Living with Interstitial Cystitis

I am a 39 year old female with Interstitial Cystitis. I was engaged to be married when I had my first episode with IC My husband to be and I were watching a movie at his house. It was about 12 midnight and I suddenly had terrible pain in my bladder. I went to the bathroom and had pain and burning. I felt this urgency to urinate but couldn’t go. I was crying because I was in so much pain and the doctors’ offices and pharmacies were closed. Jimmy had a prescription of muscle relaxers from when he hurt his shoulder. I was desperate for the pain to stop so I took one. It knocked me out. I woke up in excruciating pain.

The next day I went to my gynecologist He recommended me to a urologist. The urologist told me I had a PID. This is short for a pelvic inflammatory disease You get this mainly from your partner being with multiple partners. I knew this wasn’t right because I knew my fiancée. I went back to my gynecologist who said “who ever told you that is CRAZY.” I went to another urologist who basically told me it was all in my head. I went to 4 urologists before I was diagnosed through cystopathy. He diagnosed me with Interstitial Cystitis and Urethritis.

Jimmy and I were married about 8 months after this and I was still dealing with this disease. My urologist had put me on several different medications. Nothing had worked so far. He decided to do a surgery and cauterized the lining of my bladder. I think that just made things worse. He started doing bladder instillations and dilations of my urethra. One of many instillations being DMSO. Talk about some major pain. He did this with just a numbing medicine in my urethra. I later found out from other IC patients that they were put to sleep for this.

My urologist sent me to Birmingham, AL to see another urologist He did bio-feedback and hydro distension. This doctor also set me up with a lady who dealt with intimacy issues because of pain in the pelvic area. She gave me some medications to try and the doctor did also but no luck. My symptoms remained the same, burning, frequency, urgency and back pain. My uro was constantly trying different medications and doing bladder instillations. I had to have my husband drive me because I could barely walk after the instillations. I got pregnant and had 2 babies through all of this. I was also holding down a full time job.

Six weeks after having my first child I had gall stones and had to have my gall bladder removed. A few months later I had a hysterectomy in hopes that not only would it take care of my 2 week a month periods; the doctor thought it might help with the pressure on my bladder. I had a tilted uterus and my doctors felt like the pressure from my uterus could be causing some of the pain. It didn’t help with my bladder pain but it did help with taking away my heavy periods. Then hoping for some kind of relief for my bladder I went to the mayo clinic in Jacksonville, Fl after learning about the Interstim Implant online.

The doctor said I was a candidate for the procedure but my insurance would not cover me in Jacksonville, Fl. I went online and found a doctor in Atlanta, Ga. She wanted me to try one more medication before we did the interstim. The medication was amitriptiline. It didn’t help as we thought. She set me up for the trial and it went well. It helped with the frequency and urgency. She decided to put in the permanent one. After having several revisions done to the interstim it never did work. I was feeling discouraged by this time. I had to go to part-time at work and had been on FMLA for the last 3 years.

I started seeing a pain management doctor. He put me on several different pain medications that my body just could not handle. They were methadone, Lyrica, Neurontin, Tramadol, and morphine. Finally he put me on 25mgs of Fentynal in a pain patch. I am now up to 100mgs. I take darvocet for breakthrough pain. I had to quit my job before I lost it. I had used all my vacation time, sick time and FMLA. They had named a bathroom stall at work as my office because I was in there more than at my desk. Ha-ha. Before my urologist retired he had tried me on Elmiron for several months with no relief and had mentioned to me about 5 years ago that I could have my bladder removed. I just burst into tears and said no, I’m not ready for that. Now that my urologist has retired and I have a new one who basically doesn’t know what else to do and my pain management doctor has done all he can do I am contemplating the bladder removal and urethral removal.

It has been a very long road. I have not worked now for 2 years and I am either on the couch or in my bed. I have constant pain. Some days are better than others but for the most part I live with pain. I am really scared to talk with the doctors about having my bladder and urethra removed but I don’t see any alternative unless I continue to live with this pain. The pain patch is not really helping but my pain management doctor feels like it is the best thing he can offer me. I will have my interstim implant removed next month by my pain management doctor. I won’t be going back to Atlanta for this. My next move will be to set up a consultation with a urologist who can do my surgery for the bladder removal. For now I will just pray.