How I was finally diagnosed

  Although my diagnosis took about a year and 5 different doctors, in the world of IC,  that’s a very quick amount of time.  I have read in most cases some are brought to the brink of insanity having to hold on for 4+ years before receiving any treatment for IC.  My heart goes out to those who are being brushed off because of many Dr.s pre- conceived notions…or lack of notions at all.  Although we are living in such an advanced time, full of once unimagined technology and an opening of minds to more than the physical world around us, not enough of the medical world is educated on Interstitial Cystitis.  Some still believe its only psychosomatic, that people are over exaggerating or that IC doesn’t exist at all.  I have met a few of these professionals and I’m sure some have never been able to find the opposite of them. 

I cant say for sure when I began experiencing symptoms, I have had both mild and severe pain since adolescents which was always chalked up to bad menstrual cycles.  But I do remember waking up one morning to a burning in my abdomen and urethra clear of “that time of the month.” A few years earlier I had asked my Gynecologist if I could have endometriosis, since I had most all of the symptoms.  Her reply without hesitation was a flat out “no.” I remember questioning her black and white answerer wondering how she could be so sure. But of course here in lies the problem.  Most of us trust our Dr.’s and don’t always get a second opinion.  But once the pain had become more severe and she still flat out refused to test for endometriosis, I had no other choice.  For reasons I just cant fathom a Dr. I’d been seeing for close to 10 years was continuing to disregard my severe symptoms. 

I made an appointment to get a second opinion from a Dr. someone had recommended.  I gave her my full detailed history and asked her if she thought I could have endometriosis.  Another Dr. who gave me a black and white answer, despite meeting all the criteria.  This Dr. did however mention the possibility of IC or IBS and referred me to my now Urologist. 

When I went in to see him he decided to perform a bladder distention that day, which would stretch my bladder and show any visable signs of IC such as pinpoint bleeding and/or hunners ulcers.  Well, it wasn’t 30 seconds into the procedure when I starting sobbing for him to pull out the catheter and fluid.  I didn’t know it then but this was a pretty indicative sign of IC.  The ability to withstand that procedure not under anesthesia for someone with IC is nearly impossible. Yet For whatever reason he wasn’t so sure it was IC and referred me back to the gynocologist to investigate other options. 

As I had mentioned this second opinion suggested I see a gastrointerologist to test for IBS.  I did, the outcome only led back to the gyno and to more frustration.  Finally I had had enough.  During all of these Dr’s and tests I had been in and out of the ER with ruptured ovarian cysts sometimes twice a month.  I was tired, frustrated and just wanted to crawl away and disappear.  The pain had gotten so severe I had to leave my job and stay in bed all day.  My friends were tired of waiting around for me to get better and I was losing my mind having my life flipped every which way but right.  On a rare occasion I would be given pain medication to help me cope.  But with no answer and no leads on any diagnosis, the pain medication just seemed to make me more aware of the wall I was backed into. Not to mention having a Dr who was willing to treat pain with opioids was few and far between, although every other medication seemed to lack enough strength to even get me to and from the bathroom.  Even my family questioned if I wasn’t just over exaggerating or just plain crazy.  I was lost and felt completely alone. 

When I finally worked the nerve up to go back to my original gyno and demand she look for endometriosis, I wasnt even sure anymore that I wasn’t just crazy.  But at that point she  couldn’t argue with all the other failed tests I had gotten in the 6 months of searching.  She finally agreed to perform a endoscopy.  I had always been deathly afraid of going “under” but knew it was the only option I had left.  Plus they give you this wonder drug right before they put you under and I swear as soon as it kicks in you wouldn’t care if your house was burning down.  At that point I was fearless of going under any knife.  WELL, low and behold after almost a year of suffering and a stack of Dr.’s bills I’ll  be paying off well into my 90’s, I had endometriosis.  I was elated and angry at my Dr. It was so easy at that  time just to blame her for all of my needless suffering.  But even the joy I found was short lived…

After I started hormones to put my body in a menopausal state, which stopped my cysts from rupturing and the endomeriosis from causing problems, the pain I was experiencing had only improved a small amount.  When I brought this to my Gyno’s attention , learning by then to take me seriously, she came to the conclusion I had IC.  She then wrote me out a prescription for the only availible medicatin for treatment, Elmiron and sent me on my way.  She didn’t refer me to anyone or explain to me that IC couldn’t be cured in few weeks by taking the prescription she had just written out.  She mentioned words like “discomfort” and made it all sound so temporary , I guess my faith in her would continue to be lost.  So,There I was off to see another Dr and rack up another bill which I soon learned could have been avoided 6 months before.

When I went back to see the Urologist who had referred me back to my second opinion, he re visited his notes and suddenly realized that I had the one symptom of IC never to be ignored.  A failed distention due to pain.  I could see that he felt badly he had overlooked that fact.  And although I didn’t understand how that was possible, I was impressed with his ability to admit he had over looked something.  Which, up until that point I had never experienced by the Dr.’s who made the largest mistake of  all, giving 100% answers without any 100% proff.  My uro quickly set up a bladder distention under anesthesia to conclude his suspicions.  I remember the moment before I went into the procedure.  He said- a part of me hopes well find nothing but “a bigger part of me hopes I’ll be able to help you get better” I knew at that moment I had finally found the right Dr. and 30 minutes later I finally got my diagnosis and  someone in my corner intent on helping me over come it. 

Even though I had been brought to the brink of my own sanity by unrelenting chronic pain and a condition that had no known cause or cure, I knew how lucky I was to find a Dr. willing to help me fight to get as much of a life back as I could.   And although there are many things I’m still unable to do, what I can do is more important than it ever was before. With the most important lesson.  If you know deep down that something just isn’t right, never let anyone convince you otherwise.  Never take no for an answerer when no isn’t an option to you.