At 32, Sarah began experiencing UTI-like symptoms. However, she soon discovered that it was a chronic condition called interstitial cystitis. She shares her story of this chronic condition and the treatment plans that finally gave her some relief.
Sarah had always considered herself a healthy woman. She led an active lifestyle, balancing her career as a graphic designer with her love for hiking, yoga, and traveling. However, about a year ago, she began experiencing frequent and urgent trips to the bathroom, often accompanied by a burning sensation and lower abdominal pain. At first, she thought it was just a urinary tract infection (UTI), something she had dealt with a few times before. But this time, things were different. After several courses of antibiotics failed to alleviate her symptoms, Sarah started to worry.
Chronic Pain and Frequent Bathroom Breaks
Sarah’s days began to revolve around bathroom breaks. She found herself constantly scouting out the nearest restroom whenever she went out, fearful that she wouldn’t be able to hold her urine for long. The urgency and frequency of urination were unbearable, sometimes waking her up several times during the night. She felt isolated and embarrassed, unable to enjoy social outings or maintain her previous level of activity. Over time, the persistent discomfort grew into a dull, chronic pain in her pelvic area.
After months of uncertainty, Sarah made an appointment with Dr. James Haley of Cherokee Women’s Health. As a double board-certified urogynecologist, he suspected she had interstitial cystitis (IC), a chronic condition characterized by bladder pain and pressure without an apparent infection. Initially, she was relieved to finally have a potential explanation for her symptoms, but that relief quickly faded when she learned there was no cure for IC—only treatments to manage the condition.
The Diagnosis and Emotional Impact
The diagnosis was a turning point for Sarah. She was both frustrated and anxious about the future. How would she cope with a lifelong condition that had no clear cause or cure? What made it worse was the unpredictability of her symptoms. Some days, Sarah felt relatively normal, while on others, the pain and urgency were so overwhelming that she couldn’t concentrate at work or even leave the house. She had to cancel hiking trips and social gatherings, as she couldn’t predict when her symptoms would flare up.
Over time, Sarah began experiencing depression and anxiety. The constant pain, fear of bladder urgency, and lifestyle changes weighed heavily on her mental health. She felt like her body had betrayed her, and that led to feelings of isolation. Friends and family, while supportive, couldn’t fully understand what she was going through. At times, Sarah wondered if her life would ever be the same again.
Seeking Treatment
Sarah’s treatment journey was one of trial and error. Dr. Haley started her on a regimen that included dietary changes, avoiding common bladder irritants like caffeine, alcohol, and spicy foods. Initially, she resisted these changes, not wanting to give up her morning coffee or her favorite meals. But after experiencing multiple painful flare-ups, Sarah reluctantly committed to the IC diet, finding that certain foods indeed triggered her symptoms.
She also began taking medications like antihistamines and pain relievers to manage her symptoms, but the results were inconsistent. Bladder instillations, where medications are inserted directly into the bladder, provided some temporary relief, but the invasive nature of the procedure made her uncomfortable. Despite these efforts, Sarah still felt like she wasn’t making the progress she had hoped for.
Dr. Haley also referred her to a pelvic floor physical therapist, who taught Sarah exercises to help relax the muscles around her bladder. At first, she was skeptical—how could physical therapy help with her bladder pain? However, over time, she noticed a subtle improvement. The therapy helped reduce some of the pelvic tension that had contributed to her discomfort, though it wasn’t a cure.
Learning to Cope
After months of exploring different treatments, Sarah realized that managing IC would require a holistic approach. She worked closely with her healthcare team to develop a personalized management plan. Along with medication and therapy, Sarah incorporated stress-relieving practices like mindfulness and meditation into her routine. She found that managing her stress played a significant role in reducing the frequency and intensity of her flare-ups.
Though the journey wasn’t easy, Sarah slowly began to reclaim her life. She learned to listen to her body and accept that some days would be better than others. While she wasn’t able to participate in every social event or activity like she once did, she found new ways to stay active, like low-impact yoga and swimming, which were gentler on her bladder.
Living with interstitial cystitis is an ongoing challenge for Sarah, but she now approaches it with resilience and patience. She’s found a support group online, where she connects with others who understand what it’s like to live with a chronic, invisible illness. Her journey with IC has taught her to appreciate the small victories and to be kinder to herself, recognizing that managing her health is a marathon, not a sprint. While IC will always be a part of her life, it no longer defines her.
