Dropping the E-Bomb

Coming out of the endometriosis closet at 32

In August of 2015, I checked myself into California Pacific Medical Center, just two blocks away from my apartment in San Francisco, to undergo an exploratory laparoscopy.

Laparoscopic surgery is considered minor — in the scheme of things — because it involves making smaller incisions and inserting an instrument called a laparoscope, rather than making a large incision that requires a longer and more painful recovery. My surgery took only 3 hours, was performed using a fancy robot called the da Vinci, and involved only four small incisions: one in my belly button, one a couple inches to the left of my belly button, and two in my lower abdomen just over my left and right ovaries.

I had never had surgery before (unless you count the extraction of wisdom teeth, which I don’t), and I was nervous about going under general anesthesia. I’m not the kind of person who finds ease in situations that involve a lack of control over my body. I hate flying, prefer to be in the driver’s seat when ascending a mountain pass, and want my own paddle for that canoe, thank-you-very-much. General anesthesia is not my jam.

So deciding to have this surgery “just to see what’s going on in there” should have been difficult, but it wasn’t. For the three years prior to my surgery, I had been experiencing ovarian cysts that were rupturing and sending me to the Emergency Room on a fairly regular basis. My gynecologist in Chicago discovered my first cyst after I came into her office to have an IUD placed, and asked her if she would “Please take a look at my right ovary while you’ve got the ultrasound out, because I’m probably being a paranoid hypochondriac but I’ve been feeling this thud of pain in my lower right abdomen when I walk down a hill or step down hard with my right foot, and I looked it up on Web MD and read it could be an ovarian cyst.” Yeah, I’m that patient…Actually, I’m the girl who is really afraid of being that patient, and this was the only time I ever admitted one of my sure-to-be-hypochondriacal-fears to a doctor, and then the craziest thing happened. I was right.

“I’m sure it’s just a functional cyst and will probably resolve on its own. Don’t worry.” Remember the infamous 16 words that George W. Bush uttered as a justification for a preemptive and baseless invasion of Iraq in 2003? Remember what total bullshit that was? Well, these were the 16 words in my narrative, uttered by my clueless OB-GYN.

And she uttered them over and over and over: when I came back a month later with three cysts, when I came back again three months later and they had grown, when I came back with what appeared to be new cysts six months later. In the next three years, I ended up in the Emergency Room on three separate occasions with ruptures. The annoying thing about a ruptured ovarian cyst is that it can cause torsion, in which your fallopian tube bends or twists and cuts off the blood supply to your ovary. I am lucky to have never experienced torsion. Many women lose their ovaries this way. What I remember most about these instances is the long stays in the ER waiting rooms, countless abdominal and pelvic ultrasounds, pelvic exams with interns observing, and the ever-changing rotation of painkillers. The last time I had a rupture, a colleague had to drive me to the hospital in the middle of a one-on-one meeting we were having over lunch at a pizza restaurant. After four hours of crying myself tear soup in my hospital bed, the ER doctors gave me liquid morphine. For the record, I never asked for it, but I didn’t put up a fight either.

So it turns out that when I moved to San Francisco and found a new gynecologist who suggested an exploratory laparoscopy within two minutes of reviewing my chart and taking my history, it wasn’t a difficult decision.

It also turns out that I was right to be nervous about anesthesia. Suffice it to say I did not have a great reaction to the stuff. I woke up crying and disoriented, and did quite a bit of vomiting at inopportune moments in the 12 hours that followed my surgery. Did you know that you can pee and projectile vomit at the same time? Or that when you sit up for the first time after having surgery on your ovaries, blood gushes out from between your legs and onto the floor like a goddamn waterfall? Or that you continue to bleed very-clearly-not-menstrual-blood-that-will-totally-ruin-your-underwear-and-sheets for weeks afterward?

Neither. Did. I.

All I can say is my then fiancé/now-husband is a really patient and unfazed caregiver, and it might be impossible to gross him out with your body, so if ever you have a bad reaction to general anesthesia, you should probably ask me for his number. Also, nurses should make a lot more money.

I tell you all of this not because I want to gross you out, or because I want you to feel bad for me, but because nobody told me what to expect. Because nobody talks about Endometriosis, what it is, or how it’s diagnosed. Because, on average, Endometriosis diagnoses are made 10 years after the onset of symptoms (in my case, it was 14). Because the symptoms associated with Endometriosis are the same symptoms doctors used to use to diagnose Hysteria and throw women into psychiatric wards. Because the U.S. military spends $84 million on Viagra and other Erectile Dysfunction drugs every year, but the National Institute of Health allocated only $11 million in 2017 and 2018 for Endometriosis research.

Because, somehow, in 2019, diseases that affect women’s reproductive systems are still not-to-be-discussed/researched/acknowledged/taken seriously. I know we’d all like to pretend we’re shocked, but Brett Kavanaugh is a Justice on the United States Supreme Court, so let’s just save any energy we might muster to feign disbelief.

