BUT YOU DON'T LOOK SICK

I write this not for myself now, but for myself a year ago.
This information would have dramatically changed her life.


The start of 2015 brought with it frigid North Dakota wind and snow, a perfect disheartening parallel to the storm that was brewing in my body. Though most of my life I’d struggled with keeping a healthy weight and mind, by the end of 2014, I’d finally worked to gain control over both. I would go on to explain to doctors that I was in the best shape of my life, both physically and mentally, when the symptoms of my illness took precedence in 2015. Though that simple fact would be continually ignored by physician after physician, I never forgot it, and when it later came to diagnosing my own illness in order to receive proper medical treatment, I focused on that rounded-out notion of health in order to find it once again.


“But who can remember pain, once it is over? All that remains of it is a shadow, not in the mind even, in the flesh. Pain marks you, but too deep to see. Out of sight, out of mind.”

– from The Handmaid’s Tale by Margaret Atwood


“The clinical definition of ENDOMETRIOSIS is the presence of tissue somewhat resembling—but not histologically identical to—the endometrium, including both glands and stroma, found outside the uterus in an ectopic location. What that means is, tissue similar to (but different from!) the lining of the uterus (endometrium) is found thriving elsewhere in the body—usually in the pelvis, but sometimes even in remote locations (even the brain, though this is extremely rare). Traditionally, both glands and stroma must be present for a confirmed diagnosis of endometriosis. Diagnosis is considered uncertain unless surgery is performed and biopsy-proven diagnosis can be obtained.”

Definition borrowed from The Center for Endometriosis Care in Atlanta, GA, where I was treated by Dr. Ken Sinervo. Emphasis theirs.

 

 

ADENOMYOSIS (add-en-o-my-OH-sis) is defined as ‘the presence of endometrial tissue within the myometrium.’ (The myometrium is the medical term for the muscular portion of the uterine wall.) In the past, adenomyosis was referred to as ‘endometriosis interna’ in the medical world, and sometimes as ‘inside-out endometriosis’ in lay terms. What we commonly call ‘endometriosis’ can also be called ‘endometriosis externa’.

Adenomyoma (add-en-o-my-OH-ma) is the name given to an area of adenomyosis that is encapsulated by myometrial tissue. Because of the presence of adenomyosis, this complex of tissue is differentiated from a myoma (a fibroid tumor).”

Definition borrowed from The Center for Endometriosis Care, Dr. Robert B. Albee, Jr.


My local hospital allows visitors of the canine persuasion. My miniature Pomeranian, Samus, loved stopping by to give me power snuggles.

My first hospitalization was in the spring of 2015, after my blood pressure during a clinic visit was found to be dangerously high. I’d felt off for days, experiencing the urge to both faint and vomit constantly. Though I’d managed to keep both at bay, I nonetheless found myself stuck in a hospital bed with an IV in my arm. That stay lasted only one night, and since two of my best friends happened to be in town visiting, we turned the experience into a slumber party. It wasn’t so bad, and I was optimistic when I was sent home the following morning. It had been a fluke, and I was fine.

I was fine, but my stomach wasn’t. I felt a constant mix of nausea and acid anytime I tried to eat (or not eat). I was sent to a gastroenterologist, who did a scope of my stomach and determined that I had some acid reflux, but was otherwise healthy. Again, I was being told I was fine, so I believed it. But my stomach wasn’t hearing it.

It was during that summer that fainting and vomiting became a regular part of my life, as did trips to the ER. I was hospitalized for 3 days after one such visit, because I couldn’t stop throwing up or keep any food down. Since the scope of my stomach hadn’t revealed anything incriminating, there was no known reason that I should be so sick. Unfortunately, as time went on, vomiting wasn’t my only issue.

I was in and out of hospitals so many times in the past few years that I’ve lost track of the count. While I didn’t have a good experience with a vast majority of doctors, I had the privilege of dealing with a fabulous nursing staff no matter where I went. I met you when I was in the worst place of my life, when I had nothing left to give, and your vast compassion was a huge contributor to my resilience. Thank you.

