Brandee Loftus
Contributor
January 28, 2022, was the day my life changed forever. I never realized going to the bathroom without being in pain was something I took for granted, until it became something I dreaded doing. My first flare lasted for about eight hours. I remember thinking: “oh, it’s just a UTI. I’m sure it’ll go away soon,”— the famous last words of a fool!
A Urinary Tract Infection (UTI) is an infection in any part of your urinary system — kidneys, bladder or urethra. Symptoms usually involve pelvic pain, pain with urination, blood in urine, nausea, vomiting, fever, and so many more. If any of you have ever had one, I am truly so sorry for the pain you felt.
After about six hours of this pain during my first flare and crying in the shower — on the floor — feeling utterly helpless, I drove myself to urgent care. Sadly, when it comes to a UTI, nothing can cause immediate relief, and I knew that. I’ve had recurrent UTIs, but this was my first one of the year. The doctors prescribed some antibiotics; I took them for a few days, and it went away… for about two weeks. I was so glad to not be in pain and be able to resume activities and not have to worry. On the 15th day, it came back — but this time, it never left.
A few months went by and I still couldn’t find a way to manage my pain. I would constantly cry and sit on the bathroom floor because nothing would give me any relief. I tried everything under the sun — medications, heating pads, eating better. Sleep was scarce, and when I did, it was only for an hour and a half at a time. My mind was constantly running and stressing about when the flare would end, when the next one would begin, or if I needed to cancel plans even though they were still hours away. The pain was indescribable. It felt like a UTI. I was sure of it, but with the way it continued, I just knew something wasn’t right.
I went to my primary care physician multiple times and heard a variety of diagnoses they were considering. These diagnoses ranged from ovarian cysts to bladder cancer. Once those words left his mouth, I was suddenly filled with trepidation and my mouth felt dry. All I could think was, how? Cancer? At 20? Sitting in that room alone with my doctor, I had never felt more paralyzed with fear.
My mind began racing, but all I could think about was Erbear. I have an older sister named Erin, who I’ve called Erbear ever since I can remember. Erbear was diagnosed with breast cancer four years ago and went into remission. This past July, on her birthday, she found out that the breast cancer had metastasized to her liver and spine — stage 4. Her prognosis was six to seven months, and the last thing that I ever thought would cross my mind was that I might be getting a form of cancer as well. My sister is still here — the strongest woman I know. Things aren’t easy and there have been multiple trips to the ER, and scans, and everything else, but above all, I am just thankful for every moment I get with her.
After hearing this from my primary care, I went to see a bladder specialist and she diagnosed me with a chronic illness called Interstitial Cystitis. PHEW! Interstitial Cystitis (IC) is a chronic autoimmune disease that cannot be cured, and doctors don’t know much about how to treat it because it’s different for each person. Gee, great. She suggested we start off with some medications and then level up to the next form of treatment if they didn’t work. I was optimistic, but not very hopeful. The reason for my doubt was because I had already tried absolutely everything. My aunt is a doctor in Missouri, so she was able to help me out a little with understanding what medications to try.
To no surprise, those medications did not work. We tried a variety of them — up to eight different ones — and still, nothing. With each one, I tried to feel hopeful that if I gave it some time, it would just kick in. When they didn’t, I felt stuck, almost like I was caught in quicksand with no one around me and no resources to use. Since medication lines didn’t provide relief, the next step was procedures, beginning with the least invasive and working up to the most invasive.
For my first procedure, they didn’t put me under, but used numbing gel and went into my bladder to look around. This procedure was called a cystoscopy. Seeing how the disease had already started eating away at the wall of my bladder, they made the decision to put me under a few weeks later for a separate procedure — cystoscopy with hydrodistension. For this one, they did the same as the first, but blew my bladder up to its capacity, and let it sit while I was under.
Each visit to the doctor ended with “Well, hopefully this will help.” The purpose of the second procedure was to reset my nerves to signal to my brain: “Hey, it’s okay. Nothing is wrong down here!”
