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Interstitial Cystitis/Painful Bladder Syndrome Chronicles: Part Two

10/30/2018

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​I was now spending hours online every day researching my symptoms.  I kept coming up with a word I could not pronounce or understand “Interstitial Cystitis”. 
 
As I read about it, I did not want to believe this is what was happening to me.  
 
“Incurable” 
“Chronic”  
“Not easily treated”  
“Doctors do not know cause” 
“Pain as bad as end stage bladder cancer”

 
I did not want it to be IC. I had never heard of IC before this, as many people haven’t.  IC was not very profitable back when I was diagnosed. Typically, the general public only learns of diseases when the pharmaceutical companies come up with pills to treat it and begin advertising.  There were not many pills to treat IC, and what they did have was very expensive with a low success rate.  Elmiron was hundreds of dollars a month, and took at least 6 months to begin to work. You had a 40% chance it would help. As a bonus, your hair can fall out when you take it!
 
I was only 25 years old. I could not imagine living another week with my symptoms, and now I was reading I could live with it for the rest of my life?
 
FEAR.  Fear is what I felt constantly.  

Fear at my constant pain, fear I was a bad mom because of my pain, fear I could not work anymore, fear I could not hide my symptoms, fear everyone would think I was lying, fear I could not find a way out of the pain, fear there was no bathroom when I went somewhere, fear of bad traffic and being stuck in the car.
 
Fear of the life I was losing and the dreams that were being crushed. 
 
I went back to the urologist and told him about IC and what I was reading online.  He agreed to do an endoscopy on me to look for symptoms. This is where they go inside your urethra with a camera and look around for open ulcers and inflammation – the hallmark traits of IC.  
 
Why was I the one telling my urologist about IC?  I had been to him multiple times before this and he never mentioned it.  He kept giving me infection tests and would send me home telling me there was blood in my urine.  You would think after the 3rd or 4th time he would have mentioned something else.  Instead he just kept shaking his head at me.  
 
I went in for my endoscopy appointment in the office.  The nurse had me sit on the chair and lay down with a blue paper sheet over me.  She inserted a numbing shot up my urethra and then told me, “This may hurt a little”.  She proceeded to put a camera up my swollen inflamed urethra while I screamed out bloody murder. 

She had to keep stopping due to my violent twitching away from the pain.

The physical pain was the most intense I had felt up to that time in my life.  I had hot tears rolling down my cheeks and my entire body was shaking in fear.  The searing burning pain in my urethra felt like it took over my entire body. 
 
I later found out urologists put you under anesthesia for this procedure when they suspect IC because of the pain.  Not this awesome doctor!  
 
The nurse stopped and walked out of the room.  The doctor came back in.  He told me I didn’t want to know what my problem was since I couldn’t cooperate.  He said to get my clothes on there was nothing more they could do.
 
I left the office humiliated in massive pain, telling myself I would not ever go back to the doctor.  I felt defeated, alone, and shameful. 

To be continued...

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​Interstitial Cystitis /Painful Bladder Syndrome Chronicles: Part One

10/22/2018

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I was 25 years old.  

​I was young and looked healthy on the outside.  Long blonde hair, slim figure, and clear skin. I was recently married, excited to start my new life as a stay at home wife and mom with my Christian husband.  I had just come out of some very painful dark years due to continuous childhood trauma.  I had a light in my eyes and hope in my heart. Major depression and anxiety were familiar to me, and always had been.  A year earlier I had excepted Jesus as my Savior and made many changes with Gods guidance.  I was excited for my future with God leading my life.  
 
I tried to ignore the continuous bladder frequency that was developing over the year.  
 
I remember being on dates with my x-husband before we were married, I would have to visit the bathroom 5 or 6 times in a few hours.  I knew something wasn’t right, but I was so excited to get on with my new life in Christ, I assumed everything would resolve on its own. We would try to make jokes about it nervously.
 
After all, I was in God’s hands now.  Surely, he would not allow something terrible to happen to me after all the abuse I endured in childhood and subsequent mental illness that resulted. 

Some of the diagnosis I have received over the years before this were:  Major Depression and Anxiety, C- PTSD, That was probably the most shameful diagnosis of all, and has caused quite a bit of damage in my personal life. Attracting unhealthy relationships that mimicked my trauma.
 
I believed it was my sinful ways that caused all this.  I was saved now, and God would deliver me from it all!

I just had to believe in Him, and allow the Holy Spirit to guide me every day.  I had to submit my own will at his feet, and take up my cross.  He would then keep me from harm.
 
I wish it was this simple. 
 
I wish there was a formula to share that worked. Something I could tell you in a neat little 1 page blog. 
 
Do this, then that, and this again, and a little of that, and you will be cured of all pain!  
 
Nope, that’s not what this is about.  We are all very unique and we all need different care.  The key is putting together your own puzzle. I can help you, I can’t do it for you.
 
Even with all these Bible verses I was memorizing and prayers I started to scream out, the bladder frequency increased, more and more.  I was now peeing at least 25 times a day. Then, the pain started. The relentless burning, stabbing, searing, shards of glass.. pain.. in my bladder and urethra.  I was sure I had a bladder infection.  I kept going to the urologist, he would do a dip test and tell me there was blood in my pee, but no infection was showing. He sent me home.  He was frustrated with me. 
 
I was frustrated with me. 
 
Why is there always something wrong with me?  Can’t I finally just have peace? A peaceful body, a peaceful mind.  
 
WHAT THE HELL IS WRONG WITH ME.  
 
God promised me peace if I came to him.  I was praying constantly in the bathroom, in my bed all night because the pain would not allow me to sleep.  I just had my 2nd baby boy.  I was blessed to be able to stay home with him.  The postpartum
 hormone disaster and the relentless bladder pain caused my major depression to return in the worst way.  I had a beautiful home, a husband who loved us, a new healthy baby and I was a depressed anxious mess in constant pain praying for God to help me and show me what was happening.  I still didn’t even know what the hell was wrong with me. The church said it must be caused by the devil, or my own mind!  After all, I looked healthy on the outside.  The doctor said I was fine.. So, I must be crazy or making all this up…

Or NOT.

​To be continued...

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    Author

    Melissa is the Author of Healing Through the Pain How I overcame Interstitial Cystitis. She writes about health (physical, emotional and spiritual) from a vulnerable place, after overcoming Interstitial Cystitis and still battling emotional illness. She is passionate about helping women realize their ability to make changes and move forward from difficult situations in their lives.

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