I wrote this post to share my Interstitial Cystitis (IC) story in hopes that others can learn from my experience. If you'd prefer to listen to my story, check out this podcast episode.
Let’s start at the beginning...
Ever since I was a young child, I’ve had bladder pain. I would constantly have burning with urination, and the pain always amped up after I finished urinating. I remember when I was maybe 8 years old and would always pee before we left for soccer practice. Most of the time I would get stuck sitting on the toilet in agony for 20-30 minutes as my mom yelled at me “WE’RE GOING TO BE LATE!”
In middle school, I would find myself using the bathroom in the middle of class, returning to class, and being in agony debating if I should go back to the bathroom and try again. I was not understanding why 1 minute after I used a bathroom I had to suddenly go again. But if I went again, it would only be a few drops of liquid. My 12-year-old self was baffled!
During high school, I started learning a few ways to manage the pain, such as having a water bottle with me during classes, which I had to get a note signed by my doctor to have. I didn’t know at the time that tight clothing was a big no-no for my bladder. Unfortunately, I grew up during the height of the popularity of yoga pants and skinny jeans. Imagine this: I would wear yoga pants, but couldn’t wear a thong (I still don’t know how regular women do this), but I also didn’t want my underwear lines showing, so I found a pair of “seamless” underwear that I had to constantly readjust because G*d forbid someone see my underwear lines! At least with jeans I could wear my comfortable granny panties, but the tightness was unreal. Basically, the jeans looked like they were painted on me.
Seeking Treatment
As I entered college, I was so excited to move on to the next phase of my life - playing collegiate volleyball, meeting new friends, and living away from home for the first time in my life. I had a newfound sense of independence.
I took this sense of independence and ran with it. What I mean is that I took my new laptop that I purchased with money I received at my graduation party, and went to town on Google. Many searches later, I believed I had found my answer. I had Interstitial Cystitis. But how would I know for sure? I researched top specialists near my college and set up appointments that had months worth of waiting time.
Did that many people have bladder problems? Or are there just not enough health professionals specializing in this condition?
After much trial and error with multiple providers, I finally found a urogynecologist that I vibed with. She had amazing bedside manner, and talked me through each treatment option. I worked with this person for 2 years, and it felt like we were making our way through a long list of treatment options.
A shortened list of things I tried:
-Instillations
-Hydrodistention
-Botox injections in my pelvic floor (ouch!)
-Oral medications (Amitriptyline, Hydroxyzine, Myrbetriq, Elmiron, Uribel, and so many others)
-Estrogen creams (1 of which caused a horrible allergic reaction)
-Pelvic floor PT
-Acupuncture
-Chiropractic care
I even went as far as researching a top urogynecologist in Philadelphia who I literally asked to do surgery on me, and she did. My mom asked me what surgery it was, and I didn’t have an answer for her - I actually signed a paper for a surgery that I didn’t even understand. Adult me is cringing at this thought.
The procedure was called a vestibulectomy, vulvectomy, partial flap advancement with removal of Skene’s glands. I had no clue what I was getting myself into and was hoping this would “cure” me.
I had horrible post-op complications - my stitches came undone and I had to go back under anesthesia to get them fixed. The surgeon wanted me to go home and come back the next day, but I had a catheter and packing, so after my mom called and yelled at her and then she let me stay overnight. A true sh*t show.
I had a small amount of hope that this cured me. But, a few weeks later, I felt that dreaded feeling - the burning was still there. I mentioned this to a student of the surgeon at my follow-up (the surgeon didn’t even see me) and the student replied, “Don’t stress yourself out, it will be fine”. IT MOST CERTAINLY WAS NOT FINE.
I was devastated. I had just put myself through a horrific experience where I literally had my vagina operated on and augmented.
The Final Blow...
... came after I graduated. I had scheduled an appointment with the top urologist in my hometown, and was feeling hopeful (per usual). She wanted to do a cystoscopy, and look at my bladder. I consented, and the procedure was done in the office without anesthesia. I was in so much pain during the procedure that I was actually crying. After it was done, the doctor told me, “Your bladder looks completely fine. There is nothing more we can do for you. I will give you the names of a few other IC specialists in the tri-state area” and sent me on my way. I looked at the list of names, and I had already seen 2 out of 3 (one of which was THE surgeon I mentioned earlier), and the third was 4 hours away.
After this experience, I took a 3 year hiatus from searching for a “cure”. Along my journey, someone had mentioned there was a diet that could help manage my symptoms, but I just brushed them off thinking, there’s no way changing my diet could solve this.
How Diet Changed My Life
After so much trial and error, I was finally ready to commit to examining if my diet was the culprit of my pain. And let me tell you, I was stubborn and had put off changing my diet until it was a last resort. I changed my major in college to nutrition around this time because I had always been interested in food.
