by CM Carr, founder of mySysters
How It Started
The throbbing started while I was running errands on a Saturday morning.
I was in my early 40s, and this headache felt different than any I’d ever experienced.
Within a few minutes the pain worsened and I headed for home.
By the time I reached my house—less than 15 minutes—the pain and nausea were so bad I was seeing spots and could barely walk to the bedroom.
I’d never had a migraine but I’d cared for a friend who had, so I was fairly certain I was experiencing my first one.
Convinced it was a fluke, I went on with life once it passed.
History Repeats
A few weeks later, a second migraine hit; this one even worse.
I knew from caring for my friend that migraines normally begin when people are teenagers.
Why would I get migraines in my 40s?
The culprit turned out to be hormone fluctuations.
I was given lifestyle tips to avoid triggering future migraines, and medication to alleviate the migraines that broke through anyhow.
No one said,“Migraines are a natural part of life. You shouldn’t go to the doctor for that!”
The Hypochondriac
The migraines were followed by years of strange symptoms that came and went and made me think I was going crazy:
- dry eyes,
- vertigo,
- a sudden distaste for tomatoes and red wine,
- bouts of anxiety and/or depression, and
- urinary issues so severe I knew the location of every public bathroom within 20 miles of my house.
In all those years, not one doctor mentioned perimenopause, and other than the migraines, none of those issues was ever tied to the endocrine system (aka hormones.)
Doctors told me it was all in my head, that I was subconsciously jealous of the attention I was giving to my family.
I had two young children, a mother who was disappearing more and more each day into a dementia-induced alternate reality, a father who was in and out of the hospital with broken hips and hip replacements, and a cancer-survivor husband who traveled for work and then survived a heart attack at age 48.
Compared to all that, what was a little vertigo and anxiety and painful vision?
I went to a therapist for hypochondria.
“This needs to stop,” I told her. “It’s painful and I don’t have the time.”
“What if,” she began gently, “it’s NOT all in your head? What if the doctors are wrong? What if everything you’re feeling is REAL?”
We stared at each other.
“Well that’s just CRAZY,” I replied.
I found another therapist.
She repeated what the first therapist said.
I told her she was crazy, too.
The Lightbulb Moment
Almost TEN YEARS after that first migraine a series of urinary tract infections (UTIs) left me practically housebound for nearly six months. SIX. MONTHS.
It was a nurse practioner who told me flat out, “This is all menopause related. You need to call your ob/gyn.”
I called that day.
It took two years before I felt as though I had my life back.
Two years of doctor appointments, tests and trying different treatments.
Two years, three ob/gyns and two urologists.
Two years.
Three ob/gyns.
Two urologists.
WORKING IN CONCERT.
mySysters was created during those years.
I developed the app because I needed it.
I don’t have a tech background but I was desperate for help.
The Healthcare System
During the decade I struggled to get help I lived driving distance to the Mayo Clinic and many world-class medical facilities.
I had great medical insurance.
My (now former) husband is a biomedical engineer at a Fortune 500 healthcare company.
My doctors were ‘good’ doctors.
They simply weren’t trained in perimenopause or menopause.
I’m trained as an attorney and a journalist.
I had EVERY ADVANTAGE POSSIBLE and I still couldn’t get the help I needed.
WHAT THE MEDICAL FIELD KNOWS ABOUT PERIMENOPAUSE AND MENOPAUSE
Perimenopause means “around the menopause” and refers to the years of transition before the date of the final menstrual period.
According to the North American Menopause Society, perimenopause can last for four to eight years.
However, the Centre for Menstrual Cycle and Ovulation Research at the University of British Columbia describes perimenopause as a ‘six- to ten-year phase ending 12 months after the last menstrual period.’
My sister and I see different ob/gyns at the same clinic.
My ob/gyn’s opinion on hormone therapy is ‘If that’s what you need then that’s what we’ll do.’
Her ob/gyn’s opinion on hormone therapy is ‘that’s a vanity product for women who can’t deal with getting older.’
The first reaction when I tell people that story is often to assume my ob/gyn is a woman and her ob/gyn is a man, but the opposite is true.
A couple of years ago, by a twist of fate, I met the doctor who trained my ob/gyn when he was a resident, and she is a delightful force of nature who’s been advocating for better women’s healthcare for several decades.
She influenced at least one young doctor and I’ve no doubt many more, but unfortunately my ob/gyn is the exception.
Only 12% of US ob/gyn residents receive any training on menopause, and half of US counties have no ob/gyns in residence at all.
In 2017, the American College of Obstetricians and Gynecologists (ACOG) predicted a shortage of 8,000 ob/gyns by 2020 and 22,000 by 2050.
This lack of medical care hits poor and rural women the hardest, as those are the areas often lacking any physician or medical clinic at all.
My own rural hometown used to have a Physician’s Assistant that held office hours a couple of days a week.
Now the nearest medical facility is 18 miles away.
It gets worse.
Hospitals are closing their obstetrics units to save money.
Stay with me…this relates to menopause, I promise.
Years ago, a friend of mine didn’t make it the 18+ miles to the hospital in time and gave birth in her car.
That was BEFORE the ob/gyn shortage and the closing of the obstetrics units.
Where are most of the obstetrics units being closed?
In areas where the women are either
- black
- indigenous
- poor, or
- all of the above.
When those units closed, premature births and maternal mortality rates increased.
In a country that’s decided to play roulette with the lives pregnant women, where do you think menopause lands on the List of Important Health Issues That Must Be Funded and Researched Immediately?
WHAT IS YOUR BODY WORTH?
