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enots1558
09-29-2009, 06:58 AM
Hello, I have been reading the forums for awhile before finally joining and now posting. I have been suffering with IC for a few years but only received the diagnosis in March/April of 09. I am also a severe diabetic with diabetic kidney disease. A few years ago I began having symptoms and saw a urologist whom I believe was on the right track to diagnosing me but he never used the term IC so I quit going to him. My symptoms were intermittent back then and I was also having a lot of bladder infections, which I have had all my life. I had bladder surgery when I was four years old (I am currently 51 years old) and was under a urologist care for years. As I hit puberty and had children my bladder infection were few and far between and then a few years ago the IC symptoms hit me hard but like I said off and on. Then about a year ago the symptoms came and never left. At first I had a bladder infection and I chalked all the symptoms up to that but after four antibotics and no infection but all the pain and symptoms my family doctor sent me to a urologist. He did a cystoscope in his office and saw a red place on my bladder that he did not like and because the procedure was so painful, he scheduled another one with a biopsy at the hospital so he could put me to sleep. This particular doctor did not understand IC apparently and after tons of testing and continual and constant pain, I went back to my family doctor for help with the pain as I could no longer tolerate it on my own and was told I could not take Advil due to the kidney damage (not that advil really helped much)! My family doctor sat down with all my results and she figured out that I had IC. She was empathetic to the pain of IC because she had a family member with it. She prescribed pain pills and Elmiron and I finally began to function again. My husband and I moved back to Florida from Oklahoma, where we had only lived for one year. Once back in Florida, I went to a pain management doctor because that is what you have to do here. The pain doctor took me off of the pain pill Lorcet 10 MG that I had been on and had helped me to become functional and put me on methadone. I had an allergic reaction to the methadone and have never been so sick in my life. I went to my family doctor who put me on a lower dose of Lortab and refered me to a new pain doctor, who I go see today. I am very nervous as I am not sure what to expect after the last doctor refused to take me off of methadone in spite of the reaction. All I know is I want to be more than this terrible diagnosis and the pain it causes every day. I would love to be able to go back to work, which I have been unable to do because of the pain but until the doctor put me on the methadone, I was feeling really close to being functional enough to do so. I am a social worker so I am hoping that I can work while on pain meds, not sure why I could not work in the field in some capacity. My husband works out of the country so I am alone three to four months at a time. I am posting here because I need to connect to others who understand my daily struggles that come with IC.

enots1558
09-29-2009, 07:20 AM
In addition to the IC and diabetes, I forgot to mention I also have had surgery on blockages and recently had a surgery in May to fix a blockage caused by adhesions, my second one. A few years ago I had 6 hernias repaired and doctors saw on a Cat Scan that one of the screws used in the hernia repair looked like it was threaded through my bladder so during the same surgery to fix the blockage, the doctor also removed this screw. The surgeon also told me that all the meshing that was used throughout my intestines had become intwined into my intestine and there was no way to clean the mess up short of removing the intestines.

maryla
09-29-2009, 08:20 AM
Hello and welcome to the ICN. I'm sorry to hear that you are going through so much right now.

My bladder has been giving me fits the last few days.

I too am a Social Worker. I had to stop working a little over 5 yrs ago and go on disability. I had to send all my stuff back to the state. I too would love, love, love to go back to work one day. I miss it horribly.

You sound a lot like myself. I have had bladder problems since my late teens (I'm 53 now)and have been d'x with everything but the correct d'x until a little over 5yrs ago when it all came on with a vengeancd and has never left.

I hope you get some answers with your pain med dr. today. Again welcome and you will get tons of love and support here.

I would write more, but I need to lay down! urrrrrrrrrrr!

hugs and blessings,

enots1558
09-29-2009, 05:29 PM
Mary, thank you so much for response. I am so sorry that someone else understands my pain and what I am going through!! Yet, it is a mixed blessing for me because it helps to know I am not alone. We do seem to have very similar life situations from the long occuring bladder problems to our choice of careers! I hope your bladder calms for you soon!!



Just to update...I saw my new pain management doctor today and thankfully he seemed knowledgable about IC and I am pleased with his course of pain management.

leelee88
09-29-2009, 05:30 PM
Hello and :welcome: To the ICN