My story began in Ocober 2001, a few short months after getting remarried. I had the pain and frequency for 10 years prior but worked for a OBGYN who told me it was Endometriosis. I went through 3 diagnositic laprascopic surgeries to have the endo removed, adhesions removed, and ovarian cysts drained. I still had no relief.
I was put on Depo Provera to stop my periods for 7 years and still no relief of anything. In November 2002 I was diaginosised with IC and my rollercoaster ride of medications began. We started with Elmiron and Dtiropan wchich caused severe retention and I had to stop it. I then moved on to Ditropan XL, same side effects. I then added Elavil, and Percocets to the mix and had very minimal relief, really not enough to even mention. My next medications added were Oxytrol, Flovent, and Sanctura. I stopped the Depo provera and changed to a monthly patch form of birth control (was pregnant in 6 months on that). Not really sure what happened there.
In November 2003 I had been sick for a couple months vomitting, not sleeping, just pure blahhh. The day after Thanksgiving hubby took me to my favorite restraunt and the smell of everything just about knocked me off my feet. I told hubby to take me to the store – I was buying a test. He proceeded to tell me not to waste that money and I was totally crazy. He said my body was adjusting to all the medication changes. Well 10pm that night I politely handed him BOTH positive tests and he sat speechless.
Ok back to the IC saga. All my medications were stopped and I was allowed to take Percocets only for extreme flares. My IC and pregnancy exsperience was the worst thing I have ever had to deal with. I so wanted to enjoy this and enjoyed none of it. I spent 95% of my pregnancy in a huge ongoing flare and nothing helped. By 26 weeks my flares were causing contractions and vice versa. I was put on bed rest and at 35 weeks passed kidney stones and at this time also lost all bladder control from the weight of the uterus and my out of control bladder. I went into labor at 37 weeks and had a 2 hour drive to the hospital. Since I was high risk delivering locally wasn’t an option. The one thing I will say is pregnancy and IC were a total shock to me as well as my body. I would never have imagined the impact that having a baby could do to my bladder or that it would worsen my IC the way it did. I was so sure that remission was in my future that I could hardly wait and it just never happened.
That brings us to June 30, 2004. My IC was spiralling down hill after this and back on the medication path we went. My Uro mentioned Interstim and I was still not sure this was for me. He told me he would wait for me to tell him I wanted it. By November of 2004 I was calling asking to try this. I had spent months researching and weighing the option. I had a newborn and couldn’t enjoy him and was miserable.
In January 2005 my trial was done and within hours I was so shocked at how well this was working. I made it 2 hours home from the hospital and no potty stops. Usually we had to stop at least 5 times. Two weeks later the permanent implant was done and I have had total success since then. I went from 60+ times a day and 10 times at night to about once every hour and twice at night.
I am so glad I took the extra time and researched the Interstim as I was so negative towards it at the beginning. I could not fathum the cost of this device and the chance of damage, but I had exhausted all other options and was missing everything in my children’s lives as well as dropping away from my hubby. I won my disability for my bladder in July of 2004 after a 2 year battle with them. Other than my pain issues and flares most of the time that I can’t seem to get under control I have gotten some form of a life back.
Leslie
