Ever since Roman was born, I've been getting recurring UTI's, or what I thought were UTI's. I would chug water and take the cranberry pills every time I felt the familiar burning and urgency starting up again. Sometimes the pain would subside within a few days. Sometimes I would need an antibiotic. The pain eventually got worse and more frequent over the past few months and weeks, so I reluctantly scheduled an appointment to see my doctor. The first test they did was an easy, quick dip test called a urinalysis. You pee in a cup and they can test it for blood, bacteria, and other things within a few minutes. The urinalysis came back negative, which means I didn't have an infection. Next, they handed me a questionnaire to fill out regarding the symptoms I had been having. I rated each question on a number scale: How often do you urinate in the day? Night? How would you rate your urgency? Etc. I handed the form back to the nurse and she added up the numbers and left the room.
I felt a sense of doom sitting in the doctor's office all alone, in the twilight zone between something's not right, and a diagnosis you don't want to hear. Before we had a baby, Brad would come with me to most of my appointments. But it was nap time, so Brad stayed home with Roman. Within a few minutes, the Nurse Practitioner entered the room with a warm smile that helped put me at ease. We had never met before, and when you're sick and in pain, you just want someone to listen. I gave her a brief history of my problems and she decided to perform a few more tests including a pelvic exam with cultures, and a potassium sensitivity test to see if my bladder was inflamed. She didn't find anything abnormal during the pelvic exam, so I waited for the nurse to prepare the supplies for the potassium sensitivity test.
The nurse returned after awhile with a tray of three large syringes full of clear liquid. First, she inserted a catheter to drain any urine that was left over. (I ended up having about 90 cc left, which is 3 oz, so for some reason I was not emptying my bladder completely.) Next, she injected solution #1 into my bladder through the catheter and asked me to rate my pain. The solution burned as she was inserting it, but after it was in my bladder for a couple minutes, there was no pain at all. She drained the first liquid and inserted solution #2. As soon as she squeezed the syringe, it was instant and intense burning. Any hope I had for a negative test went out the window. The nurse left the solution in for a few minutes and asked me to rate my pain again. She drained the second solution and injected one last concoction of lidocaine, heparin, and sodium bicarb to help numb the pain temporarily. She left the room and I got dressed as I waited for the nurse practitioner to return, but I knew. I had been researching online and consulting Dr. Google before my appointment, and I kept running across one chronic illness that seemed to match my symptoms.
"Well it seems to be a positive diagnosis for interstitial cystitis," the NP said as she entered the room. My worst fear was confirmed. Interstitial cystitis (IC) is inflammation of the bladder and urethra with no known cause and no known cure. It's also known as painful bladder syndrome and it's the disease I kept reading about, but hoped would never be my fate. How could this be happening to me? I was only 27 years old, healthy, normal, and no family history. My eyes blurred and I felt my throat closing up as she handed me page after page of poorly copied brochures about "How to live with interstitial cystitis," in other words, "How to live with pain the rest of your life." I started to cry right in front of her, I couldn't help it. I wanted my husband, I wanted my mom. The NP tried to reassure me as she told me I could come in anytime for another lidocaine/heparin/sodium bicarb injection, every couple of weeks if I needed to. Every couple of weeks? This was going to be my life now? Getting a catheter shoved into my bladder and holding a mixture of medications for as long as I could just to get some relief!? I instantly felt like I had entered a tunnel with no light at the end. She wanted to prescribe a daily medication called hydroxyzine, but it's an antihistamine and would possibly dry up my milk, so I decided I would try to manage it with diet first.
I drove home in a daze, crying off and on, feeling hopeless. I walked through the door of our home and Brad was there waiting for me. He held me as I cried in his chest. "It's going to be ok," he reassured me, "we're going to figure this out." I knew he believed that, but I didn't. I read horror stories that only 50% of people with IC are able to work, and that many people have to take antidepressants.
