It started innocuously enough – a night or two of broken sleep.
I thought it was because of my husband’s years-long snoring. In the preceding years, he’d tried nasal strips, a mouth device and, finally, a CPAP machine (that he used infrequently) to make the snoring abate, with no success. I’d gotten earplugs, which helped drown out the snoring and other ambient sounds, but I found my disrupted sleep occurred independent of, and in conjunction with, the snoring and other audible breeches during the twilight.
Then I thought the room was too hot and, therefore, keeping me up. Maybe between the body heat generated by my husband and the sheets, blanket and comforter we had on the bed – plus the cats periodically sleeping with us – perhaps it was just too much warmth for me to tolerate anymore. I started dialing down the thermostat and turning the ceiling fan on max speed.
Then maybe there was just too much on my mind. It was the first year of COVID, and our household was knee-deep in months of total change. The girls had been home from school practically all year; my husband worked in healthcare, and was in and out of hospitals all the time. Moreover, he was also working from home more routinely. I was never by myself. And I had recently left a chaotic full-time job, a position with an organization that was in a state of perpetual flux, second-guessing and assorted decisions that made little sense – and made employees’ altered lives even more tricky and stressful in all that 2020 brought to us.
My Fitbit told the story of my sleep. It was getting worse and worse. I remember texting a friend about it, ranting about the degradation in my digitally chronicled sleep time, charted by more awakenings, longer times lying awake in bed, less REM time and so forth. As things worsened, I started turning toward the most accessible remedies. I tried over-the-counter meds first, like ZZZQuil. That was ineffective, so I tried more natural offerings: melatonin, chamomile tea, ashwagandha. Those didn’t work at all.
The first time I had been awake for more than 24 hours, despite my fatigue and true desire to sleep, I called the on-demand physician line available through our health insurance. I pleaded with them for help, for something to help me sleep. They prescribed hydroxyzine, a prescription-level antihistamine. It did nothing for me. I called back again several days later; this time they prescribed Trazadone, an antidepressant that’s mostly used off-label for sleep support, rather than for the treatment of depression, these days.
Sadly, it didn’t help either.
Feeling increasingly out of sorts, I made an appointment with my primary care doctor. After asking a battery of pretty generic questions and finding nothing to alarm her or escalate my case, she prescribed Lunesta. I was so happy, as I’d heard so much about how the drug made people “zonk out” and get some rest! My hopes were soon dashed, as the medication did nothing for my insomnia. I made another appointment with my primary care doctor; this time she prescribed Ambien. “Oh, my gosh,” I thought, just knowing this would do the trick and regulate my sleep cycle.
Sadly, it didn’t.
I went back to my doctor and requested a full thyroid panel. My reading and research had led me to believe that this could be the problem. Plus, my mother had developed thyroid issues around the age of 30. Maybe I’d inherited this predisposition, I reasoned. Being unable to sleep and feeling a bit restless were probable symptoms. But all the labs came back normal.
By this time, weeks had passed, and I was at times sleeping for an hour or two here or there, and sometimes I’d be awake for over a day before finally crashing for a brief sleep spell. I reached out to my doctor again, this time via the online messaging platform, only for her to respond, “Go to the ER!” Going to the emergency room for insomnia during the height of a never-before-witnessed pandemic, when hospitals were already at capacity and on diversion status, did not seem like a smart idea. This doctor was clearly done with me; she had no idea what to do, and as a cog in a mega-regional practice, she probably was at her own wit's end.
So next I did something I never thought I’d do.
I made an appointment with a psychiatrist.
* * *
As someone without a history of mental health issues, there was a sense of shock and shame in reaching out to a clinical “head doctor,” but I almost felt as if I had no choice. Something was clearly wrong; everything thrown at my proverbial wall would not “stick;” my primary care physician had thrown me to the metaphorical wolves; and a trusted friend who is a healthcare professional told me that only a shrink had the capacity to prescribe certain medications likely to help me sleep. Yes, regular doctors can and do prescribe medications like antidepressants and sleep meds (Think of all the scripts they write for Ambien, Lunesta, Cymbalta, Amitriptyline, Zoloft, Paxil and the like), but they really don't have the intensive expertise to understand all the mechanisms, pros and cons involved in this type of pharmacology.
