When the Journey Hurts
Let’s plan an adventure. Backpack… check. Sunscreen… check. Tent… check. Sleeping bag… check. Six medications… check.
My packing list includes pills. A lot of them.
I get a handful of direct messages every day from women suffering with the same disorder I have. They want to know how I could possibly have Interstitial Cystitis and still lead this adventurous life. I don’t always have the time to give the loving response I wish I could always offer. I am writing this post to tell my story of diagnosis, share what helps me manage my health and talk about how I accomodate my health needs when I’m planning an adventure.
*Disclaimer: Please discuss treatments, procedures, and medications with a medical professional. This post does not contain medical advice. This is MY health story.*
I was in an Oklahoma City apartment with my boyfriend at the time in May of 2013. I went to the bathroom in the morning and it felt like chards of glass in my urethra. The pain didn’t end when I was done peeing. It actually didn’t dull without the help of opioids for two years.
I returned home to Phoenix where I was reporter/anchor at Fox 10 News. I had a history of urinary tract infections since the time I was a little girl so I made an appointment with my gynecologist to get the typical dose of antibiotics knowing it would be a simple serving of Cipro or Bactrim… the usual.
Before I could get to an appointment, the pain became so severe I left a reporting shift to go to the emergency room. I went to the Mayo Clinic in Scottsdale confident they would know just what I needed to make the suffering stop. At just 25 years old, that was the first of many times I would feel the violating discomfort of a catheter entering my bladder. After removing that demonic device and testing my urine, the doctor told me words I simply couldn’t believe “There’s no infection present. We don’t know what’s causing your pain.” As desperation set in, he offered me something else that would also be the first of many- a percocet for the pain.
I left the ER of a world-renowned hospital with nothing but incomprehensible suffering and a prescription for painkillers in my purse.
I went back to work the next day struggling to think straight…struggling to stay sane. Then, I got a call from a staff member at Mayo Clinic. The team determined maybe my test was a false negative. They decided to give me antibiotics just in case there was an infection. For five days I went to the hospital where they gave me a shot. I’m still not sure exactly why I had to take an injectable antibiotic but I wasn’t asking too many questions about anything that could take me out of my misery. I was elated. I remember thinking “Thank God! This nightmare is ending! I’m going to be better as soon as the antibiotics kick in.”
Then the worst day of my life rolled around. Memorial Day of 2013. I got my last round of antibiotics. The nurse asked me how I was feeling before she injected me. I was still in hellacious pain. Our conversation following my honest response dulled my glimmer of hope in an instant. No one knew what was wrong with me. They referred me to a urologist and sent me on my way. I sat in the waiting room crying alone for about an hour before I had the strength to drive home. “I was a medical mystery at the Mayo Clinic? This pain is forever.”
With a broken heart and an exhausted brain, I went to a urology appointment (not at Mayo Clinic) where I was poked with a catheter yet again. The doctor informed 25-year-old me that I would never have sexual intimacy again, I should go on disability and I needed to be on OxyContin, Percocet and muscle relaxers to manage my pain (yeah, at the same time). On top of my physical pain, I was slipping into a deep, deep hole of depression. Oh and top of that again, the antibiotics were started to wreak havoc on my body and I had no idea. We’ll talk more about that in a minute.
For the next two years, my life became a cycle of surgeries (I think I had 13 in two years), second (then like 17th) opinions, experimental drugs, pills, medical debt, struggling to hold onto my job, endless tears, and suicidal thoughts. I was broken in every way possible.
Doctors would throw out the words Interstitial Cystitis as a possible option only to determine that wasn’t my problem because that’s a bladder disease and my pain was in my urethra.
Oh and let’s not forget, when I did finally see the urologist at Mayo Clinic. He gave me a prescription for Xanax and offered me absolutely no medical advice other than to “see a psychologist”. I’m still not sure how I managed not to slap that SOB across the face.
I also had a boss who said “well, you look fine” and by this time a fiance who told me “it’s all in your head”.
I knew my problem was real and urological, however, I did still take the Xanax….
What no one tells you about chronic illness is what it does to you emotionally. Pain made me completely irrational. I was already on edge all the time because my urethra felt like it was being stabbed with a hot metal skewer doused in acid. Any little thing whether is was a rude comment from my boyfriend, a nasty phone call from a newscast viewer sent me over the edge into a fit of anger or sadness. Mix in the fact that I had opioids constantly flowing into my body at inconsistent intervals and there is really no understanding exactly what the hell was going on in my mind. I was in a fog of percocet highs and just drifting through life trying to hang on for one more day in hopes that someone could figure out what the hell was wrong with me and the pain would end.
