Is any of the following familiar?

• Lengthy diagnosis times while enduring sidelining pain and embarrassing symptoms
• Doctors ping-pong you to other doctors.
• Doctors prescribe medication when the diagnosis is unknown.
• Health insurers provide unclear coverage.
• Incorrect, disputed medical bills plague your inbox.
• Surgery (or other treatment) isn’t guaranteed to fix the problem.

If any of these exasperating experiences are familiar, in this series, I offer empathy and tips to navigate an unhealthy medical system.

In part 1, I discuss diagnosis hurdles and empowering, experience-based propellors to clarity. In upcoming posts, I’ll focus on easing health insurer and medical bill uncertainties, as well as post-surgery disappointment and symptom management.

For those suffering from endometriosis, or any condition with an unknown cause and limited treatment options, this series is for you. You’re not just another. Your health is valuable.

Endometriosis Enigma

What is endometriosis? Based on my lay understanding¹, endometriosis occurs when uterine or uterine-like tissue is outside the uterus but behaves like it’s inside the uterus. Uterine tissue is supposed to thicken, bleed, and leave the body. When uterine tissue is outside the uterus, it still thickens and bleeds but doesn’t leave the body. If uterine tissue can’t leave the body, it creates damage: scars, adhesions that cause tissue and organs to stick together, and painful, inflammatory cell growth in the wrong places, like ovaries, fallopian tubes, abdominal walls, intestines, the bladder, diaphragm, and more.

Endometriosis is an enigma. Its cause is unknown, and its diagnosis is a time-consuming, biological puzzle. Due to symptoms manifesting as a variety of fertility, gynecological and/or gastrointestinal issues, as well as little confidence in diagnosis without cutting someone open, an endometriosis diagnosis may take years.

Symptoms may present as painful periods, heavy periods, painful sex, ovarian cysts, fertility obstacles, digestive issues, nausea, bloating, nerve pain and/or fatigue. Imaging tests offer clues, but doctors tend to base an official diagnosis on visual confirmation during surgery.

There is no cure. Even with a hysterectomy (surgical removal of the uterus) or menopause (natural or chemical), if endometriosis is left within the body and is outside the uterus, it will still cause problems.

If pregnancy isn’t a near term goal, hormone treatment and chemical menopause are options. However, if chemical menopause ends before natural menopause, endometriosis may return. Pregnancy helps symptoms (being without a period for several months), but endometriosis can also prevent pregnancy and cause miscarriage.

The best option to relieve symptoms and allow pregnancy is deep excision surgery (not laser surgery, as it can worsen inflammation), although regrowth may still occur.

In cold, comfortless summary, endometriosis is a loser. In my personal pillage to rob endometriosis of its painful power, here, I decode how to unmask an elusive cellular enemy.

Diagnosis Dilemma: Physician Ping-pong & Missed Diagnosis

To offer empathy and insight – no pity allowed – humbling digestive distress drove my diagnosis quest. I pursued a diagnosis with 2 gastroenterologists, 2 OB/GYN’s, and a gynecologic oncologist for over a year. For nearly two decades before the digestive issues began, I had very likely been misdiagnosed with burst ovarian cysts.

Both gastroenterologists and OB/GYN’s sent me to the other specialist: the gastroenterologists said it was female issues; the OB/GYN’s said it was nothing or digestive issues.

Even though a pelvic CT scan showed endometriosis clues, OB/GYN #1 advised me the gastroenterologist who ordered and radiologist who reviewed the CT scan weren’t reliable, and no, it wasn’t endometriosis. Based on OB/GYN #’1’s feedback, I dismissed endometriosis.

About six months later, my husband took me on our first ER date. My symptoms were extreme bloating, my period was 10 days late, and I was in a high level of pain for about 3 days. I felt like a chemical bomb exploded inside me. My entire abdomen – nearly, torso – felt like a huge, pressurized balloon.

