I love growing older – there is something about the introspection and wisdom that comes with age that very much appeals to my self-aware self.
With a chronic disease like Type 1 diabetes, getting older also means my body may not be able to manage as well after years of undue stress. The fatigue has been quite noticeable in the past year so much so that I once thought there may be something wrong with my thyroid. But my blood work continues to show positive signs (well, minus the incurable chronic condition).
But diabetes is not the only ailment I’ve had to face in the last 10 years. It’s an issue I don’t often talk about because I am somehow ashamed of its existence. It took me years to feel comfortable telling folks I had Type 1 diabetes. But diabetes, at least in today’s day and age, is somewhat understandable. And there’s scientific proof it exists.
So, what about another incurable chronic condition, that while it has a name in the scientific community, is often dismissed by health care providers because there’s no evidence the pain exists? And just like diabetes, researchers do not know where it comes from or why it exists. But it plagues more than 12 million people in the US (mostly women).
It’s called Interstitial Cystitis: recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go).
Not exactly the kind of condition you want to share with colleagues and associates.
The road to this revelation started back in my mid-twenties when I experienced seven urinary tract infections (UTIs) in the span of 12 months. It got to the point where I was afraid to even go to the bathroom for fear of the burning pain that would follow. And if you’ve ever had a UTI, you know the pain associated with it. I was eventually referred to a urologist, who prescribed me a low-dose antibiotic to help prevent the infections. But as we know about antibiotic resistance, this was not a great long-term solution.
With the antibiotics and a few home remedies (I used to drink cranberry juice on the daily, and I’m not talking about the sweet cocktail mix – no, I drank 8oz of the bitter 100% cranberry juice every day for almost a year), I was able to cut down on the number of UTIs. As a side note, this did not appear to be diabetes-related as my blood sugar levels were in great control (and still are).
So, a few years later, when the pain started up again after a routine medical procedure, I went to urgent care after urgent care before finally consulting with my doctor. There was no evidence of a UTI, but the pain was constant. It felt like my bladder was on fire, and although drinking fluids was recommended, I eventually avoided them for fear of the pain when I went to the bathroom. I underwent many different exams and tests that evaluated the inner lining of my bladder and even the placement of my bladder. Those tests revealed nothing abnormal.
Numbing the Pain
But I continued to experience the pain for the better part of a year before I found a urologist who could treat my condition and be honest about what was going on with my body. Prior to consulting with her, I received the impression that many of the doctors I visited with thought I was making the pain up. I even went so far as to document exactly when the pain started and rated each flare-up on an intensity scale of 1 to 10 (mostly so I could see if I could detect any patterns as to what triggered the pain – spoiler alert: I never found any, not even related to blood sugar levels).
And then I almost overdosed on pain medication one night. I was so tired of being in pain. I just wanted it go away. So, I mixed medication when one dose didn’t work. And for the first time in months, my bladder felt numb, and I found the energy to do some household work. But when I started sweating profusely, and I looked in the mirror and saw a very pale reflection, I called a family member and then immediately ran to the bathroom to throw up whatever was in my system.
After that incident, I met with my new urologist, who gave me a pamphlet on Interstitial Cystitis and recommended changing my diet to avoid acidic foods like certain spices, tomatoes and alcohol. I was open to trying anything but I needed the pain to go away first. I couldn’t even sit in my desk chair at my office job. Putting that much pressure on my bladder hurt so much I couldn’t concentrate on work. I once described the pain to a friend as if my bladder was a shriveled-up fruit. Any ounce of movement just made it hurt more.
The pain subsisted, and as we came upon my year anniversary with this new condition, I decided enough was enough, and I was willing to do the unthinkable. I asked my urologist to shoot Xylocaine (Lidocaine) up my bladder through a catheter (this was a treatment method she had suggested as a last resort). The Xylocaine would act as a numbing agent, and we hoped would re-train the nerves in my bladder to not overreact to every little stimulant.
I still remember that first afternoon after the Xylocaine had passed through my system. I felt on a high because for the first time in a year, I felt nothing. I didn’t even feel the need to go the bathroom until my bladder was full. And nothing burned on the way out. We repeated this treatment method for a week for six weeks. It was expensive, but manageable. And I just needed to no longer be in pain.
A Higher Quality of Life
I continued to have flare-ups every 3-4 months after that initial treatment span. Unfortunately, even though my doctor showed me how to administer the Xylocaine myself so I could treat at home, we could never figure out a way for me to access the supplies needed and have insurance cover it. So, I had to make an appointment with the urologist every time I needed a boost.
After a while, this became cumbersome and expensive so I tried to save my visits for the serious cases. This meant having to endure pain every once and awhile. I remembered my urologist once recommending taking over-the-counter antihistamine to help mitigate the symptoms. When I couldn’t make it to the doctor’s office for treatment, I started taking Benadryl on the daily. And over time, my flare-ups decreased. I’m not sure this is entirely a result of the Benadryl, but I feel I’m one of the lucky ones.
I still have pain every so often if I drink too much or experience a hormonal shift. But I no longer wake up, struggling to get out of bed, because of immense bladder pain. But there are still moments when I acknowledge I feel the need to go to the bathroom more what constitutes normal, and the anxiety swells. I can think of nothing else but my bladder and whether the pain is real or intensified by my stress. This is an effect of living with pain for long enough to not remember what “normal” is like. And it’s an effect I may likely live with for the rest of my life.
I admit I have trouble owning up to ever experiencing this condition (mostly because I don’t want to add another pre-existing condition to the list). But there are so many out there who experience this on the daily and don’t get the support they need. Most people didn’t really understand the pain I felt, and in many situations, I found it easier to say I had a UTI than incurable chronic bladder pain.
But with the support of loved ones and doctors who believed me, I was able to re-discover a high quality of life again. And that’s still a life with Type 1 diabetes. But believe me, I will take Type 1 diabetes any day over incurable chronic bladder pain.
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