Misdiagnoses and elimination process of a patient with interstitial cystitis (IC)

I have had interstitial cystitis since 1998, but it wasn’t until 2000 that I was diagnosed. I’m a 35-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. I also started having feminine problems such as; frequent yeast infections and what I thought was to be urinary tract infections. It wasn’t until I was 19 that I realized something was really wrong. I was still experiencing yeast infections, urinary frequency and those same 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 with intercourse. At the time I told my boyfriend. I started to see physicians regarding the matter. I would go to the gynecologist to get tested for a uti’s and yeast infections, but to my surprise the medical testing was coming up negative. My boyfriend at the time suggested getting a second opinion. Not only did I get a second opinion, but I got a third opinion. The tests still came back negative. I was having all of the same symptoms, but I began to think I was crazy and so did my boyfriend. Well, I went for a fourth opinion and this time my gynecologist had said to me, “I believe there to be one of two problems.” She said, “I believe you may have a hormonal imbalance and we can try to treat that with estrogen cream.” She then began to tell me that if it wasn’t a hormonal imbalance, she would need to test me for something else. At the time she seemed like she didn’t want to worry me and kept the other condition to herself. She had said “Let’s just worry about it after we check your hormones.” By that time, I was not only aggrevated, 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. So, I tried the hormone cream. It did absolutely nothing. I scheduled an appointment with my doctor. My boyfriend 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. She 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. If you are reading this and you have recently been experiencing any of these symptoms or are recently diagnosed with interstitial cystitis, I encourage you to start researching interstitial cystitis also known as IC. I also want to tell you, this might be scary, but you are not alone. There are many IC support groups. Not only locally, but on social media from people that live all over the world. I encourage you to share this article with family and friends. There are millions suffering with IC and you never know who might be suffering in silence.
Sending well wishes and love,
Erika Lyn MacTinger

Credits photo: exezippdf



Auteur: Erika Lyn
~Your fellow IC sister, chronic pain survivor and writer~

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THANK YOU Erika for sharing and being a voice for all of us ❤️