For anyone who’s read my book, you know that I don’t shy away from discussing the uncomfortable or embarrassing aspects of life. I’ve been open about my journey with incontinence, and today, I want to share another chapter of that struggle. It’s raw, frustrating, and slightly mortifying, (definitely bordering on TMI), but it’s my truth and something I’ve been dealing with lately. I know others can relate and I believe in the power of vulnerability, authenticity, and connection.
In 2016, I had a super pubic catheter (SPC) inserted. At the time, it felt like the answer to everything: my incontinence, my frequent urination, and even my inability to enjoy coffee without worrying about accidents. For a while, it worked well, and I felt like I had regained some control over my life. No longer would I be afraid to drink water, alcohol, or the occasional caffeinated soda. I thought the days of constant stress and embarrassment were behind me.
But last summer, things started to go wrong. My catheter stopped working properly, and it wasn’t until a change in medication that I experienced some relief. Unfortunately, it was short-lived—lasting only about two months before the problems returned.
Fast forward to July 2025, and I found myself at the breaking point. After multiple rounds of antibiotics that fought a losing battle, my SPC stopped functioning once again. Enough was enough—I knew I had to explore other options. I was determined to find a different way to manage this unpredictable, often uncooperative bladder. But I wasn’t sure it was even possible without some sort of major surgery that would no doubt mean a few months’ recovery.
My female Urogynecologist, who had suggested I get the SPC and who I had seen for years, referred me to Urology–a male-dominated department. Honestly, in 35 years of living with Friedreich’s ataxia (FA), I’d never had a female urologist. My past experiences with male urologists have often felt dismissive with overly confident dudes looking down on me, (a lowly girl), without truly listening. I knew the process would be slow and agonizing—but I was ready to face whatever lay ahead.
I was shocked to find the new urologist was a woman! (Finally, a doctor with the right body parts to meet my concerns with empathy and not their ego.) Meeting the new urologist brought a mix of hope and nervous anticipation. I always have a bit of trepidation about going to a new doctor who is unfamiliar with me and who most likely has little knowledge of FA.
During this time, I was continuously leaking through my urethra and continually making a mess of my clothes. So I limited my time out of bed, only making outings for special occasions. I binged old seasons of The Great British Baking Show. It was kind of sad, and made me crave caramel, chocolate, and bread.
My appointment came and we discussed my symptoms. A cystoscopy, (a procedure where they look in the bladder), was determined to be the first step. Unfortunately, I had to wait three weeks for this procedure. The wait was unbearable. I returned to binge-watching Dexter and Unforgotten. Nothing like murder to raise my spirits.
After the cystoscopy, it was clear I needed a new SPC placed by radiology and Botox injections in my bladder. I thought, this is simple. I’ve done this before. Recovery is just a matter of a few days. I figured missing a couple of my twice-weekly workouts would be the worst of it. How wrong I was.
I don’t remember much of the placement of the new SPC—under sedation—but what followed was a continual stream of Tylenol and Advil. The pain from the new hole in my low abdomen flowed for a week and a half until the Botox injections. I had very little energy to do anything more than binge House of Guiness, nap, and watch random movies.
For the Botox, I was under general anesthesia. I woke up in a fog I couldn’t shake. It took days to start coming out of the haze. The pain had subsided a bit as I searched for some enthusiasm to hang out with my friends.
I was baffled by what was going on. I’d gone through these procedures before and recovered swiftly. I guessed my aging body had something to do with it. I know that aging can slow rebound time, but it still caught me off guard. It’s a stark reminder that even when you think you’ve got a handle on things, life is still there reminding you of your vulnerabilities—disabled or not.
Now I am four weeks out of surgery and I think I am finally back to my routine. I am out and about most every day and I am confident to make plans with my friends. The Botox seems to be working well at this point, and my urologist has plans for me to have the injections every 3 to 4 months instead of every 9 to 12. She is even willing to consider altering my anesthesia so it doesn’t take me as long to recover. Things seem to be on the right track so I am optimistic.
I did not think I would get here–binging the current season of The Great British Baking Show and reading some cheesy romance books. I am confident in this new approach to my incontinence–more frequent check-ins, closer management, and maybe a lighter hand on the anesthesia next time! I feel a profound sense of relief.
Yes, this may be TMI for many. But that’s the point. These are the parts of life we keep hidden, the details that make us feel isolated. My hope in sharing this is that it serves as a powerful reminder: You are not the only one dealing with the unpredictable reality of your body. Vulnerability creates connection, and our stories, however embarrassing they feel, are often the very thing someone else needs to hear.
If this resonated with you, know that you’re in good company. What’s one thing you’ve been dealing with lately that you wish people talked about more openly?
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