The Suffer Gap
Shackles of Martyrdom and Lack of Informed Choice
Hi Beautiful Friends,
My last post was on the knowledge gap.
Inextricably interwoven is the trust gap, which I thought I’d post on next, but it’s looking less like a gap and more like a chasm, a depressing one. This HSP needs a break from that line of research.
I hope this post will help those suffering find the courage to bridge the gap that we can actively do something about-
The Suffer Gap
A survey of 250 middle-aged women revealed 78% suffered hormonal symptoms that interfered with their lives, and 23% stated symptoms impacted their lives either “a great deal” or were “completely debilitating.”
Conversely, another survey revealed that only 27% of women actually attempt to treat their symptoms.
The number who are offered and prescribed safe and effective treatment that targets the root cause (decline in estrogen and progesterone) is far less.
Multiple studies have revealed negative impact on work for women suffering symptoms of perimenopause like brain fog, headaches, hot flashes, and mood swings. One survey had 83% respondents say symptoms negatively affected their work. Another study revealed that 50% of working women experiencing symptoms consider retiring or taking a break from work. A recent Mayo Clinic study estimated that American women suffer $1.8 billion in lost working time per year due to hormone-related symptoms.
72% of women are aware of hormone therapy. Yet 65% say they won’t consider it unless it is recommended to them by their provider, or there is new research (which exists but didn’t make as big a splash as the WHI did) that proves its safety.
A Hot Topic
A recent large scale study shows that 80% of women experience hot flashes. Hot flashes/flushes/night sweats are one of the most common and debilitating symptoms of hormonal evolution; they affect sleep and are associated with worse cardiovascular health.
Not only do they happen for the vast majority of women but they can last a long while, especially if they begin before menopause. Black women in particular seem to suffer more.
A recent journal article stated that:
“According to the conventional medical wisdom, menopause-related hot flashes fade away after 6–24 months. Not so, says a new study of women going through menopause. Hot flashes and night sweats last, on average, for about 7 years and may go on for 11 years or more.”
“Conventional Medical Wisdom?” or Dogma
Ok, here’s a tangent but I think it’s worth it.
The term “conventional medical wisdom” gives me pause. I found this definition for conventional wisdom:
“Commonly held and widely accepted ideas and beliefs. It can encompass ideas that are generally held by the majority of people as well as long-accepted expert opinions within a field or institution.”
What I would hope is that “wisdom” within the field or institution of medicine is founded on evidence, such as the SWAN (Study of Women’s Health Across the Nation) study mentioned above whose evidence determined the average length of hot flashes to be 7.4 years. Needless to say, that duration is much longer than 6 months to 2 years, though the shorter time frame is still the conventional belief held by many and framed as a reason to grin and bear it.
Unfortunately, much of women’s health seems based on this nebulous “conventional medical wisdom” that in the face of real science makes the word “wisdom” squirm and exclaim “look away” in embarassment.
As a writer, I love words, but there is an extra special list in my heart for words like “wisdom” (which incidentally I have always associated with feminine intuition), honourable words full of gravitas, dignity, and reverence. For me, the phrase “conventional medical wisdom” in the context of what that often means, makes me feel linguistic outrage because it translates “wisdom” into dogma (a point of view or tenet put forth as authoritative without adequate grounds).
I found a New York Times article entitled “10 Findings That Contradict Medical Wisdom. Doctors, Take Note.” While myths about testosterone in men, Gingko biloba (no idea), and peanut allergies were deemed noteworthy, nothing about menopause was mentioned. Missed opportunity.
Ok, tangent done.
Mixed Messages
On the hot flash FAQ page from the Menopause Society, in response to the question: “Are there treatments for hot flashes?” we find this long-winded and somewhat confusing answer:
“Although the available treatments for hot flashes do not cure hot flashes, they do offer relief. Hot flashes usually fade away eventually without treatment, and no treatment is necessary unless hot flashes are bothersome. A few women have an occasional hot flash forever. There are a number of low-risk coping strategies and lifestyle changes that may be helpful for managing hot flashes, but if hot flashes remain very disruptive, prescription drug therapy may be considered. Prescription hormone therapy approved by FDA and by Health Canada—systemic estrogen therapy and estrogen-progestogen therapy for women with a uterus—are the standard treatments.”