In 2015, the exploratory laparoscopy revealed that I had Stage 4 Endometriosis. My doctor removed three cysts and adhesions from most of the organs south of my lungs, including one that had tied and stuck my left ovary to my large intestine. Suddenly years of debilitating cramps (which I thought were normal), shooting pain in my legs (which I thought was normal), chronic fatigue, nausea, and painful sex (which I thought was my fault) added up.

Honestly, it was kind of a relief. I didn’t “just have a low pain tolerance.” I wasn’t “just weaker than everyone else.” I wasn’t “just an anxious hypochondriac.” I had symptoms of a disease with real consequences that I had largely ignored for 14 years, with lots of encouragement from society and well — everyone — until it was finally impossible to go on ignoring it.

Less of a relief was the news from my doctor that the severity of my disease made it unlikely that I would be able to have children. Her exact words were, “If you want kids, you should consider trying to get pregnant in this next year. That’s your best shot. After that, the chances that you’re able to get pregnant will diminish considerably. And if you do get pregnant, you should know that you’re very likely to have complications.”

That’s some heavy shit to hear at 28 years old, even when you’ve been terrified of childbirth your entire life, and always kind of figured you’d adopt. It’s also unbalancing to hear that at a time when you think you’re a good five or six years from the whole having kids thing. It kind of felt like getting knocked off your feet by a soccer ball that came flying hard and straight at your stomach from across a muddy field when you weren’t paying attention to the game (that exact thing happened to me in the fifth grade). I literally burst into tears in her office, which to be fair, isn’t exactly out of character for me. I’m a crier, but I recover quickly.

The thing about getting heavy news like that, coupled with the discovery that you’ve had a disease for 14 years that everyone in your life constantly reassured you was nothing, leading you to internalize an intense feeling of wimpiness, is that you simultaneously want to scream “I’m not a wimp! It’s real! It’s always been real, and it sucks!” and “Don’t ask me what’s wrong! I’m fine. And strong! Turns out I’ve always been fine and strong!”

And so actually, what you do, is say nothing. Which is convenient, because it turns out that there’s a whole closet for women with Endometriosis where we can go to suffer silently and invisibly. Except there’s a party in this closet. And we can cure ourselves the way that women cure themselves when they find out their boyfriends have been cheating on them with an acquaintance who they can freeze out and never speak to again under any circumstances, and of course the satisfaction of just giving her a wordless icy gaze at every social function will solve everything. If we swallow our anger and just pretend she doesn’t exist, maybe we can eventually convince ourselves that it never happened and it doesn’t matter. The problem is, of course, that just perpetuates the cycle. And goddamn it, it’s not all her fault. What about that asshole cheating boyfriend? …You still with me?

We need to talk about it. We can’t freeze it out. Because we have to stop the cycle of telling an estimated 10% of girls and women that their physical suffering “is nothing” for a decade following the beginning of menstruation. Because we are doing real psychological damage to girls and affecting their self esteem during their formative years. Because we are telling them that pleasantness matters more than their health, that their primary responsibility is to be quiet and nice, and worst of all, that their trust in others should be greater than their trust in themselves. Because it’s time we take women’s pain seriously. Because it’s time we take women seriously.

So here I am, at 32 [and a half, for those of you watching my biological clock], coming out of the Endometriosis closet. Dropping the E-bomb. I’m sorry if it makes you feel awkward. Trust me when I say I feel awkward about it too, especially since Lena Dunham has become our de facto spokesperson (wouldn’t be my first choice).

There are many more of us out there clinging to our invisibility cloaks, still freezing out that girl at the party. Invite us to talk about it. Ask us questions. Encourage us to trust our bodies. Acknowledge the gender pain gap. Ditch the stigma. And for God’s sake (or, you know, ours), can we all agree to put a little more money into the research, and crank up those nurses’ salaries?

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FAQ

Q: What is Endometriosis?

A: According to the Mayo Clinic, “Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

With Endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.”

Q: What are the symptoms?

A: Severely painful periods. Lower back pain. Abdominal pain. Chronic fatigue. Neuropathy and pain in the legs. Pain during sex. Pain after sex. Excessive bleeding. Pain with bowel movements or urination. Nausea during menstruation. Infertility and fertility problems.

Q: What causes Endometriosis?

A: Nobody appears to have any clue. Probably because there is so little money in the research. Mayo Clinic offers the following “possible explanations.”

• Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These displaced endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
• Transformation of peritoneal cells. In what’s known as the “induction theory,” experts propose that hormones or immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial cells.
• Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial cell implants during puberty.
• Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.
• Endometrial cells transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.
• Immune system disorder. It’s possible that a problem with the immune system may make the body unable to recognize and destroy endometrial tissue that’s growing outside the uterus.

Q: How is Endometriosis treated?

A: Everything from hormone therapy, birth control, and over-the-counter-painkillers to laparoscopies and in extreme cases, hysterectomies with the removal of ovaries.

Q: How is Endometriosis diagnosed?

A: The only way to diagnose Endometriosis is through surgery, usually a laparoscopy.