- What if I am somewhere and my pain hits me?
- What if I disappoint the ones I care about the most?
- What if people just don’t understand?
- What if this causes me to lose my job?
- How can I take care of myself when just getting through the day is unbearable?
Prior to being diagnosed, I lived in constant pain for 9 months. I missed 22 days at work and was in fear of losing the only job I had ever had as an adult. It got to the point where I could not work and I was dependent upon those around me for everything. I had always been able to care for and support myself my entire adult life. I am not good at asking for help or receiving it. During these 9 months, I had doctor’s appointments after doctor’s appointments, 2 exploratory surgeries and still no answers. I was even told that ‘I shouldn’t be in pain’. Well, I was! I was very lucky that my OB/GYN at the time had a past patient who had similar symptoms as I had. She had a hysterectomy to address the pain but once that was done, the pain was still there. She sent me for a bladder study before she considered doing a hysterectomy. Thank Goodness she did! I can remember very clearly waking up from my first hydrodistension, the doctor and my parents standing by my bed. My first words were, “Do I have it?” The answer YES, still rings in my ears. I remember my Mom crying, as I was and my doctor saying, “I will never let you suffer”. What a comfort that was and to this day, he has never let me down.
Little did I know then, that the initial diagnosis of Interstitial Cystitis was just the beginning of the syndrome and ‘buddy disorders’ that go with IC. Since the time of the IC diagnosis, I have developed, Fibromyalgia, Pelvic Floor
Dysfunction and IBS. All which are known to be ‘associates’ of IC. As if 1 wasn’t enough, the IC needed company.
I thought I should include the 2 part video series that has lit my fire......If it inspired me, perhaps it may do the same for you.