No One is Studying our Ladyparts
A shocking report, recently published, found that only 3.7% of clinical trials between 2007 and 2020 were gynecologic.
This is just a short and rage-filled rant alerting you to a recent study about the gaping and shameful knowledge gap in women’s health: “Early Discontinuation, Results Reporting, and Publication of Gynecology Clinical Trials From 2007 to 2020,” which was published in the April, 2022 issue of Obstetrics and Gynecology.
In this report, the authors—all MDs—found that only 3.7% of clinical trials between 2007 and 2020 were gynecologic, and that most of the results of those studies never saw the publishing light of day.
Only 3.7%! For an organ owned by 50% of the human population! And then none of that information made it out of the labs to you and me, let alone to google or to our doctors. I mean, I knew the situation was dire. I wrote a whole book about it. I just did not realize the extent of our ignorance.
Now we do. Here’s the report’s damning and frankly dangerous conclusion:
Gynecology trials comprise only 3.7% of all clinical trials. The paucity of gynecology clinical trials aligns with decades of female underrepresentation in research. When completed, gynecology trials have poor dissemination. Our findings raise concern about bias in the performance, reporting, and publication of gynecology clinical trials.
Gynecology trials comprise less than 4% of all trials, often are discontinued early, and infrequently report results or publish.
Ladies! There’s a reason why no one is diagnosing your endometriosis and adenomyosis. There’s a reason why this platform doesn’t even think adenomyosis is a word or spelled correctly. (Oh my god, stop it with the dotted red lines already! You, too, google docs. Also, trachelectomy is a thing. It means cervix removal. I had one.)
There’s a reason why when I recently googled “new endo documentary” to find the name of the film I’d either heard about or read about, I couldn’t remember where, when, or why, I stumbled upon two of them: Endo What and the Hilary Clinton-produced and TikTok crowd sourced Below the Belt.
There’s a reason why I was incorrectly told to keep my cervix during hysterectomy1, which then meant I had to have another major surgery five years later to yank it out when that cervix got diseased, which then resulted in near death from vaginal cuff dehiscence—the incidence of which we don’t know, because there’s no national registry to report vaginal cuff dehiscence, plus many women die of it before they even get to the hospital, so ¯\_(ツ)_/¯.
There’s a reason why I was publicly and snarkily shamed in the pages of the New York Times for all of the stuff going on down there in my nether parts for being just too “gross” to write about let alone read. Ignorance is bliss, readers of the New York Times! Bleeding vaginas are disgusting! Skip the first chapter with all the gross stuff! You’ve been forewarned!
There’s a reason why I’m getting more information about the importance of vaginal and systemic estrogen; learning more about the signs of genitourinary syndrome of menopause and the difficulty of accessing the drugs we need to stay healthy (due to cost and ignorance); and reading about the problem of the lack of research itself from my activist urology and gynecology pals Dr. Rachel Rubin, Dr.Ashley Winter, and Dr. Jocelyn Fitzgerald on Twitter than I am from my own doctors.
katie @katie51602167
@drrachelrubin @AshleyGWinter @FDAWomen @AmerUrological @acog @MenopauseOrg @FPMRS @ISSWSH @SMSNA_ORG I am 68 Given vaginal estrogen rx by my doc. Try to fill rx at a couple different pharmacies. $378 with Medicare. $425 with secondary regence. $96 with a coupon at the pharmacy. Most patients that could benefit from this rx can’t afford it
Louise Perkins King @louise_p_king
@VeronicaLerner @greenjrnl @magdymiladmdms @ebonycartermd @GreenjrnlEd @AAGLJMIG @GynSurgery @AAGL @jfitzgeraldMD “Our findings raise concern about bias in the performance, reporting, and publication of gynecology clinical trials.” Not just bias. Unethical distribution of research dollars and resources. Thanks again @magdymiladmdms for doing such a great job highlighting these issues.It’s not because our doctors are bad! My family doctor, Dr. Bertie Bregman—who has his own Substack you should definitely follow—is great. He’s saved the lives and soothed the chronic ailments of several members of my family multiple times, and he was ultimately the one who finally diagnosed my adenomyosis when no one else could. (Again with the dotted red line! Stop with the sexist spellcheck. Sheesh.)
It’s just that no one is investing in the studies, conducting the studies, or publishing the studies once they’re completed. We’re not even plugging the names of our ailments into spellcheck. This seems like a minor point, but it’s not. To name a problem is to recognize it as one worthy of research, of the dollars required to conduct that research, and of the necessity for that information to be disseminated among both the general public and the medical professionals who treat us. And until we scream about this shameful and dangerous healthcare discrimination and silence about our ailments, our vaginas will remain woefully unstudied.
Okay, rant over. Now go scream to your doctors to pay attention to your vaginal and uterine ailments, switch doctors if they won’t listen, then donate money to organizations that study the vagina. Here’s the department of obstetrics and gynecology at Johns Hopkins. I’m partial to this hospital because they treated my father’s pancreatic cancer with care and love, but there are plenty of places to donate. Just use your friend google and plug in something like “research gynecology where to donate.”
I was told the cervix played a role in sexual pleasure, so I should keep it in. Was there a study? No, I was told. It is just believed to play a role. It is believed? Who believes this? When did they believe this? Why? Any evidence? (Nope!) Suffice it to say, never trust a passive voice conjecture with no study to back it up. This baloney was debunked a few years after my hysterectomy.
Once again, you are spot-on Deb. As a gynecologist I can tell you how difficult it is to get studies funded for even the most basic questions. Now with a few key female researchers doing the work, we are starting to get solid studies to tell us if HRT can prevent dementia (yes, by as much as 50%) and that hormonal contraception reduces certain cancers (like uterine and ovarian). These are incredibly important facts all women should know. All I can say is: please see a gynecologist for your gyn problems and prevention. She or he has the most up to date information. Yes, there are excellent family doctors too, but a gynecologist is more likely to understand the nuances of the latest research.
It is unfathomable to me (although I don't know why it should be!) that I literally have to get information on GSM from you (and a subsequent visit with Dr. Rubin) because MD's don't know anything about our reproductive health once we are no longer fertile. I just read an excerpt from a new book by Dr. Louann Brizendine, The Upgrade: How the Female Brain Gets Stronger and Better in Midlife and Beyond and she talks about "the cloak of the invisibility of age." It doesn't get more real or succinct!