The first part of the first sentence reminds us that there is no cure, which doesn’t answer the posed question. The second half of this sentence says there is treatment that provides relief. Great! Are you going to tell us what it is? Nope, not yet. Instead, we get the reassurance that hot flashes usually, eventually fade away without treatment, that treatment is not necessary (according to the person experiencing them?) unless they are “bothersome,” (whatever that means). We do get the acknowledgment that a few women have hot flashes forever (although the wording paints the picture of a woman in an eternal state of hot flash hell). Surely this is where they reveal the treatment. Still no. Instead we get a statement about “low-risk” coping strategies, which makes it sound like the next option will be high-risk. Evidence on MHT demonstrates that it is low risk for the majority of hot flash sufferers in perimenopause, women younger than 60, or within 10 years of menopause. Are they suggesting that if we’ve spent several months, maybe years, and dollars (or lost dollars from missed work) trying other strategies and lifestyle changes, and we still have disruptive hot flashes, then, only then, should we consider MHT?
No wonder only a quarter of women in the US suffering from hot flashes actually seek treatment. It’s too hard to understand the meandering, fear-mongering guidelines of the society we’re supposed to trust for menopause care.
The International Menopause Society handles the question much more directly. Under “Treatment options” it states that “…estrogen reduces the frequency of hot flushes by 80%…which indicates that HRT is the most effective treatment for hot flushes and night sweats.”
Thank-you!
In the UK, MHT (or HRT) is much more frequently prescribed and used as a safe, effective treatment for hot flashes and other symptoms. In fact, on the other side of the pond after the release of a documentary on menopause in early 2021, the use of hormone therapy surged so rapidly (130% in the second half of 2021) that England experienced headline making shortages of hormone therapy. MHT use in the UK is currently about 3.5 times what it is in the US, and still on the rise.
Australia and Canada are two other countries that have higher rates of hormone therapy use than the US.
The WHI Hangover
Dr. Joann Manson (professor of Women's Health at Harvard Medical School, professor of epidemiology at Harvard School of Public Health, and the world’s leading researcher on menopause) said this about the SWAN findings:
Hormone therapy use decreased by 70-80% after the WHI. (Dr. Joann Manson on thedrive podcast: #253)
To her credit, Manson goes on record on the drive podcast #253 with Dr. Peter Attia to acknowledge some of the harm caused by the WHI including that:
“Women never should have been denied hormone therapy for the treatment of bothersome distressing hot flashes, night sweats to improve their quality of life. Especially generally healthy women in early menopause, who have such low absolute rates of adverse events.”
Authors of the above mentioned journal article referred to the SWAN study as a “reality check” on hot flashes. They conclude that if hot flashes and night sweats are disruptive, a woman “should not put up with them. She should consult the doctor about treatment options.”
A Not-So-Hot Topic
In a study of 900 women undergoing routine examinations 6 years post menopause, GSM (discussed in previous posts on sexual health and UTIs) was identified in 84% of cases.
What’s more….
Unlike hot flashes that usually improve over time, GSM, is “generally progressive without effective therapy.”
What’s worse….
What’s reprehensible…
The FDA has failed to take the black box warnings off of vaginal estrogen cream despite that none of the warnings have been validated in 18 years of data. Dr. Rachel Rubin is on record in the podcast Back Table Urology: episode #117 as saying “the FDA is killing women” by scaring women off of lifesaving treatment by failing to remove these warnings.
Looking Ahead
By 2025, an estimated 1.1 billion women throughout the world will be postmenopausal.
That forecasts a lot of symptomatic, untreated women. Unless…
We start educating, advocating, and demanding better options.
Symptoms as Gifts
When I first started to complain of symptoms I was told I was merely getting old. If by “just getting old,” my health care provider meant hot flashes, insomnia, heart palpitations, sore joints, cyclic migraines, (the list goes on and on and head to toe) then yeah, my diagnosis was “just getting old.”
You can see an extensive but not exhaustive list of symptoms/gifts here. How are these gifts, you ask? In moments of fatigue, I was forced to slow down and carve out boundaries. I also simply didn’t have the energy to be as reactive as I’ve been in the past, giving me the pause necessary to separate my emotions from my behaviours. My fatigue insisted upon self-regulation because I just couldn’t muster up rage (a protector part if you’re into IFS language) anymore. Funny how fatigue can look like patience. This phase of life forced me to put my health first, physical/mental/emotional (I don’t separate those).
What I know now is that hormonal decline is a part of getting older, yes, but often it can be treated safely and effectively if we’re given the choice.
