Interstitial cystitis (bladder pain syndrome) is a complex pelvic pain syndrome that is sometimes difficult for patients and their providers to treat. Why? Because the symptoms that you associate with your bladder and IC can be caused by things outside of your bladder wall. Yes, really! Having to use the restroom every 30 minutes doesn’t necessarily mean that you have a bladder infection. It could be caused by menopause, a pelvic floor injury or even a fibroid tumor pushing on your bladder. In 2024, we must look beyond the bladder to look for the underlying cause.

To help you on that journey, here are a list of the common mistakes that patients make that can be preventing healing.

#1 – Assuming That You Have A Bladder Disease

If your doctor has looked in your bladder via a cystoscopy and found a normal bladder wall, that is a sign that your bladder is healthy and that your symptoms are probably coming from something beyond your bladder. It’s time to ask the question “What else could be causing this?” At a minimum, a pelvic floor assessment should be performed to check the health of your pelvic floor muscles. If they are tight, that’s a sign that physical therapy might be the correct treatment for you. It’s also important to assess for other potential causes, such as pelvic floor injury and tension, endometriosis, fibroid tumors, back injury and/or pelvic congestion syndrome, etc.

If, on the other hand, your urologist finds Hunner’s lesions (bloody wounds on the bladder wall), these should be treated promptly. A very, irritated bladder wall without lesions suggests that the bladder is very irritated, perhaps by the test itself or a chemical irritant from chemotherapy or a diet high in acid and/or caffeine.

#2 – Not Using Phenotyping

In 2024, phenotyping is a new tool that will find the most effective treatments for your unique case of IC by identifying the underlying cause. This is particularly important for patients who have had symptoms for many years that are not responding to various bladder treatments. If your current treatment hasn’t worked, your diagnosis should be reconsidered and refined using phenotyping. Pelvic floor dysfunction and injury is now considered the most common cause of IC symptoms and is found in at least 85% of patients. Learn about phenotyping here!

#3 – Continuing Medications That Aren’t Working

In the old days, doctors assumed that IC patients had an incurable bladder disease and were given Elmiron® (a medication which coats the bladder), an antihistamine and/or an antidepressant, often for years or decades. Yet, many patients still struggled with severe symptoms. Why? Because these medications aren’t treating the underlying problem. The AUA’s National IC/BPS Guidelines now encourage patients and doctors to monitor treatment results, stop therapies are not working and, if necessary, reconsider the diagnosis.

#4 – Dropping Out of Physical Therapy Because You Don’t Like Internal Work

An estimated 85% of IC/BPS patients struggle with tight, tender pelvic floor muscles, often the result of a past pelvic injury, such as childbirth, falls, sports, tailbone injuries, etc. Over time, tight pelvic floor muscles can squeeze blood vessels and nerves, resulting in ischemia. This can then lead to urinary frequency, urgency, pressure and pain. Physical therapy can heal many of these patients. Bladder therapies will not help.

What makes physical therapy awkward is that it must be performed internally, via the vagina in women or rectum in men. Why? Because the muscles are deep inside in the pelvis and often can’t be reached with our external therapy. Internal PT is the most successful way to restore normal, healthy muscle tone and function. It is normal, non-sexual and an effective way to treat pelvic floor muscles.

If PT is too expensive or if your insurance company won’t pay for it, consider paying for at least a proper assessment so that you know to what degree your muscles are involved. The PT can then give you some exercises to perform and/or teach you how to do internal PT with a wand. Remember, kegel exercises are not recommended and will make tight muscles worse.

#5 – Stopping The Use of Estrogen Cream

Skin health plays a critical role in our urinary tract. The bladder and urethra protect themselves from the caustic effects of urine via a thick coating of mucus. Unfortunately, your bladder needs estrogen to make it. Aging or the use of estrogen restricting medications (birth control, Lupron®) will cause the mucous to thin, dry and become much more sensitive. We call this the Genitourinary Syndrome of Menopause.

Estrogen atrophy is easy for the doctor to identify and an estrogen cream is usually prescribed to help the skin thicken and heal. Sometimes women stop this vital medication before it can help. Why?

  1. It’s not unusual for estrogen cream to burn the first few times it is used because the skin is so dry. This leaves some women doubting how and why it can help. Burning usually improves rapidly and resolves after a week or two as the skin strengthens and heals.
  2. Some women just don’t understand why they have been prescribed estrogen and stop using it because it can be messy, allowing their skin to dry over time. This skin is meant to be moist. They drier it gets, the worse the symptoms that can occur. It’s vital that we keep this skin as healthy as possible.
  3. Patients concerned about cancer may refuse estrogen without knowing that topical use is considered safe and effective. It’s oral estrogen that is strongly associated with cancer. Always talk about any concerns with your doctor. Listen to a video of Dr. Ashley Winter discussing the safety of topical estrogen.

#6 – Poor Water Intake

If you don’t drink enough water, you enter a state of dehydration that can have devastating toll on the bladder, especially in patients with Hunner’s lesions, bladder irritation and/or estrogen atrophy. Water intake dilutes urine to make it less caustic and irritating. You can easily determine your hydration levels by the color of your urine. Normal urine is a clear, pale yellow. If your urine is dark yellow or brown, you are likely dehydrated. If your urine is clear, you’re drinking too much.

#7 – Sitting Too Much

Sitting is considered the new smoking for the damage that it can do to the human body over time. When you sit for extended periods of time, this compresses the pelvic floor muscles and related nerves which can trigger bladder and bowel symptoms, as well as pelvic and back pain. Get up and walk several times a day at work. Consider using a sit, stand desk. Experts suggest that exercising between 150 and 300 minutes per week greatly improves our long-term health.

#8 – Junk Food & Smoking

You know who you are. You sneak that Mountain Dew, coffee, beer or smoke even though you know it will hurt your bladder. Your job is to help your body thrive. This is done by eating a healthy diet, rich in fruits and vegetables and healthy sources of protein. Women need 20 to 25 grams of fiber per day while men need 25 to 30grams to support healthy gut and bowel function as well.

Did you know that children who live in the homes of smokers may develop urinary symptoms similar to IC. Carcinogens from smoke become concentrated in urine where they can sit for long periods of time exposed to the bladder wall. Patients with Hunner’s lesions and/or estrogen atrophy are even more at risk because these carcinogens can enter the bladder wall and, sadly, trigger the growth of very painful cancer. It’s time to quit the smoke not only for your health but that of anyone you may expose. Learn more here! 

#9 – Straining To Urinate Or Have Bowel Movements

If you are straining to empty your bladder or bowels, you are actually making it more difficult to use the restroom. Straining your muscles make them tighter, which then makes it harder to release urine and poop. A Squatty Potty can help but if it continues, this is a sign that you have tight, dysfunctional muscles. Ask for a pelvic floor assessment with a qualified physical therapist. Physical therapy to relax these muscles can eliminate the need for straining.

#10 – Staying With a Doctor Who Isn’t Helping

If your doctor has run out of treatment options, refuses to refer you for a pelvic floor assessment and/or suggests that this is all in your head is not effective. IC/BPS cases are complex and can easily exceed the skill set of local urologists who are more experienced treating prostate cancer. Many patients have better success using a regional doctor at a nearby university. Yet, even these doctors can be stumped by more complex cases. There are a number of national experts who have seen thousands of patients and can provide a second opinion. It is worth traveling to see better doctors. Learn more and find these national experts here!