This Shouldn’t Be Happening!

Despite millions of dollars invested in research that has proven that IC/BPS is a legitimate pelvic pain condition, women continue to feel disregarded and ignored by their physicians. In fact, a new study from Vanderbilt University and the NIH found that while men with IC/BPS often felt supported by their doctors and involved in their treatment decisions, women felt that they were disbelieved and dismissed.(1)

Why? While IC was first described in a medical journal in the mid 1800’s and Hunner’s lesions were discovered in 1915, three urologists in the 1958 published a case study of a young stenographer whose symptoms were so severe that they removed her bladder. When her symptoms continued, they suggested that she had “repressed hostility towards parental figures handled masochistically via bladder symptoms since infancy.”(2) From that moment until the late 1980’s, many medical schools did indeed teach that IC was mental illness.

The legacy of those years has been profound and some doctors and nurses still suggest that IC is “all in your head.” In fact, an ICN member shared that this happened just a few weeks ago. I would hazard to guess that most women (and undoubtedly some men) with IC/BPS have been labelled as hysterical at one point in time.

If this happens to you, stand tall, look your doctor in the eye and ask “how can a mental illness cause blood in my urine?” or “How does anger make my bladder bleed?” That usually stops them in their tracks. Then hand them a copy of the AUA Guidelines for IC/BPS which will not only validate your symptoms but educate your doctors about the new, truly groundbreaking approach to the treatment of IC/BPS, including three distinct patient groups and their correct treatments.

We have no choice. Pelvic pain disorders are only briefly discussed in medical training. If we want better treatment, we must walk into every doctors appointment educated, informed and ready to make our case. A recent study showed that patients who were more knowledgeable had better outcomes.(3) So try to take some time in the coming weeks to read the guidelines AND print out three copies: one for you, one for your urologist and one to save if you ever need emergency care. With these in hand, no one can suggest that this is all in your head.

If they continue to dismiss and demean you, you have the right to a second opinion. Gather your things, look them in the eye and say “I deserve to be with a doctor who is knowledgeable and experienced at treating interstitial cystitis, bladder and pelvic pain.”

Read & Print Out The Newly Revised IC/BPS Guidelines Here!

References:

  1. Windgassen SS, Sutherland S, Finn MTM, et al. Gender differences in the experience of interstitial cystitis/bladder pain syndrome. Front Pain Res. 2022;3:954967. 
  2. Bowers, J, et al. Masochism and Interstitial Cystitis: A report of a case. Psychosomatic Medicine: July 1958, Vol 20, Issue 4 p 296 to 302
  3. Petronelli M. Study assesses impact of health literacy on chronic pelvic pain. UroToday. June 24,2022