I had also begun to experience horrific sharp, saw-like pain in my right pelvic region while menstruating (and ONLY while menstruating). One of my ER doctors recommended a local gynecologist, who within minutes of listening to my symptoms determined I had endometriosis. Though he seemed confident of his diagnosis, he wasn’t in any hurry to treat me. The issue? At 36, I had never been pregnant—not even after 15 years of marriage. (For perspective, a couple is considered “infertile” after they’ve been unable to conceive for 1 year.) And in this doctor’s opinion, because I was infertile, I wasn’t his problem. Knowing the wait to get an appointment was over 2 months, he turned me over to a fertility doctor.

My body couldn’t hold out that long though, and I was back in the ER and hospitalized 2 days later. My doctor negotiated with Dr. Confident Gynecologist to see me again. I was kept in the hospital for several days until I could get into his office, and was nice and doped up for the 2-hour drive there. He did a physical exam, affirmed again that he believed I had endometriosis, and went on to explain the politics of booking a room for surgery as he managed to fit me in 2 weeks down the line. My husband, Casey, and I both pleaded with him that my pelvic pain was getting progressively worse, and I honestly didn’t think I could make it 2 weeks until the exploratory laparoscopy. But he simply reiterated that hospital politics were out of his control, and sent me home. I wept the entire 2-hour drive, and stopped midway to yet again puke my guts out.

These are the lies clinical depression tells me. However, using techniques acquired from cognitive behavioral therapy, I’m able to see them for what they are and tune them out. If your brain is also bombarded with this bullshit, please, find someone to talk to. You’ll feel so much better.

A common myth surrounding mental illness romanticizes creativity as a symptom. I am not creative because of my depression—I’m creative in spite of it. Big difference.

Because I understand my mental illness so intimately, I was able to deduce that it couldn’t be the culprit of my pain.

The searing pelvic pain began to take on a full-time role in my life. Though I did my damnedest to out-stubborn the pain, my body didn’t have the same resilience, and I was hospitalized (again) a few days later. This new ER doctor had a different approach. With sympathy, he took my hand and asked, “Are you feeling overwhelmed?” To which, exasperated, I cried, “Of course I’m overwhelmed—I’m in severe pain and no one seems to take it seriously!” His response? He sent me home with a script for anxiety meds, without bothering to ask if I have ever been diagnosed with anxiety and/or depression (yes to both), and if I’d had any subsequent treatment (2 years of cognitive behavioral therapy.) So, without really listening to me or asking any questions, he was fine writing off my experience as psychosomatic symptoms of depression. I took the pills home and took them for a few days until I met with my GP. After discussing my history of depression and anxiety, she advised that I didn’t have to take any medication I didn’t want to. I stopped that particular medication, convinced my illness couldn’t possibility be a result of depression. I simply didn’t understand how my mind could have reconciled mental illness for 35 years, only to go berserk once I was finally happy in my own skin. It didn’t pan out, and I argued against the depression theory when I landed in the hospital again the following week.

This time I found myself in the care of a doctor whose wife had suffered traumatically with endometriosis. Finally, someone who was both sympathetic and believed my pain. He admittedly wasn’t an endo expert, but rallied on my behalf to contact one of the hospitals in Fargo, North Dakota—where a gynecologist working in the ER agreed to treat me that night. Once again, the sympathetic hospital staff doped me up, this time for a 3-hour drive, and my ever-patient husband held my hair out of my face as I puked the entire way.

In this new ER, the doctor I’d been assigned to ordered an internal ultrasound. It revealed a mass on my right ovary that couldn’t be explained. It was enough of a red flag that I was in surgery less than 24 hours later—where I would lose my right ovary and fallopian tube to a (finally) confirmed diagnosis of endometriosis. It was now August, and I was anxious to get out of the hospital so that my husband and I could get back to our lives.


The rarest hair color on earth ain't all it's cracked up to be. I can't help but wonder how my mutated ginger genes affected the sciatic nerve pain I experienced for more than 18 months.

https://everythingforredheads.co.uk/redheads-and-pain-does-it-feel-different-to-us/

I detoxed from the tablet morphine I’d been taking for more than a month just 2 days after I returned home from the hospital. Anyone who’s been prescribed narcotics can attest that there’s a stigma attached to each script—an understood implication that conceding to take the pills I’d been prescribed was surely going to result in uncontrollable addiction. After all, how could a 36-year-old woman who’s never been pregnant possibly NOT become a drug addict? I did not in any way want to be associated with having an addiction to prescription drugs, so I cut them cold turkey. The next 3 days were a fever dream—a strange barrage of nightmares, body aches, sweats, and horrific all-over pain. But as I slipped out of it, as the morphine said its final goodbyes, I was faced with a TRUE nightmare—the torturous pelvic pain that had started only during menstruation but had over time moved to a tenured position had not resolved with the surgery.

