No good, just the bad and the ugly.

Flash forward to the summer of 2009.  I was now 24 years old and one day I went to see my primary care doctor for what I thought was a normal UTI.  I explained to her my symptoms of pain, pressure, and burning and she thought for sure that I did have a UTI  and gave me some antibiotics and sent me on my way.  After about 7 days of taking them, my symptoms were still there.  So I called her and she gave me some more antibiotics, which of course did not work.  So I called her yet a third time and she gave me my third and final round.  When none of the antibiotics even touched my symptoms I called her and was told they could do no more.  I was upset, confused, and like my 12-year-old former self, ignored the problem with the hopes that it would go away.  But it did not.  About 2 months later I decided on my own to see a urologist.  I was never told by my PCP to see one, but then again they were never very helpful.  I later looked at the records from the 5 years I was with that PCP and every time I saw her it was for the same bladder issue.  She never once thought to look at my record and say "hey this person keeps coming back for the same reason, maybe they need more help!"  But I was young and did not put the pieces together for myself, that is what the doctor should have done.  So later that month I decided to go see my urolgist, I had used Dr. Ego for years with my reoccuring kidney stones and did not know where else to go, so I went to see him.  He did some testing in the office, just like the PCP had and told me "you do not have a UTI".  Which of course I already knew!!!  He told me to call back if the symptoms did not get any better and he would do some further testing.  Looking back I wasted a lot of time with these doctors that were more concerned with the bottom line and not my health.  A couple of weeks went by and when I could not take it anymore I called him back and was scheduled for urodynamics in the office.  I was very nervous the day of the testing as many of you IC patients know, this type of testing is not fun or pleasant.  Long story short, he looked into my bladder while I was awake with a scope and told me everything looks fine.  Well everything was not fine, there was something seriously wrong and this jerk was telling me I have Overactive Bladder!!!  He gave me some samples and sent me on my way.  I felt so lost, so hopeless, that once again I did the only thing I knew how to do...ignore it.  Eventually, I thought I had won, my symptoms went away and I was again 100%.  I went about my life like nothing had happened.  I was happy, I was getting ready to marry the love of my life and just wanted to move on.  But that was not to be.  It was the day before my wedding and I woke up to a nightmare...

The Beginning

Yes, that's right.  My name is Amber G. and I have Interstitial Cystitis.  There I said it, IC.  Even typing the words hurt!  This is my story from the beginning.  I was diagnosed with IC on April 23rd, 2010.  I remember the date because I had been struggling for so long with trying to get a diagnosis.  I had been to so many doctors who did not know and some who just did not care.  Although I have only been diagnosed for a year, my IC story actually began 14 years earlier.  I was 12 years old and I was in junior high.  I remember specifically that it was new years eve and I awoke to find that I had wet the bed.  I was so scared and embarrassed that instead of waking my parents I quickly and quietly changed the sheets and went back to sleep.  Never telling anyone this secret.  At school, I started to have to go to the bathroom after every class, never getting any relief.  The pain and embarrassment would keep me in a 2-year prison.  I thought that I could never tell my mom, so I suffered in silence.  I thought that it would get better but it never did.  Looking back I should of told someone sooner than I did, maybe the outcome would of been different. I guess I will never know.  Finally, I caved after years of silent pain.  I told my mom.  I remember being scared to go to the doctor.  My first urologist, whom we shall call Dr. Loving, was a woman.  She was very down-to-earth and easy to talk to.  She did some tests to see what my bladder capacity was and if I was completely emptying my bladder after going to the bathroom.  Both of which were fine.  I explained to her that it felt like I had to go to the bathroom all of the time and she told me that I needed to retrain my bladder. So over the next couple of weeks that is what I did.  I would wait 10-15 minutes after it felt like I had to go to actually go to the bathroom.  And Dr. Loving even gave me a sublinguil to take to ease the pain of holding it.  Looking back I think that it was just a placebo, something to trick the brain.  After a while I felt 100% normal again.  I thought I was cured!!!  I was discharged from Dr. Loving's care and went on with my life.  But little did I know that one day all of my childhood fears would come back to haunt me once again.......