I’m sick of being sick, but most of all, I’m sick of people not knowing how darn sick I am. So that’s where I’m going to start. I’m not trying to create a resource list, to elucidate the effects of certain medications, or even to ask for suggestions from others that are on this horrible hike with me. No, I’m going to start by telling my story. It’s going to be real; it’s going to be uncomfortable. Most importantly, it will be told. The rest will follow I’m sure.
I’ve been diagnosed with interstitial cystitis since December 31st 2015, but I’ve had symptoms since 2013. That’s six years of my life. I’m 31 right now, edging really close to 32. A fifth of my life has been spent in extraordinary pain. I can hardly remember life before the pain, before the anxiety over where the nearest bathroom is located, before the realization that saying no is the only way to heal, before letting people I care about down just became a way of life.
So what is interstitial cystitis (IC)? According to Wikipedia: Interstitial cystitis, also known as bladder pain syndrome, is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC/BPS is associated with depression and lower quality of life. Many of those affected also have irritable bowel syndrome and fibromyalgia.
It’s that and a million other things having to do with things just not working right down there. And depression? Come on, Wikipedia, if I’m in constant pain, how the hell am I not depressed? I love my pain said no one ever.
But what causes it? That’s the million dollar question. No really. Please get a million dollar grant and start researching that. I know you probably need more than a million dollars, but my point is that IC is a bunch of stuff grouped under one huge, ambiguous umbrella. Basically, our bladders don’t work right, but beyond that all of us are entirely unique. This isn’t a cookie cutter sort of thing. What has worked for me probably won’t work for someone else and visa versa. And let’s not forget that modern medicine has no idea how to solve this one. NO IDEA.
There’s Elmiron, Amitriptyline, and a handful of other medications thrown at us. Medical professionals didn’t believe diet was a major factor in the reduction of IC pain until 2007 (Shorter, Lesser, Moldwin and Kushner) and that’s now the first line of defense given to the newly diagnosed. I’ve seen at least five different medical doctors and as of now, none of them have particularly helped me in the slightest. It’s not that they’re terrible (though some are) it’s that IC is a complete mess medically speaking and we still don’t really understand what’s going on. Traditional medicine can provide no clear-cut solution to IC at this time.
How much pain can you possibly be in? Didn’t you get a PhD, teach high school for two years and compete for UCLA Figure Skating for three years? Yeah. And I did all of those things with IC. I competed at nationals for UCLA while I had a kidney infection. I was landing doubles while my kidneys were on the verge of failure. I have a monumental pain tolerance. This isn’t something to be proud of. Indeed, it kept me from searching for help for years because I could simply grin and bear it. I look fine to you, so you assume I am. I have not been fine since early 2013, before that kidney infection that started this decent into hell. I am not fine. I have moments of freedom from the pain, but they are mere moments and they do not last long enough to give me even half of a deep breath.
What level of pain? Like, you can’t be in catastrophic pain, can you? Yes. Yes, I can. I’ve recently begun to think of my pain on the Richter scale because that’s the only scale I can think of that can accommodate the magnitude of my pain. A seven is ten times worse than a six, a nine is a thousand times worse. Getting an every day bruise or scrape is firmly a one for me. Falling on my hip in skating? Maybe a three. My everyday IC pain level? Between seven and ten. In the bad stretches, I’m at a 9.5-10 nearly every day. On the good days I’m at a seven, and if I’m really lucky, maybe it will sometimes dip down to a five or six. Even at its best that’s a hundred times more painful than falling during skating. That’s for real. But I’m good at smiling and not letting one inch of that suffering show through.
But it’s been six years and I’m done. I’m done hiding how miserable my existence has been for years. I’m done pretending my life is what I want it to be.
How did I get here? A combination of bad luck, genetics, misinformation and doctors who didn’t listen.
