My Interstitial Cystitis

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Interstitial Cystitis (IC) as an installment in the “My Diagnosis” series. Getting things back on track here. There are only two more that I plan to write for this series, so we are winding down to the end of this one. What would you guys like to see for the topic of the next series? I’m open to suggestions, just drop it in the comments.

Alright, let’s start off where we always do with an explanation of the diagnosis. Interstitial Cystitis is recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go). Many describe it as feeling as though they have a urinary infection all of the time. Cystoscopic findings show ulceration in the bladder wall. The cause of Interstitial Cystitis is unknown.

I was diagnosed with Interstitial Cystitis after I had to go onto a potassium supplement because my potassium kept dropping to critically low levels. A few days after starting the potassium supplement I thought I had the worst urinary infection of my life. I was in severe pain. But when I went to the doctor my urine came back as not having an infection. This led me to getting a urology referral.

My symptoms were pretty classic for Interstitial Cystitis so we decided to do the cystoscope and hydrodistension to have a look in the bladder and see if this would relieve some of the symptoms. The scope revealed that I had an extremely ulcerated bladder lining. Lucky for me, the hydrodistension was helpful. It didn’t reduce my symptoms to nothing, but it brought things to a level that is managable.

These days, I walk around with a constant feeling of pressure and fullness in my lower abdomen. I have been on a pretty restricted diet for years so there wasn’t really anything left to cull. High potassium foods are a trigger for me, but I can’t really do the avoiding potassium thing. Instead, I focus on trying to spread the potassium out over the day rather then taking it in large amounts at a time. I also try to keep the amount of potassium I consume consistent.

Looking back at my life, I have probably had Interstitial Cystitis for a very long time. I got my first urinary infection when I was a teen and have gotten them fairly regularly since then. They used to diagnosed urinary infections without any lab work; just based on the symptoms. Now, I wonder how many of those urinary infections were actually flares of Interstitial Cystitis. There is no way to ever know, but I suspect that most, if not all of them, were actually Interstitial Cystitis rather infections.

This is a pretty common pattern with chronic illnesses. You deal with something for years and it is treated under various labels or sometimes without a label. Then you finally get your chronic illness diagnosed and you are left reflecting back on all those years with a completely different light. In context of Interstitial Cystitis, I wonder how much damage I could have prevented had I known there was an inflammatory process occurring in my bladder.

There is one unusual thing about my Interstitial Cystitis and that is related to my pain. For most people, the pain is worst when their bladder is full and feels better after they void. For me, my pain is the least when my bladder is full and is the worst right after I void. It can be so tempting to not void my urine because I know that it is going to cause me to have more pain for about half an hour (longer when things are flaring). But in the long run, I know that it is important to void regularly.

Because my bladder literally is always telling me that I have to urinate, it is difficult for me to tell when I actually have a full bladder. Even right after I void, my bladder will report that it needs to be emptied. The only time this signal stops is when I am actively voiding. My personal strategy for this is to void my bladder on a schedule. I simply ignore my bladder reporting that I need to urinate and instead void when it is the scheduled time. I aim for voiding my bladder about every four hours. This number comes from years of trial and error that led me to what time frame produces the fewest symptoms for me.

This is one of those diagnoses that people really under estimate the impact it has on your life. The pain is triggered by sitting for too long, but if I stand or walk too much I will have dystonia symptoms. This means that the best position for my pain relief is to be laying down. That’s not practical. There is a lot of things that cannot be done from your bed and many things that are just harder to do while in bed. Not to mention that laying down all the time comes with a bunch of risks for your health.

The thing is that this effects everything. Having to void my bladder every four hours means that my sleep is being disrupted or I am having increased pain. That’s the choice. If the pain gets too severe, my sleep will be disrupted anyway. Being on a diet to manage a chronic illness is challenging. The diet for Interstitial Cystitis is no different. For me, it means being aware of how much potassium is in my food as this is my primary trigger.

But there are things that trigger my Interstitial Cystitis that I don’t have much control over. When my other chronic illnesses flare, it can trigger the Interstitial Cystitis. And it doesn’t matter how good your care plan is, there will always be break through symptoms and flares of your chronic illness. That’s just how it is. So, even if I am doing everything right to manage my illnesses, one of them is likely to flare and that means my Interstitial Cystitis might flare as well.

There is the reality that stress is a thing. Stress management can help reduce the effect of stress but it cannot eliminate the very real impacts that stress has on our bodies. And there is no avoiding stress. Because having chronic illness is stressful. And have you been watching the news lately? The world is stressful. There is no avoiding that I am living in a time that are two active pandemics while working as a bedside nurse with chronic illnesses. Yeah, that’s stressful.

You know, there is so much about our bodies that we take for granted until those functions stop working the way they are supposed to.

If you want to read more about Interstitial Cystitis, there is a great web site by the Interstitial Cystitis Association that has a wealth of information. You should go check them out. They have a bunch of resources available.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!

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