I’m back with an update, but it starts with a warning. This post will not be for everyone. If you are easily embarrassed or on the shy side, you may want to pass this one by. For the gals (and guys) that are suffering and struggling with Interstitial Cystitis, this is the post for you.
I’ve been having an Interstitial Cystitis flare for almost a month now. Well, the day of my urology follow-up arrived and since I was having an active flare, my doctor offered to do a bladder instillation. I had been in so much pain for so long that I agreed to it. Almost a week later, I question that decision.
For the procedure, I had to remove the bottom half of my outfit, for access to the bladder. Cue my anxiety right there! I’m very much on the shy side and these types of appointments are extremely difficult for me. I have an amazing Nurse Practitioner who knows a bit about my issues, so she takes extra care with me. For the actual procedure, a very small but painful catheter was inserted into my bladder. The urine was drained, then the medications were instilled into my bladder. They used a combination of lidocaine (for numbing), solumedrol (a steroid) and heparin, which is supposed to help heal the lining of the bladder. Let me tell you something… That lidocaine and heparin burned like nothing I’ve ever felt before. I cried. I squeezed my poor husband’s hand so hard you would have thought I was in labor! The instillation only took a few minutes, and the catheter was immediately removed. Even the removal of the catheter hurt me.
It was recommended that I hold the instillation in my bladder for one hour, which I did. When that hour passed I was running for the bathroom, but I was nowhere near prepared for the searing urethral pain that would follow. I screamed at the top of my lungs as soon as I sat down. It felt like I was like peeing glass! I screamed, I cried and I screamed some more. This continued on for the rest of the day. Each time I would sit down to pee, almost nothing would come out. I had searing pain, but not a drop until the next morning and I drank a liter and a half of water as soon as the procedure was over! The pain and pressure in my bladder was worse than any previous flare that I have had, and I’ve struggled with this disease for over ten years already.
The most difficult part of my recovery from this instillation was the emotional effects that I experienced after the fact. I’m still not sure what exactly came over me, but I found myself ugly crying for hours after the first instillation. I say first because I have to go through this Hell every week for the next 6 weeks! I lost it, y’all! I cried over things long forgotten (or so I had thought). This procedure brought up past traumas that only my husband and my abusers know about. I’ve been an emotional wreck all week over this procedure and the next 5 that are scheduled. My poor husband doesn’t know what to do with me this week. He has never seen me so broken up over anything.
This instillation came with the hope of stopping my flare dead in its tracks, but that hope died several days ago. My doctor did say that some people don’t get relief until after the second or third instillation and others only find relief after all six of them. I’m terrified that I’m the latter. My flare has now been going for nearly a month and quite frankly, it got worse since the instillation. Tomorrow will be a week since my first instillation and my urethra still hurts from the damn catheter! I don’t know how I’m going to get through this next one tomorrow! Pray for me y’all!