Big Trouble in Mini Pill

How progesterone intolerance got me good (in a bad way). 

I've decided to share my personal experience with synthetic progesterone – aka progestins, aka the "mini pill" – in the hopes it might help even one person lurch out of their own hormonal hell. For just over five years I had taken the mini pill, first under the Jencycla brand, and then Movisse. The brand switch occurred when my pharmacy happened to be out of stock of the first, and was substituted with the second. "They're identical", I was reassured, "you shouldn't notice a difference".

I started taking the mini pill while in a relationship. The man I was seeing didn't enjoy my monthly mood swings (I mean, I didn't either, but I was also one year into running a market farm I had started from scratch, which sometimes got a bit stressful, if you can believe it), so I promised to seek a solution. The combined pill seemed like a whole commitment; the list of possible side effects was long, and I didn't love the increased risks of various cancers. My understanding at the time was that it was also harder to quit the combined pill, and I wanted something that felt, overall, like a "lighter" option. At the time, it was harder to find information on the "mini pill" specifically, (honestly, it still is) but it was called the "MINI pill", so, you know... just a bit of progestogen, no biggie. I was told it was easy to discontinue, so I gave it a try.

For the first year or so it seemed to help balance those monthly swings. I thought I'd landed on a great fix, and the boyfriend was satisfied that I'd made the effort to resolve my "issue". It's only now, in retrospect, that I can look back and see when the side effects began creeping in. Starting with low-key depression and brain fog, and then the uncomfortable feeling of "bubbles" in my left leg's veins. I was also "breakthrough bleeding" often, and my cycles became less and less consistent. I had just entered my 40s though, so attributed those symptoms to perimenopause.

I was farming, which involved moving my body constantly, sometimes for 12 hours straight. I stretched, got lots of sunshine, and had an active social life. I had goofy chickens and my business was thriving. In every other respect, I was happier than I'd ever been. Then the relationship I was in, which turned out to be quite toxic, ended. It was the kind of breakup where you finally find yourself free, in your own beautiful space that you always loved (and he always hated) thinking why did I let that go on for so long?? It felt great. But still, a vague blanket of sadness was settling on me, and it happened so gradually, and was so easy to justify with external factors, that I simply didn't associate it with birth control. My brain kept feeling foggier, I kept forgetting how I did things, how to find the energy. I was also working really hard, but it didn't feel this hard before...

Then my coparent and bestie was diagnosed with stage 4 cancer, and every sense of sadness and doom was directed to that situation. The dread of it all worsened over time as the cancer slowly stole him away from us, and it ultimately culminated with his passing, followed by the wrenching decision to sell my farm, my animals, my dream, and return to the city with our kids. Grief took over everything, because of course it did. We had to find housing with two farm dogs (we were luckily able to buy a modest bungalow in a lower-income area). I started a brand new, demanding job. We had to surrender our cat, and while our beautiful, gigantic guardian breed dog was too intense for our small city home, I wasn't ready to give him up. On top of everything, we were still deep in the pandemic. Switching birth control brands barely registered.

We had a grief counsellor and were well supported by family and friends, but I just kept getting sadder, and sadder, and sadder. I become chronically fatigued, foggy, and demotivated. I couldn't remember anything, short term or long term. My circulation worsened, and my blood sugar became an issue, despite eating healthy (though usually not eating enough, as my appetite was unreliable). I had varicose veins that were getting worse fast. I felt bloated constantly and bled constantly. I couldn't sit comfortably in any position. Sometimes laying down didn't even help. Any unexpected stressor completely overwhelmed me. I had vitamin deficiencies that worsened my fatigue, despite taking supplements. At work, I couldn't retain any information that wasn't written down. My cognitive abilities, that had once been sharp enough to win awards, build communities, speak at conferences, teach seminars, plan and launch a profitable farming business from scratch... those abilities had sunk deep into a blackened well. I couldn't remember who that woman was. She felt like an entirely different person. Grief and age have changed me, I thought. My ass is permanently kicked, I guess there's no going back.

I also had a growing sense of dread that something was terribly wrong with me. I had a cyst on my ovary that had become monstrous. Fibroids were quickly taking over my uterus. My eyes were constantly bloodshot. Why was my blood sugar and blood pressure so messed up?? Why did every moment feel like I was dragging myself through sludge? I went for tests and scans over and over again. The cyst, fibroids, and vein issues had treatment options, but why were they happening?? What was the cause?? No answers.

The only real relief from the constant weight of muck was through cannabis or sex (but sex meant relationships, which I couldn't do in my state). My kids' grief was easing, and thank goodness for that. They kept me joking and somewhat plugged into the light. I could manage on autopilot well enough at work, and honestly I'm astounded I was able to perform as well I did. But it was a constant, sometimes agonizing push. And the coworker they've come to know me as is nowhere close to my full-capacity self. Of course the crux there is that those impressions are not easy to change. I'm not just a pretty effective person who gets sad a lot, I'm a wildly effective person who can light up a room. I was just living underwater for a very long time.