The ER staff diagnosed me with a burst ovarian cyst. I’d had ovarian cysts burst since college and increasingly painful periods in my twenties and thirties. Previous doctors diagnosed ovarian cysts as the culprit for extremely painful periods.

After our surprise ER date, my digestive symptoms and periods deteriorated into unmanageable and difficult-to-drink-or-eat territory. Since I wasn’t comfortable with OB/GYN #1’s dismissive approach, I made an appointment with OB/GYN #2. OB/GYN #2 also didn’t think I had endometriosis and instead, a dermoid cyst and gastroenterological problems. OB/GYN #2 ping-ponged me back to the gastroenterologist.

My experience with gastroenterologist #1 was riddled with problems (difficulty reaching the doctor to interpret my CT scan, the doctor prescribed drugs without a diagnosis, and a nurse hung up on me), so I made an appointment with gastroenterologist #2. At that point, I had logged everything I ate for about a year, as well as my cycle, and I was in the process of an elimination diet. I noticed a pattern: the worst symptoms surrounded ovulation or my period. I communicated my observations to gastroenterologist #2. After an endoscopy and based upon my documented pattern, gastroenterologist #2 concluded my digestive issues were cyclical and hormone-related. Gastroenterologist #2 sent me back to OB/GYN #2.

During the follow-up with OB/GYN #2, I told the ultrasound technician I disagreed with the dermoid cyst diagnosis and thought it was endometriosis. In that very visit, OB/GYN #2 said the technician thought I had endometriosis, as my ovaries appeared frozen together during the ultrasound. OB/GYN #2 advised of 2 options, since I want children: 1) try to get pregnant, or 2) see a surgeon.

Surgery changes your body with a no-return policy. I’ve regretted past back surgery and foot surgery (back surgery didn’t fix the problem, and foot surgery caused more problems). Unless absolutely necessary, I’m against surgery.

After OB/GYN #2 provided the 2 options, I researched and discovered endometriosis caused a substantial likelihood of fertility issues and miscarriage. I was baffled why she recommended trying to get pregnant, when endometriosis had a high miscarriage rate. I opted to see the surgeon, a gynecologic oncologist.

While at the surgeon’s office, the surgeon said he wasn’t certain it was endometriosis. I pointed out: the pelvic CT scan showed my ovaries appeared centralized and may be stuck together due to endometriosis, along with the recent ultrasound confirming the same. Then, we were on the same page.

Surgery confirmed endometriosis stuck my ovaries, fallopian tubes and uterus together (wrapped like a ball – the pictures are wild), was sludge on my abdominal walls, had stuck digestive components to other structural elements (causing severe digestive distress), and had grown into my bladder and diaphragm. OB/GYN #1 was decidedly wrong, and I had to advocate for an endometriosis diagnosis with OB/GYN #2 and the surgeon.

The best part was the visit with OB/GYN #2 after surgery. She said my problems were a digestive issue. Yes, she had the operative and pathology reports. Her chosen ignorance may have been a test to act civilly in that moment. And, yes, she’s no longer my OB/GYN.

Diagnosis Solution: Be Your Own Documentarian & Diagnosis Detective

Even though the CT scan from gastroenterologist #1 uncovered an endometriosis clue, written plainly by the radiologist, OB/GYN #1’s and OB/GYN #2’s original medical advice was unequivocally misguided, costly, and caused longer suffering. I had to point out evidence of potential endometriosis to the surgeon, who had my medical records.

I think most doctors serve patients with best efforts, but my diagnosis dilemma taught me an unforgettable lesson: be your own documentarian and diagnosis detective. Doctors may be constrained by insurance and financial pressure, which leaves patients with less clarity and more confusion. Ultimately, finding the answer was and is my responsibility.

I was desperate. I began preparing for doctors’ appointments like a work presentation. I studied my medical records and my own documentation. I needed to be able to analyze, on an elementary level, my test results, beyond my doctors’ conclusions. Without this preparation, I wouldn’t have been able to think independently and confidently to detect a diagnosis, despite the experts’ miss.