Brad had to leave for work, so I was left alone with my 7 month old baby to take care of and swimming in new information. I scanned over the "IC friendly diet" paper and quickly realized my whole life was about to change. I loaded up Roman and headed to the grocery store as I shoved the paper in my purse. I couldn't risk someone seeing that I had bladder problems. When we got to the grocery store, I just stood in the middle of the produce, lost and confused on what I could and couldn't eat anymore. Watermelon is ok, but cantaloupe is not. Nothing with tomatoes or citrus or caffeine or alcohol. Some meats are ok, but nothing canned or fermented or too spicy. I wandered the aisles, passing by all my usuals, and eventually checked out with a half empty cart.
Everyone around me would stop and comment on how cute Roman was, or ask how old he was, which is pretty typical when we go out, but I couldn't enjoy it this time. I was jealous that no one else seemed to be in pain, no one else just got diagnosed with a chronic condition. They were all free to live their lives and enjoy the little things. I finally understood in that moment why all the medication commercials show people smiling and watching the sunset, playing fetch with their dog, dancing with their spouse. I understood that I would never be able to enjoy those things if I was in the middle of a flare up. In the matter of a few minutes and 1 doctor appointment, my priorities changed forever.
The next few days I felt like a human guinea pig as I restricted food here and added supplements there. I researched and read all the IC forums, searching for any sort of cure, no matter how obscure. I started taking D-mannose and Marshmallow root, I lost 6 pounds in a week. I spent my son's first fourth of July curled up on the couch in pain. Anytime Brad would tell me about something exciting about the businesses or our future I would snap back at him. "It doesn't matter if I'm in pain, does it!?" I was angry at God, I spent my nights on the floor begging Him to take this away from me, I couldn't imagine a future of pain and suffering. I knew that ultimately if this was His will for my life, that He knows what He is doing and He is still good, but I could feel myself spiraling into depression.
With a little more research, and lot of pressure from my husband and parents, I decided to get a second opinion and see a urologist. I had been having low grade fevers and chills off and on, and I wasn't entirely convinced it wasn't some kind of infection. I mustered up some courage and called yet another doctor's office. I generally shy away from confrontation, and it was really hard to be my own advocate, to fight for my health. The receptionist told me the next opening was the end of July (about a month away). Obstacle number one. I pushed her for something sooner, even though it was so uncomfortable. I had reached the point I couldn't live like this anymore, I needed help. She sighed and said she would have to call me back. A few minutes later my phone rings, "Can you come in right now?" I said yes even though I had just put Roman down for a nap. I called Brad to come home from work yet again.
The first test they did at the urologist was another urinalysis. It was clean, as I knew it would be. I sat with the PA and repeated my symptoms to her, and the diagnosis I had received from my OB.
"Well I want to try a few more tests on you before we jump to that diagnosis, so let's put that on the backburner for now," she said. Gladly. "We actually don't use the potassium sensitivity test anymore because everyone would be positive," she added. The plan was to get an ultrasound later that afternoon, and to look inside my bladder with a scope a few weeks later. I left the clinic feeling cautiously optimistic. It's strange to say I wanted to find something wrong, but at least then I could treat a problem instead of having no answers.
A few hours later I was in the hospital, with my baby crawling all over me as the sonographer scanned my kidneys and bladder. I started with a full bladder, and halfway through she had me go to the bathroom to see if I had emptied all the way. I hadn't retained any urine this time, so the OB appointment must have been a fluke. She let me go, but I knew I would have to wait through the weekend to get my results. I lugged the heavy car seat, my purse, and the diaper bag from one end of the hospital to the other. Motherhood doesn't wait for you to feel good. Your children need you whether you're in pain, exhausted, sick, hungry, depressed, or just plain at the end of your rope.
In a lot of ways, IC is an invisible disease. It's different for everyone, but for me the pain tends to be worse in the morning and at night. I made myself go to work, but I was distracted. I decided to test my urine again because neither clinic had saved my urine after the UA, so I sent a sample through my clinic to the lab for a culture. A few days later my co-worker showed me the results.
"Multiple species growth. Probable contamination."
What? How could it be contaminated? I used the wipes and did a clean-catch, so I sent yet another sample and made sure I cleaned myself even better. A few days later, I got the results again.