After more visits with my doctor (who, bless her, also works at a walk-in and is another victim of our over-taxed health care system), followed by another round of scans, followed by another round of no answers, an unexpected appointment came up with a clinic that specialized in women's health. It was for my cyst, and my rural doctor had put in the requisition over a year ago, before I left the farm. While I'm sure we had discussed it, I'd completely forgotten. At the appointment, within 10 minutes of going over my symptoms, the doctor noted it may be synthetic progestins, and presented me with some options. When she mentioned a hysterectomy (a "total hysterectomy", which leaves the ovaries intact), she noted that since they'd be going in for the cyst anyway, they could easily remove the uterus as well, AND it was just a day surgery with minimal recovery time. I almost yipped the word YES. Hells yes. Git it out of me. I'm entering my mid-40s and I do not need more babies. Yes please do remove the burden of bearing children from my body. End this nonsense!

I came home with hope. Whatever was happening, it was going to end. Knowing I soon wouldn't need birth control, and since I wasn't seeing anyone special, I decided I might as well stop taking my pill too. I just wanted to see if there'd be any difference. Would I even notice?

The difference was like night and day. Within 48 hours, it was like the clouds were parting. Within a week, it felt like every cell in my body had been rinsed clean. I dropped more than 5lbs of water weight, and discovered you could retain fluid in your cardiovascular system. Studies have also shown that synthetic progesterone damages blood vessels. The swelling and feeling of "bubbles" in my arteries and veins immediately stopped when I stopped taking the mini pill, though much of the damage unfortunately isn't reversible. The more I dig, the more I find that indicates synthetic progestins reduce blood vessel flexibility, and can be related to heart disease and cardiovascular issues. Studies also indicate synthetic progestins cause insulin sensitivity, causing disruptions in the body's ability to regulate blood sugar. Those diabetes tests I went in for showed none of this (but at least I didn't have diabetes!). Synthetic progestins have also been linked to impaired cognitive function, and have been shown to reduce the neuroprotective effects of estrogen. Oral contraceptives have also been directly linked to a body's reduced ability to absorb vitamins and nutrients.

And finally, depression. It doesn't take much digging to find study after study linking synthetic progestins to depression and dysphoria. From a control group of over 1 million Danish women, to proven effects on adrenergic and serotonergic neural function, the evidence that synthetic progestins are a problem is made abundantly clear.

Progesterone intolerance has finally been named, yet is still difficult to test for. From Balance, the Menopausal Support App:

"Symptoms of progesterone intolerance can be grouped into 3 main areas – psychological, physical and metabolic. Some types of progestogens are known to cause more physical or metabolic side effects, while other types are associated with more psychological reactions.

Possible psychological effects are anxiety, irritability, aggression, restlessness, panic attacks, low mood, poor concentration, forgetfulness, and heightened emotions. Physical consequences of progesterone intolerance can be acne, greasy skin, abdominal cramping or bloating, fluid retention, fatigue, headaches, dizziness, and breast tenderness. Metabolic reactions are when progestogens have a negative effect on systems that produce or regulate cholesterol, blood pressure and blood sugar levels. Progesterone does not usually have these effects.

Symptoms of progestogen intolerance affect around 10-20% of women and it’s often seen in those who use contraception such as the combined pill, the mini-pill, an IUS (coil), or if you take some types of HRT."

Discovering all this has legitimately blown my mind. My thoughts move between how is this legal?? to why wasn't this the FIRST thing my doctors investigated?? But mainly, I'm telling everyone who will listen. THIS IS REAL. THIS AFFECTS A LOT OF WOMEN. THIS NEEDS ATTENTION.

Since quitting the mini pill, I'm feeling a sensational familiarity I thought I'd lost. My brain is clear, fast, and full of colour. My leg almost looks normal! I have energy in my body, even when my mind is a bit sleepy. In fact, sleep has become a bit of an issue, because my mind is positively exploding with thoughts, emotions, plans, inspiration... all the time. Like a drought-starved animal finally finding water, I can't get enough of THINKING. I'm reading voraciously again, and when I stop reading, I lay in bed thinking about everything, about how GOOD it feels to think, about how good my skin feels, my breath, my blood. It honestly feels like I've been reborn, only this new body is actually my old one, and it's exquisite.

More than anything, I feel so lucky that the fix for my depression was such a simple switch. I have much deeper understanding and empathy for people who live with depression, who can't just flick the switch and feel better. My god, what heroes. Keep searching. There is light waiting for you, it's lovely and so, so worth it, I promise.

And lastly, I want to state that I'm not anti-hormonal contraception. I'm not anti-pill. I think women need every option they can get. But holy god, the pill needs to evolve. More research, more funding, more options. PLEASE. And a couple new options for men (even if there are one or two possible side-effects, god forbid) would be just dandy.