Interstitial cystitis, or as we call it, IC, is a bladder condition that usually consists of multiple symptoms, including pelvic pain, pressure, or discomfort in the bladder and pelvic region, urinary frequency (needing to go often) and urgency (feeling a strong need to go). IC may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain. While IC affects millions of men and women, it is often under-diagnosed and under-treated, particularly in underserved groups including Black and African American communities.
In an effort to learn more about these challenges and help raise awareness about this under-recognized condition, Inspire has created a survey, in partnership with Boston Children’s Hospital, Interstitial Cystitis Association, and Black Health Matters with grant funding from the Center for Disease Control.
We were also fortunate to speak with “James” (real name changed for privacy purposes), who shared his personal journey with IC. Below are some highlights from our conversation with him:
Thank you for meeting with us today to talk about your experience with IC. Can you start by telling us a little bit about your initial symptoms?
I remember the first symptoms surfacing around the Superbowl in 2008. My primary symptoms were pelvic pressure, pain, sharp bladder spasms, rectal pain, and pain during intimacy. For me, these early symptoms did not affect my overall quality of life, and I was able to continue to travel for my career as a college recruiter.
How long after noticing your symptoms did it take to get a diagnosis? What healthcare providers assisted you with your diagnostic journey?
It took over a decade until I was finally diagnosed with interstitial cystitis. Two days after my symptoms started, I went to the ER where I was told I had chronic prostatitis. Over the years I went to a series of urologists and other practitioners at leading medical centers like Johns Hopkins. I was given antibiotics and pain medications including opiates, which only provided temporary relief. After years of continued pain, I had to prioritize my health. I switched focus from “dealing with it” to “figuring it out” and found a new medical team to finally get answers.
Can you elaborate a bit on the challenges you faced in getting the right diagnosis and care?
Short medical appointments were frustrating and made it difficult to be heard by busy health care professionals and specialists.
I had a very painful test called a cystoscopy to allow a urologist to look inside my bladder. This test (which is no longer the “gold standard” for diagnosing IC) is supposed to be given with general or regional anesthesia, but my physician didn’t offer anesthesia and his nurses held me down during the procedure because of the immense pain.
When I went to the ER with breakthrough pain, I wasn’t taken seriously and was treated like a “drug seeker.” In truth, I was just desperate for pain relief during a flare. It was disheartening not to be listened to and to be told my pain “can’t be that bad.”
At a certain point, I developed a lack of trust when it came to doctors who didn’t seem to have my best interests in mind. When I go to a new doctor, I feel uneasy and vulnerable. It takes time to develop trust with new practitioners after the way I’ve been dismissed and treated as an African American man.
What treatment approaches have you tried and how much have they helped?
Initially, it seemed like the antibiotics and opiates provided relief, even if it was temporary. I’ve tried many different types of antibiotics. I’ve traveled all over the country for different treatments including pelvic floor injections and physical therapy. I’ve found promising research on steroid injections but cannot find a physician who is willing to administer them. I am keeping up hope and have spent endless hours researching options and clinical trials, even bladder transplants.
How has interstitial cystitis impacted your quality of life?
This disease has significantly impacted my quality of life. After many years, my pain and symptoms got worse, including more severe pain and burning when using the bathroom or during intercourse. It now feels like a huge traffic jam down there. It feels like nothing can get through.
I’m a very social person, but I have withdrawn from everything. It has soured my relationships with family and friends. It’s affected my job and my ability to advance in my career.
Do you have any tips to help others who are seeking diagnosis and care of their IC/BPS?
Surround yourself with a medical team you trust and that is willing to listen to you. As a patient, you are in a vulnerable position. It is important that professionals are open to your treatment ideas that there is enough time during the appointment for a complete discussion. Don’t be afraid to change healthcare professionals to find the right fit.