An Invisible Disorder

The pain began right before the Fourth of July weekend. I remember texting my friend asking her what having a UTI felt like because I have been fortunate enough to have never experienced one. I’d lay in bed watching Game of Thrones, trying to focus on the mischief that goes on in Kings Landing, but couldn’t concentrate because of a constant aching, pain, and fullness in my bladder. Even after I used the bathroom, the sensation remained, varying from a minor discomfort to a sharp excruciating pain. I would readjust myself, trying to find a position that would give me some relief but I was always unsuccessful. I had originally thought that I acquired this pain overnight but in hindsight I realize that I have been suffering for quite some time. Over several of months, my symptoms slowly progressed until I realized there was something very wrong. After spending much of my summer in doctors offices, I finally was diagnosed with both pelvic floor dysfunction and interstitial cystitis, disorders that impact a significant percent of the population, primarily women.

Pelvic floor dysfunction is pretty common in women who underwent hours of intense labor, but for someone like me – a fairly healthy 25 year old woman who has not given birth, it’s very rare. I have gathered that the general population is unfamiliar with this disorder and it’s because people don’t talk about it. A brief overview: both men and women have a pelvic floor which is a group of muscles that are responsible for supporting the organs in your pelvis, including the bladder, rectum, and either the uterus or prostate. Contracting and relaxing these muscles allows you to control your bowel movements, urination, and sexual function. Having a restricted pelvic floor can lead to organ damage and can also affect surrounding muscles in the legs, abdomen, and back.

If you’ve never heard of interstitial cystitis, I’m not surprised. Many urologists continue to dispute its existence, dismissing or misdiagnosing patients who experience the symptoms of it. My first urologist, a middle aged women who has been practicing longer than I have been alive, said that it wasn’t necessary for me to have a physical exam. Rather, she would have me give my sixteenth urine sample for a dipstick urinalysis …as if this one is going to give her a different answer than my previous ones. She dismissed everything I said and just prescribed me medication for overactive bladder syndrome and sent me on my way. The medication had no effect on my symptoms and actually caused me to lose control of my bladder. Not only was I feeling discouraged because another specialists couldn’t help me, but now embarrassment was starting to take over because I was having accidents at the age of 25.

At first, both of my primary care physicians (yes I have two) diagnosed me with frequent urinary tract infections that required antibiotics, but of course the symptoms continued after finishing the continuous rounds of pills. From July 3rd to August 15th, I was prescribed six different antibiotics which didn’t relieve any pain. This cycle of insensitive specialists and vague diagnoses continued for months. At times, I was spending 3 days a week in doctors offices, advocating for myself and looking for answers. I was put through a variety of unpleasant tests from a handful of specialists to be left without any answers. Even when I did my research and brought up the possibility of pelvic floor dysfunction and IC, the doctors either told me it wasn’t a real condition, that I’m too young to have it, or that it was simply part of my anxiety disorder and that it was all in my head. People were starting to think that I was making everything up and to be honest, I don’t blame them. Both of these disorders are practically invisible to the human eye so it would be easy to assume that everything I was experiencing was all in my head. I had given up on doctors and tried to manage my symptoms on my own but things only got worse.

Bathroom related anxiety took over my life. I made sure to go to the bathroom before I left my house. I’d go again when I arrived at my destination and again right before I left. I’d worry about car trips, flights, movie theaters, concerts, and anywhere there might not be a restroom immediately accessible or where going to the bathroom will disrupt the event or annoy the people I was with. I’ve avoided events and cancelled plans based on my fear that I won’t be able to get to a restroom when I need to. When I found myself in a situation in which I can’t get to a bathroom, I felt trapped and terrified and all I could think about is when I’d be able to go again. This, in turn, brought my focus to my bladder, which only increased the urge to go. I’d go to the bathroom every 30 minutes, and that included throughout the night, disrupting my sleep. Yet no matter how often I went, the pain always remained, rarely letting up or passing, only eased temporarily through emptying my bladder.

