First off, let me start by clarifying that I’m not my health problems. I say that little pep talk for myself because going back down this road of how I came to where I am now can be emotionally draining, painful, and discouraging. But I know I’ve grown so much because of this experience.
So, moving on.
It all started with a urinary tract infection in February 2016. Those things are so embarrassing, right? It was four years ago. I went to the doctor. The test was positive for a UTI. They gave me an antibiotic, and I thought that was the end of the story. But it wasn’t. Seven days later I still felt the burning, urgency, and slight pain as if a full blown UTI was coming my way. I will admit to slightly freaking out. Ugh. I went to the doctor again. The doctor took a sample of my urine to see if any bacteria was present. While waiting for the results to come, she gave me a different antibiotic to take just in case I still had an infection. I got the results and the test came back negative for infection.
So, what does that mean? Well…
It means I was having UTI symptoms with no actual UTI. Yeah, go ahead. Make a face. If you’ve ever experienced a UTI-you understand what I’m saying. I had to pee all the time. The burning, the aching- pain is hard to put into words. But I was having all the pain with NO UTI! The symptoms persisted in a sporadic unpredictable way over the next three-ish months. Some days I had little to no pain. Other days I wondered if I should go to the doctor.
But the morning finally came when I woke up sure I had another UTI. Here we go again. Dread, anxiety, and hope filled me. As I dressed, I prayed the whole time asking God to just make it real. I wanted there to be an infection. I wanted my pain defined so I could get better. But unfortunately, God didn’t answer that prayer.
The test came back negative and the doctor sat me down and spoke quietly. He said, “Based on your symptoms, I think you might have what’s called Interstitial Cystitis. It’s an autoimmune disease that makes you feel like you have a UTI. Unfortunately, there is no cure. Some people have had success by changing their diet while others have taken medicine to cope with the pain. I’m so sorry.” His voice was full of compassion. Today, when I look back at how he spoke to me, I can honestly say he is the best doctor I’ve had through this whole experience. He wanted so badly to help; but he couldn’t. He recommended a nerve blocker to stop the pain and also suggested I see a urologist.
Since the doctor mentioned Interstitial Cystitis, I went home and researched all I could about the disease. I read. I watched videos of others who had it. Based on research, I decided that I’d try diet before going to a urologist. At first the diet didn’t seem to help. The pain got worse. I couldn’t wear blue jeans. I remember locking myself in the bathroom so the kids wouldn’t see me cry. Would the pain ever end? Would I live like this forever? Eventually, I learned that the less food I ate, the less pain I felt. So food was effecting my symptoms.
The next 2 years were a roller coaster of trying to figure out my body. I’d eat healthy for months. The symptoms would go away. They once went away for so long I thought I was cured. But when I reintroduced foods back into my diet, the symptoms would came back.
January 2019 was when the symptoms came back in full swing-the pain woke me up in the middle of the night. I couldn’t believe I’d once thought I was cured. I had come down with the flu. It put me on the couch for a full seven days. I decided to take Nyquil. Boy, was that a mistake. Within half an hour of taking the medicine I knew it had triggered a bad flare up of pain. I knew I’d have to fight for my health.
Candida Blood Test
I went to the doctor. This time I specifically asked for a Candida test. In my research, I’d read that candida could be one of the causes for Interstitial Cystitis. The test was positive for Candida. I was finally able to see this monster’s face-or at least part of his face.
Then I finally went to a urologist-three and half years after that first UTI. I walked out of the urologist’s office discouraged, in tears. My husband wrapped his arm around my shoulders and brought me close. He’s the best guy ever. As we walked to the car, I told him what the doctor had said.
The doctor had decided to treat me as though I had Interstitial Cystitis. Apparently, the test for being diagnosed with IC wasn’t something she wanted to put me through. Her recommendations were to take D Mannose for the pain, and Prelief so I could eat whatever I wanted. She also recommended pelvic floor therapy. She said, “Whether you are diagnosed with IC or not, I would recommend the same type of treatment.” I walked away with little to no answers. That was when I knew that no doctor in the world would be able to make this pain go away. I knew I would live with this for the rest of my life. At the time, I was broken; today, I’m not. I will beat this ugly monster-with or without a doctor.
But I decided to follow her instructions. What did I have to loose? But for some reason I experienced more pain on D Mannose. After about three days, I decided not to take it anymore. The pain wasn’t worth it. Once I stopped taking it, the pain began to calm down a bit. As for taking the Prelief, I decided instead to change my diet.
I didn’t want to take medicine because it can flare up Candida. The most common triggers that cause Candida are sugar and antibiotics. Since having candida, I’ve also found that over the counter drugs can flare up the candida as well. (Let me also note here that the doctor didn’t seem to be interested in the Candida diagnosis. She disregarded the idea of diet having much to do with the pain. Candida causes so many health issues; but she didn’t mention it after I told her of my diagnosis. I don’t understand why.) Taking more drugs was the last thing my gut needed. I decided to eat Whole30 to heal my gut and get rid of the candida. I hoped that in healing my gut and getting rid of the candida, the interstitial cystitis symptoms would go away as well.
It’s been about 6 months since I’ve seen the urologist. I’ve finished one round of whole30. It may sound cliche-but it was life changing. My goal overall is to heal my body from all the antibiotics I’ve taken. I think it’s going to take a long time, but I’m in it for the long haul. It’s my life, and I only have one. When I think back to the pain I had four years ago and compare it to where I am today I could seriously do a happy dance because of the progress I’ve made. It doesn’t mean the pain is gone, but I’m learning how to manage it instead of being defined by it.
So what about you? Have you been recently diagnosed with candida? An autoimmune disease? Or maybe you’ve noticed foods are affecting you differently than they used to? I’d love to hear from you. Tell me a little about your story!