"I Went from Doctor to Doctor Begging for Help"
My name is Cindy, I am married and have a daughter who will be 16 in August. I was diagnosed with IC in July of 2001, I know I have had it for many years, as I can recall the symptoms as far back as High School. I would go to the bathroom between nearly every class and at lunch time. I often had to get a pass to get out of class to go. I recall going on vacations with my Family and having to go all the time, I never thought any of this was a problem because my Mom always had to go too, so I naturally assumed it was normal. I eventually learned my mother had this horrid disease that I could not pronounce, and she had to go in and have these treatments that made her smell so bad, and, I would tease her of how bad she smelled... I remember driving home and rolling the window down because she smelled so bad of garlic. I could never begin to tell you how very sorry I am for being such a horrible child.
Ok lets go a little further into the future... I got married and had my daughter, I would take my daughter to Great Grandmas & Grandpas, every weekend by the time I was on the express way 45 minutes I had to go to the bathroom and my 2 ½ hour drive often took me 4 hours. In 1996 the doctors insisted my pain was non existent, and it was in my head.. I was in severe pain and finally I broke down and went to emergency room, they took out my appendix at 3am and told me my troubles were over. Then the insurance company would not cover the bill because they wrote it up as elective surgery. Who in there right mind and what surgeon dose elective surgery at 3am?? That was my fight with the insurance co and the hospital.. Eventually 2 years later it was paid... Well I thought my trouble was over, still not linking my Mom and I both having the same problems. I went back to work and everything started back, I lost jobs because I spent quality time in the rest room.
Over the last 3 years.... I went from doctor to doctor begging for help and a diagnosis. My regular doctor sent me to a gyn who told me it was the general doctors problem and the general doctor sent me back to the gyn.. I was then seen by the gyn and I found out I had cervical cancer. I had it removed and get tested every 6 months. She also told my husband that there was nothing further medically wrong with me to take me home and talk to me because I was seeking attention. I was scheduled for one more appt to make sure the cancer was gone and took my Mom with me. The gyn told my mother that your daughter is just seeking attention. My Mom said what is the possibility of my daughter having IC . The gyn told my mother that she highly doubted it, ask my general doctor for a referral to a uro. I went to him and he flat out refused and told me that there was nothing wrong with my bladder.
Well here we go back to the gyn, and all but begged for a referral, I was granted one. I went to the uro and was given and in office cystoscopy and he told me no you dont have nothing wrong with your bladder it looks great. My husband was with me and I just broke out and tears and told him what has been going on and he said he would do a procedure called Hydrodenstion and cystoscopy, but, he knows he would find nothing. Well July 2001, I went in to the hospital and he told my husband your wife has moderate to severe IC, and her bladder under sedation only hold 350 ccs.
In September 2001, I went to My moms uro, after an insurance change. That is where I met my wonderful uro. He is in the top 10 of the best IC Specialist in the United States. He has treated me wonderfully and suggested a device called the interstim. I thought no way. Well, as the last couple years that have gone by, I have been diagnosed with Fibromyalgia, Myofascial pain syndrome, Sacralitis. I decided that peeing 30 times a day was really getting on my last nerve and I filled for disability and was approved. I then spoke with my uro regarding the Interstim and he explained it to me. I researched for over a year and decided that is what I wanted to do. So April 2, 2003 I had my stage trial and it was a great relief, I was amazed.
On April 16, 2003, I had my Implant of the device and have had great results with frequency and urgency. My frequency has gone up, but as long as the horrid urgency I had doesnt come back I can deal with voiding 12 to 18 times a day. It's still better than the 30. Since I have had the interstim I was diagnosed with Pelvic Floor Dysfunction, slight curvature of the spine, my tail bone is restricted and in the wrong spot.
My Interstim story:
Where do I begin. It took me a year to decide to have the interstim done. I took a lot of time to make a very large decision that would affect my life greatly. I did a lot of research on having a device put into my body. My uro (which by the way is my god) is the most wonderful man that walks the earth. He explained to me and my husband in detail of what would take place during stage 1 and stage 2 surgery. There were no questions that lingered in my mind after I had left. I was clear on all the details of everything before I left his office, including pre surgical insurance information. I had taken in a list of questions with me that were all answered.
On April 2nd, I had the stage 1 surgery done. I met a rep from Medtronics. She explained everything to me in detail and was wonderful. That is where they put in the wires inside my body. My muscles and my nerves did not respond (even with the device turned up to the highest level) and, they had to end up putting the leads in by x-ray. My uro was upset by this and only had the hopes that I would respond to the interstim after surgery. The incisions were fairly small,one above my tail bone, one on my right butt cheek, and then ran the lead to the other side and out my right butt cheek (sorry didn't know any other way to explain this). I had a 3 foot lead out a hole there in my butt and was connected to the grey box. After surgery I was very, very numb.. When I voided I could not feel myself wipe, that lasted for about 3 hours after surgery....
April 3rd, I turned myself on , and felt the pulsating of the interstim in my rectum. When I laid down, I felt it in my butt and lower back. At first it was not even on 1. As the days went on I got it far up as 2 - 2 1/2..tops as my body adjusted to the pulsating and the anesthesia wore off. My voiding went from 21 to 30 down to 7 to 10 times a day. Oh my god, what a difference and a relief. My stage trail lasted two weeks.
April 16th, back to the hospital where I met with my rep again and again explained to me all about the interstim device and my remote, antenna and magnets... everything. She was very informative. They re-opened the incision on my right cheek and implanted the device. I went to the hospital at 6:30 am and returned home by 11:15 am. It went very well.
April 18th, still sore as expected for what I have been through. But all is grand and I am doing well. If you are thinking of having interstim done don't hesitate to ask me any questions.. I had no problems and am recovering very well. Today Feb 2004, still having great success with my interstim and would do it all again with a second thought.
Hugs to all
Revised: 3/01/05 - kj
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