I slowly started to put my social life on the back burner because it was becoming very difficult for me to enjoy the company of my friends when I felt like I had a bowling ball, with knives protruding out of it, sitting on my bladder. On top of that, I started to notice that most of my favorite foods were making symptoms worse which restricted me even more because social outings typically involved getting food. This is when I started to really isolate myself. The only time I would leave my house would be to go for short walks around my neighborhood, but even that started to become more and more challenging everyday. Every step I took would cause a sharp pain, traveling from my pelvis floor all the way up through my abdomen. Things continued to get worse, making it impossible for me to walk around my block. The constant pain that I was experiencing kept getting worse and at this point I had officially lost all control of voiding and I developed a new symptom, a sharp pain in my rectum which put me in the hospital. During my time at the hospital, I was put through my third CAT scan and second ultrasound to find that my rectum and intestines were severely inflamed which caused (sorry if TMI) me to bleed from an area where you shouldn’t be bleeding from. This is where I hit rock bottom.

It wasn’t until late August, when I saw a real urologist, that I was finally correctly diagnosed. There’s chronic inflammation in my bladder that causes pain, as well as a decreased bladder lining that heightens nerve sensitivity. Additionally, there’s chronic inflammation in the muscles that are responsible for bladder and bowel function. These are real conditions with real diagnosis and FDA-approved treatments. Although I finally have my diagnosis, my struggle isn’t over. There is no cure for either IC or PFD. In fact, it took me a very long time to accept what is now my “life-long-friend.” I spent about two weeks feeling sorry for myself, and although I got most of that out of my system, I still have minor break downs which I think is very normal. The treatments available have a lot of side effects, and there’s a great deal of trial and error to figure out if they’ll even work. I’ve stayed away from trying the different drugs because I fear that the side effects will be worse than the actual problems I am dealing with.

I’ve opted for muscle relaxers and an antidepressant for an off-label treatment of this condition. DULoxetine is typically used to treat depression, but in my case it is being used to target nerve endings in my bladder. In addition to taking these medications, I have attended pelvic floor physical therapy where I receive massage therapy and dry needling to ease the tension in my pelvis, legs, stomach, back, and glutes. I learned different stretches to help ease the tension in my legs and stomach and discovered new techniques for managing my urges and the anxiety that goes along with them. I relearned how to breathe and urinate properly and have had to make MAJOR lifestyle changes. I was sidelined from all physical activity which meant no more leisurely walks around my block, no more ice hockey, and especially no heavy lifting. I was put on a very strict diet which consisted of bland, tasteless foods.

It helps me to be around friends and family who are supportive and don’t judge my constant restroom visits, bizarre diet, and radical lifestyle. I’ve slowly started to reintroduce foods into my diet and have focused on putting on the weight that I had lost over the summer. I started getting back into exercising, which went against my physical therapists wishes, and I have had both major and minor set backs because of it. I will not stop doing the things that I love, though. As many of you know, I joined the OTF family not that long ago. I have built a lot of wonderful friendships with fellow classmates and with the staff and everyone has been nothing but supportive. Even on my worst days, I always get a fist pump from the person next to me or some words of encouragement from the coaches. I’ve also recently started up with a personal trainer who has been working closely with me on my fitness goals and nutrition. Since starting with her, this is the closest I have felt to “normal” in a very long time and what excites me is that this is just the beginning. I finally have a light at the end of the tunnel.

It’s hard living with this invisible disability, and it’s been difficult for people in my life to understand what it’s like to feel like you have to pee all day long and contend with a chronic pain equal to or worse than a UTI. It sucks having to be on a very limited diet for the rest of my life and it frustrates me knowing that physically speaking, I will always be limited. It can be awkward to talk about bladder pain since conversations around urinary issues are often considered distasteful. But the more we hide our pain and avoid discussing it, the less awareness there will be around diagnosing and treating it. I’ve been sharing my progress and fitness journey on social media. I initially thought that I was being annoying about it but I have had a lot of people reach out to me thanking me for sharing my story. A lot of people have things going on and it may very well be things you can’t see. Make sure to always be kind as you don’t know what people may be dealing with.