Around this time, I also started to think something else was at play: something no doctor had yet proposed – perimenopause. Nothing else made any sense. My online research, reading and process of exclusion led me nowhere but here. Tons or women online were complaining about similar things – couldn’t sleep no matter how tired they were, couldn’t turn off their minds at night, feeling restless and on edge after bouts of sleeplessness. So many of them were like me - in their 40s, kids in tow, marriages more than a decade long, educated with careers, intelligent, community-aware and involved.
Physiologically, aside from recurring pain episodes resulting from a long-ago whiplash injury (and a relatively recent neck surgery to address the aftereffects, a herniated disk), I was the picture of health. At 43, I was not on any medications, didn’t have diabetes or hypertension, exercised more often than not and had an eating plan that was way healthier than average. I rarely even ever got a cavity!
When I first met with the psychiatrist, I was asked a litany of questions dealing both with my physical health and my emotional history. Many of the questions related to issues of trauma, loss and / or abuse. They also touched on any incidence of familial mental health disorders. I was forced to divulge some unsavory happenings from my childhood, as many practitioners believe that we are never really rid of our adverse childhood events (ACEs), and that they can crop up again during midlife.
The psychiatrist latched onto this theme and really seemed to think I was suffering from the aftermath of childhood issues, at the very least, in addition to many matters we never got around to discussing, such as my reaction to the pandemic, having lost my best friend and brother in untimely deaths, and the racial reckoning of 2020 as well as daily, lifelong stressors involved in being Black in America.
He said he couldn’t really pin a diagnosis on me, but settled on terms like insomnia, anxiety and adjustment disorder in documentation, in case I wanted to file for insurance reimbursement. He then went on to prescribe all sorts of medications, including antidepressants and benzos, to try to help me sleep. This occurred over weeks and months. Some of the meds, I refused to hear about, much less even take. I refused the SNRIs, the SSRIs, a protracted course of benzos and more. I did try the typical go-to’s for insomnia, like hydroxyzine and Trazodone, neither of which worked, as well as older-class antidepressants with sedative qualities, like Doxepin, which was minimally effective in helping me get some sleep. It was like my physical body had turned against my brain’s desire and need for rest. I knew I wasn’t a textbook psychiatric case and told him I thought I was perimenopausal. He neither decried nor denied this speculation, and encouraged me to do what I could to pursue answers.
So I returned to my primary care physician and insisted on a full reproductive hormone panel. I reiterated my sleep issues, but also mentioned that, in retrospect, I realized I had been having night sweats for over a year. Yes, it was true. I had simply thought my husband was producing extra body heat, that the thermostat was too high, that it was the cats’ fault or we had too many blankets on the bed. I would awaken in the night to find myself drenched, so sweaty that I needed to strip or change clothes. My doctor seemed dubious about the testing, but agreed to it.
My results trickled in several days later. All of my hormone levels were deemed "normal," though upon my closer analysis, I saw that certain hormones were indeed in the low range. My doctor curtly wrote to me in the messaging portal, “All female hormones normal! Not in menopause yet.” There was no follow-up or further recommendation from her other than to seek a sleep study.
Hopes somewhat dashed, but knowing more than I knew before, I plodded along with my friendly psychiatrist, booking appointment after appointment and trying more and more meds. Then I decided to book an appointment with an OB/GYN.
* * *
We were still amid the height of the pandemic, and I dared not visit a doctor’s office in person if I could avoid it. So I stumbled upon a virtual telehealth clinic that specialized in women’s health, allegedly focusing on perimenopause and menopause. I signed up, completed an online questionnaire, and had a video appointment with an OB/GYN who was supposed to be well-versed in all matters menopause.
I described my symptoms, provided an overview of my total health and medical history, and explained all that I had tried to date. I also read off my hormone lab results to her. Her verdict? She said I was in perimenopause, stressing that though the lab results are helpful, if everything else is ruled out, it’s best to go by and treat the symptoms, no matter what the hormone levels are. She agreed that my progesterone and estradiol levels were low, especially for someone my age. For that, she prescribed a course of birth control pills – something I had not taken for many years – certain that they would reduce, if not eliminate, my symptoms and restore my sleep.