I ignored it, at first. Pretended it was going to go away, convinced myself it was just a matter of time and the pain would sort itself out. I even tried going back to my job as a graphic designer, but couldn’t seem to make it through the day without puking. I’d had surgery. My ovary was gone, and I had a confirmed diagnosis of endometriosis. So why the hell was I still in pain?

I played the part of recovered endo patient until October—until my body once again made the decision for me that things weren’t okay. I resumed a lifestyle of constant, agonizing pain, where I puked all the time and fainted on the regular. Distraught and terrified, my husband and I returned to the doctor who had performed my surgery. He couldn’t understand why I could possibly still be in pain, and chewed me out for my decision to resume narcotics (hydrocodone, from a script months earlier). His alternative to narcotics was the injectable hormone drug Lupron Depot. He theorized I could still have endometriosis, and if I did, a drug that was originally created to treat prostate cancer in men would be the remedy. He did not suggest another laparoscopy to investigate whether endometriosis remained. He was confident this once-a-month injection was the answer to my pain.

Two months later, and two extraordinarily expensive Lupron Depot shots later, I felt as if I was completely losing my mind from the hormone fluctuations. For what the drug had done was put me into instant menopause, and while it did suppress my periods, it did nothing to help alleviate the savage pelvic pain that had become my living nightmare over the past 6 months. Add to this my extreme guilt over the use of narcotics—though I remained in horrific pain, I heeded my doctor’s advice and traded hydrocodone for ibuprofen. (For the record, ibuprofen DOES NOT IN ANY WAY deliver the same pain relief as prescription narcotics.)

Casey and I had had enough, and insisted something else had to be done. That’s when we started the paperwork to get seen at Mayo Clinic in Rochester, Minnesota. I would be hospitalized at least twice more before ever setting foot in Mayo’s doors.


Once you have a Mayo Clinic patient ID number, it’s easy to get an appointment. Until you have a Mayo Clinic patient ID number, it’s impossible to get a doctor to see you. Time was something I didn’t have, so my local doctor recommended that Casey drive me 8 hours (one way) to the Emergency Room at Mayo. They would have to see me, and during the process, I would be assigned a patient ID number. It was the only “in” I had, so despite the fact that traveling by car at the time was possibly the cruelest thing my husband’s ever done to me, he loaded me up, and I puked my way to Minnesota.

I had no idea what to expect from Mayo, but I most certainly had my hopes up. I was in real, agonizing pain—surely, someone who had the power to do something about it would see that. And fix me. And it would all finally be over.

Although my overall experience at Mayo Clinic was negative, there was a huge benefit to all those visits—the art on display throughout the facility. One work in particular, Andy Warhol’s Giant Panda, resonated with me. Even though I was in the worst shape of my life, I’d ask my husband to stop every time we passed this piece, as just sitting and staring at its beauty gave me strength. Considering the rarity of Giant Panda, I’ll surely never own a copy, but I’ll also surely never forget the resolve it reinforced in me to keep pushing through no matter what. The power of art.

Understanding that I had thus far failed to relate the exact extent of my pain (based on the fact that it was continually ignored), my new plan at Mayo was to employ the description I have agonized over my entire life as a writer, and make the explanations of my illness as utterly alive as possible. I articulated my “saw-like pain,” managed through chattering teeth to assert that it felt like “razor wire wrapped around my hip joint,” or “sharp pulsing pain in my inner right pelvis which floats through my hip and buttocks.” Or, as I asserted to the doctor I saw on my second trip to Mayo’s ER, on my 37th birthday, after spending nearly 5 hours in their cramped waiting room: “It feels like someone wrapped piano wire around my hip joint, and they’re slowly trying to pull/saw it off. Can you please, PLEASE help me?”

