March 29, 2014

Ain't No Party Like a Progesterone Party

Today my speckle-headed pup and I paced my man for 2 miles of his 24 mile out-and-back run to Auburn. At 2.2, Gumbo and I panted goodbye and turned back toward the house. Barring a couple of squirrel-induced sprints toward the finish line, Gumbo spent the latter half of our run several steps behind me, periodically trotting up to butt his giant Tricerahops head into my outer thigh in a gesture of gratitude.

This slow run together is my weekend multiple miracle:

1. Gumbo is, at 10 years old, several decades my dog-yeared senior, yet his mileage build up has been remarkable the past 2 weeks.

2. I hardly coughed, just tiny gasps and throat-clearings.

3. I had been so sick the past few days that yesterday I hardly moved from the couch for fear of barfing onto my backpack and table from vertigo and nausea.

I had been dutifully taking my micronized progesterone for 4 days, and it had leveled me. It was like my health had regressed several months, and I was reacting severely to everything. My throat would instantaneously swell shut when I ate, I felt knocked out and feverish, and all I could do was lay on the couch and try to ignore the pain.

Oh, and cry. I cried a LOT yesterday.

"Are you feeling emotional today, Button?" I nodded, tears welling up in my eyes. "I think it's the Progesterone." I nodded again as the tears spilled down my face. "Shut up!" said my brain, but despite my rational protestations, there was some disconnect between my brain and my emotional reactions.

Oh, micronized progesterone. Alas, you were not to be my endocrine system's savior, as the welts spread thickly across my thighs could attest.

I'm unsure of the mechanism that caused my severe reaction to micronized progesterone. While studies have shown that increased progesterone improves sleep and decreases migraines and anxiety, my reaction was polar opposite and sadly paralleled all listed side effects to micronized P:
  1. breast discomfort
  2. anxiety
  3. depressed sexual interest
  4. unusually hunger
  5.  stomach cramping or discomfort
  6. headaches
  7. feelings of moodiness, melancholy or despair
  8.  upset stomach 
  9. water retention
  10. frequent urination
  11. barfing
What I assume I had was Progesterone Toxicity (which, conveniently, has all of the same side effects as micronized P) paired with still incredibly low levels of estrogen.

Laying on the couch late Friday night, my boyfriend crouched next to me and repeated his support for my decision, whether I wanted to continue on the P or stop. I had been hoping, if I had to be treating a symptom (lack of period) rather than my endocrine system, that for 10 days my HIT symptoms would subside and I'd have a glimpse into my future with a functioning body. I couldn't imagine another week of incapacitation; I left my meds alone that night, and woke up today after 12 hours, fully rested and ready to run.

I am, for now, done with desperate quick fixes. A woman in my HIT group has recommended an herb called Vitex to stimulate my pituitary gland, and I may look into it in the future.

Today, I have the simple pleasure of a man, a pup, and 4 slow miles in the Seattle spring sun.

Progesterone, Progestogen, Progestin, Oh My

There is a stark power differential in the medical profession, one which I am acutely aware of as a social worker. Patients, and particularly patients who often find themselves under-represented in and stigmatized by the medical community, can find it difficult to advocate for themselves within a power dynamic that casts them as the passive receptacle of medical wisdom. As someone who strives to help those populations advocate for themselves and equalize power within the doctor's office, it's enlightening to watch that differential shift throughout a conversation, to see my own power deflate from the grip of stereotypes.
"Hrrrrggggrrrllllppfft," my stomach stated emphatically across the near-empty waiting room.
"Shit," said my brain, as I scanned for knowing looks and near-by restrooms. A child seated across from me glanced up from her book before nestling into her mother's side, and I became suddenly consumed with identifying all of the fish in the large aquarium at my side.

"It's a fish of some sort," I thought. "The yellow kind." I pressed my hand against the cool glass, envisioning myself in some cold, disembodied space of mottled light and crackling water.

My histamine reactions have recently ramped up, and my face is a red patchwork of hives. Inside, I imagine welts rolling across the surface of my intestines as my stomach clenches and re-clenches in pain. "There's nowhere to retreat, dear stomach. We're in this together." The nurse calls my name and I arrange my face into a semblance of a smile and walk with her down the hall to the scale.

