My Mom always told me, “Normal is just a setting on a washing machine.” I’m not crazy, though at times I feel out of my mind. That doesn’t mean the experiences I’m having aren’t common in other people too. I have spent the past year […]
Tag: Interstitial Cystitis
Surreal Seriously unreal This can’t possibly be really Happening. Your Interstitial Cystitis is likely Autoimmune. …..Nobody’s used that word before. How’s that? Gut, inflammation, gluten “intolerance” turned into a death sentence. Grandpa asked me if I started living in a homeless camp […]
It's occurred to me that not everyone may know what Interstitial cystitis (IC) is.
I’m going to ask you to imagine an experience. This experience should feel traumatic, scary and overwhelming. Delve into your imagination and envision burning, urgent discomfort. Agony bursts through to your brain’s pain center, telling you there’s knives slicing up your midsection. Your most intimate region and your metaphorical (or real) vagina’s on fire.
A quick trip to the doctor’s office and you’ve got your diagnosis, within a few days. Today, they send you home with antibiotics and the reassurance that there’s a likelihood you’re dealing with a UTI. They don’t warn you that birth control won’t be as effective on antibiotics and they also don’t warn you that your entire gut microbe will be brutally annihilated. They tell you to take the antibiotics to completion and you should be back to normal after that.
You listen. You anxiously wait. Panic builds when the relief you felt was merely brief. Instead you end up stuck in a cycle of medicate, symptoms die down, then flare up immediately following antibiotic regimen, return to the doctor, test for UTI, and repeat.
Fast forward through 6 months of your “new normal,” urgency, burning, throbbing and spasming pain. You’re visiting your doctor weekly, have been for 6 months, asking for more testing as your symptoms persist, however your doctor keeps stating you don’t have an active infection. The last time you see this primary care physician, she explains in order for the test to be positive you have to have enough of the bad guys to test the antibiotics against to make sure they’ll work as some are strains of infection are resistant to certain strains of antibiotics. You’re told, there could still be a small number of active infection present in your urinary tract but all you can do is flush it out. Things like extreme urgency, sharp pain mixed with burning pain along side throbbing achy pain is all you can see or feel. You feel like you’ve finished your bathroom business just to need a toilet again in under 5 minutes day after day. Imagine trying to sleep like this, breath like this, and live like this. Your primary care frowns, tells you she’s unsure what to do for you and refers you to a urologist.
The urologist recommends she see the area, get a visual. Tells you it’ll be painless, shows you the pencil sized scope she intends to use to look inside you. She numbs your private regions with lidocaine and you hold on for the worst torture of your life. Not only do you feel everything, she tells you to look at it. After looking at the lining of your bladder and seeing what can only be described as blisters she retracts her camera and allows you to get dressed. In your now exasperated pain, you receive a diagnosis as she ushers you out of the door. She hands you a slip of paper with dietary recommendations and tells you you have interstitial cystitis, it’s incurable and lifelong. She tells you to take antibiotics and you’ll have to for life.
You’re diagnosed as far as the medical world’s concerned they solved your issue and you’re then left alone to wade through internet research and horror solo. Good luck.
Well that’s how my experience felt. I still have done more for myself than any healer has done for me but I had to. I was forced to accept my diagnosis or self advocate, try new things and attempt to heal. I’m working on that later. This was me leading up to my diagnosis. It’s terrifying and terrible. I was told it was incurable but there are management techniques with diet and the help of my urologist. For now, I was to try a regimen of antibiotics and dietary changes. See (My Monster Has a Name) blog post for more on how it feels to live this life. I have never been interested in medication for life. The problem was all my symptoms persisted and weighs heavily on my mental self. Chronic pain quickly progresses to despondency.
The medical community defines, “Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go).I C may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain,” According to the Interstitial Cystitis Association. As pleasant as all of that sounds, it’s excruciating. All of those symptoms I’ve had. They disrupt your life, your ability to be intimate in a relationship and make you dislike the body you’re living in. A disease that has no known cure, and very little documented on what causes it with even less documentation about where people are successful. This disease has been ranked incredibly painful, and suffers experience pain on a scale similar to that of cancer patients.
According to Lori Smith of Medical News Today, “‘Interstitial cystitis (IC) is a chronic painful bladder syndrome in which there is the presence of pelvic pain, bladder pain or pressure, and urinary frequency or urgency. The pain can range in severity from mild to severe. It affects approximately 4-12 million people in the US alone, most of whom are women. The condition can affect anyone regardless of age, race, gender or ethnicity, however.”
It’s my understanding and adaptation of the meaning Interstitial Cystitis to be damage in between the cells, and the possibility of infection exists there as well. I say that because in my experience, IC is kick started by infections from the gut, settling into the bladder and playing a fun song and dance of destroy! destroy! destroy! The dictionary defines “interstitial” in an ecology sense as “living in the spaces between individual sand grains in the soil or aquatic sediments.” According to the Mayo Clinic’s Definition of Cystitis, "Cystitis (sis-TIE-tis) is the medical term for inflammation of the bladder. Most of the time, the inflammation is caused by a bacterial infection, and it's called a urinary tract infection (UTI).”
