wishes.

jolocny profile image
jolocnyVolunteer in reply tonan17

I’m also med sensitive, besides all of my current meds say they cause dizziness! Lol!! Doc won’t try any more meds, I’ve been through them all. That’s why I need opinions on the procedures. Thanks anyway!

SongStream profile image
SongStream

I've been on Myrbetriq for about a year and at first, it worked. But I have noticed that it is not quite as effective and that is after upping the dosage: about every 2 hours at night that my Fitbit is unable to record my sleep patterns at times. I've been wondering if Myrbetriq eventually loses its effectiveness which is why your post is so timely. Anyone else had this has happened because I may need look into alternatives, too. (Didn't mean to hijack your post, Jolocny)

jolocny profile image
jolocnyVolunteer in reply toSongStream

No problem! Good luck!

Aaron98 profile image
Aaron98 in reply toSongStream

I have been on Myrbetriq for 3.5 years. It works well for me, but it isn't perfect. I also have times when I feel it is losing its effectiveness, but then I remember how miserable life was before I starting taking it. Sometimes I wonder if I should just stop taking it for two weeks to "wash out" my system, and then begin taking it again. Has anyone done this?

SongStream profile image
SongStream in reply toAaron98

Interesting. My Fitbit is driving me crazy because sleep is important to our health and lack of it is related to disease. That said, 5 times up last night is better than before. I have pee envy : )

COwithAMN profile image
COwithAMNAdministratorAMN EASIERVolunteer in reply toAaron98

Sorry to hear that it seems to be wearing off, Aaron98. I have been on Mirabegron (Myrbetriq) for years and it seems to extend bladder capacity a lot. My capacity can be up to 800 ml - it varies. For night time, what really helps is to self-catherise last thing at night. Then you have a lot of capacity for the night shift. Have you tried this also, SongStream? (Sorry also Jolocny for more highjacking - hope you get good news soon)

jolocny profile image
jolocnyVolunteer in reply toCOwithAMN

No problem, Chris!!

jolocny profile image
jolocnyVolunteer

Thanks everybody!

The docs office is trying to get authorization from the insurances now. Nothing's covered yet! I hoped to try the least invasive first (Botox) and move my way to surgery (hopefully years away!) Doc doesn't want to back pedal and go through the meds at this point - I did ask him if he'd consider that.

Honestly, I'd try just about anything at this point. I have days I change clothes 3 times. Ugh.

Wishes for happiness & good health to you all!

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