Did the pain ever end? No.
Did it get better? Yes. Here’s how.
I got sick of being sick.
It become quite apparent I was going to feel like shit whether I stayed on the couch watching The Walking Dead or whether I actually got outside and did the thing I missed the most- going on a hike.
Pain pushes the things that make you happy to the last of the priority list. I was just trying to make it from sunrise to sunset every day with a fake smile on my face.
I forced myself to return to normalcy, but it took time.
Before the pain started, my boyfriend had bought me a new pair of hiking boots. I never even got to wear them. I finally sat them out in the living room where I could see them. It was a reminder of what was waiting for me if I pulled myself away from the pain. Pain became my identity, leaving it felt as uncomfortable as my urethra did at this point.
Finally, I put the boots on and I went for a little hike in the Phoenix Mountain Preserves. My body didn’t feel better, but my mind did. Feeling the sun on my skin, hearing the birds chirp, fresh air… it literally gave me my will to live. Again, I’m not saying this made my body feel better but it sure didn’t make it feel worse.
The Mohave trail became my medicine.
Making the choice to return to my hobby was the first of many good choices. I left the Debbie Downer Interstitial Cystitis boards where everyone dwelled on their IC online. Those people lost hope a long time ago but I didn’t have to.
Instead of reading other sufferers’ research, I did my own. I spent most of my free time learning about IC, how autoimmune disorders work, how one part of the body affected another and how homeopathy could help me put together the puzzle pieces.
I went to a doctor named Dr. Sara Penton in Scottsdale, AZ who specializes in biofeedback. She started reducing my pain by reducing inflammation. My pain meant something to Dr. Sara and she worked diligently to help me find solutions. Through her treatments I was able to stop taking a steady dose of Percocet. She was also the first to tell me that part of my problem was actually brought on by the dozens of antibiotic treatments that had been thrown at me through the journey.
Then there was Dr. Robert Stuart Fowler, also in Scottsdale, AZ. Dr. Fowler discovered the antibiotics caused a horrible cause of Vulvodynia in additional to my urethral problems. He also determined I had a hormonal imbalance. To this day I still see Dr. Fowler. This man is a brilliant genius. He saved my very existence with his groundbreaking ability to help women with pelvic pain.
I saw Dr. Mario Castellanos at St. Joe’s in Phoenix to manage overall pelvic pain. He administered nerve blocks to help reduce pain. I also still see Dr. Castellanos. His gentle demeanor helped me through this horrible time in my life. I cried in his office more times then I count and he never discounted the severity of my suffering.
My pain never went away but it was manageable. By 2015, I left my TV career and canceled my wedding. As I started to dig myself out of the trauma of having an undiagnosed disease, I decided to return to television. I moved to San Diego for a dream job forecasting weather and living by the beach.
The pain was managable for the first few months. I would take a painkiller about once a week for severe pain but beyond that things seemed to have really turned around. Until December when IC came back with a vengeance. Here I was, back to missing work and barely surviving. Not being able to get back to Arizona to get the painkillers I needed right away, I called the first San Diego urologist who came up in my insurance search. The doctors were booked out for months. After pleading with the receptionist at UCSD Medical Center to understand the urgency of my situation, she transferred me to a saint-Rudy. Rudy recognized my name. “My favorite weather girl,” he exclaimed. I had never been one to accept perks of my job but in this moment, I did not care what it took to get me an appointment. Rudy got me in later that week.
If Rudy was a saint, then that must make Dr. Lowell Parsons, an actual angel sent from God. I filled out a questionnaire in the waiting room asking me all these questions about my peeing habits. I’d taken the test a million times… I definitely rolled my eyes upon its presentation this go round. Dr. Parsons reviewed my test form in front of me, looked up and said “has anyone ever told you you have Interstitial Cystitis?”
I explained to him I’ve always been told I didn’t have that because my pain is urethral and not just in my bladder. He asked me how long I had been in pain and when I told him since 2013 I could sense he truly felt sorry for me that help hadn’t come sooner. He explained to me that I probably had IC my whole life and that’s why I had urinary problems as a little girl. He explained changing hormones as I got older led me to have horrible IC now. He explained to me most women get diagnosed in their early to mid-20s. He explained to me everything that made no sense for the past two years. He explained to me why I was in pain. Dr. Parsons put the puzzle together. Dr. Parsons put me back together.