Momentarily, I consider kicking off my shoes -- marbled, forest green flats that I had lucked upon at Goodwill's MLK Day Sale -- then chastise myself and step onto the scale. The number soars up in seconds as my heart lurches down into my knotted stomach. "Sweet merciful shit," I try not to say out loud, sensitive to the presence of the much-heavier nurse just behind me. I have been struggling to accept and love my body as it is, but the number in front of me was one that I had only seen once, ever, in my life, a time of heavy drinking and emotionally abusive relationships, a time when running was no more than a memory of a part-time, long-lost friend.


As a writer, I couldn't shake the symbolism; as a feminist, I was frustrated at the failings of my philosophy, my railing against unfair portrayals of feminine perfection while striving to attain them myself. "Stop beating yourself up," I whispered, my mantra for the week, repeated in notes tucked into pockets and notebooks to remind me.

When my doctor walked in, I was ready for solutions. "I want my hormone levels tested." I assumed my most Graduate School, Educated Woman demeanor. I explained my research, my histamine intolerance, my food reactions, not getting a period in over 4 years. He nodded, he questioned, and he seemed genuinely curious, up until I mentioned my Depo.

"Generally we don't test for hormone levels right away. Given your age, your weight, I think we should start with a course of progesterone. That should help shed your endometrial lining and start your period. When progestins enter your body..."

"Whoa, whoa, sorry, wait, progestin or progesterone?"

"Well, they're the same thing."

"Um, well, except they have a different receptor, right? I mean, that's what Depo is, a progestin. I can't... I don't want that again, that's what put me in this mess in the first place." I felt my Educated Woman demeanor begin to falter. (C'mon, Cass, you know this stuff.) "I mean, it's not my period that concerns me, it's my pituitary. It's not producing it's own progesterone. Will taking progesterone give it a little kick in the nads and get it going?"

"Like I said, progestins-"


"I'm not sure what you mean..." His usually kind face tightened, lips pressed together. "They are the same thing. Progesterone will help stimulate the shedding of your endometrial lining and you should have a period within 10 days. If you don't, we can look into hormonal testing. Or maybe you're really active?" I could sense my hista-meanies starting to flare up. (Down, Girls, wait this out.) I stammered out my exercise routine and qualified it with a comparison to where I had been before beginning birth control, my face flushing with histamine and embarrassment.

"You can lose your period due to intense exercise and weight loss." He turned and started typing into his computer.

"Yeah, that's, that's not it." I looked down at my legs and shifted toward the front of the examination table, then tugged at my dress. "When I got my last shot, you know, in August, there were times where I couldn't even eat between the hours of 9 to 5. My reactions were so bad!" I stared at him, hoping he would turn and see the eager pleading in my face.

"That's not good." He continued to type as I picked at a fingernail.

"I'm sorry, I just... I was just weighed, and I am the heaviest I have ever been in my life, and I feel like there's nothing I can do about it and it has completely thrown me for a loop." It is a last desperate strategy, this self-blame, and suddenly Feminist, College Educated Cassie deflated, and there I was, uncovered, insecure, overweight--the patient, the receptacle for clinical knowledge, and I burned with shame and large thighs and Goodwill shoes and government healthcare (I'm losing my private insurance at the end of the month) and internet research and a mere Master's degree.

"Okay, let's try the progesterone. That sounds good. Sure. Let's do it." There was a small tear on the heel of my flats, and I lifted my foot to try and press it back in to place.

He typed out the prescription and left the room. "Hashtag: Awkward," I muttered, and showed myself out.

In the lobby, a group of teenage women were waiting for TB tests. "Oh my God let's go run in the rain!" one shouted as the others punched her in the arm and laughed. I struggled with the heavy wooden door and stepped outside, gripping the side of my dress against the wind. "HrgggrrRRrr!" shouted my stomach to a woman scurrying by, a tiny white dog tucked into the chest of her jean jacket, its curls matted with rain, and I wished for some small, warm being, pressed tightly against my heart.

March 23, 2014

My Journey on Depo Provera - HIT, the Aftermath

Hot gooey chocolate pain

It was my birthday, and along with celebrating another year of existence, I was celebrating a milestone of rebirth: My Deliverance from My Depo Due Date.

