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If you experience frequent urination, incontinence, and urinary tract infections, you’re not alone. Bladder issues affect 80 percent of people with multiple sclerosis (MS), including members of MyMSTeam, who share the challenges - and awkwardness - of living with bladder problems.
One woman lamented: “I’m 34 years old and have to wear adult pull-ups!” Another exclaimed: “My most embarrassing moments have been bathroom related.” Intimacy is a concern for another member: It’s [bad] having this issue when your hubby is talking about having kids! These things are far from sexy.”
“My bladder and front door have a conspiracy against me,” expressed another member. “As soon as I put the key in the door, my bladder no longer holds things in. I can’t count how many times I’ve had to shower and wash laundry after I got home.”
What Causes MS Bladder Issues?
Bladder issues occur when lesions in the brain or spine block or delay messages sent to areas of the central nervous system that control bladder and urinary functions. This results in a wide range of bladder problems experienced my MyMSTeam members.
Some have the urge to urinate all the time, others can’t hold urine, and still others pee frequently at night, or have trouble emptying their bladder completely. “The muscles that control my bladder and bowels simply don’t work any longer. No matter how hard I try, my brain will not communicate with that area of my body. Believe me, I’ve tried,” lamented one MyMSTeam member.
Urinary tract infections (UTIs) are a frequent concern among members of MyMSTeam. “I have a question that I'm embarrassed to ask,” one member wrote. “Do any of you have a constant urinary tract infection? When I urinate, I also get a strange sensation that runs up my body across my chest. I’ve asked so many doctors what this is and cannot get an answer. So now, I'm wondering if it's an MS thing?”
Urine that remains in the bladder too long can breed excess bacteria, eventually leading to infection. “I keep getting UTIs because I don't empty all the time,” said one member. “My neurologist says the bacteria just sits there and causes infections.” Added another: “I struggle with terrible persistent bladder infections. Even when the infection clears, my bladder still hurts like crazy."
MS Bladder Treatments
Antibiotics often provide relief from UTIs. Other treatment options may be needed for UTIs caused by overactive bladder – a condition experienced by many members, in which the bladder doesn’t fully evacuate.
In those cases, members say they’ve managed symptoms with a variety of medications and therapies recommended by doctors after a thorough evaluation. They include:
Catheterization. One intervention technique called intermittent self-catheterization (ISC) involves draining the bladder one or more times per day. “MS and my bladder muscles do not get along, so self-catheterization really worked for me,” reported one member.
Another option, suprapubic cystostomy, involves surgically inserting a tube into the bladder through an opening in the lower abdomen. This allows urine to bypass the urinary tract and drain into an external bag.
“No more self-catheterization, no more bladder medication or supplements,” said one member. “I just pull the plug every few hours. I even change the catheter tube myself. And no urinary tract means no UTI.”
Some members have avoided catheterization, despite their doctor’s recommendations, increasing their risk of more serious bladder issues.
“After 51 years of living with MS, the most damaging thing that I’ve done to my body is to ignore my urologist,” said one member. “This created unnecessary damage because I did not pee or use the catheter. “Never pass up a chance to pee. Keep your bladder as empty as possible so bacteria can’t grow.”
Another agreed: “I also resisted self-catheterizing and ended up with kidney stones and recurrent UTIs. Now I catheterize four-to-five times a day. Once you get used to it, it’s no big deal.”
Bladder relaxers: Many members have controlled overactive bladder with interventions or medications that relax constricted muscles to allow evacuation of urine.
“A bladder relaxer such as Sanctura XR (Trospium Chloride) worked for me,” said one man. “I stopped having UTIs immediately after it was prescribed. Another shared: “I finally took the plunge and tried BOTOX (OnabotulinumtoxinA) [injections] for the first time. I couldn't find a better way to keep my independence.” BOTOX is approved by the FDA to treat urinary incontinence caused by overactive bladder.
Non-Invasive Therapies for MS Bladder Issues
Members also report success with non-invasive approaches, such as diet, lifestyle modifications, and alternative therapies.
Cranberry. Many members swear by cranberry supplements. “I take two [cranberry supplements] and my bladder calms down. It works every time. No more UTIs,” shared one member. Another found relief using cranberry in combination with other therapies. “My doctor has me on 4,200 mg of cranberry twice a day, 2,000 mg vitamin C, and an antibiotic. I haven't had any UTIs in a year,” she said.
Another’s obstetrician prescribed two quarts daily of either unsweetened pineapple juice or grapefruit juice during her pregnancy. No cranberry juice at all,” she said. “It worked every time for me.” Cranberry can aggravate the bladder in some people, so check with your doctor first before taking it in supplement or liquid form.
Medical marijuana. Cannabis (where legally available) has provided relief from bladder symptoms for many members. “It controls my bladder for the night,” said one man. “I used to get up three or four times a night, now I can make it to the morning.”
Acupuncture and other complementary therapies. Research – and members of MyMSTeam – suggest that acupuncture can ease symptoms of overactive bladder. Members also recommend pelvic floor exercises, such as Kegels, to strengthen a weak bladder.
Check with your physician before starting and new medications, therapies, or supplements.
On MyMSTeam, the social network and online support group for those living with MS, members talk about a range of personal experiences including coping with bladder issues.
Here are some conversations about coping with bladder issues:
Can you relate? Go to MyMSTeam today and start - or join - the conversation. You'll be surprised how many others share similar stories.
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