Hi to everyone! I would like to ask for your inputs on how you deal with bladder/urinary control issues after radiation treatment. I have been having difficulty controlling my bladder to the extent that I’m now using a condom catheter especially at night because a diaper won’t be enough to hold all my pee for the whole night. And during daytime, I need to go to the bathroom every few minutes. My urologist had me take Vesicare in the daytime and Betmiga at night and they help at times, but not all the time.
Thank you in advance! Merry Christmas to everyone!
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dermdoc
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WOW! I was going to offer some suggestions but after reading your input I was blown away at the severity of your medical issue. You really need more help than this forum.
1. Are you in Europe? I'm not sure what is available there. You seem to have bladder spams. In the US, Gemtesa (vibegron) is the newest drug for that. If that doesn't work, there are a few other bladder antispasmotics: oxybutynin, fesoteradine, tolterodine, etc. Try them to find one that works.
A few other things that have worked for men in my groups:
2. If drugs don't work, you can try Posterior Tibial Transcutaneous Electrical Nerve Stimulation (TENS). A mild electric stimulator is attached near the ankle at home for a few minutes each day until the bladder nerves regain status:
I started taking Gemtesa (vibegron) in May for urgency issues which had lingered after radiation. It’s excellent. Within 2 weeks of starting it, my urination issues were totally gone.
How to deal with bladder/urinary control issues after radiation treatment.
ChatGPT
Managing bladder or urinary control issues after radiation treatment can be challenging, but there are various strategies to help address and improve symptoms. These issues often arise because radiation therapy, especially when targeting the pelvic area, can affect the bladder, urethra, and surrounding tissues. Below are several approaches to managing bladder or urinary control problems:
1. Pelvic Floor Exercises (Kegel Exercises)
What it helps with: Strengthening the pelvic floor muscles can help improve bladder control by increasing the ability to hold urine and prevent leaks.
How to do them: Tighten the muscles you would use to stop urinating, hold for 5–10 seconds, then release. Repeat 10-15 times, several times a day.
2. Bladder Training
What it helps with: This involves gradually increasing the time between urinations to train your bladder to hold more urine and reduce urgency.
How to do it: Start by trying to delay urination for 15 minutes when you feel the urge, then gradually increase the intervals.
3. Medication
Anticholinergics (e.g., oxybutynin, tolterodine): These medications can help reduce bladder spasms and urgency.
Alpha-blockers (e.g., tamsulosin): Used if there is an issue with bladder outlet obstruction or difficulty emptying the bladder.
How they help: Medications can help manage symptoms like frequency, urgency, and incontinence by calming the bladder muscles.
4. Biofeedback
What it helps with: This method uses sensors to provide feedback on your pelvic floor muscles, helping you learn how to relax or contract them more effectively.
How it works: A therapist guides you through exercises while giving feedback on muscle activity, improving bladder control.
5. Diet and Fluid Management
What it helps with: Sometimes, dietary habits can contribute to bladder symptoms.
How to do it:
Stay hydrated, but avoid excessive fluid intake before bedtime.
Limit irritants: Certain foods and drinks like caffeine, alcohol, spicy foods, and acidic fruits may irritate the bladder.
Monitor your intake: Adjust your diet to avoid foods that worsen symptoms and focus on drinking sufficient water throughout the day.
6. Managing Incontinence Pads or Devices
What it helps with: If bladder leaks are a problem, using absorbent pads or wearable devices can help manage any accidents and improve comfort and confidence.
How it works: There are several options available based on the severity of the issue, from pads to more advanced devices like pessaries or bladder stimulators.
7. Physical Therapy for Pelvic Health
What it helps with: A pelvic health physical therapist can help with exercises to strengthen the pelvic muscles, improve bladder control, and reduce incontinence.
8. Avoiding Constipation
What it helps with: Constipation can worsen bladder control issues by putting pressure on the bladder.
How to do it: Ensure a fiber-rich diet, drink plenty of water, and consider a gentle stool softener if needed.
9. Intermittent Catheterization or Catheters
What it helps with: If the radiation treatment has caused difficulty fully emptying the bladder, catheterization may help empty the bladder effectively.
How to do it: This may involve a sterile catheter used intermittently to drain the bladder, under the guidance of a healthcare professional.
10. Regular Follow-Up Care
What it helps with: Staying in contact with your healthcare provider is crucial to monitor symptoms, adjust treatments, and rule out any other underlying conditions.
How to do it: Ensure you're regularly visiting your healthcare provider to assess the effectiveness of treatments and explore additional options if necessary.
11. Surgical Options (if needed)
What it helps with: In some cases, surgery may be an option for severe bladder control issues that don't respond to other treatments.
How it works: Procedures may include bladder augmentation or sling procedures to support the bladder.
Psychological Support
What it helps with: Chronic urinary issues can affect mental health, so emotional support or counseling might be beneficial for managing any stress, anxiety, or frustration.
It's important to consult with your healthcare provider to create a personalized treatment plan. They may refer you to specialists, such as a urologist, physical therapist, or continence nurse, to help manage symptoms effectively.
I agree with most of j-o-h-n reply. Would advise caution on Oxybutynin use. Oxybutynin, a first-generation anticholinergic, is used to treat overactive bladder (OAB) but has been linked to adverse cognitive outcomes, including impaired memory and increased dementia risk. I found this out recently from WebMD and Drugs.com. These sites are saying that anticholinergics should not be prescribed for older people. I was on it for over a year had severe headaches and brain fog. I had to come off it, I am in the process of trying Gemtesa. This is supposed to have very little side effects will post how it goes.
