Please help support Interstitial Cystitis awareness, research and education through the ICA!
My name is Erika Lyn MacTinger. I have had interstitial cystitis since 1998, but it wasn’t until 2000 that I was diagnosed. I’m a 36-year-old woman, but started having symptoms of interstitial cystitis when I was 17. Interstitial cystitis (called IC for short) is a dreadful disease, but the process of elimination is grueling. When I was 17 I started to notice I had urinary frequency. It wasn’t until I was 19 that I realized something was really wrong. I was having symptoms of feeling like I had a urinary tract infection (otherwise known as a uti) and it seemed to be getting worse. I started having pelvic pain, pressure, bladder retention and burning pain. I started to see physicians regarding the matter. Not only did I get a second opinion, but I got a third opinion. The tests still came back negative for a uti. I was having all of the same symptoms, but I began to think I was crazy and so did my boyfriend at the time. Well, I went for a fourth opinion I was not only aggravated, but I was scared and it was putting a strain on my relationship. My boyfriend would say things like, “I don’t understand how all of these doctors aren’t finding anything wrong.” I knew deep down that something was really wrong.
My body was telling me by the horrendous pelvic pain, frequent trips to the bathroom, always feeling pressure that I had to urinate but when I would use the bathroom, I wasn’t voiding more than a little bit at a time. I scheduled an appointment with my doctor. My boyfriend at the time came with me and this time she sat down to talk to us so I knew it was serious. She explained that I might have a bladder disease called interstitial cystitis. She said the only way to tell would be to have a potassium sensitivity test done. During this test, they insert a catheter and insert two types of fluid. They insert water and potassium chloride into your bladder one at a time. They ask you to rate your pain after each solution is instilled in your bladder. My doctor said, “If you feel noticeably more pain during the potassium chloride, then you have this bladder disease. So, I went ahead with this test and sure enough the potassium chloride burned the inner wall of my bladder in a terrible way. My doctor then diagnosed me with interstitial cystitis.
My Doctor gave me a pamphlet that had symptoms of interstitial cystitis. It was every symptom I had been having. It also said that interstitial cystitis had no cure. She brought me a piece of paper with a special diet I was to follow. It was a list of special foods I was to start eating and or staying away from. She wrote me a prescription for a pain killer and referred me to a uro-gynecologist. I will never forget the look on my boyfriend’s face when I was diagnosed with an incurable bladder disease. He then apologized to me for thinking I was exaggerating or these symptoms were in my head. It was a relief to know I wasn’t losing my mind, but it was also terrifying to know I now had this illness that I was facing. This was only the beginning of my journey with this disease. I have had countless surgeries and treatments with little to no success. Interstitial cystitis has affected every aspect of my life from my relationships with friends and family, to my career and my ability to attend college. IC is extremely painful and is compared to that of a kidney dialysis patient or a stage 3-4 cancer patient. Therefore, it makes things like grocery shopping, cooking, working and simple tasks of daily living very difficult. I live in pain EVERY SINGLE DAY. There are millions suffering with this disease and we all have one big thing in common and that is to find a CURE.
I’m choosing to donate to the ICA which is a nonprofit organization for IC patients and family members. They have advocacy, education and research for interstitial cystitis. This year I’m doing my part to help raise funds for ICA, because I am passionate about this cause. ICA is the only non-profit charitable IC organization in the US dedicated to improving the quality of healthcare and lives of people living with IC. ICA relies entirely on donations. You can build hope for IC patients by making your generous donation today! Help me help others who suffer with IC!. You can learn more about the ICA at https://www.ichelp.org/. Thanks in advance in your effort to help the millions that suffer with this debilitating disease. Your contribution is greatly appreciated!
Erika Lyn MacTinger
~Your fellow IC sister and chronic pain warrior~
If you think this page contains objectionable content, please inform the system administrator.