I Found Relief from Interstitial Cystitis (5:CS) with The Plant Paradox Diet
Talking about Interstitial Cystitis (IC) is difficult. Especially to a mass public who knows nothing about it.
It’s embarrassing. I don’t want to talk to strangers about how I’m in terrible pain when I urinate. I don’t want to talk about the plethora of trial and error treatments and procedures I have done to my bladder and urethra in an attempt to relieve my pain. It’s embarrassing. Off the top of my head I can think of dozens of things I’d rather do — like eat a ghost pepper or rip all of my fingernails out or tongue kiss my uncle.
It’s embarrassing when someone offers me something to eat and I decline because it will trigger my symptoms, and they ask “What’s the big deal? What will happen if you eat this?”
Answer: My urethra will basically set on fire, my bladder will try and kill itself, and I will be in excruciating pain for hours if not days if not longer as a result.
It’s embarrassing when asked for a reason for declining to go out with friends to announce, I can’t [insert name of activity] because my pee-pee hurts. Fuck my life, right?
These kinds of awkward moments are what millions of people suffering from IC experience on a regular basis. It is such a debilitating condition, that many people consider suicide because they cannot imagine living out the rest of their life in such chronic pain.
AND I GET IT! I, too, thought about ending my life because of the severity and duration of my pain.
Talking about IC is difficult also because:
It’s frustrating. Talking to well-meaning people who have zero personal experience with IC, including many doctors, is infuriating… especially when they bombard you with a deluge of questions as if YOU HAVEN’T ALREADY THOUGHT OF EVERY POSSIBLE SOLUTION EVER!
Have you tried yoga?
Have you tried meditation?
Have you gone to the doctor?
What about a urologist?
I heard cranberry is good for bladder stuff.
Have you gone to a nutritionist?
Are you incontinent?
Do you drink enough water?
Maybe it’s chlamydia.
What about acupuncture?
Could hypnosis help?
Have you tried swimming?
Have you tried essential oils?
YES! I HAVE TRIED ESSENTIAL OILS! I HAVE TRIED EVERYTHING!!!! RAHHHHHH!!!!! **Pulls hair out of skull**
And I can’t count how many times my mother has referred to my IC as “an upset stomach.”
IT HAS NOTHING TO DO WITH MY STOMACH AT ALL, MOM! AT ALL! AT ALL! (And then I transform into a bat and fly away screeching.)
But long before these questions existed to infuriate me, my frustration began when I was in and out of the hospital, begging for antibiotics for a UTI.
In August-September 2017, I received two different rounds of antibiotics that, of course, did nothing to stop my pain because I did not actually have a UTI. My lab tests kept coming back negative, and I was convinced it was because I was drinking so much water that the cultures were being diluted. (That’s not actually a thing, by the way.)
In a moment of exasperation, believing with my entire heart and soul that if I just had one more round of antibiotics, my UTI would go away, I yelled at a nurse on the phone.
“I am telling you, I know what a UTI is! I struggled with them all my life! I know what they feel like, and I am suffering with one over here, and you’re refusing to help me!”
At this point, I hadn’t slept in literal days (not figurative days… literal DAYS) because I was so uncomfortable all the time.
I began questioning my future.
How am I supposed to work? How am I supposed to find a partner? How am I supposed to have children? How am I supposed to have a life? If I had to live the rest of my life, another 50–60 years, in this condition, I wasn’t going to. Full stop. There was no way I could live my entire life with this level of chronic pain. I was desperate. And people weren’t getting it. People don’t get how bad it actually is when it’s bad.
I presume the nurse heard the pain in my shrieks.
“We are trying to help you. We are telling you, you do not have a UTI. We are telling you, you have something else wrong with you.”
And so, in October 2017, began the tests.
STIs/STDs were ruled out, yeast infection was ruled out, vaginitis was ruled out. I didn’t have Pelvic Inflammatory Disease or kidney stones or endometriosis or cancer or this or that or or or.
