When My Doctor Told Me There Was No Cure for Interstitial Cystitis

For months I had been in and out of my doctor’s office and the emergency room. Finally, my doctor decided she had exhausted all of her protocols and didn’t want to keep prescribing me antibiotics when there were no more signs of infection. She referred me to a specialist and promised the specialist would take good care of me.  

I called to make an appointment and was told it would take months to see the doctor, but I was welcome to call and ask if there were any cancellations. I kept calling and feeling like an awkward nuisance. I got lucky and got an appointment sooner, so I went to the doctor alone. My husband, Adam, was unable to take time off work.  

As I sat with the doctor describing my symptoms and she asked more questions for clarification before the pelvic exam, I remember my heart was pounding. I have never been good at describing how I feel, and I have always been afraid that I sound like I’m complaining. I was grateful the doctor continued to ask thorough questions and took some time with me.  

The doctor came back into the room after the pelvic exam and had some paperwork for me. One was to schedule a cystoscopy, and the other was her treatment plan for interstitial cystitis (IC). I remember I kept glancing at the papers while she talked because I wasn’t sure what they were. Finally, I calmed down enough to hear a little bit of what she was saying.

Because this was a chronic and incurable disease, she preferred to start with diet modifications, lifestyle changes and a few herbs that in her experience have helped her patients. As I nodded and confirmed that I had already made the connection between diet and my symptoms, I kept hearing “incurable.” It was like I was split in half — half of me was responding to what she was telling to experiment with and the other part of me was screaming in my mind.

I was screaming things like, “What do you mean you don’t know what causes it?” “What do you mean you don’t really know what will help?” “Why am I suddenly a science experiment?” That part of me desperately wanted answers, not more questions.  

The other part of me was focusing on what the doctor was saying: “There are things that help.” I just had to find out what worked and didn’t work for me. This was the part of me that took mental notes so I could share them with Adam. 

Looking back on that moment a year later, it feels like I was split into two. Part of me stayed in the room to grieve, and the other part of me stood up walked out of the doctor’s office. There seemed to be two options, and I face these options every single day to brace and resist what my body needs or to be receptive and accept what it needs now. 

Lead photo source: Thinkstock Images

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