We waited a few more weeks to wait for a change, and still, nothing. At this point, I felt like a lost cause. I’ve always taken school seriously, but with my bladder pain always on my mind, it made it difficult to focus. I would do homework just sitting on the bathroom floor or while laying on the ground. I still applied myself and gave my all because I love school and learning. My friends and family knew the pain that I felt, but they didn’t understand, and that is probably one of the most frustrating things to try to get someone to understand. I looked fine, so that just meant I was fine, right?
They began getting used to me canceling plans or saying I couldn’t go because my bladder hurt me. I tried so hard to push myself and to just feel okay. I remember trying to trick my brain into thinking it was all in my head. Then the pain would grow stronger and I cancelled plans because I’d rather be hurting in the comfort of my own home than out in public and pretending to be okay. I tried so hard to stay positive, but these episodes of pain would hit me at random times, and the most inconvenient at that.
Procedure number three was scheduled, and this time, they were going to inject a medication into my bladder to numb the area and allow it to relax a little bit… sort of like Botox, but for your bladder. After this procedure, I felt great for an entire two days. I didn’t remember what it was like to not be in pain all day long. I felt happy and excited! Even though I felt okay, there was still that fear in the back of my head: what if it just hits me again? The third day, my pain resumed. I called my doctor and she said that it meant time for the next level — procedure number four. Dang! Call Guinness World Records, because I think I’m about to set the record with the number of procedures I’m having.
This fourth surgery was more invasive and the most painful by far. They inserted two wire leads into my back with an electrode on the end of each one. I wasn’t put to sleep and I most definitely felt everything. The needle was the thickness and length of a McDonald’s straw and it was inserted down into my spine to tap it. They had to poke around to make sure I could feel it in the right spot, but I felt it in every spot. They threaded the wires with the electrode through the straw needle and made sure they were in place. The wires were taped and sewn to my skin, and connected to those wires was a battery that strapped around my waist. The purpose of this surgery was a trial for something called Interstim.
Interstim is basically a pacemaker for your bladder, and its sole job is to find the disconnect between the brain and the bladder and connect them. I wore this for a week to see how my bladder would react. One side didn’t react at all. The other side did react well. I had to keep a “bladder diary” of how I felt after using the restroom — in pain or not — how the urgency of urination was, the degree of pain, and amount of sleep I could get. I slept okay most of those days — a major improvement from the previous eight months. I decided to think a little about that surgery, because there were pros and cons to it. On one hand, if it’ll help me get relief, why not? On the other, I am only 20 years old. What if it causes problems down the road?
I decided to go see a gynecologist and I am so glad I did. After my visit with him, he told me I had severe endometriosis, which is another chronic illness that goes hand in hand with Interstitial Cystitis. Endometriosis is a disease of the ovaries where tissue is attached where it shouldn’t be. There are not-so severe cases, and then there are cases like mine. The medicine I had been taking for my bladder to relieve pain, way back when, caused internal bleeding. He told me that before I had the surgery for the permanent wires, I needed to get the internal bleeding under control. Bleeding was found in my ovaries, kidneys, liver, bladder, and intestines.
Now we’re all caught up. I have been on a medication he prescribed for almost three months now, and have noticed a slight relief, but not enough to feel comfortable. I still had that paralyzing fear every single time I used the bathroom : “what if it hurts me?” I would avoid using the bathroom at all costs. My biggest fear was going into a “relapse” of going to the bathroom up to 70 — yes, 70 — times a day.
While on this medication, I took note of how my flares acted. Flares used to be sporadically, then became almost daily, to almost every two hours. That’s when I made the call. I can’t live in pain like this. The sudden hits of it and the crying on the bathroom floors and the rolling up into a ball because there’s just no way to find comfort? No, I just can’t. Not when I have plans and my sister to be there for. I have scheduled surgery for the permanent implant of the Interstim. Maybe I’ll be able to conduct electricity with the wires running through me! In just a brief 14 days, I will have a new hope. The goal is that after this procedure, and getting that record title in my name, I’ll be on the road to recovery for good!
