Emily May, my cousin, is 27 years old and has suffered with signs and symptoms of overactive bladder, IBS, and GERD for more than half her life. She was diagnosed by a Urogyn Specialist at age 15 with Interstitial Cystisis. Like so many others living with IC, it took doctors years to figure out what was wrong with her, but even though it was a super frustrating time in her life, she eventually found a great doctor who listened to her symptoms and knew what tests to do to validate the current state of her bladder. The specialist identified scarring and ulcerations amongst other abnormalities constant with interstitial cystitis, vestibular vulvitis and vulvodynia. She exhausted many treatment options, had several surgical procedures: presacral neurectomy, pudendal blocks, cystoscopies with hydrodistention, Botox and hypogastric plexus block. While the hypogastric plexus block temporarily made the pain subside, the neurologist overdosed her on the injected solumedrol steroid which inducted Cushing disease. This complicated things further. Bladder installations caused a UTI every time it was done (even in the office using sterile technique). She is a very determined young woman and decided she would NOT let IC win. While most of her journey was unconviental she was determined to continue changing medications, performing installations, doing pelvic floor physical therapy twice weekly, hydrotherapy, external TENS stimulation, epsom salt flotation therapy and finding a cure as she was unable to work due to her IC for several years. Her persistence paid off when she received a double permanently implanted Medtronic interstim machine. She had relief in all of her symptoms (frequency, urgency, hesitancy, pain, etc..) this allowed her a first glimpse of remission. Unfortunately, 7 months later due to complications, the machines were no longer working but she further advocated for herself and was referred to a doctor who works closely with the Mayo Clinic. The doctor revised her previous Medtronic interstim machines via surgery and implanted a new Medtronic device. She now has the Medtronic Intellis platform: spinal cord stimulation which was just implanted within the past month. We are praying for a good outcome for our warrior. Thanks to Medtronics advanced technology she was able to work two jobs, and pursued her passion to become a nurse educator. She is just finishing her Masters and is planning on getting her doctorate in nursing practice. Her message to everyone suffering is:” Don’t give up, the best is yet to come.”
She is by far my hero. Love you Em! xoxo
Please join my team and help bring awareness and future treatment to IC!