I haven’t tried Oxybutynin and thank you for giving that info; wouldn’t want to have brain fog and cognitive decline, much more dementia. Will definitely ask my urologist on Gemtesa. Thanks for the input! Merry Christmas!
Plenty of helpful thoughts info for urinary incontenance. I have urinary retention. Neurogenic bladder. I think believe some these could maybe help my problem. I have self-cath’d since Aug 2005 when enlarged neurogenic bladder Dx’d. I’ve had several Urodynamics tests. Faile those. Still looking for post radiation irritation inflamation relief.
I had radiation cystitis and used HBOT 30 sessions and 4 years later another 35 sessions. Helped greatly but still use light pad for stress incontinence. Check it out. Nothing to lose and it helps many men. Most uros don’t know much about it. Medicare covers for post radiation. Good luck.
I tried everything that exists to solve my heavy incontinence after treatment, none of it worked. I got an AUS (artificial urinary sphincter) 4 years ago and it works great, no complaints at all.
Certainly most men don’t want this when they learn about it, but I can assure you it’s far superior to self catheterization, clamping and some of the other crazy things out there.
Find out what works for you. You don’t have to live this way.
Oh My Goodness. You are scaring me. First off, I am so sorry that you are having to deal with this. This is awful. I will be curious to see how you do with the suggestions you have been given thus far.
I am scheduled for SpaceOar (gel) along with Fiducial markers in preparation for external radiation of my prostate next week. Then the plan is for 28 days of radiation.
I believe I am going to receive Proton beam radiation instead of Photon. But as of now I have no issues with urination at all and am hoping to keep it that way. Please let me know what type of radiation you had and what precautions did the radiologist take? Did you receive SpaceOar gel prior to treatment?
I will be treated at Mayo Clinic in Arizona.
I was already apprehensive of damage to the colon, now I have to worry about this as well. Yikes!
I had IGRT and they used proton beam for it. I had 26 days of IGRT. You may want to ask your RO if they use image guidance in delivering the proton beam. I didn’t have the SpaceOar (gel) but from my research this pushes the rectum away from the prostate to reduce the amount of radiation that reaches the rectum, so the bladder won’t be protected by it.
I hope you are doing well. When you mentioned 26 days, is that including weekends?
Reason I ask, is that I am to be treated at a facility almost 500 miles away from home. So would need to make lodging arrangements.
Anyway, both my doctor, and BCBS called me yesterday to inform me that radiation therapy to my prostate was “Denied”. And the reason for the denial is because I have not had previous external radiation which makes no sense to me. So my doctor is submitting an appeal.
you bring up a very interesting point. Please note that I was on the additions trial which means I received Pluvicto prior to any chemotherapy. In fact, I have yet to receive any chemotherapy to date.
I have done very well on Pluvicto until a few months ago whereas my PSA has started to climb and bone scans along recent pet scan show it in the acetabulum. But the PET scan also shows it in the prostate itself. Thus, the two spots in which now they want to radiate.
But you are correct, initially I had lesions in my jaw bone and through my entire body and even a lot of lesions in the liver and lungs. So I was diagnosed denovo. However, the Pluvicto put it all into a dormant state. Even in my lungs and liver “most” lesions have either disappeared or shrunk considerably.
So from my 6th and final infusion of Pluvicto in August of 2023 until a few months ago, I was doing incredibly well. Even now, I have good quality of life and the thought is to try to knock out these two hot spots.
I am glad that I have quality of life and thus, after hearing other peoples experiences with external radiation to the prostate makes me not want to radiate it. Of course, I am good with having the acetabulum radiated the sooner the better as it keeps increasing in uptake with each scan along with the PSA.
My husband had proton radiation at Mayo Phoenix. His radiologist did not have the SpaceOar inserted. He explained that there was a lesion very near the rectum and that he didn't want the spacer preventing him from getting a sufficient margin of radiation in that area.
My husband did eventually develop Radiation Proctitis.
I’m so sorry to hear about that. I don’t know if I’m supposed to mention on here or not. But my radiologist has the initials of BL.
the urologist that’s supposed to do the SpaceOar has the initials of DL.
I am getting very nervous about having the procedure at all. I completed Pluvicto in August of last year and did really well up until fairly recently, but PET scan shows it in the prostate gland and in the acetabulum as of right now.
But honestly, I have very good quality of life with the exception of some pain in the acetabulum. My urination and bowel movements are great.
my PSA was undetectable until around September of this year.
do you mind if I ask how long ago your husband had his treatment and for how many sessions?
He was treated in Fall of 2023, I think it was 28 treatments ?, all a bit of a blur now🤗
Your doctor’s initials aren’t ours .. it’s OK to mention names if you want…
The actual radiation sessions were not bad, mostly just tricky having a full bladder.. he had minor side effects during radiation (minor urinary tract pain )which resolved with ibuprofen..
We were happy with his radiologist, Dr Rwigema, and all the radiation staff…and never ending graham crackers in the radiation waiting room !
I ended up with permanent requirement for Foley catheter after failed AUS. You get used to it. No need to get up at all to pee at night when large 2000 ml bag is used. Leg bag is used during day. Holds 1000ml so needs emptying maybe every four hours or so. My biggest problem has been leaking around catheter which has necessitated use of briefs and pads . Radiation caused scarring in urethra making Foley tube difficult to fit tightly throughout urethra. This all started many years after IMRT to prostate bed after failed RP.
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