Interstitial - between the cells. This is why I don’t always show I have active infections. The infections can live between the cells.
My best assumption is that this fit my body’s throwing requires extra self care, stress reduction and healthy lifestyle changes.
I’ve had some healers tell me that IC is autoimmune, where others disagree. (The AARDA lists it in their autoimmune disease list). Some articles mention trauma as a catalyst or genetics rendering someone predisposed. Foods ingested or drugs can negatively affect various body organs including the bladder. Celiacs untreated, un-diagnosed gut that’s distended, inflamed, permeable can also cause further autoimmune like damage or disease. When the entire system feels pain, is inflamed nothing is safe and everything aches. I know for me it happened after trauma, stress and a series of antibiotics with minimal understanding of health or being healthy. The celiacs realization came after further testing. Either way this condition is one I’m working towards managing, learning from, and healing. It may require permanent lifestyle changes but with loving supportive family and friends I’ll overcome this obstacle.
My palms are clammy. My thoughts race. Electricity crackles in my rib cage rendering my lunges immobile. A voice, I’ll call her Reason, she scorns me, “Suck it up buttercup, you’ve got a job to do.” Reason is telling me I must stay put and work through the discomfort and ever increasing pain.
A hushed whisper whimpers at the back of my mind “You know exactly how worthless you really are.” I’ll call her Despondency. Despondency is here as an advocate of failure and self loathing. She likes to remind me that my circumstances are my own fault and fills me with guilt. She enforces the belief that I am a burden. I’m embarrassed. I can’t breathe all the while my body betrays me. I’m at war with my physical and mental self more often than not. I’m on the losing side. Despondency and Reason always bring with them a cohort of stress, anxiety, and depression in response to one sensation - chronic pain.
Pain sears through me like a gremlin trying to rip its way through my bladder with razor sharp talons. I curse Frank the Fireman as I’ve so casually nicknamed my Interstitial Cystitis monster when it flares. Frank’s looking for an exit but taking his time torching through my pelvic floor. My head aches as I gently wrap my arms around my midsection. Sitting at work I pray the day ends quickly so I can go home and use what self care knowledge I have to try and alleviate any of the pain. Pain being a side effect of Frank’s rage.
“Frank the Fireman is raging today” is about a thousand times easier to say than “I feel tortured as the open wounds in my bladder spasm and lesions grow.” The hardest part of a chronic disease living inside you is the desire to feel understood, the need to communicate and the embarrassing tension that weighs the air thick and heavy between two people when something uncomfortable is the topic of conversation.
You don’t see the agony I feel. The terror the engulfs me every time I put food or drink to my lips. I wait anxiously to see how anything I consume will affect the sores coating my bladder. My sufferings are invisible to you. The battle within my body is unseen but I exert almost all of my energy managing my chronic disease or hiding the amount of discomfort I experience daily. Some days I’m better at coping than others, and on those other days I pray for relief - at times that’s meant praying for it to end, at times I’ve felt desperate and prayed for death. Please don’t give me your sympathy, I require none. What I want is understanding and acceptance as I am day to day. Accept me in spite of my struggles. I don’t want to be ostracized by this disease you don’t understand.
I have interstitial cystitis. I was diagnosed with IC May of 2015 right after I graduated college.I was told to give up gluten, chocolate, alcohol and caffeine. If I avoided acidic food and learned to manage my stress I’d be able to live with this disease but it would require a lifelong management routine of my disease, there’s no known cure. After over a year of diet alone not resolving my chronic infection like state, further testing showed gut inflammation. These results were met with words like celiacs and leaky gut. This war I’m at with my body is barely in it’s infancy. I still don’t fully understand what my body needs to heal and be truly healthy. I’m 29 years old and that’s 29 years of damage I’m working through. Its excruciatingly painful and I’ve never felt more alone.
Some days I’m on top of my self care and I feel closer to ordinary. On occasion life gets too busy and I miss a self care session or say yes to the wrong food, I end up reeling through days or weeks of agony. I have to fight my way back to find normalcy and routine. My social life plummeted as my days filled with destressing techniques, body work for tension relief and other tools necessary to manage my IC.
There’s still days I’m terrified I will spend the rest of my life with Frank’s blow torch igniting a fire between my legs. He eagerly invites Reason with her cruelty and Despondency to bring about shame, with him to any party he throws. I have Perseverance fighting by my side. She guides me through obstacles I face with the strength to endure. I will still have to spread open my legs across table after table as I relay my experiences to healer after healer until I am healed. I spend more of my time alone with my pain than I’d like. I will keep researching ways to return any sense of control back to my life. I wanted to give up. I’m grateful my stubborn nature refuses to allow me to quit and Perseverance is my companion on this lengthy painful journey.
For anyone suffering Interstitial Cystitis or other Pelvic Floor Dysfunctions, here’s a list of resources I found helpful for starting my journey, researching how to survive this experience and heal myself naturally. I’m still on my journey towards healing but I’m optimistic that I can live fully and thrive in life again. If you’re suffering and you’re feeling utterly lonely, know there’s resources and tools to help. Know you aren’t alone. Know that you have yourself, you’re strong and you’re the best advocate for healing you’ll find. Trust yourself.