I went to my old friend Google and searched “IC diet”. I used the knowledge I learned in my nutrition classes about elimination diets and conducted the diet over 4 months and let me tell you, it was NOT easy being a college kid on a “diet”. There were IC triggers everywhere I looked. It took discipline.
But I kept telling myself, it will be worth it. It had to be.
After a long 4 months of trial and error, I identified many foods that I normally consumed that were actually causing some of my symptoms. I also identified foods that I thought I couldn’t have that didn’t bother my bladder like I thought they would.
Here’s a list of a few foods and beverages I found I am able to tolerate:
Coffee
MSG
Yogurt
Bananas
Spices
Small amounts of citrus fruit, chocolate, soy, tequila
And so many other things that I thought I would never be able to eat or drink ever again!
Solving My IC Puzzle
Now, I’m not saying this will be the case with everyone. However, what studies have shown is that most people with IC are food sensitive. But the thing is, every IC patient is different. Meaning, a food that bothers you may not bother me.
The great thing is that you CAN identify the foods that are uniquely sensitive to you. You can do this through an elimination diet.
But the thing is, diet is only one “piece” of the puzzle. It will likely take a combination of treatments in order to “solve” your puzzle.
To give you an idea of what my IC puzzle looks like, here’s how I break it down in my head (I could attempt drawing it, but that would be horrible):
25% diet
25% stress management
25% pelvic floor PT
25% other (medication, loose clothing, etc)
This is just an example of what an IC puzzle can look like. It can be 90% one thing and 10% another, or maybe an even 50/50 split. This is why IC treatment is not a one-size-fits-all approach.
It is going to take lots of trial and error in order to solve your puzzle, and get to the bottom of what is causing you pain in order to determine how to treat it.
I have been doing more reading about the 5 subtypes of IC (Google Payne’s 5 IC Subtypes to learn more) and I believe my subtype is central sensitization - meaning, my nerves are constantly firing and my body is in a constant state of fight or flight. In order to combat this reaction, I do mental health counseling for stress management and take both an antidepressant and Gabapentin to calm my nervous system. This in turn helps decrease tension in my pelvic floor, which I also attend therapy 1-2 times per month for.
It all goes hand in hand. I am a big believer in the mind-body connection - mostly out of personal experience. Most of my flares come from high levels of stress, or “thinking myself into a flare” as I describe it to others.
Start with the least invasive treatment method
Whatever the solution to your unique IC puzzle is, you need to start at the least invasive method of treatment first. Start with diet, stress management, and physical therapy. If those don’t work, try supplements or medications. If those aren’t successful, try instillations or Botox...you get what I mean here.
We want to put off the invasive methods of treatment - the ones you either need anesthesia for or need to be catheterized for. Both of these methods come with risks. For example, catheterization can put you at risk of a UTI, or traumatizing the urethra. This happened to me during my years of treatment. Being catheterized is in my top 3 most painful things that have happened to me. This doesn’t bother everyone, but for me, it was hell!
I remember back to my last cystoscopy, which I was awake for, and as they put the catheter in I was in so much pain that I literally cried during the entire procedure. Now I know that this is something I’m sensitive to and do my best to avoid at all costs.
The point I’m trying to make here is, try to find the least invasive method of treatment before you increase your risks with more invasive procedures. You will save a lot of time, money, and dignity. To be honest, I think at this point about 30 medical professionals have seen my private parts. Luckily, I am a very open person, but for someone who is more modest and not as comfortable, this can be a very uncomfortable experience.
A Few Last Tips
Don’t just dive into a procedure because it’s what the doc recommended. Either get a second opinion, or question the recommendation - sometimes what doctors do is offer a solution that they can provide, rather than referring out. Don’t be afraid to be your own advocate - this is YOUR body, not theirs. You have a say in what you do with it.
You will need to identify your body’s unique dietary triggers as well as non-diet triggers. You will need to manage your stress - I believe that everyone on this Earth needs a therapist - but unfortunately not every person wants it or can afford it.
Talk about it. Talk to your spouse, a friend, a family member, your neighbor - it doesn’t matter! In order to normalize this condition and decrease the stigma around IC, we need to talk about it. This will also help you form a good support system in solving your IC puzzle.
Be patient - solving your IC puzzle will take time. But remember that it will be worth it in the end if you can get back to living the life you want to live.
I hope this post helps guide IC warriors through determining treatment and advocating for themselves. If anything, learn from my experience. If you have any questions, feel free to reach out at support@callieknutriton.com
Callie
Great text. You’re helping me to see the positive things with this disease. Thank You so much !