He gave me a prescription for Elmiron. “I’ve taken that before. It didn’t work and I wasted thousands of dollars because insurance didn’t cover it,” I said.
“They told you to take it with a whole glass of water right,” he asked.
I told him that was correct.
“The medicine needs to coat the bladder. Take it with as little water as possible. It will start working in four to six months,” he said. He also put me on a higher dose than the other doctors had because I needed the medicine to be highly concentrated when it passed through my urethra. I took that full dose for about two years until dropping down to a “maintenance” dosage.
The medicine costs $1,200 a month. Did I come up with the money? Well, I’m still paying off some of the debt but I feel lucky I GET to pay for a solution.
For what it’s worth here are a couple other little fun facts. I had an unrelated skin procedure that caused some nerve pain. The doctor prescribed Neurontin to make it stop. It also helped control my IC pain before the Elmiron kicked in. Additionally, I started taking Singulair for asthma in 2016. Singulair is now seen as a way to reduce inflammation for IC sufferers.
I also saw an incredible acupuncturist in San Diego named Sara Sanger. Get this- she had IC too and healed herself! She gave me an herbal remedy to keep my hormones from fluctuating during my cycle. She also used acupuncture to help reduce inflammation and stagnation.
Despite everything that worked so well to control my pain, I still would get horrible IC flares leading up to and during my cycle. I now have an IUD to eliminate it altogether until/if I decide to have a child.
Let’s review the pieces of my puzzle:
- Interstitial Cystitis- AKA a depleted bladder lining caused by autoimmune problems
- Hormones- now commonly associated with IC
- Nerve pain- I learned nerves go haywire in the region of chronic pain
- Antibiotic damage- I will never take Cipro again
- Inflammation- reduce it, reduce the pain
Before we discuss my medications, please realize every body is different and you must have conversations with your doctors about any of part of my strategy that you want to try.
Here’s what I take now:
- Elmiron- 300mg 3 times a week for maintenance (Used to be 600mg every day)
- Singulair- 10mg each night
- Neurontin- 100mg each night
- Pyridium- 200mg as needed to “numb” urination (This is ALWAYS on me)
- Estradiol – estrogen supplement to regulate hormones
- Baclofen/Diazepem (muscle relaxer for when I have to be on a flight or long drive… obviously, not as driver)
(Notice no more painkillers… yay!)
These are the most important items I pack every time I embark on a journey and sadly, my pain is at its absolute worst when traveling.
Let’s talk about my preparations:
I use a daily pill organizer, yeah the one like grandma and grandpa have. It’s honestly the best way to stay organized and not have to take all of your pill bottles. I keep it in my purse so that I always know where it is and it never gets separated from me on a flight or long drive.
The only pill bottle I take is for my Pyridium. This isn’t a daily need on a normal day but if my flare gets really bad on vacation, I could end up taking the whole bottle on my trip. In fact, I have one bottle in my purse and one bottle in my hiking backpack at ALL times. I typically take 1-2 Pyridium every day of vacation.
Dr. Parsons says most of his IC patients go into a flare when flying. I am no exception. Flying is absolutely brutal. From the time I flew to Iceland years ago to the time I flew to Salt Lake City this summer, it is not fun to endure a post-flight flare. I don’t have the answers for preventing this pain but here are my recommendations to at least help reduce it:
- Take extra Elmiron leading up to your flight (please consult your doc about what “extra” means to you. I had this convo with Dr. Parsons)
- Wear loose-fitting clothing
- Pack a muscle relaxer so you can use it at bedtime to help relax the pelvic floor and calm everything down (Also, these must be kept cold so plan to pack with an ice pack in your checked baggage)
- Plan activities that aren’t strenuous for the first day of your trip
- Plan a day to recover before returning to work/school after a trip
My plan is not foolproof… IC sucks and there is no cure but this is what has helped me. Inevitably, the pain leads sneaks up on vacation. Am I gonna stop going on vacation? Hell no. I’m in charge, not IC. I pack up my pills and I take them diligently even when I’m sleeping outside.
If you have made it this far in my story, you have got to be as desperate as I was. I am begging you to not give up. This pain is not forever. You must fight for your future. Ask questions. See new doctors. Demand new treatments. Try. Try. Try.
Do the things you love. Whether it’s hiking like me or dancing or painting or ice skating. Go do it. Prove to your mind it is stronger than the pain.
You must learn to manage IC, or it will manage you.