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My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Give me a break. A Potty break.

Give me a break. A Potty break.

Over the past few weeks I’ve been having a lot of urges to pee…and I don’t have to go every time. It’s been extremely frustrating and had me worried that I had a bladder infection, UTI, or another kidney infection. After a few days of symptoms, I went to the doctor. They ran a urine test, and everything came back normal. This was the morning before my week long trip to Wisconsin to see my family and friends and I wanted to make sure I didn’t need antibiotics asap.

My PCP thought I might have cystitis and referred me to a urologist and I went to see her this morning.

The intake person informed me that they’d be doing a urine sample before the start of my appointment, so I made sure to drink enough gatorade on the 25 minute drive there to be able to give a sample. It definitely worked! I got to the office and was ready to give my sample (urgently!) but had to fill out paperwork first and then wait for the nurse to take me back. Luckily it was only about 10 minutes before I was able to finally go to the bathroom. 

I emptied my bladder completely (after filling the specimen cup) and went back to the examination room. The nurse asked the usual questions: allergies, current medications, and symptoms. She took my blood pressure, temperature, and then told me to disrobe from the waist down and put on the gown. I changed and the doctor came in a few minutes later.


Another Day

Another gown, another doctor’s office

I explained my symptoms to her and my PCP’s thoughts on looking into cystitis. The urologist asked if I had any pain with urination (no I don’t), if I deal with constipation (yes, for most of my life), and how much fluid I intake daily (my specialist from back home recommends at least 100oz or 125oz on flare up days. Roughly a gallon). She said constipation can cause extra pressure on the bladder and with my added fluid intake, it causes the perfect storm for an overactive bladder.  I told her that even though I had peed about 10 minutes prior, I could feel the pressure of needing to go again.

She did a quick exam (thankfully NOT a full pelvic) and used the ultrasound to check on my bladder. I could really feel the pressure of needing to go. And when she looked at my bladder, she could see that it was pretty full. She had me go to the bathroom and then checked again with the ultrasound to see if I was able to completely empty my bladder (I was able to). She diagnosed me with an overactive bladder. She said that medication could help and gave me two different options to choose from (because one usually isn’t covered by insurance and the generic version is) and said that she usually recommends people with overactive bladder drink 50oz of water a day or less. I said I’d try the first medication (it has less risk of increasing constipation) and see how much my insurance would cover. And that I hoped trying it one time, might help to kinda “reset” things. The urologist told me its usually a chronic condition (another one to add to the list…).

On my way home, the pharmacy called and said the medication would be $85 but she found a coupon and needed more information from me to see how much of a discount I could receive. After our 10 minute phone call, she found out that the first fill of medication will be FREE! But after that, the discount for other refills would only be a total of $70 for the year. I decided that we’ll try this round and see how it goes. 

Now I’m stuck in this catch-22 type of situation. If I drink less water, my POTS symptoms will flare up. But if I continue drinking the amount I’m supposed to have (as recommended by my POTS team back in Wisconsin), I’ll be uncomfortable and have that feeling of “gotta go gotta go…gotta go right NOW!” *now the jingle is in your head, you’re welcome haha*. I’m thankful that I’ll finally have a specialist to discuss this with at the end of next month. In the mean time, I’ll be trying to figure out what the right balance is to keep my overactive bladder AND my POTS symptoms in check. 

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Specialist...or lack thereof

Specialist...or lack thereof