I want my doctors to know as much about treating postmenopausal women using HRT as I have learned on my own. Women should not have to become research experts to effectively advocate for an established treatment many could benefit from.
Thankfully, after months and months of back-and-forth, including paying out of pocket for expertise outside my medical plan, I am finally getting essential treatment that will not only improve the overall quality of my life, it may well keep me from having continuing fractures and other disabling effects caused by my body’s inability to produce enough needed estrogen on its own.
Like many women my age, now 65, the benefits of hormone replacement therapy were never extended to me when I was younger and when they would have been optimal. As I approached menopause, a broad study, the Women’s Health Initiative, said HRT was too risky. In recent years, that study was debunked in a major reanalysis. But by this time, I was allegedly too old to benefit anymore. Me and an entire generation of women.
What I’ve found, after months of research, discussions with doctors, and testing HRT on my own, is that this is not true. But one thing is more clear than ever: I have to be a rabid advocate for my own health care, especially as a woman, because of gender bias in health research, and more.
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I have experience with doing research. I have a master’s degree in cyber security operations and worked in that field for more than twenty years. In the last three months, I read books on menopause, spent hours calculating my risk using available risk models, and spoke to five doctors. I was denied HRT three times by my health plan, first because I was too far removed from menopause, again for the same reason, then because they calculated my risks as higher because I had a breast cancer scare that turned out not to be cancer. I have spent $1,000 on outside “menopause” experts and $150 on the drugs they recommended.
I had pursued HRT in perimenopause for mood swings and other symptoms. At 65 I was looking for bone health assistance. With HRT, my joint pain, which had frequently kept me up at night, disappeared. My mood was elevated. My balance improved. And I felt better. I was willing and able to pay for the outside care and prescriptions. I had no idea that the joint pain and balance issues were a symptom of estrogen shortage. If I had, I would have pushed harder when I had requested HRT much earlier.
But then I wondered: what about all those women who cannot afford to pay for this outside help? I doubled down. I read more books, including Unbreakable, which detailed research that showed overwhelming benefits of HRT on brain function, bone support, joint support, hearing, and overall well-being. It also said the risks are hard, if not impossible, to quantify, mostly because of lack of research.
I did more of my own math. Finally, after I received a referral, I met with the oncologist at my health plan to go over my particular risk profile. In front of me, she calculated my lifetime risk of developing breast cancer at 15.7 percent. Being on HRT would push that to 17.27 percent, 10 percent higher.
Two things are critical here: yes, my risk is higher with HRT. But the oncologist’s risk calculation was far below the one my OB/GYN had given me two weeks earlier. With HRT, she had stated that my risk of cancer was four to ten times higher than other women because I had precancerous cells in one of my breasts. However, that risk calculation was based on women as a whole, not my particular situation, which the oncologist dug into. More studies are needed because it is not known what triggers such cells to become cancerous. My OB/GYN was being conservative, which I appreciate, but I’m glad I pursued a deeper dive with the oncologist.
Finally, the oncologist said it was within reason for me to have the HRT I wanted, given the many benefits, and have it paid for by my health plan. She did ask me to confirm that I accepted the risks, which I did. My family is full of women who lived full lives into their 80s and 90s, and I wanted to be one of them.
System failure
My conversation with the oncologist was a win and a huge disappointment. It was a win because I got what I wanted. It was a disappointment because I had to push so hard to get such a full review from a medical system I’ve paid for my whole life.
It was also a disappointment because almost no one brought up the benefits of estrogen to me unless I pushed them on what I’d learned via my own research. Estrogen helps the cardiovascular system, decreases risk of type 2 diabetes, helps cardiac muscle cell and stem survival, reduces risk of unhealthy heart enlargement, protects against hypertension, and more.
This scenario has played out over and over with my medical care. I can see a long list of ways the “system” failed me as a woman who is hellbent on protecting my health. I exercise, stay slim, don’t drink or smoke, and, after my husband had a heart attack, initiated a cook-at-home lifestyle that features healthy choices.
More than a decade ago, I was complaining to my doctors about symptoms that seemed to be related to perimenopause. I had two years of unusually strong mood swings. The only advice my doctors gave me was to get more rest, exercise, and breathe. In hindsight, they gave me nothing I wasn’t already doing. I researched and found Estroven, an herbal remedy, at Trader Joe’s and asked my doctor if it was OK. The doctor OK’d it, but it did not have a noticeable effect. While I was suffering from something I didn’t yet understand, I had a friend about my age who was already on HRT, and she told me it seemed to help her mood swings.
Up next: vaginal dryness. Vaginal estrogen was recommended. Easy peasy. It’s not lost on me that vaginal dryness also affects the sexual pleasure of men.
I first requested a bone density test 15 years ago because I read that women have to be especially vigilant about preventing osteoporosis. I was denied for being too young. It wasn’t until I was 60, and after breaking my wrist falling on a tennis court, that I got this test, which showed osteopenia. My doctor advised me to take more calcium with vitamin D, to lift light weights, and to “be careful!”
Five years ago, I had a bad case of what was diagnosed as sciatica. I was seeing a medical masseuse, a chiropractor, an online physical therapist, and an acupuncturist, and using a machine that produces mild electric current to stimulate the nerves for therapeutic purposes. I asked for X-rays to be sent to my chiropractor. The chiropractor could not see anything on them that would cause the pain I was experiencing. As a long-distance runner and a person who had always exercised regularly, to be reduced to walking less than a mile and swimming for less than twenty minutes at a time was daunting. Later, while researching menopause, I learned that it is not uncommon for joint pain associated with estrogen shortage to be misdiagnosed as sciatica.
Two years ago, I broke my second bone, my hand, from a fall while hiking. And yes, I had followed doctors’ orders to up my calcium, vitamin D, and weight lifting. At this point, I gave up tennis, which I had been enjoying, because I feared falling and breaking more bones. I thought this was just the aging process, and didn’t it suck.
Back to HRT
All the while I felt like I was falling apart, I was working harder than ever to be healthy. I had several friends who suddenly seemed brighter. I asked them, “What are you doing?” They said HRT. They were my age. I called their doctors. I got the new take on that old study that said HRT was too risky.
I asked my health plan for the drugs. They said no. After my health plan wouldn’t pay for them, I went outside of my plan and was prescribed an estradiol transdermal system and progesterone. I also got far better advice on lifting weights: more and heavier to actually build bone. Not, “be careful.”
I’m on HRT now, and loving it, and will do every check I can to monitor my progress or changes to my risk. I feel that it is important to share this story so that other women can see how hard I had to push, and maybe they will too, and why the system needs to change.
Lack of good research
So much of the fear, and confusion, around HRT comes from either no research, bad research, or research that is incomplete. Many are still scared by the Women’s Health Initiative (WHI) study initiated in 1991. The study ran out of money and posted inaccurate results that compelled the medical community to stop prescribing HRT. That’s bad enough, but the scare also stopped the study about hormones. With the reissue of Estrogen Matters by Dr. Avrum Bluming and Dr. Carol Tavris, more of the medical community and patients are becoming better informed.
Sadly, funding for women’s health has long lagged that for men, and it continues to have a negative effect on women’s health. As one analysis of disease funding and gender states, “We find that in nearly three-quarters of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded. Moreover, the disparity between actual funding and that which is commensurate with burden is nearly twice as large for diseases that favor males versus those that favor females.”
If women are to make good choices, in consultation with their health professionals, about their own health, this needs to change
This essay is cited in the KevinMD record on women’s health.
Martha VanOrshoven is a patient advocate.
