My IC story- not quite up to date but close

I will update this area of my blog at a later date. :)

Written: February 15,2011

I am a forty year old woman with Chronic Interstitial Cystitis, Urethritis, Irritable Bowel Syndrome and Depression. I have had the bladder disease Interstitial Cystitis since I was nineteen years old. Interstitial cystitis (in-ter-stish-uhl sĭ-stī'tĭs), or as we call it, IC, is a condition that consists of recurring pelvic pain, pressure and discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go) with or without a bladder or urinary tract infection. IC may also be referred to as painful bladder syndrome (PBS).

IC can affect anyone. More than 4 million people in the US have IC. Between 3 and 8 million women and 1 to 4 million men in the US may have IC. Pain levels range from mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills and is sometimes relieved after urination. Pain occurring after urination may relate to pelvic floor tension and/or muscle spasms. Pain may also radiate to the lower back and upper legs. Symptoms often fluctuate.

When I first started having pain It was excruciating. I went to several urologist before I finally found a doctor who could diagnose me. One doctor tried to tell me it was all in my head. I was really upset that a doctor was saying this to me. I know my pain is very real. The doctor that diagnosed me was wonderful. He did an examination inside my bladder with a very small camera to conclude that I definitely have IC. Dr. Randall told me a way to explain it to my family which made it so much easier for them to understand. He said to imagine getting something in your eye. Your eye would get very red and irritated and without treatment it could get much worse. It could even get infected. That is exactly what the inside of my bladder looks like; red, splotchy and extremely irritated. I also have to deal with muscle spasms. The muscles that control the bladder get knotted, so to speak and then the bladder gets confused as to whether you really need to urinate or not. This causes a lot of pain. I also have to deal with a sensitive urethra. In case you may not know exactly what the urethra is, I will explain. It is the narrow tube which carries the urine out of the body. My urethra tends to tighten up and then I have trouble urinating. Other times my bladder is spasming and I have to urinate every 5 to 10 minutes because the bladder feels full when it is not.

I have good days and bad days. For the first several years my doctor tried many different things. I tried over 50 medications, three surgeries and several urethral dilations where he put a catheter in the bladder to drain the urine and an instrument to stretch the bladder opening. He would also put medication inside the bladder. This was referred to as bladder cocktails. I also gave birth to two children and worked through most of these years. During one of my surgeries I had a medical device called an Interstim Implant put into my lower back. It consists of a battery just like the ones used for a pace maker. The battery has two leads (wires) that travel to the sacral nerve in the spine. The purpose is to stimulate the nerves in the bladder so that the bladder will re-learn how it is suppose to work. Sacral nerve stimulation (InterStim® Therapy) is indicated for patients who have failed or could not tolerate more conservative treatments for one or more of the following conditions: overactive bladder (OAB), Urge incontinence, Urgency-frequency and Non-obstructive urinary retention (UR).

I started seeing a pain specialist when the Interstim failed to work. My urologist, Dr. Randall said that the only thing left for me to do was to remove my bladder. I started crying when he told me that. I told him I was not ready to do that at this time because it is such an invasive surgery and might not even take care of the pain. I had learned this from other women with IC who actually had this done. He had done everything he could do and now I had to learn how to live with the pain. I started seeing Dr. Kemp who is a pain management specialist. By this time my kids were around fourteen and ten. Dr. Kemp tried some medications that he felt might work to help the pain in the nerves. I was trying to work and taking a medication that made me feel like a zombie. Dr. Kemp decided to do a trial run with a pain pump. I had a minor surgery for the small tube that carries the medication to my bladder area. I wore the pain pump for about a week and ½ but the medication that goes directly to the bladder did not seem to help. He decided to put me on a Fentanyl duragesic pain patch of 25 mcgs (micrograms). Month after month I steadily went up on the dose until I got to 100 mcgs. I change the patch every 3 days. The medication in the patch is equivalent to morphine. I have to be on an estrogen patch now also because the pain patches cause me to have hot flashes. He informed me that the cause of the hot flashes comes from the fact that the medication in the pain patch causes some hormones to be blocked. I eventually went to part-time work. I made it 2 ½ years before I just couldn’t work any longer because of my pain. The patch does help some but not a great deal. I am in bed flat on my back with a heating pad at least 3 days a week. If not in bed I am propped up in my recliner watching television or reading.

I applied for social security disability the day after I could no longer work. I did receive benefits after my first initial application. I was on social security disability for five years when I received a letter in the mail stating that I was up for review. During this process social security decides if I am still considered disabled under their rules. Social Security only requested my records from my pain management doctor. I also have a family doctor who see’s me regularly for my Irritable bowel syndrome and my depression. He has me on medication for these illnesses. I am also on a cholesterol lowering medication. I have re-occurring depression. That means that my depression comes and goes. It can also be debilitating. I don’t get out of my house much at all and I have a lot of anxiety. Part from my pain and part from my depression. For some reason social security decided that I am no longer disabled by their rules. I had to send in paperwork for a reconsideration. In the letter SS sent telling me I am no longer eligible for benefits they stated that I had improved since initially receiving benefits. My doctors and I have no idea where they came up with this. Since then my two doctors have written letters to social security informing them that I have not improved at all. If anything I have only worsened. I am now just praying that social security will realize after the letters and my appointment to talk with them (which has not happened as of yet) that they will realize that I can’t possibly work. We will be in really bad financial shape if they deny me again. I am still receiving benefits as of now. I had to send a letter requesting to continue my benefits while I am going through this process. My children are now 20 and almost 16 years old. My son is in college and my daughter is in 10th grade. I am so proud of both of them. They have remained to be great kids though all that I have been through. They help me out whenever they can. I did get to go to a lot of my sons school activities when he was younger but I haven’t been as lucky with my daughters activities. She is very understanding though and spends a lot of time with me at home. I know she will be out a lot more once she gets her drivers license in March of this year. I will be happy for her since she won’t have to depend on my husband or any other family member to take her everywhere. Although I will worry a lot when she first starts driving. I have probably left out several things but it has been 21 years and I can’t remember things as well as I use to. This is my story and I hope that by writing it someone or many people will be more aware of just how debilitating this disease can be. Also I am hoping that when someone has these symptoms they will consider asking their doctor not to rule out Interstitial Cystitis. As for what happens next I will leave that up to God. Thanks for taking your time to read this.

Sincerely,

Kristi E. Dickens