History of Present Illness
In my earliest memory I am lying on my back in a hospital room; my eyes are squinted shut because the overhead lights are too bright, but they open a little wider when a male doctor leans in over me. They catheterized me for a UTI, I didn’t know why. I was too young to realize there was something wrong with me, too young to understand why no one else in middle school was in pain when they drank root beer, too young to question it, too afraid to burden others with my pain and too naïve to think that adults would always help children.
Once puberty hit, the UTI came back, but not the infection, just the symptoms; frequent urge to urinate, pain when urinating, bladder pressure, etc. During early high school,I was going to the bathroom before and after every period between every single class every day and could anticipate my crying fits in the same stall on the hour every hour. I was old enough to help myself now, old enough to drive, and that’s when I finally started to see a urologist who introduced me to the term Interstitial Cystitis and told me it was uncommon to see it in women (girls) my age.
She had me do voiding diaries and put me on drugs that gave me violent nightmares of being brutally assaulted and murdered. I went off the drugs and focused on my new diet regime. No acidic foods, no spicy foods, nothing too salty, nothing too sugary, no artificial sweeteners, no coffee, no alcohol, no root beer, no cereal, no strawberries, no pineapple and mushroom pizza from Tony’s, no mango lemonadef rom Auntie Anne’s, no Red Bull infused drinks from Sheetz.
I had a procedure called a cystoscopy when I was freshly 17 to confirm the diagnosis I had already become well acquainted with. During a cystoscopy, they knock you out and shove a camera up your urethra to see what’s going on inside your bladder. My procedure notes reported my bladder to be 70% covered in glomerulations, whichare hemorrhages in the bladder wall, and a main component of IC. The surgicalconfirmation didn’t do much besides solidify the fact that what I wasexperiencing was not just in my head, to others more than myself. It didn’t dowhat I wanted it to do, it didn’t tell me why, and it didn’t tell me how to getrid of it.
Unfortunately, I quickly came to learn that the root cause of Interstitial Cystitis is unknown and it has no cure, so I put on a brave face and attended all of my appointments pretending that I was an adult in control of my health and that I was an adult and it didn’t bother me. Adult still might have been too young of an age to pretend to be; I was the only single teenager in a room full of elderly individuals with their life partners helping them back through the waiting room door. Things became easier to manage when I did start to grow, as much as they could be over the next six years, until I got another UTI whose bacteria was killed with antibiotics but whose pain refused to dissipate.
Two months after trying and failing to deal with the residual pain, I made an appointment to have another cystoscopy done in April of 2021. The lead up to the surgery was fairly normal; my dad drove us into the office early the morning of because apparently I still “wasn’t allowed to drive after coming out of anesthesia.” We filled out some paperwork, I put on my hospital bracelet and gown, and took pictures of the waiting area like I always do. The doctor came in and talked us through the procedure but if I’m being honest, I can’t remember much of it now, but I’d been through this before so I couldn’t imagine it being much different.
I gave my phone to my dad before going into the operating room and felt weird walking across the linoleum with only socks on. I trekked to the operating table which sat oddly like a pedestal for me in the middle of the room. Maybe this is something I do asa way to help with the fact that I feel like the frog in a high school science class a lot of the time, but having surgery makes you feel like a superstar; there are all these people preparing you and making you the center of attention and asking genuine questions about your life that aren’t actually genuine but to keep you talking while the anesthesia starts to kick in. But maybe that’s just a me thing so I can avoid thinking about how terrifying it is to be knocked unconscious with your legs up in stirrups while your practically naked body is out in the open.
Based on the timestamps of pictures from when I was about to head in for surgery to the selfies I took in my dad’s car on the drive home where I look incredibly high, the procedure was very quick, only two hours had passed by the time I got home and immediately fell asleep and woke up two hours later feeling like I had actually returned to earth but was also confused as to why I still had the EKG pads on my chest before I remembered that even while I was still blitzed out of my mind I asked the nurse who helped me get changed back into my clothes if she would just leave them on because I knew I would want to use them for my art. Typical.
A few hours later, my dad came by the house with my favorite gas station food and I walked outside to get it from the car and he was asking me how I felt and I was saying my bladder and urethra still hurt a bit but explained to him that there was this pain in my lower abdomen right beneath my belly button but more on the outside than inside, almost like the muscles right underneath were sore. He said, “That makes sense, they did cauterize you,” and I stood on the sidewalk in my socks holding my container of fried chicken and said, “They did what?”
