Life with endometriosis can feel like a never-ending game of Whac-A-Mole, constantly battling symptoms that pop up and refuse to be tamed. But that's not the only challenging aspect of living with endo – finding the right doctor can be a whole other can of worms. In fact, it's a bit like dating, but with higher stakes and a whole lot more medical jargon.
For years, endometriosis has been my not-so-friendly companion – a constant source of pain and frustration. I've seen more doctors than I can count, and each time, I walked away feeling like I'd been on the world's worst blind date. You know the type – lots of small talk but no real connection or understanding. My symptoms and concerns were often brushed off or met with the same tired solutions, and it seemed like no one was truly listening to me.
Then came my last surgery, which was supposed to be the answer to my prayers. Spoiler alert: it wasn't. Instead of relief, I was left with the same pain and frustration. My faith in the medical community was at an all-time low. So, I did what any reasonable person would do after a string of bad dates: I stopped seeing doctors altogether.
Over the years, my endo progressively worsened, but due to the trauma from my previous medical experiences, I avoided seeing a doctor. Then, one fateful day, my partner and I were casually strolling through the neighborhood when I stumbled upon the book "Beating Endo" at a free sidewalk book stand (insert dramatic music here). We exchanged glances, and said "what are the odds?" It felt like the universe was giving me a cosmic nudge. Intrigued, I decided to read it to see if I would learn anything new. After devouring it cover-to-cover, I emerged armed with a wealth of knowledge and determined to find the specialist who would hopefully improve my quality of life.
The search for the right doc is like a bizarre game of "endo specialist Tinder." Swipe left for doctors who didn't have a clue, and swipe right for those who seemed like potential matches. After a freaking long process of weeding through countless doctors and contacting my insurance multiple times, I finally found two specialists in my area who seemed promising and were within my networ ( hell to the yeah!). I booked appointments with both, eager to see how these endo specialist could help me.
Doctor Numero Uno started off on a high note. He greeted me warmly and asked me to describe my endometriosis symptoms and how they affected my daily life. As we discussed my medical history, he nodded sympathetically and scribbled notes. He then launched into his integrative approach to treating endo, and I was all ears. He recommended that I see a nutritionist, urologist, gastroenterologist, psychologist, and a pelvic PT as part of my endometriosis treatment options. Plus, his approach to treating endo as a full-body disease was exactly what I was looking for.
However, things took a turn for the worse when we discussed my fibroids. He immediately responded that he doesn't give any of his patients pain medication, which left me feeling like I was talking to a brick wall wearing a stethoscope. I wasn't there to score pain pills; I was there looking for a solution to my pain. As the appointment continued, he suggested the same old treatments I've tried or have been suggested before, like Lupron, Orilissa, and birth control pills. It was like hearing a broken record of bad advice. My frustration rose, and tears welled up in my eyes.
When I asked him about alternatives, he nonchalantly suggested a medical trial as if I should be thrilled to be a human guinea pig. I was hesitant when he brought up a trial program. He explained that the drug had shown promising results in treating endometriosis, but it was still in the trial phase and was FDA approved for another condition, just not for endometriosis. He thought it might be a good option for me, but I was more skeptical than a cat watching a vacuum cleaner demonstration. The doctor was sympathetic to my concerns and explained that I would be closely monitored during the trial to ensure my safety. He felt it was worth a try, given how much I was struggling with my endometriosis. I left his office feeling defeated and my hopes crushed like a hopeless romantic after a bad first date.
But here's the kicker: when I called the doctor's office a few days later to ask more questions about the endometriosis medical trial, I found out that if the medication did work for me and he were to prescribe it to me as a medication, it would cost me 5 grand a month out of pocket after the trial was over. Five grand a month? Are you kidding me? That's like a second mortgage payment or a lifetime supply of avocado toast. What kind of BS is that? I then realized this would not be an option for me because if it worked I would know that the only thing standing in the way from me an potential relief is $5,000 a month and I think that thought alone would have sent me on a downward spiral.
Next up was Doctor Numero Dos. When I entered his office, I immediately noticed his cold demeanor, but I was determined not to judge him based on his bedside manner alone. After telling him about my bowel pain, heavy periods, and the impact of endometriosis on my daily life, he suggested surgery to excise my endometriosis and fibroids. Finally, a doctor who understood the severity of my condition and was willing to take action!
He mentioned that I would need to see a gastro specialist, as it sounded like there was endo in my colon. Two surgeons would be working on me during the same surgery. I started to feel a sense of relief, even though his bedside manner was lacking.
But then, he dropped a bombshell, and it wasn't the fun, confetti-filled kind. When I asked him about what my aftercare would be like after the excision surgery for endometriosis, he said that recovery may take a couple of weeks, but after that, I'd be fine. That struck me as a red flag because in the books I've read and the research I've done, they suggested continuing with pelvic floor therapy, endo friendly diets, yoga, acupuncture, and more as part of a long-term endometriosis management plan. Endo is a lifelong disease; it's not a one-and-done surgery like fixing a leaky faucet.
As I left Doctor Numero Dos' office, I felt a mix of emotions, like a bag of mixed candies where some are delicious and others are just plain weird. On one hand, I was glad to have found a surgeon who was willing to perform excision surgery, but on the other hand, I was disheartened by his dismissive attitude towards long-term care and management. It seemed like he was only interested in treating the immediate problem than helping me navigate life with endometriosis, as if he were just slapping a Band-Aid on a broken dam.
So, my quest for the perfect endometriosis specialist continues, much like navigating the treacherous waters of dating in search of "The One." I know I'll find the right doctor who will help me manage my endometriosis in the best way possible, taking into account not only my immediate surgical needs but also long-term strategies for improving my quality of life. And if you're in the same boat, don't lose hope. Remember to research and explore all available options and never be afraid to seek a second, third, or even fourth opinion. Keep swiping right, asking questions, and advocating for yourself.