“And how long have you been experiencing these symptoms?”
“A year in August.”
That was on Halloween. I spent my favorite holiday sitting in a doctor’s office explaining that I had ignored my body’s complaints for fourteen long months.
There was a noticeable pause between the doctor’s busy note taking and my answer. I assume other people come running in long before that. That’s not how I roll though. “Look, if it was my dog I would have brought him in right away. I tend to put off things when it comes to me.”
“Are you getting up to urinate at night?”
“Yes. Anywhere from three to five times a night.” When you do the math you will realize that by the time I finally would get settled back in for some good sleeping I’d be back up again peeing.
“Do you feel like your frequency has increased during the day?”
I took a deep breath. A whole year of not really talking about it makes it hard to really talk about it. “Well, yesterday I got up at 5:30 am. By the time I was clocking out for lunch I had already urinated twelve times.”
The doctor nodded. “Can you describe how you feel when this happens?”
“I feel like I’m going to pee on myself. Sometimes it is sudden but other times it’s a constant burning thought in my mind that I just have to pee like I haven’t gone all day long. Sometimes I do have a fair amount of output. Other times I feel like I’m going to explode and nothing. A tiny little drizzle of urine all for nothing.”
My bladder was taking over my life. It was interfering with my job, with my social life, with travel, with outdoor activities. If I’m by myself birding that’s one thing because I will gladly pop a squat behind a bush. When I’m in a group of strangers, not so much.
After a recent road trip to my grandparents I finally hit a point of exhaustion with my bladder. A four hour trip to see them became a nightmare when we had to stop at a gas station every forty-five minutes. What I had learned about my bladder was that it no longer liked being trapped in cars, but it especially did not like being trapped in cars if I was a passenger. Driving (and in particular driving by myself) I could sort of manage but when someone else has control of the wheel (and bathroom breaks) my bladder would have a full blown meltdown.
Without any of the super invasive testing, a tentative diagnosis of interstitial cystitis was made and I was prescribed a medication. At first I was very excited. I was afraid that I was going to be assumed as a crazy person with no self-control. When my problem was quickly addressed with a pill, I was really stoked.
Unfortunately, I was less stoked when I picked up the medication and it was going to cost me almost $200 a month – that’s with my insurance. The stokedness continued to fade as I read the side effects. Number one side effect – alopecia (hair loss). Over the last few years, I’ve had these weird symptoms (add the cystitis to the list) and many medical professionals have speculated that I am hypothyroid and at times I have the TSH level to confirm it. I just don’t have those levels consistently enough. One of the symptoms is that my hair has started thinning. I’m not talking male pattern baldness or anything but I can tell a difference. The outer edges of my eyebrows are starting to seem less existent. As you can imagine taking a drug that was going to cause my hair to disappear more seemed a little less than ideal.
Did I mention that I also had to take the medication three times a day?
Was I willing to be bald, broke and wait months to see results if any?
No thank you. That sounds more miserable then having to pee every 45 minutes.
I tucked the medication away on top of my refrigerator and decided I wasn’t ready for this road to urinary freedom … not yet at least.
My annual exam with the OBGYN came around a month later and I decided to open up to her. She flipped over the lined exam sheet where I’m sure you are supposed to take notes and used the back to jot out things that could have looked like the next big Super Bowl play. She looked at everything I had told her about my declining health over the years and we both agreed my body was a mess.
But… she listened to everything I said and she said she wanted me to be better.
I sighed with relief. We came up with my options and number one on the game plan to better health was not a drug (to my relief – no pun intended). It was physical therapy with a pelvic floor specialist.
“Don’t be weirded out. Lots of people get weirded out when I recommend this. It’s not as weird as it sounds,” my OBGYN told me.
“Are you kidding me? I have to pee more than once an hour. Now that’s weird.”
She was right about lots of things that day, but she was definitely spot on about the weirded out part. Lots of people were a bit apprehensive about my upcoming therapy. I just kept repeating, “I have to get better. This may be the best way for me to start being normal again.”
This is where Sara Smith enters my life and I am thankful every day that she did. Yes, with pelvic floor therapy there is some awkward pants-less appointments. There are also appointments where you are doing yoga poses and squats (relax your pelvic floor and tone your toosh!) She also made me feel like some of the things I was doing wasn’t totally out of the realm of normal.