I was so excited to pick up the pills from the pharmacy and start taking them. By this time, my husband and I had become regulars at the pharmacy pick-up window. After eyeing him suspiciously during one such pick-up, my husband finally said, “We think it’s menopause, that my wife is in perimenopause.” He said the pharmacist and the pharmacy techs all then breathed a sigh of relief, smiled, laughed and threw up their hands. “Ah, that makes sense now!” the pharmacist said. This same pharmacist later told me she stayed on birth control pills through the age of 60, so she "wouldn't have to put up with any of that shit."
I started the birth control pills in earnest, taking them as prescribed day by day. The days soon turned into weeks, and the weeks turned to months. As I approached more than two months on birth control pills, I was getting no better. In fact, I felt I was deteriorating, so I started looking for more answers, new answers. I scoured online reviews and booked an in-person appointment with a local OB/GYN who was supposedly “menopause certified” by the North American Menopause Association (NAMS). She was a Black medical provider, which boosted my confidence that she would relate to me as a full, whole being, and she was highly praised in the city as among the best in her profession.
I was so disappointed by her.
She read my prior hormone panel lab and said it was odd that my estrogens (which include estradiol, estrone and estriol) were so low, whereas my FSH and LH values were normal. This OB/GYN concluded that I was perimenopausal, but she suggested I stay on the birth control pills or try an SSRI antidepressant! By this time, I felt like I knew more than these providers. I had read up on the latest trials and research into contemporary hormone replacement therapy (HRT), and I knew therein was the likely answer to what I needed.
My disbelief was palpable: “I can see you’re not interested in trying the antidepressant,” she said. “Some women do have success dressing in layers or taking CBD oil.”
That was all she had to offer – continued ineffective birth control pills, SSRI antidepressants, dressing in layers and taking CBD oil!
I was beyond disappointed now. I was incredulous and growing pissed. An ire was bubbling inside, stoked and primed for an inferno.
* * *
I was now more than four months into torture. I could not sleep, I was on edge, and I felt like I was falling apart. I stopped all medications prescribed by the psychiatrist and told him that I was going to let things play out. “Surely, my body will fall asleep at some point, right?” I said. So it continued, day after day after day with no relief or end in sight.
It got so bad, so relentless, that I ended up in the ER. It felt like my heart was racing, I felt murmurs of chest pains and I was famished from lack of sleep. By now, the pandemic was in a different phase, and the ER was practically empty.
They ran all sorts of tests, checked my heart, drew blood. Everything came back normal, as I knew it would. My husband told one of the nurse managers, “We think it’s perimenopause.” Her eyes got wide, and she said, “Oh my God, that makes total sense,” and whipped out a Post-It note, jotting down the name of her OB/GYN.
I was in such a bad way that I texted my psychiatrist upon discharge. He advised that I take a medication I had long refused – a type of antidepressant that’s used for insomnia and anxiety at lower doses. I knew I could not carry on like this. Plus, my family had a planned beach trip in just a few days. I had to be functional for that.
So, that night, I relented and took a full dose of the medication I had refused several months ago. And I slept.
I soon realized why this medication did help me sleep, being the steady researcher I am. My estradiol level was in the pits (at 24!). Estradiol is the main estrogen within a woman’s body. Estrogen levels impact cortisol and serotonin levels; if estradiol is low, cortisol (the stress hormone) typically rises, and serotonin (a neurotransmitter associated with mood and sleep onset) declines. The medication in question suppresses cortisol and raises serotonin, though it does not beneficially impact estrogen levels.
Meanwhile, I knew I had not reached a final answer to my health. I began investigating medical experts likely to be more knowledgeable about hormone replacement therapy (HRT), and I found one specialist with her own small practice. She was a reproductive endocrinologist, plus a practicing OB/GYN, all in one. If anyone knew what to do about a case like mine without writing it off with birth control pills or SSRI antidepressants, I figured she would.
It would be two weeks before my appointment, but an inner resolve and utter knowing took hold within me. Somehow, I just knew she was going to provide the help I so badly needed. I have a strong sense of intuition and an abiding conviction that are rarely proven wrong. So we went on our family vacation as planned; I slept through the nights on the antidepressant and, though I felt a little wobbly and hazy at points during those days, I made it through.