It has now been 200 days since my last shot of Depo Provera, and the medication should, according to research, be undetectable in my body. But just because a medication is no longer detectable, does not mean that my body has returned to its previous state. Like some cellular typhoon, Depo Provera has devastated me, slashing receptors and cellular walls, wiping away whole neurotransmitter systems and destroying my endocrine infrastructure.

The typhoon has abated, and I am left sifting through wreckage.

One clear example of the aftermath is the way that I still respond to food. It is, thankfully, better than just 6 months ago. I can eat, and regularly, with little more than hives springing across my shoulders and face, and a tightness in my chest that settles down after a couple hours of rest.

But give me some chocolate and my endocrine system is sent into upheeeeeeeeaval.

Sometimes, for the sake of chocolate, I take my risks, especially when that chocolate comes from Hot Cakes. Oh... lord. It is about half an hour of pure Heaven before the nausea hit me. I made it out of the restaurant and around the block before getting PLOWED with histamine.

"HUUUURP! HUUURRRP!" I gasped, trying to stay upright as my chest caved in with each breath. My partner grabbed my hand and led me to the car. We were on our way to do laundry after a full day of birthday snacking, and I spent the car ride with my eyes squeezed shut, trying not to throw up a day's worth of pastry all over my only remaining clean clothes. Every bump in the road, every deceleration of the car, was like being tossed around on a slingshot after downing a bottle of wine in the carnival parking lot.

Less fun, more crying.
And all of it from my baby shots.

You see, Depo Provera is synthetic progesterone, but with a slightly altered receptor in order to make it patentable. When you receive your shot your body is flooded with progestin, tricking the endocrine system into shutting down natural progesterone production and increasing estrogen production in order to maintain hormonal balance. Unfortunately, because of its altered structure, progestins can not bind to other receptors in the body that rely on progesterone in order to properly function.


Medroxyprogesterone Acetat

And what bodily functions, besides ovulation, rely on progesterone?

The nervous system, including synaptic functioning, memory, and seratonin.
Sleep regulation
Pancreatic function and insulin release.
Anti-inflammatory and immune response.
Mucus regulation.
Bronchial widening.
Gallbladder activity (bile production)
Regulating estrogen (this is a whole world of issues, including histamine regulation)

With all of this increased, unregulated estrogen, your body is put into what's called a state of Estrogen Dominance. And one of the more interesting things that estrogen does is make you randy.

Estrogen acts as a major histamine-releaser, which in turn increases lordosis behavior; or Assuming the Position for Gettin' It On. (Read more here!) This is why ladies often find themselves especially randy shortly before their period. And this is why, as someone who probably had low-grade, undiagnosed Histamine Intolerance (HIT) my whole life, I had a bit of a one-track mind. Not my fault, see? (The Low Histamine Chef provided a great explanation of the estrogen-histamine relationship here.)

Git it.

What this also means is that, with histamine levels already higher-than-normal, my body incapable of breaking down excess histamine at a normal rate, and progestins disrupting my liver's ability to break down carbohydrates and lipids (Liew et al, 1985), any excess histamine added to my body (see: food) results in a histamine overload.

"These results may support previous findings of histamine release by estrogens in uterine tissue but may also reflect an elevated histamine formation. The allergic woman excreted constantly increased amounts of histamine and its metabolites, especially when her allergic symptoms became aggravated pre-menstrually."

Since the 1980's, scientists have warned that women should not remain on Depo Provera for longer than 2 years. Unfortunately, that information has rarely extended beyond the pages of scientific publications, barring a small black box warning added to the packaging in 2005.

Never, have I ever, seen my birth control shot's packaging. 

And for that, I have been sick for 4 years. My ability to eat has been drastically altered, I can no longer run without swelling internally, and my unmedicated sleep cycle has been reduced to about 4-5 restless, itchy hours per night. 

It's like getting hives on every surface of your being, on the cells themselves, and your very blood itches and you would carve out your flesh to make it stop. It has been like this for 4 years, and the itching is the least of my concerns (See: cough, aka simulated drowning).

Pfizer is well aware of the complications of its drug, and the dozens of side-effects that women have endured. Yet this shot continues to be given to women. It continues to be spread around the world. And it continues to be aimed at women of color in poor, resource-scarce settings.

And with my every gasping breath, I will continue to fight against it.