The Highest Feminine Virtue: Martyrdom
One of my favourite quotations ascribed to the Dalai Lama as well as a few others, is: “Pain is inevitable, suffering is optional.” I understand this to mean that even when we are in pain, we have the power to transform our experience from one of suffering to one of growth by shifting our perspective. However, I am a firm believer that sometimes the pain we suffer as women is avoidable.
With informed choice, rather than wasting our energy on grinning and bearing symptoms, we can choose options that allow us to put our resources and strength toward doing more good, which is what I see most women doing.
I did bear symptoms for some years. One symptom I didn’t bring up at appointments was the heavy, painful periods full of scary over-sized blood clots that were so big I called them my “blood babies.” What stopped me from mentioning these to my doctor? Likely, a little embarassment. Menses is still culturally shrouded in shame. I also remembered my mother having the same heavy bleeding. I even remember the odor. I chalked it up to one more thing I needed to endure. Another cultural norm I had adopted — the belief that being a woman meant being a martyr. I’d seen both my mother and grandmother practice martyrdom like it was a competitive sport and they were training for the Olympics.
In the end, it took the one symptom that was beyond bothersome for me to insist on better care. Beyond even the blood babies.
Nature’s Soft Nurse
“Sleep that knits up the ravell'd sleave of care, the death of each day's life, sore labour's bath, balm of hurt minds, great nature's second course, chief nourisher in life's feast.”
Arguably, no writer has spoken more eloquently on sleep than Shakespeare.
Sleep deprivation is associated with:
chronic illness
poor cardiovascular health
metabolic disease
immune dysfunction
Without sleep we are less able to cope with stress. Ultimately, poor sleep not only destroys our healthspan, but it can even shorten our lifespan. I drew the line in the sand on the beach of martyrdom when it came to sleep. When sleep first became an issue I delved deeply into the work of sleep researcher, Matt Walker (professor of neuroscience and psychology at UC Berkeley and author of Why We Sleep). Without the understanding of how important sleep is, I may not have drawn the line.
The more we know, the better choices we make.
Here’s another favourite quotation of mine by French philosopher, Simone Weil. “It is better to say “I am suffering” than “this landscape is ugly.”
It is challenging not to blame our environment, our partners, our kids, our parents, our employers, even ourselves, when we are suffering. It takes accountability, bravery, and vulnerability to say “I am suffering.” But when we ask (sometimes demand) help, and relieve our suffering, especially if that suffering is from sleep deprivation, how much more beautiful the landscape becomes!
Revisiting the Knowledge Gap
Dr. Sharon Malone, medical director of menopause telehealth company Alloy, mentioned this week in a webinar that many doctors are still basing their clinical practice on the preliminary misleading findings of the WHI . She questioned whether most doctors read the study themselves, which is what she did when it was first published. As an OB-GYN, she had the privilege of expertise in interpreting the data to discover that for her, benefits outweighed the risks, risks she deemed not substantial. She has been on hormone therapy for fifteen years and has no plans to stop taking them.
According to Dr. Mary Jane Minkin on the podcast Perimenopause WTF: Cognition & Mood in Perimenopause, only about one third of medical schools in the US teach menopause care. When they do, it typically consists of a half-day lecture. Menopause education is often optional.
No wonder that when surveyed, almost half of women (45%) didn't know the difference between perimenopause and menopause. Our health care providers typically aren’t explaining these terms that they may not even understand themselves.
Where do we turn then to learn about what’s happening to us?
The Generation Gap
Of the women who are treating symptoms, 91% do not speak to their mothers about them, and 83% are not using the same methods that their mothers used.
Reaching out to our mothers who have gone through what we are now facing, is only natural. Yet, I hope for the sake of our generation and generations to come, that we are not using the martyr, grin-and-bear-it technique that so many women were forced to use in our mothers’ time. Perhaps that’s why so many of us are not attempting to use our mothers as a source of wisdom. Or maybe you, like a dear friend of mine, have tried to reach out only to come up against old, bad news and a lot of fear.
Filling the Gap
I can see from the stats that many of you are reading Zevah Substack. That’s really exciting for me and motivates me to keep going. Huge thanks!
I’d so love to hear from you.
Have you tried to approach the conversation of menopause with your mother? How’d it go?
What symptom is driving you nuts?
Any bizarre symptoms like tinnitus? Itchy ears? Broken tooth or sore gums? Strange vibrations? Numbness?
Anything about this topic of hormonal evolution you’d like to know more about?
Let me know in the comments below!