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Bladder conditions support: Introduce yourself and connect
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?
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Following bladder cancer tumor removal, I have developed constant urgency, pelvic pain. All cultures negative. I have nephrostimy stents but told not the reason. No bladder spasm med is effective. Inflamed bladder not typical UTI. Thoughts?
Seeking support for my husband’s frequent urination (25+ times a night and 15+ times per day). Have ruled out OAB, UTI, BPH, colon cancer, prostate cancer and enlarged prostate. Tried 3-4 prescribed OAB meds and none worked. Had Interstim device implanted and still no relief. Has anyone had something similar occur but received an official diagnosis or treatment plan? Have been looking for a solution for more than 2 years.
@rex321
My husband is seeking help for a similar condition with trips to the bathroom upwards of 25+ a night and 15+ times during the day. As you can imagine, he is sleep deprived and is hopeful someone who also had no success with OAB meds and the Interstim device may have a nugget of information about what to do next. His urologists are stumped. What have you uncovered?
@morrsupport
I have recently did a trial of interstim for the same problem, although I only get up like 6 to 8 times a night. The interstim did not work for me (there is a one week trial period). I am scheduled for a botox injection this coming week, which some people have had success with. I will keep you informed as to how that works out, although it will take several weeks after the botox to see if it is effective, and it has to repeated every three months even if successful.
John Belcher
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Thank you so much for the reply. I am hopeful for you and will be glad to hear from you as your course of treatment progresses.
@klp thank you for taking on this new group. I am a bit late coming to the party but I look forward to discussions in this group. I have followed the Kidney / Bladder group discussions since I joined MCC as a member. I have CKD as a complication of diabetes. I also have a long history of various bladder conditions. It is good that there is a separate group devoted to that.
Here is my best attempt at introducing myself in regards to bladder conditions.
Incontinence - I will leak if I cough, sneeze or laugh too hard. A book on incontinence from Mayo Clinic Press calls this Stress Incontinence I think. It has nothing to do with emotions or mental health but refers to stress on the abdominal and pelvic muscles that support the bladder. That makes sense but many times I just don’t make it to the bathroom in time. In the above mentioned book a suggested remedy is scheduled toileting. The idea is to try to use the bathroom on a tight short schedule whether you feel like you have to go or not. I tried that to the best of my ability and it kind of backfired. Now I’ve developed another problem
Urine Retention - When I’m on the toilet in the bathroom I can’t go. There is pressure and even pain. I’m in the bathroom, on time and am dry so there shouldn’t be a problem but there is. CAN’T GO. This has even been confirmed to some extent in conjunction with my third problem.
UTI’s - I have always been prone to these. I easily recognize the symptoms (pressure, pain, burning, foul smelling urine, dark or cloudy appearing urine…) When this happens I increase water consumption and add cranberry juice. The symptoms usually clear up in a day or two. If they don’t I head to urgent care to give a urine sample. Then I frequently end up on an antibiotic. On one trip to urgent care a bladder scan was used to rule out urine retention. The nurse that did the scan said I was “empty”. Another nurse said that wasn’t possible and repeated the scan and said it indicated urine retention. (I’m not sure either one had experience doing bladder scans.) They were arguing about this when results came back from my urine sample. The results were somewhat inconclusive but I was given a prescription for antibiotics and sent home.
So those are my bladder conditions. The thing that helps most with all of this is good hydration, good hygiene, taking time to use the toilet as needed and having a supply of Depends available!
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I had the botox injection on Jan 14, I am now 9 days out, and I see a reduction in the number of time I urinate at night from 6 or many more to about 3.
This is life changing even at that level!
The full effect is supposed to take two weeks.
The injection was not pleasant, but not terrible. The major side effects they worry about is that you can't urinate at all, and you have to be able to self-catheterize. The doc started with a low dose "100 units", and can go up to triple that. They start off at the low dose to avoid the inability to urinate at all. I have my prostate removed many years ago due to prostate cancer, the doc said that would reduce my chances of a negative outcome.
So far I am delighted.
@heaviside
That is fantastic news! I am hopeful this is a workable solution. Thank you for your update!