At some point after I had woken up, the surgeon came back in and talked about what they did, but how the hell was I supposed to remember or make sense of anything when I had just come out of anesthesia? They saw that the inside of my bladder was still so damaged and covered in hemorrhages that they stuck this little wand up there and zapped all the bleeding and broken blood vessels closed. I tried not to think too hard about why they didn’t do this during my first cystoscopy.
The next few days things didn’t really start to feel better. At all. I’ve had a cystoscopy before, I’ve recovered from a cystoscopy before, something wasn’t right about this one. My bladder felt like someone had run every side of it over a sand belt, thrown it into a meat grinder, doused it in vinegar, and put it back. It felt like someone had thrown me over each banister in the stairwell of a hundred story building. But my urethra, my urethra hurt in such ways that I cannot even think of the words to accurately describe how it truly felt.It was burning, it was stabbing, it was aching, it was sharp and it was dull and it was all of the above and every single movement made it hurt worse. There was not a single position I could sit or lay in that didn’t add additional pain; it hurt to walk, it hurt to bend down, it hurt to go up the stairs and sit down on the toilet, it hurt to breathe because even the smallest of movements of any part of my body or muscles triggered pain in my urethra that shot up to my heart and down to my toes. Going to the bathroom only made it worse. Every time I had to pee, which was quite frequently given the circumstances, it felt like my urethra was on fire; it felt like I was pissing gasoline and that there was an entire reservoir of buildup stuck in my bladder that couldn’t come out. It felt like someone had taken brass knuckles covered in acid and beat me between the legs for days on end.
I couldn’t sleep because I was in so much pain; I’d lie awake crying until 4 a.m. most nights because the pain kept me up until I was too physically exhausted to bear being conscious anymore. I kept a 168 degree heating pad between my legs 24/7 with only underwear as a barrier between it and my body. There was no auto shut off on that piece of heated plastic with a flimsy buttoned cover on it, it stayed on overnight and it was the closest thing I felt to any kind of relief.
Eight days after my procedure I went back to the urologist to try and find some answers but allI was met with was a positive urine dipstick for bacteria and a prescription for antibiotics but nothing to help with my pain. I had a hunch that this was more than just an infection, but I graciously took the medication until the culture came back from the lab and confirmed I didn’t actually have an infection, and no one was able to tell me where my pain was coming from.
Things got worse.I started to pee out small brown bits which I thought were kidney stones until enough online research through teary eyes determined they were the scabs from the cauterization falling off. I also started to pee blood, not just blood, blood clots, and I don’t think I need to explain the feeling of passing a blood clot through your urethra for you to understand how unpleasant it is or how horrific it is to see bright red in your toilet when it is not that time of the month.
The doctors still had no answers or a treatment plan for me and refused to prescribe me pain medication and I was so desperate at this point that I trudged to Walgreens and bought fucking KY male desensitizing spray because it had lidocaine in it because the doctors kept refusing to give it to me and I sprayed it on my urethra but instead of if going numb it started to feel tingly and I got in the shower and washed it off as fast as I could because I was worried it was going to make something worse.
On my twelfth day of “recovery,” I passed a huge blood clot and just lost it. I lost it to the point where I moved in silence through bloodshot eyes, packed up a bag of medication, and drove myself to the emergency room. I walked into theER to a digital sign in screen but the waiting area appeared practically empty so a nurse hanging around the desk asked me, “What’s brought you in today, dear?” and I broke down crying and said, “I want to kill myself.”
I didn’t even have the chance to explain what was going on before the nurse was hastily guiding me through a set of doors and my eyes were still so blurry from the tears that I couldn’t really tell where we were going but as soon as the door closed behind us I turned around to see that I couldn’t get back out and sobered up real quick and told the nurse, “I don’t think I’m supposed to be here,” because I had just ended up in the locked psychiatric part of the emergency room.
The nurse ignored my plea and put me in the sorriest excuse of a hospital room to wait and I’ve calmed down by the time the nurse and a doctor come back around and very eloquently explain that I in fact was not going to kill myself, that I was just in so much pain I was hopeless and didn’t know what else I was supposed to do.I’m very convincing and persuasive when I need to be, and after explaining the laundry list of things that have been happening to my body over the past two weeks, they realized that I wasn’t an active threat to myself, I was just in pain.