Did you know…
…a well hydrated person should have to urinate every two hours?
…the bladder holds one to two cups of urine?
…when urinating your stream should take at least six seconds?
She recommended some really scary things, like drinking eight glasses of water a day. She was right about me. Like many people with cystitis or other bladder problems, I started taking in less water to help reduce how much I needed to urinate. It didn’t really help at all and in fact probably made things worse by making my urine more concentrated and therefor torching my delicate little bladder some more. It took a few days of getting used to it, but it did make the sad little organ feel better and really didn’t change my frequency.
Just like the other medical professionals, she asked me when it had all started but then she asked me if I could think of anything that had changed that August. Was there anything that could have egged this on?
Yes. I did indeed remember the week I started getting up in the middle of the night to pee.
It was an exhausting week at work. I think by the time it was said and done I worked well over fifty hours and most of those days I did not get a lunch break. I initially said it was that exhausting week that prompted my sudden need to get up in the middle of the night every other hour to visit the bathroom.
That wasn’t all of it though.
That week of endless emergency surgeries, empty stomachs and long hours I worked alongside a relief employee – someone who is hired as a sort of substitute. Most of these long hours I was with this particular person and the kindest thing I can say is that this person and I do not see eye to eye. I generally get along well with most people, but this particular person stressed me out so horribly that I would do anything to get away from them for just a few minutes.
I would go to the bathroom because it is the only place in a work place that you can lock yourself behind a closed door, breathe and pray that the week you are experiencing will soon end. That week with that person, I taught my bladder that the best way to deal with stress was to pee. My body learned quickly and had no intention of looking back. Stressed about being out of town at a conference – let’s pee a lot. Stressed that you are on a long car ride – let’s pee a lot. At a work meeting and you aren’t sure what’s going to be discussed (as far as you know it could be a bladder intervention) – run and hide in the bathroom to pee. After realizing the correlation between that week and my bladder, I started taking notice to what my bladder was doing. Every time stress began to creep in I could feel my muscle begin tensing up and my bladder began to react in the best way it knew now. The anxious feeling would hit and I’d need to run to the bathroom.
The road to recovery has been an interesting one. I was also told to explore foods that could be trouble causing. My food Satan: Oats. Who would have thought, right? I’d been forcing myself to eat oatmeal in the morning for almost a year. When I dropped the oatmeal to have blueberry-celery smoothies (both foods have anti-inflammatory bladder soothing properties) I began to feel so much better. I was sure it was the smoothies making me feel better. A granola bar a week later and I soon realized it was the absence of the oats!
I’ve quit coffee and soda but do occasionally treat myself to coffee (at most once a week) and I only breakdown and have a Coke in the face of a horrible headache… but honestly since getting my diet on tract I rarely have a headache anymore.
I started myself on a regimen of glucosamine, chondroitin and Claritin. I’m not an MD so I can’t tell you to take it, but I do think I have received benefits from it. It may be all in my head, but hey! Whatever it takes to not run off all the time to the potty.
Sara recommended that I read this book and like every recommendation she passed on to me, this was very helpful. The book covers lots of lifestyle and food changes you can make. It also covers a lot of those areas to make you realize you may not be as abnormal as you think … and you are not alone. The book is great. If you have bladder problems, I think it is a wonderful guide to bladder health.
As good as the book was, it was never anywhere as detrimental as the time I spent with Sara. Hands down, she was the best thing that happened to my bladder. I think I’ll probably always be a little wonky (in many perspectives) but I have come such a long way because of her therapy and support. Just the other week I went on a trip to help a bird bander catch sparrows in our local marshes. Let me tell you, before Sara I would have totally blown this trip off and said there was no way my bladder would handle hours wandering marshes in hip waders. I was brave and I went. I made it three and a half hours without having to pee. Yes, me! The girl who could barely hold it every thirty minutes on a bad day.
I hope I continue to have a well behaving bladder. I’m sure overtime I will learn to trust my bladder more and get back to a completely normal life without fear of it throwing a tantrum. My advice to you is to get help. You may have to tell your story to a few people before you get to the place you need to be. Once you’re there, you’ll know … no matter how weird anyone thinks it may be.
The Better Bladder Book by Wendy Cohan