One Year Since My Diagnosis

One year ago today, one word changed much of my life. That word destroyed me. It humiliated me. It turned my perspective upside down. It changed my already complicated relationship with food. It upended my sense of self. It empowered me.

“You have Endometriosis,” my OB/Gyn said after a painful pelvic exam and consultation. I’d waddled into her office in pain, holding back tears, positioning myself precariously on the edge of the exam table so as not to put any pressure on my painful nether regions.

“It feels like when I was pregnant with my second child,” I explained, “and he was stubbornly positioned head down from 19-weeks on.” Just as during those brutal weeks of pregnancy, I was swollen, my pelvis felt heavy, my intestines felt squished, I had the distinct feeling that a bowling ball was trying to exit via my perineum. But, unlike when I was pregnant, I didn’t have a baby-in-waiting to blame for my round-the-clock woes. So I’d visited my doctor hoping for relief and maybe even answers.

“You have almost every symptom,” the doctor explained. “You’re not a candidate for birth control,” I was a unicorn who managed to get every bad and unusual side-effect from hormone-altering medications and I was terribly cyst-prone when on such medicine. “…or Lupron,” she said. Lupron was a not-entirely-effective and sometimes worsening medication that induced temporary menopause, “so you have two options.” I listened intently, not breathing. “You can get pregnant and possibly get some temporary relief,” though I discovered later that my increasingly rough pregnancies were likely due to my Endometriosis flaring during pregnancy… because I’m a freakin’ unicorn. “Or…” I inhaled waiting for her next suggestion, “you can get a radical hysterectomy.”

Everything stopped. My breath. My heart. The world.

2.5-years postpartum from my third child, with a 6- and 4-year-old at home too, I wasn’t exactly looking to add to my youthful herd. But I wasn’t entirely set on nullifying that option either. And I certainly wasn’t looking to have an entire complex operating system within my body extracted either.

I cried. (I do not cry in public.)

I was in no way prepared for this news. My husband wasn’t going to be prepared for this news. I had made the appointment thinking maybe she’d tell me I had another ovarian cyst or some inflammation. I was not thinking organ removal was a possibility. Endometriosis was never on my radar.

After the months in college when I was painfully sick and ran the gamut of medical tests to no avail, after the invasive fertility tests and various doctors I’d seen in a quest to conceive our first child, after conceiving and birthing three children, after undergoing two c-sections, and after having gallbladder removal, NO ONE had even floated that diagnosis. Not in all those years. Not once.

I dried my eyes and waddled back to my car with nothing but a co-pay, an awful diagnosis, and two non-option “treatment” options to show for my doctor visit. I sat in the driver’s seat staring at the steering wheel. My mind was simultaneously spinning and standing still. I wanted to scream. I wanted to cry. I wanted someone to fix this. I wanted to understand what the hell this diagnosis even was!

All I’d ever “known” about Endometriosis prior to that day was that it involved painful PMS and bad periods. And I’d say that horrendously under-informed knowledge base is what most everyone in the general public shared.

Quickly, I discovered how much more Endometriosis entailed. Then I uncovered something else: I knew SO many women who directly suffered from the ailment but they never talked about it.

Like infertility and countless other women’s health issues, Endometriosis was rife with shame. It was considered a “private matter” something to keep secret. All of those “frigid women” we heard and read about in literature and movies, many could have been silently suffering from Endometriosis. And here society blamed and shamed them for a medical condition they never asked to have.

The more I researched, the angrier I got. By a month in, I was incensed. I was angry at the medical community for not researching treatments and for continuing to represent ineffective if not worsening and torturous methods as “solutions.” I was frustrated with perpetually transmitted misinformation. I was mad a fellow suffers’ silence. I was infuriated at society for blaming and shaming and degrading sufferers. I was livid at God/the universe, my body for giving me this curse. After all of my struggles, after all of my efforts, after all I’d conquered, why this? Why me?

But, then, reason descended. Why not this? Why not me? If everything else in my life — good, bad, beautiful, traumatic — had been fortuitous in its ability to lead me in growth and direction, how could this be any different?