* * *
Upon our return, I went to see the reproductive endocrinologist. She was an older woman, someone who surely had guided many births, tendered many fertility treatments and aided many women crashing from perimenopause, like me. I came equipped with my prior thyroid and reproductive panels in hand. I also brought along the birth control pills I was still taking.
She entered the room, introduced herself and waved. I could tell she was smiling, though we were all masked, as she extended her hand in a faux hand shake (social distancing in effect). She gave me the floor and asked me to explain what was going on. I described the full chronology of all I’d gone through – the onset of symptoms, the retrospective realization of night sweats for more than a year, all the doctors’ visits, the many medications prescribed, the current antidepressant helping me sleep, the useless birth control pills.
She listened intently, then started thumbing through the printouts of my lab results. “Well, there is NO estrogen in those birth control pills,” she said. “And it looks like your estradiol is pretty low. What we can do is bump you right back up where you should be!”
Oh. My. God.
I felt like crying. I didn’t have to plead my case, sell my story or wage a campaign to get what I knew was most of the answer my body needed.
I didn’t even mention hormone therapy. She just offered it.
She asked about my mother, when she went through menopause and what kind of symptoms she had. I told her that my mom says she went through menopause around age 58 with no issues. The doctor then asked about my mother’s size and build. I explained that, back then, my mother was a heavier woman (who has since made many dietary changes and lost weight), and she’s shorter than me.
“That explains it,” she said. “Maybe if you gained 40 pounds, you wouldn’t be having such a hard time.” The doctor casually explained that body fat produces a different type of estrogen (estrone, not estradiol) that can help blunt the impact of the perimenopausal hormone fluctuations. I stand 5’7” and work out almost daily. While I am not textbook thin, the doctor told me that I don’t have much body fat.
“How long might this go on?” I asked.
“Oh, it could be two years, four years, 12 years . . . everyone is different,” she said.
She went over the method of delivery of the hormone therapy, prescribing patches, but explaining that there are other alternatives, like topical gels, if the patches proved problematic. She also explained that there may be a need to adjust dosages as time goes on. She asked about my gynecological history – if I’d ever had an abnormal Pap smear, fibroids or postpartum depression.
In the clear, she gave me the prescription and said she looked forward to following up in six months.
* * *
I’ve now been on HRT for several months. I started feeling a difference within just two weeks once I started taking it. My prescription includes estradiol patches and oral micronized progesterone. I wear a transdermal patch that I change twice weekly, and I take the progesterone capsules nightly. My improvements as a result of HRT are:
Feeling less “on edge” – I previously had no personal experience with or understanding of anxiety, but now, in retrospect, I realize there was some element of this involved in my symptoms. I was in a state of fight or flight, hyper-vigilant in a way I’d never been before.
Feeling calmer and settled – Because I am no longer “on edge,” there is a sense of calm and tranquility in my body. In fact, I feel more like I did before this perimenopausal onslaught ever happened. As I look back at my former symptoms, I even experienced physical manifestations of anxiety, such as a reduced appetite and physical chills.
Reducing other medications – I stayed on the full dose of the sedating antidepressant (Note: not a hypnotic like Ambien or Lunesta, and not a benzodiazepine) I was taking off-label for sleep for two full weeks after starting HRT. Then I began the process of reducing it, with the hope of eliminating the medication entirely. I eventually got down to 25 percent of the former full dose – a 75 percent decrease. There is no way this would be possible if the HRT were not helping. (Note: Some women must still take additional medications for sleep, depression and/or anxiety or other symptoms even after initiating HRT. HRT is not always the only answer for each and every symptom.)
Sleeping better – My sleep is still not 100 percent fixed; sometimes I wake up at an odd hour, and sometimes I am wide awake thinking about random topics for no particular reason. I realize my sleep patterns may not completely return to my pre-perimenopausal status again (for a number of reasons, including the ongoing hormonal fluctuations, reduced melatonin production with age and more). But it is gratifying to find some level of rest again, averaging 6.5-8 hours a night.
