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“is there any chance this is a form of anxiety or panic disorder?”

What? If you know me personally, you know my eyebrow is raised and my face is slightly glazed over, and I’m thinking (out loud) WTF kind of question is that!?

That was the question my ENT finally asked me after “exhausting” all her choose your own adventure (remember those books?) options trying to decide why I had ongoing dizziness and episodes of vertigo.

Ummmm…You’re kidding, right?

When our youngest daughter was 18 months old I showed up in the emergency room and she was draped over my shoulder like a ragdoll. She had been sick with the flu for several days and was severely dehydrated (like I couldn’t keep her awake dehydration). I had been on the phone multiple times with the advice line and they just kept telling me all was fine. I finally decided all was not fine. I stood in line, with a feverish baby vomiting on my shirt, and stated flatly that I wasn’t leaving until they gave her fluids. They took us into the back and after taking her temperature, hooked her up to an IV. Then they admitted her and she stayed for two days. That was when I realized that you must NEVER be afraid to advocate loudly for yourself when it comes to healthcare. Cell phone cameras weren’t a thing back then, but I can still envision her toddling down the hall, in her slippers and tiny hospital gown, diaper hanging out of the gown bottom, pushing her IV stand.

Ten years ago, my husband cut off his finger in an accident. My response when I got the call? “Do you have all the pieces? I’ll meet you at the hospital. “That was it. No tears. No panic. I arranged for a sitter and drove to the hospital.

So, no, I’m not an anxious person. At least, I wasn’t…

and then I met #Mirena…

This is the first in a series of posts outlining my personal experiences with the Mirena IUD. I am writing to air my anger and frustration, as well as in hope that other women searching for validation and answers and may find both here. I SEE YOU.

In 2018, at 44, I had the Mirena IUD placed to help with debilitating menstrual cycles. Periods that I now understand were likely the result of estrogen dominance. For those unfamiliar, in basic terms, estrogen dominance happens when your progesterone levels are not sufficient to keep estrogen in balance. There are variables, but most often, when a woman is estrogen dominant, it is because she is not producing quite enough progesterone. The Mirena IUD is a Progestin based contraceptive that is made from silicone. The Levonorgestrel it contains is synthetic progesterone. Truthfully, there probably should have been all kinds of red flags for me. I had been adamantly against hormonal birth control since our fist child was born, I was so desperate, I never gave the idea that it was a synthetic hormone a second thought. At the suggestion of my gynecologist (her selling point was that “the hormone dosage is small and localized in the uterus”) and after reading what information I could find online at the time, it seemed like a good fit. And it was. Until it wasn’t.

Synthetic: ADJECTIVE (of a substance) made by chemical synthesis, especially to imitate a natural product. “synthetic rubber” synonyms: fake, false, imitation, simulated, substitute, pseudo, sham, bogus, counterfeit, forged, pretend, man-made, manufactured, unnatural.

Do you see a trend here?

The thing is, I didn’t even realize what was happening until I was top of my head deep in side effects. Why? The side effects I was experiencing are really difficult to research online. In fact, the information is mostly non-existent unless you are truly willing to dig. Lucky for me, I thrive on research.

In the beginning, it seemed to good to be true, like snake oil, and I was all in. Birth control that would allow me to sail through the last few years of perimenopause and end up in menopause unscathed? Yes, please!! No cramps. No PMS. Lighter periods. No menopause misery. What’s not to like? About a year in, my periods stopped all together. Another win!

WRONG.

That kind of birth control doesn’t exist. The truth is, ALL birth control has positive and negative side effects. That is the one thing you can count on. The question is simply which side effects will YOU experience and to what degree. Maybe they will be minor. Maybe they will be moderate. Or maybe, they will turn your life upside down.

My side effects began slowly. I noticed the bloating right away. As though I swallowed a basketball every morning kind of bloating. I attributed it to age (mid-forties) and slower digestion and thought it probably wasn’t a bad trade for sexual freedom. There it is, one of the only true positives I can attribute to the Mirena. Lighter and ultimately non-existent periods would be the only other “positive”. Turns out, you’re probably better off if you have some semblance of a period while using the Mirena IUD. Why? You’re likely still producing enough of your own natural progesterone. Enough possibly to ward off some of the most troubling side effects.

About a year into having the Mirena (April 2019) I began to pay closer attention to a few things. My nose was breaking out (I’ve ever had acne), my sinuses were perpetually stuffy, my fingers would randomly go numb, and I periodically had bouts of minor dizziness. I was getting hot flashes at night, random heart palpitations, and feeling more distracted during the day. The tinnitus in my right ear had also become noticeably louder. The tinnitus itself wasn’t alarming, just the volume change. I had had minor hearing loss and tinnitus, since I turned 40, from what I believe was an injury to my ear. I suggested the possibility of hormonal changes to my gynecologist. She felt it was more likely a problem with my inner ear. So I emailed my primary care doctor and she suggested having an ear wash and hearing test. Again, I chalked it up to age as I trudged into perimenopause.

Around May of 2019 I began to feel like I had constant PMS. My head felt congested, I had headaches that would last 2-3 days (at my temples, but more painful on the left side), significant water retention (I couldn’t even crack my knuckles!!) and swung wildly between feelings of agitation, annoyance, frustration, hopelessness, and helplessness. Some days I was crawling out of my skin. I tried to track my cycles, but I was no longer getting my period. I remember regularly telling a few of my girlfriends “I just don’t feel like myself”.

How many of us have told our doctors that? “I just don’t feel like myself!” I know I have said it too many times to count and it was always met with versions of the same response “all your blood tests are within range”, “we don’t test hormones because they’re not reliable”, or “it’s just part of getting older”.

I call BULLSHIT!

Seriously. Feeling like crap as we traverse “Mt. Menopause” is not a necessary part of aging. Why should it be? There are so many options out there that can assist in the transition. I’m not talking about synthetic hormone replacement. I’m talking about things like exercise, dietary adjustments, vitamins and supplements, and if necessary, bio-identical hormones. My friends ask why much of western medical protocol isn’t more pliable in this area. I think it’s pretty simple. Healthcare in America is a for profit venture, driven by pharmaceutical companies, and there is no money to be made in wellness.

More thoughts on that topic later.

During the summer of 2019 I started to notice that I was clenching my jaw more often. I had been known to grind my teeth at night, but this was different. I found myself clenching during the day too and for seemingly no reason. By the fall, I had constant pressure in my head, like a water balloon. I blamed it on allergies and all the smoke in the air from the fires in our area.

In January of 2020 we headed to Disneyland for our annual trip. Three days after we returned, all hell broke loose for me (and I’m not talking about the pandemic).

Stay tuned…

-Kim