I’m self-aware enough to understand that a doctor isn’t going to realize right off the bat that I am an extreme introvert who spends her time plotting and writing novels, who is by nature very quiet, and who is also by nature excessively good at hiding her emotions. I understand that I’m difficult to read, which is why I was attempting to make their jobs easy for them. I was attempting to be as open and honest as possible about who I was and where I was coming from in order to be heard. In order to be believed. In order to make the pain stop. Because I knew it had to—deep down in my gut, in the same undefined place where all this creativity comes from, there was an innate understanding that whatever was causing my pain had a surgical remedy. Extreme pain like that doesn’t manifest out of nowhere in an otherwise healthy woman without a cause. There had to be some actual, definable thing explaining everything. I didn’t assume this because of formal medical training, but because I know myself. I know the kind of person I am. I hate being in the spotlight, and I most certainly hate hospitals and emergency rooms. I didn’t want anything that was happening to me despite implications that maybe I was in it for the drugs and attention. All I wanted was health, and I never expected anything more than that.

But after months of testing, and numerous expensive 16-hour round trips to Rochester, the experts at Mayo couldn’t seem to come up with any one solution that would explain my symptoms.

So what did they tell me?

The first doctor I met with, a seasoned gynecologist with numerous awards and plaques covering his walls, insisted, definitively, that because I had been given the drug Lupron Depot, there was zero chance I had endometriosis or any other gynecological issue. There was no laparoscopy ordered to confirm his assertion, no appointment arranged with anyone else in the department. My pain wasn’t gynecological—end of story.

Next, I met with a doctor of internal medicine who seemed unsure of the source of my pain. However, she was certain of one thing—one of the symptoms I was experiencing was psychological. After a year of extreme pain and puking, my stomach was extraordinarily sensitive to the point where I would belch if anyone or anything touched it. It didn’t matter if it was a human hand, or a cat paw, I’d start burping. My internist sent me to meet with someone in psychology, who gave me a pamphlet with tips to avoid belching (i.e. stop using straws). So, in addition to my extreme pain being disregarded, I was now being advised to ignore a very important symptom of my endometriosis. It would be almost a year before I’d understand the physical reason for all that belching.

A month later, in yet another 16-hour trip plus food and hotel accommodations, my internist informed me: “Some people are just in really bad pain all their lives. You need to accept it.” I felt like I’d hit a wall, and mumbled, “I’m accepting it! I’m accepting it!” in angry reply. Casey took a much more reasonable approach. He asked what she would do if she had to watch a loved one in pain the way he was having to watch me. She conceded that she’d want another doctor to see them, and referred me to rheumatology.

One of two blankets I crocheted while ill, among other craft projects. Mental fog robbed me of a lot, but keeping my hands busy helped.

I had a specialized MRI in preparation for the appointment, which picked up a small irregularity—an inherited condition called Femoroacetabular Impingement or FAI (in which extra bone grows along one or both of the bones that form the hip joint—giving the bones an irregular shape.) The diagnosis made sense—my father has had both hips replaced—but didn’t explain the extreme pain I was in. I was sent back to my internist, who ordered a pain clinic as treatment. Not a traditional pain clinic, in which patients are moved from narcotics to analgesic drugs for long-term pain management, but instead a diagnostic pain clinic, in which a solution was injected into my hip joint via ultrasound-guided needle. If the solution numbed the pain, orthopedic surgery would be in order. But the injection didn’t numb the pain, or provide me with any pain relief whatsoever. When I contacted Mayo asking what to do next, they told me I could have physical therapy “if you want.” I said I was willing to do anything they recommended to end the pain, and agreed to undergo 6 weeks of PT to help strengthen what was assumed to be a bum hip. In an otherwise healthy 37-year-old female. Sure.


I was able to have physical therapy at my local hospital, and left my bed twice a week to force myself through the exercises in hope of some relief. By this time, it was quite clear that Mayo wanted me out of their hair. I had already resorted to researching possible causes for my pain, ignoring a general distaste among doctors for patients researching their symptoms. It was while reading about lime disease that I thought—okay, let’s take a breath here, what do I know for sure? I knew for sure for sure that I had a positive diagnosis of endometriosis, and assumed that the pain in my right hip/thigh/buttocks was sciatic nerve pain (though it had not been diagnosed). I decided to Google those 2 symptoms, and after months of doctors claiming they were clueless as to the cause of my pain, confirmed that it was indeed possible for endometriosis to hide behind the uterus in the Pouch of Douglas and hit the sciatic nerve, causing intense, unrelenting pain, generally on one side of the pelvis. The symptoms seemed an exact match to the horror I’d been told to live with.