Fewer night sweats – The night sweats have significantly improved, initially from 4-5 nights per week to approximately twice a week. Currently, I am averaging one night sweat a week, and it is typically a lighter glaze rather than an all-out downpour.
This is all after only a few months on HRT. Assuming my health stays intact and I stay on top of my healthcare with typical screenings, and all indicators are favorable, I will remain on HRT indefinitely. As I am only in my early 40s, it is likely I won’t reach full menopause for at least another 4-10 or more years. But women get on HRT during perimenopause when the symptoms become too much to bear, not to hasten the arrival of actual menopause. And, medically, there are no reasons to discontinue HRT even once full menopause (12 consecutive months without a period) is reached, notwithstanding any lifestyle or medical contraindications.
* * *
The evidence is clear: Perimenopause is a surprise to legions of women who – stupefied, frightened, agonized, puzzled and scared as hell – are shocked to find out about. The stories resonate clearly across YouTube videos, social media forums and online communities. Women feel lied to, misled, shut-in in darkness by a code of silence that reverberates across mass media, the medical profession, the educational system and even our very own mothers and the women in our families.
We crash our way into perimenopause, our bodies feeling betrayed and our lives upended by all kinds of symptoms (of which there are at least 40 attributable to perimenopause and menopause). And those from whom we seek answers – doctors, namely – are ill-situated to serve and suit us. Many physicians receive either no training on perimenopause and menopause, or they get a piecemeal sampler that in no way touches upon the nuances, specifics, consequences, realities and treatments of this hormonal storm.
I saw nine doctors before I was properly diagnosed and treated. Unfortunately, as I see more and more each week, many women are misdiagnosed for other ailments, when the real problem is perimenopause. And "properly treated” is important because three separate physicians recognized I was perimenopausal, yet only one provided the most proven, top-shelf treatment currently available to address it. I am sorry to say that it appears most OB/GYNs are better served monitoring pregnancies and delivering babies than treating women who are 1) not trying to get pregnant or 2) approaching or beyond the reproductive years. And most garden-variety internal medicine doctors are no better at properly recognizing the signs and symptoms of perimenopause, let alone treating it.
This is an absolute travesty and an unbelievable tragedy with fallout that, I fear, is far reaching and life altering. The medical blindness to a life status more than half of the global population will reach and endure is the utmost in professional dereliction of duty. The cultural ignorance of it festers is trapped in layers of long-held sexism and gendered norms (most scientific studies test modalities and medications on men, not women).
Meanwhile, men who have a little trouble getting it up or who just don’t feel quite like themselves face few barriers in getting vials of intravenous testosterone prescribed – by anti-aging clinics, general medicine doctors, urologists, anyone with a white coat, it seems. But women suffering through a phase that is truly a state of hormonal withdrawal with all sorts of physiological and psychological implications receive guidance to talk long walks, meditate and drink herbal tea.
I am thankful to the fewer than a handful of medical professionals who were helpful along my journey. I can indeed count them on about three fingers. They are to be acknowledged for their patience and perseverance, though only one had the training, background, knowledge and experience to deliver the most suitable and viable solution (though, even with HRT, many women adopt and incorporate strategies that may also include new supplements, medications and lifestyle practices). I count these doctors as part of my continuing care team.
Ultimately, I saved myself. And as a woman of faith who is a believer, I give God the utmost credit for seeing me through one of the most harrowing experiences of my life. I have a new way of being: In addition to using HRT as part of my new prescription in life, I also have another new component, a verbal thanksgiving I utter every morning I awake: “Thank you, Lord. Thank you, God. Thank you, Yahweh. Thank you, Yeshua. Thank you, The Holy Ghost.”
For nothing else could have primed me for my extended interlude navigating the U.S. medical system as a newly perimenopausal woman.
10/2/2021 02:03:47 pm
You are amazing!! And I thank God for the blessing of having you as my one and only daughter, my advocate and the advocate you are for many other women!! ❤
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The Real Peri Meno is devoted to all things perimenopause - the science, treatments, care, understanding, personal experiences, relationships, culture and more. The brain child of Keisha D. Edwards, The Real Peri Meno developed out of her own shock-and-awe experience with perimenopause and navigating the disjointed U.S. medical system in search of answers, support and relief.
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