Tuesday, I began a rather lengthy dialogue about a relatively new and painful development in my life: endometriosis. If you haven’t read the post, I’d suggest starting here before continuing to read this post. (Which is also sort of lengthy, but it’s information every man and woman should read and share with their daughters, wives, girlfriends, sisters, and friends — because knowledge is power.)
Note: This post doesn’t quite pick up exactly where I left off; I did some backtracking that tells what I feel is an important part of my story.
My encounters with doctors throughout the diagnosis process were complicated by that first doctor — the woman who should have been my advocate. Despite enduring excruciating pain on a regular basis, I didn’t want to go to doctors anymore; not a single one. For almost two years after that first visit about my pain, I refused to be seen by another physician. I preferred to suffer quietly each month, rather than risk being told by another doctor that my ailment was due to being “excessively overweight.”
The night before Zack and I went to meet my next doctor, I stared at the ceiling for hours, my eyes full of the deep blackness that was somehow both our bedroom and the sinking pit of my stomach. I just knew that this would be another dead end — another bout of disbelief, expensive tests, and dismissive shrugs. When we pulled up to the clinic, I couldn’t move. My body went rigid in the front seat of the Jeep, my palms trembled, and my tongue grew heavy and sour in my mouth.
I couldn’t handle another doctor telling me I was fat.
Zack had to pry me from the seat, alternating between frustrated exclamations and tender reassurances. You’re not fat, Nay, and if the doctors say that’s why you’re in pain — fuck ’em. We’ll go somewhere else until someone figures out what’s wrong with you.
Our new doctor had a nervous, twitchy sort of personality: a bit like a ferret in a lab coat, if you will. But he was kind — so very kindhearted — and dismissed my greatest fears right off the bat. You look exceptionally healthy, honestly, and even if you were overweight, that would have nothing to do with the pain you’re experiencing. I trembled with relief.
Since the female body is remarkably complicated, he recommended ruling out a number of other potential problems before looking at endometriosis. Over several months, I failed many ovulation tests, passed a test for polycystic-ovarian syndrome, and otherwise checked out as “normal”. Along the way, he frequently reminded me that if I ever became frustrated, or wanted a second opinion — he would gladly refer me to a specialist in Wichita. He was so incredibly sensitive to my pain (both physical and psychological), I could (mostly) overlook the fact that every visit to his office meant sitting in a waiting room chock-full of women whose bellies ballooned out, well beyond their head-to-feet line of sight. I never completely ignored the fact, though, that my stomach was much, much flatter than every other woman’s in the room. Under normal circumstances, I might have been glad about that; but as we studied my body up close, I began to feel increasingly insecure about the vacancy of my clearly flawed womb.
Then, on my fourth visit, I told the doctor the pain was no longer worth it — kids were something we’d often talked about raising, but if I had to continue with this hellish nightmare every month, Zack could count me out. I wanted my lady organs removed. Like, yesterday. This assertion changed everything: this is when the conversation about endometriosis really began.
Since the Olympic Trials of My Internal Organs had given up very little information and the look in my eyes had begun to resemble that of a crazed individual, he determined there was a “good chance” I had endometriosis. He described the disease as such:
“You know when you scrape your arm on cement, or skin your knee on a road, and a little scab forms? And you pick at it, all the time, never letting it heal? That’s what endometriosis does to your body. Every month, your body produces estrogen. And if you have blood/cysts/lesions formed outside the uterus, or on your fallopian tubes, or attached to your ovaries, or elsewhere — the estrogen aggravates these growths. It picks the scabs. When the estrogen levels decrease, your body heals a bit. But then the levels increase, and the scabs are ripped off again. The cycle never ends.”
What a relief.
You know when someone’s telling a story about something unbelievable, and things just become even more unbelievable, and they say, Here’s the kicker! — That’s what endometriosis is like. After we left the doctor that day, we were given a couple of choices to think about: I could undergo surgery, or I could get pregnant (a temporary fix for endo patients). At first, I was relieved: we already had some (potential) answers, and we were going to get more. But as the week progressed and I conducted hours of research online, I grew furious.