"Multiple species growth. Probable contamination."
Ok...something is not right. A typical UTI is caused by the bacteria E. Coli, so once the labs see more than one bacteria growing, they automatically discard the sample and assume it was contaminated. The next step was to get a sample via catheter to limit the probability of contamination. I didn't want to irritate things even more, so I went back to researching online, narrowing my search on the cause of IC, and whether or not it could be caused by an infection. I started finding stories of people who had discovered a bacteria called ureaplasma in their urine, and all it took was a few rounds of antibiotics and they were pain free! I wanted to exhaust all my options, so I called the urologist to see if they could test for ureaplasma. They called me back and said they would send an order to the lab, and I could stop in within business hours to give a sample. Of course these things always seem to happen during naptime, so I pulled Brad away from work for the third time in a few weeks.
When I got to the lab and told them who I was, they pulled up my order and called over a woman in a white lab coat. She looked at the order and looked up at me. "This bacteria is usually found by the cervix and is collected as a vaginal swab, not a urine sample. Obstacle number...I've lost count. I sheepishly told her about all the research I had been doing, and asked if there was any way they could test for it in my urine. She reluctantly agreed, "Well I don't know if we'll be able to isolate anything, but we can try." I thanked her with a heavy heart and headed home.
Over the next few days I played the waiting game as well as the what-can-I-eat game. There didn't seem to be any sort of pattern to the good days and the bad days. It was a Monday morning and I was reviewing the letter from the urologist about my ultrasound results. For the most part everything looked normal. There was a small area in my lower right kidney that could possibly be a kidney stone, but it wasn't blocking anything and it shouldn't be the source of my bladder pain. My phone rang just a few minutes later.
"Hi, Hannah? This is the PA from the urology office. I just wanted to let you know that your culture came back positive for ureaplasma, so good job." Good job. A physician's assistant was literally congratulating me on diagnosing myself. "I'm going to send in a gram of azithromycin, it's only one dose, but you'll have to pump and dump for 72 hours after you take it." I felt dizzy after the call. On one hand I was anxious to take the medicine and see if I would feel better. On the other hand, I wouldn't be able to nurse my sweet baby for 3 whole days. I picked up the medication that day and prayed my son wouldn't wean himself as I nursed him for the last time and put him to bed.
About an hour after I took the antibiotic I started to feel sick. I was tired, nauseated, and had to run to the bathroom several times. I hoped the side effects wouldn't last long, but if it cured me then it was worth it. By the next morning I was feeling much better, but still having the familiar bladder pain. The PA said we would recheck my urine in 2 weeks, and that I could still have pain from lingering inflammation, even if we killed the ureaplasma. I missed the bonding time with Roman as I had to pour liquid gold down the drain multiple times a day. I worked hard at saving some milk in the freezer ever since he was born, so we were still able to give him bottles along with solid food. The next 72 hours crept by and I was so sick of pumping. By Thursday night I was ready to nurse again and Roman never missed a beat.
If you're still reading this, thank you for bearing with me. I know this was a long one, it's been a hard past few weeks. I will be re-testing in about a week to see if the infection is gone. I still have to decide if I am going to go through with the bladder scope. I have had my first pain-free days this week in a long time, and I am hoping that the antibiotic is working. Please pray for me as I continue to figure out what is causing my pain. Please pray for my family as Brad has had to step up and take care of me and Roman even more. When you're 21 and 23 standing at the alter reciting your wedding vows, you promise to be there for each other in sickness AND in health, for better AND for worse, for richer AND for poorer. But do we ever really expect anything but the health, wealth and prosperity? I've learned to thank God for these trials in my life as it's the only time I really grow. My whole world has been turned upside down and it's made me reflect on my priorities. What do we have if we don't have the promise of everlasting, PAIN-FREE life through Jesus Christ? Our money, our families, and eventually our health will fail us someday. So I will proclaim that God IS good! Whether He allows me to be healed, or whether I will have to live with this the rest of my life. (I pray for the former!) Thank you all for your support, I will you keep you updated as I learn more.
