Do I really need to pee or is this OCD?

Today, on oversharing with Morgan: urination.

I don’t drink coffee for this reason and also because it’s disgusting
@theAwkwawrdYeti

I have had what I deemed “bladder issues” for going on three years now. I have to pee far more frequently than the average person. I wake up once or twice during the night to pee almost every night. During the day, I sometimes have to go every half hour. Other times, I’m able to go a record breaking two whole hours. Impressive, I know.

Yes, I mentioned it to my primary doctor. I discussed it with my ob/gyn. I even saw, not one, but two different urologists about it. Whenever I bring up my concerns to a new practitioner, they all initially think I have a UTI. I have legitimately been tested for a UTI probably ten times in the past few years. Initial results show signs of a UTI: trace blood, white blood cells, and bacteria. And then they do a culture, and I don’t have a UTI. Every single time. We’ve tried medications for an overactive bladder that didn’t seem to help. I had an ultrasound of my kidneys and bladder. Nothing made sense.

A few months ago, after growing increasingly frustrated with not finding physical answers, I did start to wonder if this wasn’t something physical. I already knew of sensorimotor OCD because of my heavy involvement in the OCD community. In this subtype, the OCD focuses on bodily sensations, such as breathing, heart-rate, or swallowing to the point that it’s hard to think of anything else. But could this really be OCD? The physical sensations and urges feel so real? And so many doctors thought I had UTIs?

me every night, image courtesy of The Awkward Yeti

Last night, I had an epiphany. Maybe it doesn’t have to be “either/or.” Maybe it can be “and.”

I think yes, I get signals from my bladder that it needs to be emptied more often than the average person. I do have trace amounts of blood in my urine, though that isn’t always a medical concern. And yes, the physical sensations do feel very real. But I think my inability to sit with those sensations might be OCD.

I’ve noticed I am hyper-aware of these urges to urinate in a sensorimotor OCD way. For me, it isn’t a fear that I will have an accident and wet myself; it’s more a fear that I will be distracted. For example, if I’m somewhere with a friend (back when we were allowed to go places) or about to perform in a show or just reading a good book, I don’t want to be distracted or interrupted by feeling the need to pee. Before beginning an activity, it’s suddenly all I can think about. So, I do a compulsion: I empty my bladder, often more than once. I’m trying to erase the uncertainty that I will feel the urge again anytime soon. That response to these signals sounds like OCD to me.

At the end of the day, OCD can be weird and creative and just plain annoying. The same goes for bladders. Also, ERP (exposure and response prevention) therapy is how I will primarily tackle this moving forward. It’s okay to go to a doctor if you have a reasonable physical concern, and that’s what I did. Asking those initial questions wasn’t OCD. But my doctors didn’t find anything wrong, and there’s not much else to try physically, though there may still be an underlying physical issue. I’m not saying this is 100% OCD and 0% physical/”legitimate” (in quotations because OCD is still legitimate). I’m just saying, sometimes it can be a mixture of both.

Morgan

P.S. Yes, I gave my blog a makeover. Sorry if that’s disorienting.

4 comments

  1. Thanks for sharing this and normalizing something that happens to a lot of us. Not to be that person, but this sounds exactly like one of the cardinal symptoms of PANS/PANDAS: frequent urination. People will pee way more often than typical, see multiple doctors about it, and never find anything wrong with the bladder/kidneys. It’s real, and it’s due to brain (specifically basal ganglia) dysfunction. And yes, OCD can definitely get wrapped up in it, too, and make it even worse! A lot of research is coming out showing that many cases of OCD or numerous other mental illnesses in people of any age might actually be neuroimmune conditions, even if you don’t necessarily meet the current, rigid definition of “PANS” or “PANDAS.” In my own experience, ERP definitely helps cope with a lot of the symptoms, but you might want to get tested for Strep since that can make the frequent peeing (and everything else) worse. If it’s neuroimmune, it might improve with antibiotics even without a definitive culture. Email if you ever want to talk!

    Liked by 1 person

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