There doesn’t seem to be a great deal of updated info about Botox for the bladder. I thought I would share my experience so far and spark some conversations and hopefully get more input.
I got my first injections on Monday 3-18-19. The procedure was done in office. My urethra was numbed and lidocaine was instilled about 15 minutes prior to procedure. There were approximately 10 injections. I barely felt the first two; however, the injections after that were quite painful.
These were done by my NP as I see her almost always now instead of DR. Both are great, but I think many of us with IC feel like we are sometimes brushed off or not listened to as well as we expect.
I do feel the procedure was minimized by my NP. It was more painful than I expected. I also began to pass nickel sized clots after the fact. I knew there would be blood but I was surprised at the amount. Peeing hurt for many hours after procedure. Bloody urine and pelvic pain lasted about 18 hours. I drank lots of water as normal but I was supposed to drink more. Everyone of course is different. The NP said no one had ever had clots like I did.
By day three, I felt an infection coming on. I know the drill, get culture and wait. I was in so much pain, I found old antibiotics and took them to hopefully begin to get relief. I also had to take my tramadol for pain.
By by the middle of the night, my urine was only a trickle. By this morning, day 4, I had to self cath. I feel full but I don’t have the sensation of oh I have to pee. I’ve called the Dr and the nurse said it’s all normal.
It’s very frustrating. This is the only treatment I had not tried. I’ve tried all the medications and nothing helped or I couldn’t tolerate side effects. I do take Elmiron. My IC has progressed over the years and I really want this to work. I’ve tried all treatments as in guidelines by AUA (1-4 line treatments).
It it could always be worse, but I’m praying for full recovery.
I am am thankful for this forum. I have found way more helpful info here than any dr has ever given me. Thanks to IC network!
I got my first injections on Monday 3-18-19. The procedure was done in office. My urethra was numbed and lidocaine was instilled about 15 minutes prior to procedure. There were approximately 10 injections. I barely felt the first two; however, the injections after that were quite painful.
These were done by my NP as I see her almost always now instead of DR. Both are great, but I think many of us with IC feel like we are sometimes brushed off or not listened to as well as we expect.
I do feel the procedure was minimized by my NP. It was more painful than I expected. I also began to pass nickel sized clots after the fact. I knew there would be blood but I was surprised at the amount. Peeing hurt for many hours after procedure. Bloody urine and pelvic pain lasted about 18 hours. I drank lots of water as normal but I was supposed to drink more. Everyone of course is different. The NP said no one had ever had clots like I did.
By day three, I felt an infection coming on. I know the drill, get culture and wait. I was in so much pain, I found old antibiotics and took them to hopefully begin to get relief. I also had to take my tramadol for pain.
By by the middle of the night, my urine was only a trickle. By this morning, day 4, I had to self cath. I feel full but I don’t have the sensation of oh I have to pee. I’ve called the Dr and the nurse said it’s all normal.
It’s very frustrating. This is the only treatment I had not tried. I’ve tried all the medications and nothing helped or I couldn’t tolerate side effects. I do take Elmiron. My IC has progressed over the years and I really want this to work. I’ve tried all treatments as in guidelines by AUA (1-4 line treatments).
It it could always be worse, but I’m praying for full recovery.
I am am thankful for this forum. I have found way more helpful info here than any dr has ever given me. Thanks to IC network!
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