In other words, in the US women’s bodies LITERALLY have a lower financial value than men’s bodies.
It is disingenuous for people who have the privilege of socialized medicine, or who do not suffer extreme side effects of hormonal fluctuations, to criticize those of us for whom even basic healthcare is a luxury.
In 2016 alone, the year of the lightbulb moment and UTIs, my medical bills were more than seven-thousand-dollars.
That doesn’t include the monthly insurance premiums.
And I’m one of the lucky women who even has health insurance. Millions don’t.
What Does Medicalization Mean?
We “medicalize” all sorts of things.
We go to the dentist for cleanings.
This is medicalization of oral care.
Women go to doctors, midwives or other healthcare professionals for prenatal care.
Indeed, we would think women negligent if they failed to seek some sort of professional care during pregnancy.
This is medicalization of pregnancy and, subsequently, childbirth.
Women have been giving birth for thousands of years.
We don’t tell them to forego the hospital, medical assistance, or the subsequent pediatric appointments.
Medicalization of Men’s Mojo
Ads for male hormone replacement therapy (HRT) are EVERYWHERE in the US as a cure for everything from baldness to fatigue to erectile dysfunction.
No one suggests that these men are “‘less natural”’ or that men’s aging is being medicalized.
No one is telling men to eat more soy or exercise or their issues are stress-related.
Why are those the only solutions for perimenopause or menopause?
And such medicalization has been going on for millenia.
Roman emperor Caligula took extract of wolf testes when his mojo started to go.
Well into the 1900s, men had goat testes implanted into their scrotums in attempts to hold on to their virility.
There were no outcries about how men should age naturally and how surgically implanting goat testes was medicalizing men’s aging process.
Yet mention getting treatment for perimenopause or menopause and all hell breaks loose.
There is bemoaning of the modern “medicalizing” what is a “natural” part of life.
What does SYMPTOM mean anyhow?
Here at mySysters, we once had a conversation about renaming our symptom tracker.
Was “symptom” too “medical”?
Did it indicate that perimenopause was an illness to be cured?
One definition of symptom is a “characteristic sign or indication of the existence of something else.”
Sure we could get all creative and change “symptom tracker” to something such as “indicia tracker,” but would you know what we were talking about?
The reality is that women have sought treatment for menopause for thousands of years.
Classical physician Aristotle wrote about menopause in the 4th century BC.
Soranus was a Greek gynaecologist in the 1st/2nd centuries AD who wrote about menopause.
Does HRT make menopause unnatural?
One whisper of hormone replacement therapy (HRT) and women are vilified for taking it while the most ridiculous misinformation goes flying.
Should every woman take HRT? OF COURSE NOT!!
No woman wakes up one day and says, “F-ck natural! Give me expensive medications, multiple doctor appointments, and the uninformed judgment of strangers!”
Initially when some form of HRT would be suggested I’d say, “Oh no. I believe in natural.”
After talking with numerous menopause experts and physicians and reading materials from British Menopause Society, North American Menopause Society and the International Menopause Society (all FANTASTIC resources), I was misinformed about hormone therapy.
Prenatal care—medicalization—doesn’t make pregnancy unnatural or a disease. Smear tests don’t make womanhood unnatural or a disease. Prostate exams don’t make manhood unnatural or a disease.
Treatment of any kind, hormone therapy or other, doesn’t render perimenopause or menopause any less natural, either.
Quite the opposite, in fact.
Medicalizing perimenopause and menopause VALIDATES the significance of this stage, and gives CREDIBILITY to those of us who’ve struggled to have our symptoms taken seriously for years.
One friend of mine suffered multiple daily hot flashes so strong she vomited, all while she held down a senior management job for a nonprofit, raised two children and took care of a husband with a serious chronic illness.
She felt such shame and embarrassment about these hot flashes she told no one about them for six months.
Medicalizing perimenopause takes away this shame and brings the conversation into the open, as well as providing help for millions of women.
My friend deserved better.
All of us and the next generation deserve better.
Not all women suffer such debilitating symptoms, and medicalizing perimenopause and menopause means a well-rounded conversation about hormones can be normalized throughout our lives, starting when we’re young.
Medicalizing menopause means my primary care physician would have started talking to me about perimenopause at my checkups in my 30s, or even earlier.
What a difference that would have made!
Where We Are Now
My migraines came and went for two years, then disappeared for a decade, only to reappear for a few months and then disappear again.
Now I know migraines are related to changes in estrogen levels, and it is not uncommon for a woman to first experience one in perimenopause.
Others may find their migraines subside during perimenopause or pregnancy.
mySysters is an attempt to level the playing field around perimenopause and menopause, to provide information and tools anyone who needs them.
A heartfelt THANK YOU to our mySysters community.
I read every one of your messages and forum posts and I’m thankful we’ve been able to help so many find support and encouragement.
To those who blame mySysters for ‘medicalizing’ menopause, take a moment and educate yourself on other healthcare systems and others’ experiences.
You ‘breezed through’ menopause?
That’s great! Really, I’m happy for you and I want others to know that menopause isn’t all doom and gloom. But rather than trivialize the experience of others, learn from it so you’re prepared when someone close to you needs help.
Or better yet, advocate for improved healthcare for everyone.
Whatever we may experience during perimenopause, the key to good health is education and support.
Women sharing information and providing encouragement–that’s natural.
mySysters is an app for women in perimenopause and menopause. Good Housekeeping and Woman’s Day named mySysters the Best App for Women in Perimenopause and a Must Have App for Women.
The preceding information does not constitute medical advice or treatment.