HISTORY OF PRESENT ILLNESS
Sarah Rosemary Eckstine, a 22 y/o female presents to the ED with a Complaint of Suicidal
PHYSICAL EXAM
BP: (!)144/103, Pulse: (!)123, Temp: 98.2 F, SpO2:98%, Height: 5’ 7”, Weight: 122 lb
22 y/o female presents to the Ed from home complains of suicidal ideation due to her ongoing urological problems. The patient reports feeling helpless because of her current health situation but denies actual SI or a plan. She has had persisting pain since her cystoscopy 2 weeks ago. She still is having hematuria with some clots and states she may have seen a kidney stone pass. Reports severe pain that is exacerbated after urinating. Patient had aUTI 2 months ago and states that her current symptoms feel different. She denies any abdominal pain, back pain, fever, vomiting, vaginal discharge, vaginal bleeding, or any other relevant symptoms or injuries at this time. The patient was last sexually active roughly 1 month ago. She has never had an STI and her LKMP was almost 1 month ago. She is currently in therapy.
I didn’t actually want to kill myself, but I wanted to die. I didn’t want to be in pain anymore, I didn’t want to have emotional breakdowns every time there was blood on my toilet paper, and maybe the two weeks of barely any sleep and being afraid to eat for the risk it would cause my pain to flare even worse and the sheer exhaustion I felt was good because no matter how much I would have wanted to, I wouldn’t have had the energy to kill myself.
I went through the usual steps: vitals, getting my blood drawn, peeing in a cup, and I think the nurses understood a little bit more of why I would be threatening suicide whenI gave them my bright red urine sample of straight blood. I end up texting my sister that I accidentally got locked in the psych ward and she comes in and sits with me while we wait for my test results.
Urinalysis with Reflex Culture
Component Value Ref Range
COLOR UA Blood Tinged Pale toDark Yellow
CLARITY UA Cloudy Clear
LEUKOCYTE ESTERASE UA 1+ Negative
PROTEIN US 3+ Negative
KETONES UA 40mg/dL Negative
BILIRUBIN UA 2+ Negative
BLOOD UA 3+ Negative
Urinalysis Microscopy Only
Component Value Ref Range
WBC UA 3- 5 0- 2 /hpf
RBC UA >100 0- 2 /hpf
BACTERIA 2+ Negative /hpf
Despite the absurdity of my urinalysis results, the doctors couldn’t give me any idea of why this was happening. The only thing they did was charge me 300 dollars to leave the hospital and make me sign a paper saying they weren’t liable if I did kill myself. The urologist finally prescribed me a medication that made my pee blue and it provided me with enough relief to sit on my four inch mattress pad without the pressure from only my own body weight compressing my urethra and take off the heating pad long enough to realize I had developed thermal burns on both my thighs and lost close to five pounds.
Nothing else was provided to me except the passage of time. It took two months for me to fully recover from a procedure that was only supposed to take two days. I still don’t know what caused that reaction to the surgery; my best guess is they damaged part of my urethra when removing the cystoscope or the cauterization was just too brutal for my already damaged bladder to handle, but I won’t really ever know, and the mental anguish from that is almost as bad as the physical afflictions themselves.
I’ve tried to make my peace with it, be content that in the long run the cauterization was able to help heal my bladder, that I’ve found a mix of diet and medication that allows me to live a semi-normal life, but there are times where I don’t want to be content, I want to be cured, I want to know why this happened and why this happened tome, from the very beginning.
I try to intellectualize my condition a lot, that if I know more about it then I can fixit, that I can become smarter than the doctors who can never tell me what’s wrong, that if I write a research paper about it and get an A then I’ll pass the trial of pain I’ve been subjected to, that if I speak at a symposium my cystitis will have to regard me as the one in control. I think I take “learning” to live with it to the extreme, but maybe that’s why when I work myself down a rabbit hole on the National Library of Medicine website and find instances of sexual trauma as underlying causes that I think for the first time maybe it’s okay to be ignorant to some things. Maybe I’ll be happier not knowing, and maybe there isn’t anything to know. Maybe one day I’ll be able to find comfort in just being unlucky.