Mystery Diagnosis

As I have mentioned in previous posts, I struggle not only with bipolar disorder, but with various other chronic illnesses. I have a bladder disease called Interstitial Cystitis aka painful bladder syndrome. Essentially when I am in a flare, it feels like I have a urinary tract infection at all times; painful and frequent urination, severe flank, pelvic, and abdominal pain, along with little control over my bladder. Although when tested, I always test positive for a UTI, even when no infection or blood in urine is detected. Over the past five years, I have been placed on multiple antibiotics to treat my “infection” that isn’t actually there. After three ER visits within a month, severe kidney infection, exploratory abdominal surgery and then finding a very enlarged appendix, and then removing said appendix, doctors alike were troubled and perplexed at why I was in so much pain. As many of you who have battled with invisible diseases, disorders, and illnesses, I was told by several doctors that the pain was “all in my head.”

After persisting to my doctor, they referred me to a urologist. In my first visit at the age of 18, I was surrounded by those who were in their 70’s and 80’s, all staring at me like “How could she have bladder issues? She’s young!” The physician assistant diagnosed me after five minutes of talking to me and doing a brief exam. They took a urine sample and it was the first time in a year that I was tested and didn’t have an infection! She said the presence of white blood cells will always be present in a sample of mine. For the average human, that means infection. For me, unless there is blood in my urine, I don’t have a real infection. She said she had to perform one more test to prove it wasn’t anything else. I reluctantly did the procedure called cystoscopy. Sure enough, results were normal. I was in tears, thinking that I was at square one again. Six months pass, more doctors saw me and said it was all in my head. I finally had the nerve to go back to the urologist to see if anything had changed. She said that I still had Interstitial Cystitis and I could walk away pain free with an in-office procedure.

Reluctant, yet hopeful, I agreed to the bladder installation. Essentially, the doc puts a catheter in my urethra, drains all the urine that I couldn’t get out before hand, and through the catheter, they inject a cocktail of different medications such as heparin (a product that coats the bladder lining), lidocaine, and a steroid for pain and inflammation. The procedure itself was extremely painful. The worst part is in order for the medicine to coat the bladder, you have to hold your bladder for 20 minutes before you can urinate. Besides the extreme urge to pee, my bladder didn’t feel nearly as tense and the pelvic pain subsided. Once I peed, the pain came back stronger than ever. I was in pain for three days just because of the catheter they inserted; the “numbing” agent didn’t do jack shit. But, after day 3, I was able to hold my bladder, not have accidents, and live a semi normal, functioning life. The doctor told me to come back weekly for four months.

After those initial four months, I got used to the pain from the catheter, something I never thought I would say, and those visits became bi-weekly. She prescribed one medication for the bad flares, the meds numb my bladder. The other medication is for over active bladder called myrbetriq, but my insurance won’t cover it, so I can’t take it. She gave me a free pack of 20 so I save it for emergencies. Now I go monthly and her and I have become great friends.

On the verge of giving up…

Although my bladder disease is mainly in remission besides the occasional accidents, I have another issue. I have been vomiting everyday since January. Initially, I thought it was just the flu but then three weeks went by and the problem persisted. I went to the ER for intense abdominal pain and the constant nausea and vomiting. Tests came back normal. Was given IV fluids and anti-nausea meds and was sent home. After the third or fourth ER visit for the same issues plus vomiting up blood, they referred me to a gastrointestinal doctor. They diagnosed me with peptic ulcers in the ER and put me on five different medications. Once I saw the GI doctor, she diagnosed me with acid reflex disease and said I needed an endoscopy to find the source of the bleeding. She also ordered a complete lab workup to see if allergies to food is causing the vomiting and to see if I have lithium toxicity (I use lithium as a mood stabilizer for my bipolar, but there is a fine line between a therapeutic amount and a dangerous one). I was ordered to get my endoscopy the next week, but due to COVID-19, the procedure center has closed for the indefinite future. That was in March.

Two weeks ago, I went to the ER for the fifth time for all of the above plus flank and kidney pain. I was diagnosed with a kidney infection and given antibiotics to fight it off. I have grown intolerant to most antibiotics over the years, so they had to give me an antibiotic that tended to be ineffective for kidney infections. Within the hour of taking the medication, I was violently ill, for ten days straight. I made a promise to myself I was not going back to the ER again until I can get my endoscopy because the ER made it clear that they won’t perform the procedure. That brings us to today, well yesterday 4/25/2020.

I had a bloody, black, tar looking stool along with the nausea, vomiting, and severe abdominal pain. I reluctantly went to the ER for the 6th time because I thought maybe an ulcer burst, causing internal bleeding. They put me on not one, but two bags of IV fluids, started the anti-nausea meds, did the normal blood workup, but this time suggested a CT scan to see if there was anything there that the bloodwork wasn’t showing up, and then doing a rectal exam.

The idea of the rectal exam gave me so much anxiety due to the fact I was raped anally two years ago so anyone going near my butt would hear my blood curdling screams from miles away and would get a swift kick to the head. Luckily that wasn’t needed because all of my test results were normal. Most of you may think “Oh that’s great! Nothing serious is wrong!” But there is obviously something wrong and not having the ability to see the correct doctor to get the right diagnosis is a problem. With COVID-19, there is no sure idea when I will be able to be seen next.

The thing that irked me the most about the situation is the discharge nurse said “We strongly urge you to see your primary care provider as soon as possible unless you’re vomiting up blood or have a black, tarry stool… but we’re here 24/7 whenever you need us!” I quickly replied, “I am having both of those issues which is why I came here in the first place.” She didn’t say much to that. I was prescribed more anti-nausea pills that don’t really work, bentyl, a medication meant for IBS patients to coat the stomach, along with… *drumroll please* ….ANXIETY MEDICATION. Because all of this is in my head, maybe I just need this sedative to calm down and then the issue might go away on its own. Hydroxyzine can be used for an anti-nausea, but it is not high on the list of uses for the drug. Primarily it is an antihistamine, similar to that of benadryl. It is primarily given to kids and teens for anxiety. It’s what we gave the kids in the inpatient unit of the psych ward when they were trying to sleep or were having psychotic episodes. Fuck, I took it as a kid when I was first diagnosed with depression. Still have some left in my pill reject box. Essentially, all that was a giant eff you on the you can leave now, fuck you sandwich.

What now?

Now I am forced to go back to my primary care provider to see what my options are in the meantime before I can get my endoscopy. I can tell this journey isn’t done yet, and won’t be anytime soon.

Til next time,

Dani

One Comment Add yours

  1. Like!! Really appreciate you sharing this blog post.Really thank you! Keep writing.

    Like

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