Do You Have POTS and Bladder Function Issues?

Ouch! Hope that she will agree. Sorry you found out about your allergy in such a painful way.

I am allergic to the plastic catathers so they have to put the metal one in me for surgery and u can't leave that in. So the day I need one in longer then a quick empty I will be upset. I got a bad infection from the plastic catheter once out it gave me a uti and bv and I only had it in for a surgery. I also had extreme burning to pee and burning down below and pain in general it hurt really bad. I found out I have a allergy to silicone from all that. I want top surgery and the top surgeon uses drains that has silicone in them but then comes out. So I still don't know yet if I want to try it since it's not going in my junk below lol. When I see this surgeon tho I'll tell her if she doesn't use a metal catather then I won't do the surgery for sure.

I didn't retain before it got put in. My urologist said that since I had failed anything he gave me for ic, the last option was the stimulator. Luckily it worked. But, I did have to have a Foley twice for 2 weeks (couldn't self-cath). Both times I got kidney infections and wound up in the hospital. I've always had a hard time finding meds for any condition that work. With my schizoaffective, I wad on three antipsychoytice and told never to allow another doctor to change them because they were saving my life.

I forgot the brand but it's a new updated one. She said she would not put one in a person who retains any urine and I don't so that's good. Also all those bladder meds hurt my heart because of my pots so I can't take any bladder meds. I was told this bladder stim thing won't help my ic and I still need to avoid ic trigger foods

@jazz1987, which brand are getting put in? My new urologist said she doesn't promote Interstim because they use old technology. My old one didn't really say there was any other option.

Mine doesn't, unfortunately. But honestly it was put in for pain from interstitial cystitis, and has helped there. My doctors get so confused because I go pee a ton, but still retain urine. So I am on Flomax and Myrbetriq, which should counteract. I'm also on bethanachol, which is used for either bladder or stomach. I use it for gastroparesis.

I get mine installed in May 💕

So does the stimulator actually help you to not have to pee all the time??

Oh ok kidney disease is a lot harder to treat I'm sorry. ❤️

I have both! Didn't make a connection. I have a bladder stimulator (Interstim). I will be switching to Axonics next year, as it lasts a lot longer without needed a new battery (I have to go next year for a new battery, so switching devices, and mine was put in in 2020). I would much rather 15 years without surgery. Plus it is supposed to be in a better place, so the implant doesn't get hit as often, causing pain. I have an older mod, which doesn't allow MRIs except on brain, and even then only with certain criteria met. The new Interstim allows MRIs, but only 1 hr at a time (if you need a longer one then the mri machine had to be turned off for an hr so that the device doesn't burn you) Axonics supposedly has better technology. Even with the stimulator I can be dehydrated and still have to pee every hr. My heart rate goes into the 130s standing even with treatment of propranolol er 60 mg twice a day. Since my liver is getting bad, and I have kidney disease no doctor wants to up any medication anymore, except psych.

They implant some special wires that tell the nerves around the bladder to calm down. It works by a rechargeable battery put into a butt check small area. My battery will be rechargeable so I will sit on a wireless charging pad for about 30 mins once a week to recharge it. I can turn it off with a app on my phone and adjust the settings as well. I can still get a mri etc

Oh wow, how does that work?

I pee way too often. Have been in pelvic pt and now I'm getting a bladder stimulator implanted in my butt in May because none of the meds worked for me for overactive bladder.

I don’t have any form of EDS so I can’t say it’s from that for me. Just frustrating that I have to pee literally all the time and can’t do anything about it😖

Same! I’ve been chalking it up to muscle dystonia/laxity from EhDS, but 🤔🤔🤔

Glad I’m not the only one😅 I can’t figure out how to make it less of a problem🤦🏻‍♀️

I also have both 🙃