1. < Bladder Conditions
Profile picture for Kelly, Moderator
Moderator

Bladder conditions support: Introduce yourself and connect

Posted by Kelly, Moderator @klp, Sep 26 4:08pm

Welcome to the bladder conditions support group on Mayo Clinic Connect.

This is a welcoming, safe place for anyone living with a bladder condition, like cystitis, UTIs, overactive bladder, interstitial cystitis or overactive bladder. You’re invited to share your experiences, ask questions big or small, and offer encouragement to others walking a similar path.

Please take these steps to participate in the group:
- Follow the group.
- Browse the topics.
- Use the group search to find answers to your questions.
- Introduce yourself.

No matter where you are in your journey — newly diagnosed, managing symptoms for years, or supporting a loved one — you’re invited to join the conversation and connect with others.

Let’s chat. Why not start by introducing yourself? What is your experience, or your loved one’s experience, living with a bladder condition? (i.e., what condition, how it’s managed)?

Do you have a question to ask or a story to share?

Interested in more discussions like this? Go to the Bladder Conditions Support Group.

Profile picture for loriballesteros
loriballesteros | @loriballesteros | Oct 5 7:34am

Please excuse typos the microphone is not perfect

REPLY
Profile picture for Dolly Jane
Dolly Jane | @dollyjaneprenzel | Oct 5 2:49pm
In reply to @rex321 "Hello! I just joined the group to learn about others' experiences with bladder issues. I've been..." + (show)
Profile picture for rex321 @rex321

Hello! I just joined the group to learn about others' experiences with bladder issues. I've been "through the wringer" in recent years dealing first with an enlarged prostate and now OAB. Neither a Urolift procedure or the TURP helped in any way. And it seems I've tried 6-8 various meds without any success. After several years of frustration my urologist diagnosed OAB, but again, the meds for that have not made a difference.

I was also given the Interstim test about two years ago, whereby the wires are on the surface of the skin. In that case only one "lead" reached the proper location and the procedure was deemed a failure as well.

I currently have to urinate about 8-10 times a day and usually get up four times a night. At this point I am somewhere beyond frustrated, as one might imagine. Would very much appreciate any tips or hopeful info about new and effective meds or other treatments ... especially from anyone with similar experiences. Thanks one and all and best regards!

Rex321

Jump to this post

@rex321
Wow, you have certainly been and are being tortured with this problem. I have OAB too, but nothing like that. If you can get to a university teaching hospital for help, that would be your best bet.
I have the InterSTIM device but the battery stopped charging after a year. From what I have read, that is unusual. So sorry for all you’ve gone through. Dolly

REPLY
Profile picture for rainyday541
rainyday541 | @rainyday541 | Oct 6 9:32am
In reply to @loriballesteros "I am brand new to this group and have been really suffering with I see and..." + (show)
Profile picture for loriballesteros @loriballesteros

I am brand new to this group and have been really suffering with I see and frustrated because there’s not much that can be done for me. I will not allow any type of invasive procedures like stretching of my bladder. I really don’t know what to do and I’m interested in how other people handle this. I have modified my diet. I have done everything I’m supposed to do. I try very hard to alleviate my stress and now I have to have a very certain MRI that has to be done with contrast die and I am concerned that it will irritate my bladder. Has anyone had abdominal contrast die used during an MRI which aggravated their bladder and gain pain? Thank you.

Jump to this post

@loriballesteros I have had CT Urogram with dye and without. I have had not problems with the bladder being aggravated. After you have the dye, they tell you to drink lots to flush that out of your body. Last time I had a CT, I was given water before the procedure began.

REPLY
Profile picture for kmb24
kmb24 | @kmb24 | Oct 25 8:17pm

I am just starting the journey with underactive bladder. Use catheter three times a day. Last year I had one UTI after another, never ending. Have been on cefdinir for 6 months now. No UTI but now other issues like itchy skin, itchy pubic area, dizzy and light headed, pelvic pain.
Not sure which direction to turn to. I am exhausted with worry. Any suggestions?

REPLY
1 reply
Profile picture for rainyday541
rainyday541 | @rainyday541 | Oct 26 3:53pm
In reply to @dollyjaneprenzel "@rainyday541 - I have Interstim now. Unfortunately the device stopped functioning after four years and my..." + (show)
Profile picture for Dolly Jane @dollyjaneprenzel

@rainyday541 - I have Interstim now. Unfortunately the device stopped functioning after four years and my doctor is trying to figure out why. Seeing her Wed.

Jump to this post

@dollyjaneprenzel Have they checked the battery and are the wires still in place?

REPLY
Profile picture for rainyday541
rainyday541 | @rainyday541 | Oct 26 3:55pm
In reply to @kmb24 "I am just starting the journey with underactive bladder. Use catheter three times a day. Last..." + (show)
Profile picture for kmb24 @kmb24

I am just starting the journey with underactive bladder. Use catheter three times a day. Last year I had one UTI after another, never ending. Have been on cefdinir for 6 months now. No UTI but now other issues like itchy skin, itchy pubic area, dizzy and light headed, pelvic pain.
Not sure which direction to turn to. I am exhausted with worry. Any suggestions?

Jump to this post

@kmb24 Has anyone talked to you about Interstim implant?

REPLY
1 reply
Profile picture for Dolly Jane
Dolly Jane | @dollyjaneprenzel | Oct 26 4:27pm

Yes, the battery has been declared dead after some testing. The wires are still in place. It has never worked well for me and I plan to have it removed after the first of the year. Thanks for asking.

REPLY
Profile picture for kmb24
kmb24 | @kmb24 | Oct 26 6:02pm
In reply to @rainyday541 "@kmb24 Has anyone talked to you about Interstim implant?" + (show)
Profile picture for rainyday541 @rainyday541

@kmb24 Has anyone talked to you about Interstim implant?

Jump to this post

@rainyday541
There has been discussion of interstim
Implant but the success rate for underactive bladder is low.

REPLY
1 reply
Profile picture for rainyday541
rainyday541 | @rainyday541 | Oct 27 8:55am
In reply to @kmb24 "@rainyday541 There has been discussion of interstim Implant but the success rate for underactive bladder is..." + (show)
Profile picture for kmb24 @kmb24

@rainyday541
There has been discussion of interstim
Implant but the success rate for underactive bladder is low.

Jump to this post

@kmb24 I understand the implant is successful in 4 out of 5 people. Before the implant there is a trial phase to see if it is successful for you. If you have success then the implant is done. This does not give you 100% continence, but a huge improvement in quality of life. I was in the bathroom 22 times a day, now I am there 11 times a day. I call that a success. It has improved my quality of life.

REPLY
Profile picture for kmb24
kmb24 | @kmb24 | Oct 27 8:58am

Will talk to urologist about it again. Thanks.

REPLY
View MoreView Less
Please sign in or register to post a reply.