Here’s the kicker:
- Endometriosis can only be truly diagnosed via laparoscopic surgery. It cannot be found via MRI, x-ray, ultrasound, blood work, etc. Doctors can suspect, but not firmly diagnose without surgery. During this exploratory surgery, doctors search for endometriosis, and, if located, laser or cut out the abnormalities that they can reach and safely remove.
- Often, endometriosis has to be treated via hormone therapy in addition to the surgery. To put it plainly, a young woman must take pills that will force her body to enter early menopause for 3-6 months at a time, in order to “dry out” the hormones and reduce or eradicate the deviant internal bleeding. As though surgery weren’t enough, these women must also endure medically-induced hot flashes, depression, decreased libido, mood swings, etc.
- If left untreated, endometriosis can make a woman’s life hell. (For reference: my previous post.) In some women, the disease means frequent constipation/diarrhea, frequent pain when exercising or existing (not exclusive to “that time of the month”), and painful sex — and that’s just not okay, people.
- It doesn’t go away forever after surgery. The nightmare spreads its wings and stages a comeback; sometimes a few years after surgery, often within months.
- There is no known cause for the disease, and there is no cure. I repeat: there is no cure. (Note: Hysterectomy is touted as the only “cure,” but I’ve discovered in rare cases, some women even continue to experience symptoms after their hysterectomies.)
I discovered that last little nugget on an online forum for women with endometriosis, and I felt like I’d been sucker-punched. You can probably imagine the sort of phrases that popped out of my mouth over and over again as I read articles, comments, and posts by women who had undergone surgery, only to battle the She-Satan of periods again a year later, or maybe 18 months.
I hadn’t even been truly “diagnosed” yet, and I already felt like I’d received a life sentence.
One week ago, I had surgery to diagnose and treat my endometriosis.
We opted to have the procedure after visiting a specialist in Wichita who was just the right combination of squirrelly and professional. He soothed my fears with a few well-timed jokes, and even promised to perform a presacral neurectomy, if I wanted. When I discovered that the neurectomy procedure essentially translated to “a rare but minimally-invasive technique in which the doctor removes nerves that transmit menstrual cramping pain to the brain,” the weight of hundreds of agonizing days rolled forth from my shoulders; light gleamed at the end of a shortening tunnel; an angel choir issued exaltations. All of the cliches occurred.
My follow-up isn’t for another week, so I’m still a bit foggy on some of the details; but the doctor sent photos with brief notes from my surgery that made a few things clear:
- One of my ovaries had fused itself to my pelvic wall, due to scar tissue formed by endometriosis.
- One of my fallopian tubes is essentially completely scarred over/closed for business.
- Overall, the endometriosis was worse than they thought.
And here’s the kicker — there are women out there, living with this disease, who have it far, far worse than I.
Experts estimate that at least “176 million women across the world have endometriosis . . . one in ten women during the reproductive years” (Endometriosis.org). Still, somehow, so very few people have any knowledge that such a wicked disease exists — and often, when they discover its existence, dismiss most pain as figments of imagination. For most women, a diagnosis takes 6-10 years to obtain after the pain really digs in, because they are led to believe it’s “normal” by friends, family, media, and medical professionals; and once that pain truly is recognized, there are a gamut of other tests a woman must endure first because surgery is such an expensive and invasive means of diagnosis. Imagine that, for a moment, if you will: It’s 2016, our doctors are medical wizards, and this is the best we can do for women who display endometriosis symptoms right now — diagnostic surgery.
In writing this post, and the one that precedes it, I hope to battle those inaccurate and damaging skeptical beliefs about period pain and endometriosis, if only marginally. I hope that if you’ve stuck with me to the end, you have gleaned a bit of insight that might one day prove useful — though I pray that few others face the disease, one that I wouldn’t wish upon my worst enemy.
For now, I reside in a waiting room, of sorts; one of the mind as well as the body. Until my follow-up, I won’t know the stage or depth of damage that has been boiling within me for the past four years. I think I’ll always fear its return, and right now I’m especially terrified to find out if the surgery even worked. But that is what life with endometriosis becomes:
A waiting game.