Finally, months later, it was determined that I had Interstitial Cystitis, Subtype 5: Central Sensitization.
My doctor prescribed Uribel, an antispasmodic drug that prevents the bladder from contracting. It’s a take-as-needed medication that was not covered by my insurance. Price tag: $200. Oh, and because it prevents my bladder from contracting at all, I sometimes leak as a result. Super sexy. I’m 32, this shouldn’t be my life *anguished face emoji*
Trying to Fix the Problem
On a more holistic front, I immediately quit caffeine. And a few months later, I quit sugar. Cutting out stimulants helped a lot, but I still wasn’t pain-free. I didn’t want to take the Uribel regularly because I couldn’t afford it, and I didn’t want to randomly leak! Ugh! Fuck my life!
I tried following the Interstitial Cystitis Diet, but I still had pain.
One of my triggers outside of dietary triggers is my hormones. When I ovulate and when I have my period, I have huge flare-ups. I went to see a holistic nutritionist hoping she’d have any other insights that might help me. After dozens of tests and an extensive, hour-long questionnaire, she determined that my sugar levels were pre-diabetic — unusual for someone my age and activity level. In fact she said my sugar regulation rivaled that of an elderly, obese person. The spikes in my blood sugar would cause a stress response, which likely further exacerbated the flare-ups. I started taking a pharmacy of supplements every day.
Supplements for blood sugar regulation:
4. Fish Oil
5. Gymnema Sylvestre
(This is when someone reading will scroll to the bottom to comment, “Uhhh… science has shown that OTC vitamins and supplements don’t actually work.” Response: I. Don’t. Fucking. Care. Your comment will not convince me to stop taking my small pharmacy of OTC Supplements. Move along.)
Supplements for inflammation/Urinary Tract health/pain relief:
1. Solaray Kidney Blend SP-6: Cornsilk, Parsley, Queen of the mEadow, Uva Ursi, Buchu (no cranberry!)
2. Biotech Renal+
3. Vitanica Adrenal Assist
6. Pumpkin seed oil
7. Alpha-lipoic Acid
8. Gamma-linolenic Acid
My day-to-day pain still existed but at a lesser scale, and I still had severe flare-ups twice a month that were debilitating.
What does “debilitating” actually mean?
It means I am in bed with a hot water bottle between my legs, wondering why I even bother living. (This is not an exaggeration). It means I’m in so much pain that I wonder how I will ever be able to work a normal 9–5 job. It means I wonder how I will ever find a partner if I’m in so much pain that I’m unable to have sex. It means I wonder how I will ever have children because I’m unable to have sex and I’m unable to even get out of bed, let alone take care of another human being. It means I can’t sleep, not just for hours, but for days because I’m in so much pain. (And the sleep deprivation makes living even more difficult.) It means I am completely useless. It means: this is the reason why IC is federally classified as a “disability.”
Then, my doctor put me on the birth control shot in an attempt to stop me from ovulating so that I wouldn’t have the cyclic flare-ups. And it worked! For six months, I stopped having cyclic pain completely. But I fell into a deep, abysmal depression as a side effect. I was irritable. I’d snap. I found no enjoyment in anything. I had body dysmorphia. I’d be driving home from having fun with my friends and think “Gee, it’d be super great if that tractor-trailer rammed into me.” Being a person who blessedly does not struggle with depression normally, in a moment of lucidity, I made an appointment with my doctor to discuss my mental health. I went off the shot and within days I came out of my depression, but equally as soon, my physical pain came back, and I felt hopeless again.
While on the birth control shot, I had naively hoped that the pain would still be gone even though I went off it, and the first day I had pain, those same feelings of panic, anxiety, despair came flooding back. How am I supposed to work? How am I supposed to have a partner? How am I supposed to have children? How am I supposed to live?
