"You have severe symptoms"

Most people would be horrified if a doctored looked them in the eye and said "you have severe symptoms". I on the other hand was thrilled on Friday when a doctor looked at me and said "You have severe symptoms of IC and your bladder behaves in a way that is not normal for a 27 year old". I was thrilled b/c I have known this for a long-time and have been suffering on and off for a long time and it felt good to hear real medical professional agree with me.

Even though I have had an IC diagnosis for a little while now and a PFD/V diagnosis for even longer, it has been hard to get doctors to take my symptoms seriously until now. Many doctors would say things such as "you have IC  but it's not that bad" or "take Elmiron and you will feel better" (oh if only it were that simple).

Before diagnosis it was even worse. It's hard to pick the worst thing that has even been said to me. It's sort of a toss up between the ER doctor who said "You are making this up to get pain pills" (even though I was in 10 pain and told him that I wanted no pain pills only an answer), the ER nurse who told me I was "banned from the ER for all matters related to my bladder or pelvis because nothing is wrong with me" or the Urologist who called me a drug addict for being on 30 mg of Elavil (a mild old school anti-depressant with a max. dose of 150mg---not even a narcotic). 

After going through all that, it is like wedding bells to hear someone tell me I have severe symptoms. This new doctor has me scheduled for all the tests and procedures I have researched so hard but all other doctors denied me. This doctor gave me the proper referrals for physical therapy. This doctor knows that IC is a real illness. This doctor knows that IC chicks are in their own category and can't just be lumped in with 70 year old men who have slightly overactive bladders.

It's been over 2 years since the first time I felt a debilitating symptom of IC, over 6 years since the first time I had a urine culture come back negative for infection, but still have high WBC and over 13 years since my first severe UTI which only seemed to lead to other issues. But finally, after all this a doctor finally agrees with me that IC causes severe symptoms. So you see, what can be the worst words that one person could ever hear, can be the best for someone else.

You, Your Bladder is on Fire

Many women know the horrible burning and stabbing pain that comes with having a urinary tract infection (UTI).  For most women this probably happens once every two years and gets cured after a few days on antibiotics.  Imagine now feeling like you have a UTI all the time.  That would really suck wouldn't it?  But that's not the worst part.  Imagine there were no antibiotics available to cure your "UTI".  Why?  Because you don't actually have an infection.  Just all the symptoms. For someone with a normal bladder who is reading this, the scenario probably sounds bizarre and miserable.  For someone with Interstitial Cystits (IC), this is daily life.

IC patients have irritated and inflamed bladders.  There is no infection, there is no cure.  IC can strike out of no where.  Some patients have long histories or repeat UTIs and other urinary problems.  Other people may have had relatively normal urinary functions before the on start of these symptoms.

There is a medication called Elmiron that helps to repair the bladder.  With long term use, Elmiron can help some IC patients show improvement in symptoms.  There is also an IC diet (which eliminates acidic food) which also helps some IC folks to manage symptoms.

What is important to remember is that no two IC patients are the same.  Some patients are in constant flares while others have symptoms that come and go.  Some IC sufferers have frequency and urgency as their only symptoms, while others are plagued with a mix of other issues including severe pelvic pain, nocturia, leg pain, pain during sex and the feeling of "battery acid" in their bladder. The list can go on.

Although symptoms vary from person to person, one thing most IC patients have in common is a long road to diagnosis.  There is no one test to look for IC.  It's a rule out condition and many people will go through a laundry list of doctors before finding proper help.  Although women have been complaining of IC symptoms since the 1800s, it wasn't until the year 2000 that IC was taken seriously by the medical community. 

Many people still do not know that this painful and chronic condition exists.  Since we have yet to find what causes IC, ANY woman is at risk.  It is important to spread the word so that women know where to turn should they experience any symptoms of IC.  There are people completely debilitated by this condition.  IC patients deserve a voice.

If your bladder is on fire, speak up.  Another woman will be glad that you did.