Today, I’ve decided to use our social platform to bring awareness to a chronic condition I’ve been dealing with for the past few years in hopes to possibly help anyone going through something similar. As photographers, we pretty much live on social media. But it’s also the reason why we haven’t really been as active on social media as we would like.
(Disclaimer: Some of it may be TMI and it’s very personal, I even contemplated sharing this at all, so please proceed with caution.)
In March of this year, I was hospitalized overnight for a really bad UTI (Urinary Tract Infection). I had the classic, albeit, severe symptoms of a UTI: fever, chills, nausea, vomiting, abdominal pain, low back pain, burning urethra… you get the picture. I was treated with IV antibiotics followed by a two week course of antibiotic pills. Thankfully, I made a full recovery and that was that.
Fast forward to May 2020. I felt the symptoms of a UTI again. The pain got so bad that Vic took me to the ER once more. Only this time, a blood test and urine test/culture revealed I didn’t have a UTI. So since the UTI was ruled out, they took me in for an abdominal/pelvic ultrasound and CT scan. The results revealed: NORMAL. They couldn’t find anything wrong with me. They prescribed some ibuprofen for the pain and sent me on my way.
A couple of weeks went by and the pain got worse. It knocked me down to my knees on some days. Simple tasks like getting out of bed or walking became debilitating. Spicy foods, fizzy drinks and sweets were out of the question. Everything from the pelvic area down was so inflamed, it felt as if my bladder was going to burst at any moment. The ibuprofen was no longer working for me so I begged Vic to take me to the hospital again. Bless Vic’s heart. He would wait in the parking lot for me since he couldn’t wait inside the hospital due to COVID.
After hours of waiting, blood and urine tests revealed everything normal once again. This time the hospital prescribed me some Phenazopyridine (the fancy word for Azo) to help with the burning sensation I was feeling. Tears filled my eyes out of frustration as once again, didn’t have an answer. They threw out the term Interstitial Cystitis which is inflammation of the bladder as the probable cause of my symptoms. However, IC is not a diagnosis in itself, rather it is a symptom of something else.
I so desperately wanted to know what was wrong with me since it was not a UTI even though I had the symptoms of one. By this time it’s already June. Over the next few weeks, I eventually met with my PCP, my OBGYN, and an additional 3 urgent care visits and no doctors could give me any answers as to why I was feeling the way I was. I was pretty much left alone in the dark. I was on my own to find the answer.
I turned to Google to do some research. (I know, probably bad idea!) I saw the term “embedded UTI infection” thrown around as a probable cause and did some more research on that. The symptoms of an embedded UTI infection matched my symptoms to a tee! I went down the rabbit hole and eventually found an “Embedded UTI Group” on Facebook. Without hesitation, I decided to join the group and soon realized that there were thousands of women (and men) feeling the same exact, if not similar symptoms as me! I no longer felt alone. That is where I also learned about MicrogenDX, which is a lab that is able to identify 100% of microbes in urine with 99.9% accuracy -more accurate than a urine dipstick or culture test. It even includes an antibiotic recommendation sheet for any bacteria identified. I was sold!
The only problem I came across was that I needed a physician to sign off for the test. Unfortunately, no local doctors wanted to sign off on the test since they have never heard of this lab – I don’t blame them. However, I felt like this test was my only hope to getting an answer. I scrambled to find a doctor that would be willing to sign off on it. Luckily, I got in contact with a sales rep from Microgen and they were able to send me a list of doctors near me that would sign off on the test. The nearest Dr. was 2 hours away from me. Luckily, we were able to do a telemedicine appointment so I didn’t have to travel to see him. The doctor was happy to help me and had already been using Microgen to diagnose and treat his patients accordingly. I ordered and took the test and shipped it back to the lab and waited. Finally, after a few days the results were in. I was shocked.
It was revealed that I had a HIGH load of bacteria. In other words I, in fact, did have an embedded UTI infection. A total of 2 bacterias were actually identified: Enterococcus Faecalis and Pseudomonas Aeruginosa. You would think regular urine cultures would have tested positive with such a high count of bacteria! It was embedded (which means the bacteria can hide under biofilm or stick to the bladder wall) so that explained why the previous urine and blood tests were not able to pick up on it.
According to Live UTI Free, “Despite being the global standards for UTI testing since the 1980s and 1950s respectively, both of these tests are extremely inaccurate.”
This tells me that something desperately needs to change! Urine dipsticks and cultures can be highly inaccurate, so I had likely been treated with the wrong antibiotic all along during my initial hospitalization. I also found out that bacteria can go dormant for quite some time which is probably what I also experienced. That would explain my recurring infections. I never felt so disappointed, yet so relieved at the same time to finally know what was causing my symptoms.
At last, the new doctor I am currently working with was able to prescribe me with the proper antibiotics which will hopefully be able to fully eradicate these nasty buggers soon. The antibiotics must have worked right away. The first few days of starting the new antibiotic, my UTI symptoms came back with a vengeance. It was very bad; some of the worst flares I had ever experienced. These aggressive bacteria’s made a grown woman cry in the fetal position. If I put any sort of pressure on my bladder, such as walking or sitting up, it would hurt so bad so the only way to not feel the pain was to lay down. Poor Vic wanted to help me through the pain, but the only way he could help was to comfort me and just be there for me. However, I learned that the flares are totally normal as it’s the bacteria trying to put up one last fight.
Even though I still have a ways to go as far as recovery goes, I have to remind myself that my body (especially my bladder) took a beating and it won’t heal in one day. I will likely be on antibiotics for a while (my hope is 3 months) until I can fully eradicate the infection. I can do simple tasks like walking again, but sometimes it takes me a while to adjust. I am happy to say however, that I making some progress every day. Since this all began, I lost almost 15 pounds in total due to not being able to eat much and now I am slowly starting to add my favorite foods back into the mix. I was finally able to enjoy some In-N-Out a few days ago without a flare!
All this time, my body was trying to tell me something. If it wasn’t for my persistence, I might have never found what was wrong with me. I may have just accepted the fact that I was going to live in pure misery for the rest of my life. I just couldn’t accept the thought of missing out on life as I once knew so I had to advocate for myself and take action. It’s moments when I’m not dealing with a flare where I realize how important it is to take care and listen to our bodies.
If you’re on the same boat or know someone dealing with the same condition, feel free to contact me and I will try my best to answer any questions you may have. Though I cannot legally give medical advice, I can offer some guidance to resources that have helped me along the way.
Here are also some useful links that were critical in helping me discover my embedded UTI:
Embedded UTI Facebook Group: https://www.facebook.com/groups/256368481581022/
Microgen DX: https://microgendx.com/
Live UTI Free: https://liveutifree.com/
Hopefully now you can understand why we’ve taken a little social media sabbatical. All I can really do for now is take it one day at a time. We’ll try and give you all an update on my progress again soon!
Cheers to Healing!