Then I heard about The Plant Paradox
A random person walked into my friend’s office while I was visiting. The stranger had the book tucked in her elbow and I asked her about it. This stranger, whose name I do not know, and if I had to pick her out of a line up I would not be able to do it, started raving about this book and how it changed her life. So, in July 2018, feeling I had nothing to lose, I read the book and completely altered my diet. After 13 years of being a vegetarian, eating mostly soy, whole grains, fruits, and vegetables, I changed how I ate overnight. I became a pescatarian who does not eat fruit or soy at all anymore.
Six months after starting the diet (but not adhering to it 100%), I still have flare-ups twice a month, but the flare-ups were not life-shattering. I don’t agonize like I used to. I don’t panic like I used to. I have cyclic discomfort that is totally livable. I can sleep. And the day-to-day pain is completely gone. GONE! HELLO! For the people in the back! GONE!
I went from questioning whether or not I would have a life to live, to knowing I could live a worthwhile life. This pain will be something I struggle to manage for the rest of my life, but I’m in a place where the prospect of living 50–60 more years brings me feelings of hope rather than feelings of despondency.
To me, that is a miracle.
**Update June 2019**
Changes I have made since I wrote this article in January 2019:
First, I still follow the Plant Paradox diet.
But I cheat… a lot.
To control my hormones, I got a hormonal IUD.
I cannot recommend anything more. After a few months, I stopped having cyclic pain. Actually getting the IUD is the worst 30 seconds of pain you will ever experience outside of child birth or maybe being shot (I can’t be sure because I haven’t experienced either), but it was totally worth it for me.
I started taking a supplement called Uqora.
It was a total Facebook pander that showed up in my newsfeed, and I thought “Fuck it. Why not try it?” And I have not had UTI pain in months. Like none at all. Not cyclic. Not triggered by food. Nothing. I even started drinking decaf coffee again — something I couldn’t consume because even the small amount of caffeine would trigger my IC. I drink a cup of decaf nearly everyday now with no pain. (I sometimes wonder if I would be able to drink regular, but I don’t want to become a slave to caffeine again like I once was, so I’m sticking to my once-a-day decaf pour-over.) I am a firm believer in Uqora, and I’m being paid exactly $0 to say so.
I am finally living my pre-IC life again (most days)
Health and wellness are so fickle. I revel in my good health and lack of pain multiple times a day, everyday each time I use the bathroom and I don’t want to die (literally), knowing that it all could change in an instant.
I wrote this article because behind the scenes of my life is the incredible loneliness of hiding a chronic illness — hiding it from potential romances, hiding it from potential employers, hiding it from concerned friends and family. The embarrassment and shame and stigma of living with chronic pain is sometimes equally debilitating as the pain itself.
I wrote this very personal article because we have to end the stigma surrounding chronic illness, break the cycle of shame, and break the cycle of feeling like victims and/or treating people with chronic illnesses like victims. When I hide, I feel SO alone. I feel alone in my struggle, but I also feel alone in my successes. For six months I had mild to no pain. That is such a fucking miracle and I want to be able to shout it to everyone. But instead, I hide. Because if I announce it, then I have to talk about IC. I have to talk about my body and how it doesn’t function the way it should, the way normal bodies function. And I feel embarrassed. And uncomfortable. And I don’t want people to look at me like I’m broken, the way I look at myself like I’m broken. But maybe one of my friends is suffering from IC, or if not IC, from a different chronic illness or chronic pain or chronic inflammation, and maybe they feel embarrassed and alone too, and maybe this will help them to feel a little better.
I have zero affiliations with Dr. Gundry or the people behind Plant Paradox. I have no ulterior motive for sharing my extremely personal story. The Plant Paradox diet has helped me so much in my life, and I only hope that other people suffering from IC may experience some relief as well. If you try it, and it does not provide you relief, then I want you to know that I am sincerely sorry for giving you false hope. I know what it feels like to hope something will work for you, and the subsequent disappointment and despair when yet again another trial treatment fails. The journey to a pain-free life is such a long, arduous one, and I wish everyone suffering from IC even a moment of relief. It’s those, sometimes very brief, moments that allow us to continue on.
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