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Living Life with Interstitial Cystitis


Think you might have Interstitial Cystitis? Someone you know have it? Or do you? Read further to really understand what their life is like. It's not pretty. In fact, it's pretty bad.

Living life with a chronic illness sometimes feels like not living life at all. There I was, Summer 2015. Happy and spending my days on the beach. Working a job I liked with good hours. The love of my life had just asked me to marry him! I had just got my first brand new car. Things were great, better than great actually.

Then, one night I became so bloated (I hadn't ate anything!) that I had to leave work early when I was in charge of a big project. That was so unlike me, but I couldn't even relax or lay down. My breath was heavy and I worried my stomach might explode.

My first guess was food poisoning? Stomach flu? Ovarian Cyst? It went on and on and since I didn't have health insurance I seriously couldn't figure out what was wrong with me. I worried I had Cancer. I worried i'd had an ectopic pregnancy and didn't know it. I worried about everything the internet told me I might have.

How did I get diagnosed? Well that's another story for another day. Today, it's about living with a diagnosis. A horrible diagnosis. You see, I have Interstitial Cystitis. It's also known as Painful Bladder Syndrome, but those who have it basically refuse to call it that. It does not correlate with how awful the symptoms are. Speaking of, symptoms are unique for everyone and I'll list mine here. Let me preface this by saying, I'm serious. I actually have all these symptoms on a daily basis and though it seems extreme and not possible, it's possible. So here goes.

Pelvic Pain - Severe, hurts to sit upright for more than a few minutes. Hard to drive. Causes me to walk with a limp due to severe pelvic pain on one side.

Vagina Pain - Stabbing + Slicing, when I walk too fast, move to much or am having a bad day I will get pains that feel like someone is inside of my vagina slicing it open with a razor blade. I have fell to my knees with this pain.

Burning - Ever had a UTI? A kidney infection? It feels like that all the time to varying degrees. Typically it's a gross, weird burning deep inside. But other times it burns like the gates of Hell. I can't lay still. I can't pee. I can't not pee. I can't get comfortable.

Lower Back Pain - Stabbing, Throbbing, Constant Ache - This happens on and off at all times. Deep throbbing pain that stops me in my tracks. Varying degrees of being stabbed with invisible knives. Makes me nauseous because the pain is so strong.

Cramping - Much like period cramps except your period is nowhere in sight and the cramping is deeper and much worse. Most of IC pain is deep pain. Unexplainable pain.

Urgency to Urinate - YEP! I pee all the time. The worst part is the urgency. I can actually be laying in bed and FEEL my bladder filling up. I kid you not. It is like a slow burn and you can sense it filling. It feels icky and disgusting. It also feels like the most pressure, like you're in a car and the driver won't pull over and you've had to pee for 2 hours. I often feel like this even 10 minutes after I just urinated.

Frequency to Urinate - A person with IC can pee anywhere between 20-50 times a day. Our bladder does NOT like urine. It burns, it hurts, and it's all because we don't really have a lining to our bladder. My doctor did an outpatient surgery where she looked inside of my bladder and she told me "Your bladder is an angry bladder." I wasn't surprised. Full of scratches, cuts, lesions. You try pouring urine, chemicals, etc on an open wound and let me know how it feels. I bet it feels alot like this.

Overall Exhaustion - A lot of people who have IC also have Chronic Fatigue Syndrome. My Primary Care doctor will not diagnose me with ME even though I show all the symptoms. She told me she wants to wait until my exhaustion lasts more than a year. Yeah, Lady, it's been more than 3 years, but okay. Not that you can do anything for ME. I would describe it as not being sleepy at all, but suddenly your body says "I'm done." and all you can do is go to sleep and let your body revive. Sometimes i'm at work and my eyes will start closing. My body seriously feels like it's shutting down.

Thigh Pain - For some reason or another I have pains that radiate down my thighs. It almost feels like I need to stretch, but stretching brings no relief. No position is comfortable.

Nausea - This is one of my most prevalent and worse symptoms. I'm nauseated at all times. Usually its a low grade nausea, but many times a day it rises to a "I'm going to vomit" level. I'll break out in a clammy sweat and my head will start swirling. My nausea comes because my pain is so severe. That's right, I am in so much pain that sometimes I vomit. I figured this out because when I feel like this I've taken anti nausea meds (Phenergan) and only then once the nausea has subsided I realize i'm in incredible bladder pain.

Deep Organ Bladder Pain - My doctor told me once that deep organ pain is one of the worst pains you can experience. It emanates through your body and causes everything else to hurt. It's an unexplaine-able pain in a place that you cannot touch or try to heal. It's a burning, throbbing and screaming coming from inside of your body. To tell you the truth I don't even know where the hell my bladder even is inside my body.

Pelvic Floor and Pelvic Muscle Spasms - Oh yes, the pelvic floor is involved as well. I see a pelvic floor physical therapist to help ease my muscles. Due to the amount of pain I am in, my muscles clench and become extremely tight. When this happens I cannot sit up or walk upright. I seriously have spent time in stores and grocery stores being pushed in a wheel chair because my pelvic muscles are in spasm.

Does this sound like you? You might have IC. I know when I googled my symptoms the IC Network and other IC Websites kept coming up time and time again. I spoke to my then doctor about it and she told me that I was too young to have IC. I kept asking her why I was urinating 12 times at night and 40 times in a day. She did not have an answer. Eventually when her options ran out she told me that I simply had "Pelvic Pain Disorder" and i'd always have pelvic pain. I knew that wasn't a real diagnosis and dumped her immediately. Thank God I did.

Funnily enough I diagnosed myself. I saw a Male Gyno who listened to all my symptoms and thoughts carefully and then told me that he agreed that I did have IC and that we should start some trial meds even though he didn't know much about it. He then forwarded me to a urologist who IMMEDIATELY knew I had IC. Lesson learned, you can't just trust any old doctor. I've now been diagnosed via SURGERY and definitely have Interstitial Cystitis. Sometimes I think about going back to that so called IC Specialist and giving her a piece of my mind. But I won't. I have better things to worry about.

So do you have IC? Someone you love? Someone you know? Cut them some slack. They're seriously trying to do their best, all while hiding a pain that you could never imagine. I'd love to chat with you if you've found my page! And even if you just have a chronic illness... us Spoonies have to stick together right?

XOXO,
Kaleena

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