So I accepted my diagnosis and decided to give it voice, to be the voice I had so desperately wanted to hear when I was initially diagnosed. If I could stand as an example of unashamed living, others might join me. Maybe. And together — or all on my own — we could chip away at the shame and misinformation and secrecy and medical ignorance that had plagued the Endometriosis community for so long. Maybe. Either way, it was worth a shot.

So, I researched treatments and realized that everything that had been presented to me as my “only options”, were not. Not only were they not likely to work for me, but they were incredibly likely to worsen my condition if not heap other medical woes on top of my already bountiful plate.

I came across two treatments that had some sturdy numbers behind them without all of the nasty side effects. 1) Excision by a vetted physician, 2) dietary adjustments.

I booked an appointment with a semi-local excision specialist to get a pre-op consult. My husband balked, afraid of the prospect of my going under the knife for a fourth time in our relationship. With three young children who relied on me as their primary caretaker and my body’s issues with sedation, he was understandably concerned. So, I cancelled the appointment and opted for diet.

Interestingly, though perhaps less than coincidentally, I had adopted the recommended gluten-free plant-based diet a year prior. However, additional adjustments needed to be made. Take specific supplements. Lower stress. Be active. Reduce, if not eliminate alcohol. Limit soy. Nix chocolate. Avoid processed sugar. Eat as much of a whole foods plant-based diet as possible. Eat like a bunny.

Basically, the goal was to reduce inflammation in the already inflamed body. So, over time, I adjusted my lifestyle and diet. I popped dietary supplements. I ensured I stuck to my daily yoga and meditation routine. I was physically active every day. And — much to my already-deprived chagrin — I relinquished one cherished indulgence after the next.

And now, I’m here. Where is that?

I still have pain. I’m still figuring it all out. BUT I’m better. I am so much better. My cycles are regular for the first time in my life. My pain is lessened. I can walk during ovulation, unlike before when I was bedridden or waddling for 1-3 days.

My flow is still far heavier than any average human, but my switch to using a menstrual cup has been a life changer. Not only am I aware of what is going on with my body and not soaking through three tampons and overnight pads within three waking hours, but I can live my life. No more bleeding through pants or waking up covered in blood. I feel human again, even in my superhuman hyper-menstrual state.

My supplements make a massive difference in my health and pain levels. When I have accidentally skipped one, I suffer for an entire menstrual cycle. I have learned their value.

My daily yoga and meditation is helpful in countless ways. Not only are my inner calm and my inner joy more easily accessible and now my natural inclinations, but I’m more in tune with my body. My stress level — though still in flux as a parent and a human — is lower than before. It takes far more to rile me than it used to. I still have my off days or temperamental times, but they’re less severe than before.

My diet is strict but notably helpful. So, as much as I miss my old dietary freedoms, I appreciate the reduced pain. I eat no gluten, no animal products or byproducts, no chocolate, limited soy, limited alcohol, and a mostly raw plant-based whole foods diet until 5PM each day, at which point I eat cooked gluten-free vegan food. Some days I’ll eat cooked food for lunch, but that is all. Other than coffee and hummus, my breakfast, lunch, and snacks are uncooked whole produce. I physically and energetically feel better. My inflammation is minute. I am comfortable most days.

In terms of how the diagnosis affected my marriage, we’ve been through it over the last year. At least the pain and related anxiety I felt were given an explanation, but they were also not provided any hope of a cure. As much as the struggles caused a rift between us and lead to many nights of tears and anger and resentment and frustration and loneliness while still together, my husband and I found a way to work together. To appreciate and celebrate when things DO work.

We communicate about what works and what doesn’t, what is working — in terms of my actual physical body — and what isn’t, what hurts and what doesn’t, where I am in my cycle. That communication is key. It keeps us connected, him aware, and helps me not feel so alone in my struggle. My journey.

And, so, a year later I am a year wiser. I am a year stronger. I am a year healthier. I am a year more determined not to let Endometriosis rule me.

After all, Endometriosis isn’t a death sentence; it’s a life sentence. And this is my life.

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