My Interstitial Cystitis Journey
The Beginning
I always thought when I was growing up that I would be an adult that didn't really deal with many health issues. My family is relatively healthy and I was a relatively healthy kid. My cycle was pretty normal. It started at age 12, was 28 days long until I got married and got on birth control pills. I grew up having the occasional headache but again nothing to write home about.
I always had a small bladder growing up as a kid. I was a bed better and I was always that kid that had to go to the bathroom. I was often reminded by my mom to “just try” if we were going to be running errands or if we passed the restroom. I got very comfortable being the friend that always had to go to the bathroom and never thought anything of it. However, when I entered my early twenties it seemed as if everything changed.
My First Issue
My earliest recollection of having a bladder issue was actually in 2007. I remember being at a combined office meeting and having to go to the bathroom so bad that when I voided my coworker, who was in the stall, next to me asking if everything was okay. When I looked back in horror I saw urine all over the floor. I remember thinking that that was not the first time I felt an urge to go pee that strong, but I also remember thinking I'd never actually peed on the floor like that.
That was all inconsequential until around 2009 when I started having very painful periods. I went back and forth with my gynecologist changing different birth control pills trying to figure out what I could try to manage my period pain. I was diagnosed with endometriosis in 2009. My period pain progressed and my period pain was so bad that when I would be on my cycle my bladder urges would get more severe.
my bladder urges would
get more severe
I then developed pain in my lower right pelvic region. It would perk up during my cycle and as the months went by it would become more and more intense and more and more consistent. By 2010 I lived with constant right pelvic pain that radiated down my thigh and into my knee monthly during my cycle. I remember one day I was walking a patient back from the waiting room to the treatment area and I hit the floor doubled over in pain because my abdominal pain and cramping were so severe. At that time I decided to go to HR and discuss with them the options of filling out FMLA because I was thinking that I was probably going to have to take a leave of absence to get this taken care of. Or I was going to be tapping into my PTO bank often because I was missing two to three days of work a month when I was on my cycle. My gynecologist suggested that I get laparoscopic surgery to treat the diagnosis of endometriosis.
Surgery
When nothing else seemed to work I agreed with my doctor and I underwent laparoscopic surgery to burn off the endometriosis in December 2012. When I woke up I only felt two incision sites. That was my indicator. They did not do much work inside my belly. Actually, I was only in the operating room for about 15 minutes. There was no endometriosis to be found. When I followed up with my doctor I was crushed because I knew I was having very distinct pain in my belly. She suggested maybe I had fibromyalgia and I could benefit from getting on Lyrica. Another option she said was to get on hormone therapy which would put me into clinically-induced menopause for 6 months and shut everything down. The hope was this would calm my system enough so that when it started back up on its own things would be regulated.
That was not an option
Neither one of those felt like a viable option so that's when I decided to do my own research. I looked for as much information as I could on endometriosis and other treatments for endometriosis. With my knowledge of being a licensed physical therapist, I knew I did not have diffuse pain that was consistent with chronic fatigue pain syndrome or fibromyalgia. I also knew there was something in my right lower pelvis but I did not know what it was. I researched these things for about a year to no avail.
When I followed up with my primary care physician in December 2013 I asked her if she had any recommendations for a second opinion for a gynecologist. She stated that she was leaving the practice and I would not be able to follow up with her but she knew a pretty good doctor that was at a neighboring facility.
Answers
I was able to get in with him in February 2014. During our initial consultation, before the pelvic and breast exam, he sat me in his office and listen to me run down my five-year history of this pain that I had been dealing with. He slid two pieces of paper across the table and said “I think this might be what you have.” The top of it said interstitial cystitis. He began to explain to me what interstitial cystitis is as I feverishly read through this information handout that literally described what I've been dealing with for 5 years.
Pain with sex: YES.
Painful cramping in the pelvis: YES.
Frequent urination: YES.
High urgency with urination. YES.
Chronic Pelvic Pain: YES.
He told me the first order of business was for me to follow an elimination diet to figure out what was causing my triggers. Next I had to undergo a cystoscopy to confirm if I in fact had lesions inside of my bladder. I was put on 2 different bladder medications. One, to calm down my bladder spasms and another to reduce my bladder urgency. To help me find some sort of normalcy with my cycle, he also put me on a 13-week birth control pill, so that I only had to deal with cycles four times a year.
I was loving this new doctor! He had an answer to my problems and he was able to come up with solutions. I did exactly what he told me to do. I followed up with him and did a cystoscope. I also did the elimination diet and took the bladder medications for 6 months. During the cystoscope, three lesions were located on my bladder which confirmed interstitial cystitis. Then 6 months later I underwent laparoscopic surgery just to confirm there was nothing on the outside of my bladder and to have a bladder hydro distension.
Recovery
After this procedure, I started to slowly incorporate foods back into my diet to identify what my triggers were. Thankfully citrus and alcohol were not my triggers, however, artificial sweeteners were definitely triggers. I made a lifestyle adjustment and decided to eliminate artificial sweeteners from my diet. This included stopping: chewing gum, which I chewed constantly, and eliminating Crystal Light, Splenda, and other sugar-free drinks with artificial sweeteners. I had a couple of years of relief.
Flare Up
In 2018 I noticed my bladder urgency was just as bad as it was previously. I was a home care physical therapist and was riding in my car anywhere from 2 to 4 hours per working day. Riding in a car, on bumpy and potentially uneven roads can precipitate or exacerbate bladder urgency and frequency issues. I did notice that I didn't have any increased pain unless I ate the wrong thing for several days on end. I discussed this with my doctor at my annual checkup and he agreed to do a second hydro distension in May 2018. Being that I wasn't in pain before the procedure and the fact that this procedure is very painful, I don't believe that the benefits outweighed the side effects of the pain from the procedure.
That’s when I discovered Pelvic floor physical therapy
In 2019 I decided to be my own advocate and dig a little deeper to find out what I could do with retraining my bladder. That's when I discovered pelvic floor physical therapy. I read a couple of books and started doing some stretches and different strategies to try to reduce my brain signal to my bladder for emptying. When the pandemic hit, and I had more time, I decided to dive a even deeper into seeing what I could learn as a physical therapist by treating myself. This desire over time grew into me taking my first pelvic floor physical therapy class. And in November 2022 I opened my own private practice to treat people with pelvic floor dysfunction.
Helping Others
I share my journey because it's very long and it has lots of twists and turns. And if you're reading this you might feel seen and heard that your pelvic health journey is also long and windy.
Currently, I believe that my bladder function is well maintained. I no longer wake up in the middle of the night to use the bathroom (occasionally I might wake up just once per night). I'm able to hold my urine when I initially get the signal and I go to the restroom about 7 to 8 times per day, which is right within normal limits. (Years ago I was going about 15-20 times per day). I do have flare-ups when my stress level is increased or if I accidentally consume artificial sweeteners. Sometimes I also have minor flares with my cycle. But these are all things that are able to be rectified in a short period of time. I'm so thankful that I am able to use breathing techniques and stretches to manage my symptoms so that I don't have to take additional medication.