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Anika

822d

Anyone else with POTS have bladder function issues? I swear I have to pee ALL the time, regardless of drinking a lot of liquids or not. Does anyone else have this problem? Any suggestions on how to help it?

Top reply
    • Eeyorehasaheart

      822d

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

    • Eeyorehasaheart

      822d

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

    • jazz1987

      822d

      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.

    • Eeyorehasaheart

      822d

      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.

    • jazz1987

      822d

      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

    • Eeyorehasaheart

      822d

      @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.

    • Eeyorehasaheart

      822d

      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.

    • jazz1987

      822d

      I get mine installed in May 💕

    • Anika

      822d

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

    • jazz1987

      822d

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

    • Eeyorehasaheart

      822d

      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.

    • jazz1987

      822d

      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

    • Anika

      822d

      Oh wow, how does that work?

    • jazz1987

      822d

      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.

    • Anika

      822d

      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😖

    • SuccinctAbilities

      822d

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

    • Anika

      822d

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

    • acrowlookedatme

      822d

      I also have both 🙃

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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