Now I just had to find a doctor in real life would agree with me.


My next decision was one of desperation. I went back, for the third time, to the doctor who had initially removed my ovary. I brought up the idea of endometriosis again, and his advice was to go on the pill to suppress my periods. Since menstruation brought with it an excess of pain, I hoped taking oral birth control would alleviate some of that, and agreed to the prescription. Before I left the office and said goodbye to that doctor for the final time, he said he could see me having a baby someday and wished me luck. I wish him luck in treating other women with my specific condition.

In addition to PT, I’d sought a second opinion from an orthopedic surgeon in North Dakota. He advised that while FAI may be a concern for me later in life, I was too young and healthy to be dealing with any pain from it now—and even if by fluke I was, the pain shouldn’t be anything comparable to sciatic pain. By confirming my pain wasn’t joint-related, he confirmed my theory of endometriosis.

This represents 1 dose of medication I took 4 times daily. Who needs a liver, right?

It was at this time I downloaded and filled out a 40-page application for an endometriosis clinic I had found in Atlanta, Georgia—The Center for Endometriosis Care. I’d located a number of clinics specializing in endometriosis in my research, but something about the CEC struck a chord with me. Before I even had the application printed, I was convinced they were going to accept me as a patient. Even so, as I waited through the application process, I kept an open mind and met with yet another doctor.

This one had been touted as “the pelvic pain expert of North Dakota,” and I had high hopes that I had found a surgeon in my insurance network who was capable of properly and completely excising endometriosis in all its forms. Now that I was educated on the ins and outs of endometriosis and the treatment necessary to eradicate the disease, I was equipped with the right questions. The confidence to ask those questions is what helped me to vet the doctor. “Is it possible I have endometriosis in the Pouch of Douglas that’s hitting my sciatic nerve and causing the pain?” I wasn’t joking around—I knew the answer I wanted. After a 5-minute pelvic exam, this expert asserted: nope, no endometriosis for you—but you probably have interstitial cystitis, so we’d better do a test for that. The “test” involves getting your bladder pumped full of water and potassium chloride, and can be extremely painful. Still, I was willing to go through with it. I was willing to go through with anything that would bring me closer to the truth of what was happening inside my body. The test was scheduled for one week later.


Two days before I was to drive several hours to have the interstitial cystitis test performed, I received a call from Dr. Ken Sinervo at the CEC in Atlanta. He had reviewed my application and believed he could help me. Based solely on my records, symptoms, and the 5-page personal essay I'd included with my application—without ever seeing me in person—Dr. Sinervo ascertained that I had endometriosis in my Pouch of Douglas, which was causing sciatic nerve pain in my right hip and buttocks. In addition, he believed I had a separate but similar illness, adenomyosis, which had caused my uterus to expand with trapped menstrual blood. He was willing to operate if I was willing to travel all the way to Georgia. There was no decision to be made—the illness had already made it for me.

Along with his evaluation, Dr. Sinervo informed me that the proper treatment to handle my pain until I was able to see him for surgery—which couldn’t be scheduled until 3 months down the road—was narcotics. After more than 18 months of doctors giving me shit for taking drugs, here was a doctor encouraging me to take them.

Also, Dr. Sinervo provided me with an answer to all that belching. He believed my uterus was affixed to my bowels via endometriosis, which was causing the gastrointestinal issues I’d been experiencing for more than a year. His proposed diagnosis of adenomyosis made sense, as my symptoms lined up with women who experienced contractions from the condition. The contractions would start if I was on my feet for even 5 minutes, and kept me in bed the last 3 months before surgery. That, in addition to the unyielding pelvic pain, made driving cross country out of the question. I needed to get to Atlanta as fast as possible, and the only way to do that was to fly.


After 18 months of begging doctors for help, my sciatic nerve pain was finally gone.

My surgery consult was scheduled for the morning of my surgery, and that’s when I met Dr. Sinervo in person for the first time. I was nervous, and excited, and in pain, but he immediately put me at ease. As we got to talking, he asked about my experience at Mayo. I explained that they’d been unable to diagnose me, and frowning, he replied, “Why didn’t you see my guy there who I personally trained to do this exact procedure?”