Ever since carnal relations with the opposite sex became a reality for me, I’ve gotten urinary tract infections (UTIs). They suck and I didn’t know anyone in my family who got them, so their arrival blindsided me. And then no health care professionals seemed to give a damn that I got chronic UTIs. That’s just what happens to young women who have sex. I was told by my ER doctor the first time I got a UTI that it was what I got for having premarital sex. Those exact words. So I didn’t question if there was a way to treat the UTIs or if having recurrent ones was unhealthy. I just felt shame and left it at that.
But I did start drinking an inordinate amount of cranberry juice and chewing vitamin C tablets like one ER nurse told me to do. It should be noted that I didn’t have stable enough health care to have a primary care doctor in my early twenties. The one gynecologist I did go to tried to say any pain unrelated to UTIs was related to STDs. I have never had an STD, but she was utterly sure one of them was the only explanation for my additional pain.
It turns out D Mannose (the stuff in cranberry that helps) really does help avoid UTIs to a certain degree, but all that acidic cranberry juice and vitamin C, that might have been doing some real damage. Who knows. Remember, I have no idea why I have IC or where it came from specifically.
Anyway, the years went on, my UTIs slowly increased in frequency, but no one suggested treating them. Then I got a kidney infection on a flight from Boston to LA. Somewhere over Colorado or Kansas, my discomfort skyrocketed into an all-encompassing hell that still ranks as an 11 on my pain Richter scale. I remember listening to “If you’re going through Hell, keep on going” on the terrible airplane headphones and repeating the words like a mantra for the next three hours. We landed, my husband to be brought me straight to the ER and we got it treated while discovering a deadly morphine allergy that I also thankfully survived. But nothing was ever the same again.
It started out as brief burning after I urinated in the summer of 2013 and then it slowly just got worse and worse. Finally, as soon as my bladder was remotely full, it hurt, full on 9.5 hurt. Travel became difficult, but I managed, hiding the pain and fear as best I could. The pain seemed odd, unrelated to UTIs and unpredictable. Some days I felt okay, others it was hell all day. By the fall of 2015, I began to suspect caffeine and alcohol made it worse.
When I finally saw a urologist that New Years Eve, he immediately knew I had IC (which is rare, so this guy does get a gold star for that). We modified my diet (http://ic-diet.com/IC-diet-food-list.html) and started me on Amitriptyline. And thus began the trying to things that seemed to help a bit and then after a while seemed to stop helping. Actually, the diet has always helped. Don’t let anyone tell you diet isn’t a major factor in mitigating IC pain. But sometimes, even eating all the right things, I’m in extreme pain.
I should also mention I could swallow a handful of ibuprofen and it wouldn’t do a damn thing. Acetaminophen actually straight up makes it worse. CBD oil kind of helped for a month and then it didn’t. And I refuse to touch opioids since I’m deathly allergic to morphine and I don’t need to open another can of worms that is an addictive medication.
I tried Elmiron a year later. It made my hair fall out and my finger nail beds die, but it didn’t stop the flares. I went keto for a whole year and at first that helped, but then I got so nauseous I had to stop. And by that time, the keto didn’t seem to be reducing the pain either. If anything, my pain seems to have gotten worse in the last few years, not better. Going off hormonal birth control seemed to help and so did stopping the low dose antibiotic I was taking for recurrent UTIs (turns out once you’re married people actually believe in tackling this one), but overall the trend has been down regardless of the medications given to me by the medical professionals.
So now I’m seeing a naturopath and I’m off every single prescription medication I was given. And now I’m willing to share this story because it’s going to take a lot more than just a pill to help me find my path to healing.
I plan to update with anecdotes from my IC journey past and present, actual medical research and everything in between.
Thank you to Catherine M. Simone (author of To Wake in Tears, Along the Healing Path, and Awakening Through the Tears) and Julie A. Beyer, MA, RD (author Confidence Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: Cookbook for Interstitial Cystitis and Overactive Bladder) for inspiring me to finally be honest and share my story. And thank you to my husband, Rob. I would not be alive today without your infinite love.