Im going to put my story of IC in a timeline. In future posts, I will share my ups and downs. - February 2009, Hysterectomy, left my fallopian tubes and ovaries. - May 2009, I was diagnosed with IC by the Potassium Sensitivity Test (A brutal procedure) - June 2009 thru December of 2010, I had small flares, nothing really bad - December 2010, I had terrible pain, went to ER, I had no clue it was an IC flare, ER doctor finds a mass in pelvic area, says I need to see my gynecologist immediately. I learn that it isnt a mass, it is my left fallopian tube which is full of fluid, I also learn that this showed up in 2005 on a cat scan. I go round and round with my gynecologist. First, why she didnt remove it during the hysterectomy. Second, can this be my source of pain and not have the IC disease. Another potassium sensitivity test, I think I made her mad, questioning her. She confirms again that it is IC. - 2011, my world turned upside down. I worked for a lady that had 17 animals. I began school in August for medical coding and billing. I did both in the beginning. I ended up having to quit my job because of the pain from IC. - September 2011, I seen a specialist in Winston-Salem. I told him my story and he said he wanted to do a cystoscopy with hydrodistention to confirm that it was IC and not my fallopian tube causing the pain. A week later, he confirmed that it is IC. He told me I had 9 glomerations. He put me on a lot of different medicines. I started bladder installations and began doing them at home. I only missed two days of school. - December 2011, I finished my schooling. My health was spiralling out of control. My disease was progressing very fast. - May 2012, I had my trial for the InterStim (bladder pacemaker) Pure torture at its best. - June 2012, I had the permanent InterStim done in outpatient surgery. I had complications with the healing of the incision. - July 2012 till May 2013, I pretty much stayed in a flare. The InterStim was helping to make sure my bladder was pretty much empty. My health continued spiralling out of control. During this time period my pacemaker came to the top of my skin and it somehow got cockeyed. You could feel the corner of it sticking out and it was causing a lot of pain. - May 2013, I had a revision done on the pacemaker. My urologist put it deeper into the muscle in my behind. My leads that go to my sacral nerves in the bottom of the spine were ok. - July 2013, gall bladder removed, not IC related but I had more pain than I was already having. My flare was wide open. My pain was awful. - November 2013, Another cystoscopy with hydrodistention to check the progression of the disease and maybe give me some relief and possibly put the disease into remission. Thankfully I did not have Hunners ulcers. I did however have glomerations in all four quadrants of my bladder. Urologist said there was to many to count this time. I had severe complications. Severe bladder spasms, I went into retention. I was having to catherize every 4 to 6 hours to get the urine out as soon as possible. I turned up the pacemaker to a very high setting, (very painful), but it brought me out of retention 2 weeks later. - 2014, I have had a kidney infection, several bladder infections, one requiring 3 days of antibiotics (Rocephin) shots all in my right hip and butt area (OUCH) I do not let anyone near my left side because of the pacemaker and the leads to the spine. I also had a procedure called Urodynamics, which was another big OUCH. It basically tests your muscles and the capacity of urine the bladder can hold. I was in retention so basically the test showed that I had no function in the bladder. My sciatic nerve began acting up and of course its on the same side as the pacemaker, so I have not addressed this situation because I am scared of something happening with the pacemaker. In my opinion, I believe it is the pacemaker causing the sciatic nerve to act up. Im not sure what I am going to do about this issue. Im praying it will go away on its own but after 4 months, I dont think it is going to go away. During all this time, I have had my ups and my downs. Unfortunately it is more downs. Im going on my forth month of a flare. It started by a head cold that required antibiotics. I have a very low immune system so the cold had to be treated with a high dose antibiotic. My bladder despises antibiotics. I then had the bladder infection about a month and a half ago. Not only did I have oral antibiotics but I also had to have the antibiotic shots. My bladder is still very angry. Im currently still trying to get the flare under control and I am dealing with the stupid sciatic nerve. Over the next few days, I will be explaining what IC is and going into more details on the procedures. ***********This is my story, every IC patient responds differently to the procedures I have had.
Posted on: Tue, 02 Sep 2014 05:44:29 +0000
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