Without a food journal – including symptom notes, cycle tracking, and recordation of results from an elimination diet – and without a keen awareness of my medical records, my own research, advocacy in the doctor’s office, and – last, but certainly not least – a strong dose of prayer, I don’t think I would have discovered endometriosis.

From my documentation efforts, I narrowed down the worst digestive symptoms to the time around ovulation and my period. I shared this observation with gastroenterologist #2, who took what I said seriously. While being ping-ponged between gastroenterologists and OB/GYN’s, I researched and discovered gastroenterological and endometriosis symptoms may be conflated. In my next ultrasound, I amicably shared with the technician: I thought my diagnosis was endometriosis, not a dermoid cyst. At that point, I didn’t mention my endometriosis suspicions again to OB/GYN #2. As I’ll explain later, I didn’t think she’d value my carefully documented, lay observations.

Opaque Priorities: Doctors’ Conflicts of Interest & Dismissive Attitudes

Doctors’ conflicts of interest and dismissive attitudes are ingredients of an unhealthy medical system. For instance, although gastroenterologist #1 didn’t diagnose my condition, he prescribed medication. I didn’t understand why he would want me to experience (potentially harmful) chemical changes in my body, when he didn’t know what was wrong.

I discovered, years later, this influential doctor has been paid over $400,000 from medical drug and/or device companies, according to Open Payments data from CMS per the Sunshine Act. I’d like to assume gastroenterologist #1 had my best interests at heart, but a prescription without a diagnosis and significant income creates doubt. Since I no longer have the prescription, I wasn’t able to connect the specific company with the prescription.

The OB/GYN’s dismissed endometriosis, despite a CT scan noting, “medialization of the ovaries in the central pelvis which is nonspecific but can be seen with endometriosis”. On several visits, including after my surgery confirming endometriosis on various organs, OB/GYN #2 said my symptoms were digestive issues.

Throughout my visits with OB/GYN #2, even though I had taken careful notes of symptoms and prepared questions, in my view, she was impressively condescending. Due to her closed-minded approach, I continued my endometriosis advocacy with her ultrasound technician. To my tremendous relief, the technician looked, saw and communicated endometriosis clues from that particular ultrasound to OB/GYN #2, who only then said endometriosis was likely.

Clarifying Solution: Choose a Transparent Physician Who Listens and Makes Time for You

My surgeon gave his valuable time to answer my long list of questions, listened intently, and candidly shared the limits of western medicine regarding endometriosis. He wasn’t sure he could stop the digestive issues with surgery, but his plan (and he did!) was to remove endometriosis and restore my reproductive anatomy. He took pictures during the surgery and reviewed them with me, which illustrated its severity.

Choose a physician, and certainly, a surgeon, who patiently and transparently addresses your concerns. Run a search on Open Payments data from CMS per the Sunshine Act, to determine conflicts of interest. The search feature is easy to use. Although I had negative experiences, I’m confident if you keep searching, you’ll find a trustworthy physician.

You’re not just another patient. Despite physician ping-pong, missed diagnosis, conflicts of interest, and dismissive attitudes, you are too valuable to give up on a diagnosis. Be your own documentarian and diagnosis detective, and choose a transparent physician who listens and makes time for you.

Although I hope there are as little similar experiences out there as possible, I’d love to hear your story. If you’d like to share a similar experience, comment below or reach out at megan@anothermegan.com.

In medical uncertainty, you’re not alone, and you’re not just another.

Coming Soon

Don’t miss Part 2, “How to Navigate Endometriosis in an Unhealthy Medical System: Health Insurer Evasion & Medical Bill Madness”, where I’ll focus on tips to ease your experience with an unhealthy medical payments system.

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1. For a surgeon’s description and deep dive into the science behind endometriosis, The Doctor Will See You Now is a stellar resource. I strongly encourage anyone suffering from endometriosis to listen to this book on Audible (it’s worth the 6 hours, and it’s free). Thank you to my friend, Don, who recommended this to me. It gave me hope and a less cynical view of doctors. ↩︎