I felt like I’d been punched in the gut. If I had simply seen another doctor in gynecology at Mayo Clinic, I wouldn’t have had to waste that extra year of my life in agonizing, unyielding pain. Now, I’ve been chasing fiction for more than 30 years, and I can assure you, true irony exists outside the bounds of make believe. There’s no story I’ve ever come across that’s robbed me of a year of my life, but the collective ignorance and apathy of medical professionals sure as hell did.

This is what determination looks like. I had to delay my flight home by 3 days because I was too sick to move, and refused to delay it again. However, the Atlanta & Minneapolis airport staff made traveling before and after surgery as seamless as possible. Appreciate it.

But, just as I reminded myself as I shivered in that air-conditioned Atlanta office—that was then, and this is now, and I need to fight for today.

In a matter of a few hours, Dr. Sinervo properly excised all the endometriosis from my pelvis, gave me the hysterectomy I so badly needed due to adenomyosis but had been refused, and performed a specialized procedure in which he removed the nerves affected by sciatic pain, ensuring no worry of permanent damage. I don’t remember the recovery room after surgery, but what I do remember is the giant smile on my face as I came to—because for the first time in over 18 months, the pain that had been plaguing my right hip and pelvis was gone. Just like that. In a matter of hours. For all the preparation and expense that went into getting me to Atlanta, my pain was gone, just like that.

But why had it taken me so long to get there?


From the beginning of my illness, once I sensed my pain was connected to my reproductive system, I’d determined I wanted a hysterectomy. My husband and I questioned doctors about it when I was initially sick in 2015. While hospitalized and before my endometriosis was ever confirmed, I was visited by every male doctor in my local hospital and told the same thing—don’t get a hysterectomy. The female reproductive system is complex, and taking out your uterus might not resolve your pain. It’s too dangerous considering what you’ll be losing.

In their eyes, I was losing the potential to be a mother. But from my point of view, I’d already reconciled that motherhood was more than likely not in the cards for me. My body was too complex for these male physicians to understand, so they assumed no one could understand it. What if women took the same approach to men’s bodies? Let’s say there’s a disease that affects the reproductive organs of men that's fixable with surgery. Let’s say that women get to decide how to treat it. Let’s say we decide to plead ignorant, and patronize men by asserting that even though we don’t understand their penises, we’re still entitled to be decision-makers in what happens to them. How do you suppose that would go over? Do you suppose that a man in horrific pain would or should settle for being told he’s experiencing psychosomatic symptoms of depression without ever being asked if he has a history of mental illness?

If a man’s dick was on the line, would it be okay for a woman to imply his pain wasn’t real? I don’t think so either.


SYMPTOMS I EXPERIENCED FROM ENDOMETRIOSIS & ADENOMYOSIS

If this is reminiscent of your time of the month, it might be more than bad cramps.

• Early menstruation (age 12)
• Severe menstrual cramps both as a teenager and adult
• Heavy menstrual periods that can best be described as a “crime scene”
• Extreme fatigue
• High pulse
• Constant, low-grade fever
• Mental fog
• Fainting
• Bloating of abdomen several dress sizes
• Vomiting, burping when touched & other gastrointestinal issues
• Sciatic nerve pain (similar to a tooth ache) in right thigh, hip & buttocks that would extend into my right shoulder when severe
• Uterine contractions
• Migraines
• Mood swings
• Temperature sensitivity
• Infertility
• Depression (Though to be fair, with clinical depression, I’m always going to be faced with dark thoughts. Good thing I've learned how to mitigate them.)

 


THE MYTHS OF ENDOMETRIOSIS FROM SOMEONE WHO FIGURED THEM OUT THE HARD WAY

Pain level: 10/10 (despite being on all the drugs). 3 weeks before my 2nd surgery in Atlanta. I met with my GP that morning, who told me I didn't look sick. To which I replied: "What is a sick person supposed to look like?" I'd still like to know...

Myth: When you have endometriosis, it's obvious to everyone around you that you're sick.

Fact: When you have endometriosis, you more than likely will not "look" the part of a sick patient. It's one of the things that makes getting diagnosed so incredibly difficult.

 

Myth: Endometriosis is the result of excess menstrual blood overflowing into the pelvis.

