It starts with one thing
It ends with another
You believe it will turn out a certain way
And it doesn’t
Falling down and feeling heavy
Back up again
Bitter sweet is a saying for a reason
Why is there always a “but” to life?
I love her, but..
I like my job, but..
I had a great time, but..
I really can’t believe I have to do this, but..
I want to stop eating sugar, but..
I feel like shit when I eat bad, but..
I am proud of myself, but..
I’m an ok Mom, but..
I feel like I’m not living my calling, but..
I know there is a God, but..
I wish I could be more loving, but..
It’s all about hope.
After the horrible doctor experience, I decided I needed to figure this out on my own. I continued to research online and was almost certain what I was dealing with, so I started ordering a bunch of supplements to help IC. Anything that promised to help the pain and frequency. CystoProtek, D-Mannose, Aloe Vera were a few of them.
None of them worked.
I read about the IC diet and how acid effects symptoms. I started buying white chocolate (which I never liked, but I couldn’t fathom going cold turkey on chocolate), low acid coffee, and took tomatoes out of my diet. I was now pregnant with my 2nd son and spent a lot of time researching as my symptoms continued to increase.
I was peeing up to 40 times a day at this point and the pain was constant.
When I had my son by C-section at the hospital my symptoms went away for the first time in the 1.5 years since it started. I was intrigued by this, and wondered if it had to do with the anesthesia, strong pain meds, or antibiotics. I kept a journal and wrote down anything of significance. I feel this is an important part of my recovery and helped me put the many pieces together eventually.
Sadly, the symptoms returned full force once I was back home and off all the meds.
A few months after this I decided I needed to go back to a urologist. I searched online for a female urologist in my insurance group and made an appointment. I felt so much anxiety going in that day, I remember I was shaking worried how they would treat me.
Thankfully this experience was much better than the other doctor. I filled out a long questionnaire about my symptoms and how long they had been going on. I peed in a cup as usual and there was blood in my urine.
The doctor came in and spent time with me asking detailed questions. She left for about 10 minutes and came back with a packet of information for me.
She told me I had Interstitial Cystitis. This was an incurable disease without treatment options that work for all patients.
She said they can do a procedure like a Cystoscopy where they also put fluid in my bladder and blow it up to look at the tissues if I wanted to be sure. Due to the severity of my symptoms she didn’t think this was necessary. She explained this can make the pain worse for a few weeks after, but in some women, it can help symptoms after the initial pain and they come in for these treatments every 3 months. She advised me against it as a first line of treatment. She prescribed by Elmiron (very expensive) and amitriptyline (an antidepressant that is supposed to relax muscles) and said it can take 6 months to work, with a 40% success rate. I would have to be on these meds my entire life and for reasons they do not understand, it can stop working at any point. She explained bladder removal could be a last treatment option if all others did not work. I got a booklet about the low acid diet and she told me I needed to start it right away. I explained I had tried it in the past without success, she informed me it can also take time to work. Apparently, everything takes time to work with IC, if it will work at all.
I left the office feeling sad but at least I finally had a real doctor telling me what I already knew. I went home and started researching the side effects and cost of the medication. I ripped up the prescriptions and decided I would get out of pain on my own and decided I would look into more natural options. Looking back, this was not smart. Anything that can help get you out of pain should be tried with this illness in my opinion.
I had the idea in my mind I would figure this out and heal it, and in a few months, I would be fine. It actually took another 6 years.
To be continued...
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.
“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...
I was 25 years old.
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 her own challenges and healing Interstitial Cystitis. 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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