Not All IC Patients are Created Equal

It's hard for non IC patients to understand what it is like to have IC because not all IC patients are created equal.  All IC patients have bladder inflammation not cause by an infection, but all the other aspects and symptoms can vary.  Some IC patients may pee three times per hour (this may seem like a lot to a non IC patient), but other IC patients may pee up to 16 times per hour in small amounts (this is not an exaggeration, some patients go through this).

A lot of IC patients may experience pelvic pain which makes sex difficult or impossible.  Other IC patients may have sex just fine most of the time.  Some IC patients hurt the most when the have to pee, while other other patients hurt the most as  they are peeing. 

The IC diet is another mystery of the IC world.  All IC patients are encouraged to go on a low acid diet, but how strict one has to be on this diet depends on the person.  Some patients must follow the diet to a tee day in and out or they will go into an IC flare. Other patients may be able to eat a lot of "normal" foods, but have one or two trigger foods that they must avoid or their bladder will flare.  If you know someone with IC you may be shocked to see them munching on a piece of pizza since tomato sauce is a big no-no for many ICers.  Your friend may feel just fine eating pizza, but go through hell if they go anywhere near a cup of coffee.  A lot of IC diet changes come through trial and error.  Caffeine and liquor should be avoided or limited to IC patients in general since these things can be harmful to even a healthy non-IC ridden bladder.

Treatment for IC also varies.  Some patients will respond well to Elmiron, the only official IC medication.  Elmiron does not work on all patients and others may need to try a combination of low grad anti-depressants, bladder installations and prescription pain killers. 

IC patients also go through flare phases.  Some people may flare constantly to the point where they seem crippled, where other patients may seem perfectly fine one day and be in intense pain the next.  It is perfectly normal to have good and bad days when you have a chronic condition.  Many non-chronic pain patients do not understand how a friend can be out leading a normal life one day and curled up in bed in pain the next.  Just because your friend's symptoms are not constant doesn't mean that they are faking or exaggerating.  Not all IC patients are created equal.

You know you suffer from chronic female pain when...

Pain is no fun.  When you suffer from chronic female pain, you have to adapt your lifestyle to deal with many unfortunate issues.  I hope that other ladies can find some familiarity, comfort and a little humor in this list.

You know you suffer from chronic female pain when...

-It no longer phases you to bring a seating cushion to restaurants.

-You have no sympathy for those women who think they understand what it feels like to have IC because they had a UTI once during their freshman year of college.

-You have put ice packs and heating packs in places that other women wouldn't dream of.

-You have had to give up a favorite food or drink for the sake of your health.

-You are under 50, but have an "old lady pill box", potentially with more medications than your 75 year old relative.

-You have contemplated submitting your story to Mystery Diagnosis.

-You are the reason that your family or group of friends has to take a ton of potty breaks on a road trip.

-If there are less than four rolls of toilet paper left in your linen closet you will have an anxiety attack. 

-You have been the person to explain to strangers that their body does indeed have a pelvic floor.

-You have had a conversation with your bladder.

-You have been laughed out of the ER.

-You have left a doctor's office crying because someone told you "the pain was in your head".

-You're too nice of a person to wish this kind of pain on your worst enemy.

-You are thankful for any loved ones who believe in you and support every step you take in life.

-You have peed neon orange or blue before and you are pretty sure you are not an alien.

-You feel like smacking people who think you have a UTI or a back problem.

-You get frustrated when people ask you if you are "better yet", even though you have explained to them 10 times that your problem has no cure.

-You consider the phrase "but you look so good" an insult.

-You are glad I posted this list, because you thought you were the only one who had to deal with these things.

Be Your Own Advocate

There comes a point when we all need to stand up for ourselves. For people with invisible pain, the fight for a doctor who will take us seriously can be scary and long.  The entire story would be too lengthy to type here, so I will just bring you to my breaking point.

In addition to several other doctors and two ER visits that I had been to for my chronic pain, I had been to my regular gyno office three times already.  Although I told them I was in 10 pain to the point where I couldn't walk or sit, they would never even let me see the real gyno and made me see the same nasty nurse practitioner.   She was so full of herself and yelled at me when I tested negative for a yeast infection because she didn't know what else could be wrong with me.

I knew from all my research and all my symptoms that I had Vulvodynia, but since I had no medical degree I could not treat myself.  I needed help. So I called to make a "consultation" with this same NP.  I told them over the phone I wanted it in an office and not an examination room.

I walked in with papers about Vulvodynia with tears in my eyes.  I sat down in her chair and I said "You listen to me and you listen to me good.  I am in constant pain.  Imagine if someone took a sharp metal object and shoved it into your vagina.  That's what I am going through right now and you are not helping me. 

I think I have Vulvodynia and if you won't help me I want you to send me someone who can. I can't walk and I can't work and I can't sit with out crying."

"I guess this is interfering with your life she said." She handed me papers to a specialist and I went on my way.  The receptionist didn't charge me my usual $30 co-pay for my appointment.  I called the specialist and waited two long months in pain for my appointment.  The specialist was able to help me and I never looked back.  I now get ALL my gynecologic stuff done at this specialist.  I will never got back to the regular gyno.

Dear Insensitive Doctors...

I am lucky that after a long struggle, I am pretty comfortable with my set of doctors. Some of them even go above and beyond and are awesome.  Today however, I was forced to see a doctor outside of my usual set of four. A doctor I did not want to see. It brought me back to a sad time in my life.  This doctor was unprofessional and cruel.  He judged me, my regular doctors and my treatment.  I have fought too long and too hard and come too far to have someone bring me down like this. Unfortunately, I cried in front of him.  I cried not because I am weak, but because there was just no other way to let out emotion when someone is being unreasonable and unsympathetic.  

So I would like to give this message to the world...

Dear insensitive doctors,

You don't always know what is best for someone after meeting them for 20 minutes.  Many patients with rare conditions have to be their own advocates until they find proper care.  Just because we don't have a medical degree, doesn't mean we don't know what is best for our own bodies.  Just because your "textbook" patients respond well to your treatments, doesn't mean that they are appropriate for people with multifaceted illnesses. If you're a doctor of any sort, it is probably good to have some general knowledge on all sorts of conditions.  Using Google in front of me is not impressive. All you insensitive doctors could learn a thing or two from the doctors that listen to their patients.  You could take some tips from the doctors who will run that extra test or research that new treatment to help their patients.  Insensitive doctors, when did you stop being human and start being robotic?  It takes brains to graduate with a medical degree, but it takes a lot more than that to be a great doctor.

Love always,

One of the many people who have been brought to tears by an insensitive doctor

I thought my days of having to deal with insensitive doctors was over, but I guess we never know what curve balls life will throw us next.  It makes me thankful for the doctors that I usually see.  

Today I cried tears.  They were not silent this time.  They were actually quite embarrassing.  But crying this time made me realize something important.  It made me realize why this blog and other personal health blogs are important.  Us veterans of dealing with insensitive doctors can be there for the people who are experiencing these issues for the first time.

If you have been brought to tears by a doctor, know that you are not alone.