Fact: Endometriosis implants develop in utero. The tissue starts out as stem cells, and gets the coding wrong. While endometriosis most closely resembles the tissue found inside the uterus, they are histologically different. (Imagine them as fraternal twins versus identical.)

 

Myth: Endometriosis will show up on tests like MRI and ultrasound.

Fact: Surgery is the only way to diagnose endometriosis. If a doctor tells you endometriosis will show up on a scan, find a new doctor.

 

Myth: The more endometriosis you have, the worse your pain.

Fact: The quantity of tissue doesn’t matter nearly as much as the placement. Even a small amount of endometriosis located in the Pouch of Douglas behind the uterus is enough to set off unyielding sciatic nerve pain.

 

Myth: Getting pregnant cures endometriosis.

Fact: In no way is pregnancy a cure for endometriosis. This is cruel advice for a woman who is medically unable to conceive.

 

Myth: The injectable hormone drug Lupron Depot is a cure for endometriosis.

Fact: Lupron Depot has been shown to suppress the spread of endometriosis while it is being administered, but it does not stop the illness long-term and can only be given a few times in a woman’s life. It is dangerous and expensive, and I cannot recommend that any woman ever take it.

 

Myth: Following one of the diets I find on social media will cure my endometriosis.

Fact: The only way to remove endometriosis is through surgical intervention. The typical endo diet allows you to consume less than 25 different types of food, for as long as you live (since the symptoms of endometriosis don’t necessarily end with menopause). Of the hundreds of patients Dr. Sinervo sees each year, he’s only met 2 women who successfully followed the endo diet—he still had to operate on both of them to remove their endometriosis.

 

Myth: Having one surgery to remove endometriosis means it’s gone forever.

Fact: Endometriosis can present in many different colors, and can be missed by an unskilled eye. An expert in removal will know all the sinister places tissue hides, and all the forms it takes. He will not be fooled in the same manner as a doctor who spends his days delivering babies.

 

Myth: Your local gynecologist fully understands endometriosis and adenomyosis.

This little guy was my muse throughout my illness. My general status on any given day was: Orange cattin’ it.

Fact: Unless your local gynecologist happens to be an endometriosis expert, he or she is not equipped to properly excise the disease. Keep in mind, I had dozens of doctors insist I wasn’t as sick as I actually was. Even if they had believed me, none of them had the skill to perform the part of my endo removal that entailed eradicating damaged nerves (only a handful of doctors world-wide are educated on this procedure). I’m also not convinced any of them would have been able to identify adenomyosis in my removed uterus, as it’s extremely rare to diagnose adenomyosis in a woman who’s never given birth.

If you’re a woman experiencing severe pelvic pain, please understand that you are not alone. Please know that there is very possibly a medical reason behind your pain, even if the first, second or third doctor you’ve seen can’t seem to pin it down. The downside of this type of illness is that YOU have to be your biggest cheerleader. I know, it sucks when you’re in pain and you feel like fainting/vomiting every time you stand up to do something as simple as limp to the restroom. It shouldn’t be expected of you to also keep your attitude in check so you don’t lose your mind. But if you’re willing to do that, if you’re willing to fight through all the bullshit of finding the right help, there IS a light at the end of the tunnel.

A year ago, I was left with the notion that I would be in severe pain for the rest of my life, and that I needed to accept it because there was no alternative. Well, whether or not it will please the doctor who told me that with such rigorous confidence, today I’m pain free and well on my way to a full recovery.

But what if I had listened to that doctor who advised me to accept my situation? What if I had listened to all those doctors who were absolutely certain a gynecological issue couldn’t be causing my pain? What if I was the kind of person who went along without asking questions? What if I had let any of them define how I spend the rest of my life?

The best revenge isn't just living well, it's feeling well. I've got a possible 60 years stretched out in front of me. Better not waste them.

Someone possessing an M.D. has only narrowed his or her scope of learning as their education has progressed. When you spend all your time studying one specific thing, you’re not likely to invest much of yourself into things that don’t contribute to your GPA. That’s why doctors generally have one or two areas of expertise, versus being an expert in all areas medical. Yes, they are intelligent and talented and probably pretty good at handling politics, but they don’t know everything—even if their arrogance may lead you to believe otherwise.