Gotta Pee!! Recurrent UTI, or Bladder Pain Syndrome?

"I have UTI's all the time!"

Have you ever been to the doctor for a urinary tract infection and been told your urine wasn't infected? Or have you been on antibiotics for a urinary tract infection and it just didn't seem to get better, or came back really quickly?

It happens more often than you'd think, and it might NOT be an infection!!

UTI diagnosis

UTI is the most common cause of pain related to your bladder. With a normal urinary tract infection, these symptoms are most common:

- Burning, stinging, or pain when you pee

- Needing to go RIGHT NOW, also known as urgency

- No relief with urinating

- Funny smell to the urine, or possibly cloudy urine

If these are the symptoms you're having, it's probably a urinary tract infection, and your GYN can see you for diagnosis. Your urine dip will almost always be abnormal and you'll get a prescription for antibiotics.

Concerning symptoms

So, what kind of symptoms would lean toward something other than a simple UTI? In addition to some of the above mentioned symptoms, if you have any of these below, it would be worth the time to dig deeper...

- Recurrent UTIs diagnosed without a positive urine dip in the office (using teledoc)

- Discharge from the vagina or urethra (the tube that connects the bladder to the outside)

- Pain or overwhelming pressure as the bladder gets full, but relief with voiding

- Pain worsened by eating certain types of food/drink like citrus and caffeine

- Going pee more than 10 times during awake hours

- Going pee more than once at night

- Pain during intercourse (sex)

- Feeling like you still need to pee AFTER you've already gone

- A sensitive lump or bump inside or just outside the vagina

- Chronic pelvic pain

- Pain with having a bowel movement

So if it isn't a UTI, what IS it?

There are a lot of possibilities for the diagnosis. It could be an infection in the vagina, or one of the glands in or around the vagina. It could be a little out-pouching of the urethra. There are a lot of other things that a pelvic pain specialist can diagnose, but what I see most commonly is something called Interstitial Cystitis, also known as Bladder Pain Syndrome (IC/BPS). 

What is Interstitial Cystitis/Bladder Pain Syndrome?

The official definition is: "An unpleasant sensation (pain/pressure/discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration in the absence of infection or other identifiable cause".

What that really means is you've had pain type symptoms for more than 6 weeks and the doctor can't find a definitive infection or other reason for it. There's a questionnaire called PUF that helps us get an idea of what your symptoms are like at baseline.

IC/BPS often occurs in the setting of other pain problems like chronic pelvic pain, vulvar pain, irritable bowel syndrome, chronic fatigue, and fibromyalgia. We aren't really sure what causes IC/BPS, but we know it can cause other issues like depression, anxiety, and trigger points in the pelvis.

So, how is IC/BPS treated?

Initially, I'll rule out a UTI, check how much urine you retain in your bladder after voiding, and review your PUF. If you've got a history of smoking, I also rule out any type of bladder cancer, as you're at higher risk. If all of the signs still point to IC/BPS, then we start with the least invasive treatments first:

- Physical therapy with a specially trained pelvic PT

- Education on food/drink to avoid

- Oral medications

- Bladder instillations

Bladder instillations usually include several medications that seem to calm the inflammation in the bladder. They're done one to three times a week, either in the office, or at home if you're willing to do them yourself. Initially you may not see any benefit from the treatments. It can take a few weeks to up to 3 months for the full benefit to be felt. If you're not getting any better on these treatments, then I'll move to more invasive treatments not discussed here. 

Resources:
1. Diagnosis and Treatment Interstitial Cystitis/Bladder Pain Syndrome. American Urological Association
2. Interstitial Cystits/Bladder Pain Syndrome. NIH
3. Treatment of Interstitial Cystitis/Bladder Pain Syndrome. UpToDate
4. Role of Inflammation in bladder function and interstitial cystitis. Sonal Grover, MD et al.
5. From interstitial cystitis to chronic pelvic pain. C Persu et al.
6. The Interstitial Cystitis Association of America: lessons learned over the past 30 years. Vicki Ratner