I spoke to a woman I’ll call “Lily” for about 12 minutes one afternoon in October.
It was all the time she had. The 35-year-old mother of two is a public health official who works long hours at a women's health clinic in central Missouri and had to cram in a call with me over her lunch break. She still picked up on the second ring — voice muffled, a little, by the sounds of a busy doctor’s office. Some hurried footsteps, the swishing of scrubs, a phone ringing politely in the background.
Lily’s area of Missouri is a patch of rural land that, like many others around the country, has very few available resources and providers for reproductive health care. The last abortion clinic in the state, Planned Parenthood of the St. Louis Region, is fighting tooth and nail to stay open. State budget cuts and legislative restrictions have made family planning, sexual wellness, and maternity care almost as scarce. Many of the patients who visit Lily’s clinic have to drive hours just to see an OB-GYN. Those in the Southeast corner of the state, nicknamed the Missouri “Bootheel,” live miles from a single birthing hospital.
“Women don’t have access to the care they need,” she said.
Lily doesn’t get a lot of free time. Still, some nights, after she throws her scrubs in the laundry and puts her kids to bed, she logs onto Reddit — username “Love4Mizzou”— and carries on helping strangers navigate the infuriatingly complex world of gynecological health care.
She’s the moderator of r/obgyn, a buzzing home for redditors seeking guidance about their bodies and health concerns at a moment when funding blocks have led to staggeringly few sexual wellness resources, and anti-abortion legislation in many states swings from ultra-strict to medically impossible (like a recent Ohio bill requiring doctors to “reimplant” ectopic pregnancies, a procedure that can’t actually be done).
The internet is a logical landing place for questions about our bodies (Who hasn’t manically consulted WebMD in the dead of night?). But not all answers are created equal.
There are all sorts of subreddits dedicated to navigating this space — r/Healthyhooha, r/WomensHealth — and they’re flooded with all sorts of people, most of them women: Young women feeling their first period cramps; middle-aged women going through menopause. Women who are experiencing pelvic pain, or some other foreign sensation, and don’t know what the threshold for “normal” is. Women with questions about contraception, and STDs. Women who are grieving a miscarriage. Women who are trying to conceive. Women who want to know what a breast lump feels like. Women who are up at 2 a.m. because they’re too scared to sleep and know that, if their worst suspicions are true, they won’t be able to afford treatment.
The internet is a logical landing place for questions about our bodies (Who hasn’t manically consulted WebMD in the dead of night?). But not all answers are created equal, and that can create a complicated dynamic in online spaces like Reddit. It’s easy to get caught up online, especially when you don’t feel heard in real life. Just look at the increasing numbers of anti-vax parents — a trend researchers have linked in part to mistrust in medical institutions and the growing spread of disinformation on internet forums and social media.
There are inklings of this on reproductive health subreddits, where easily discredited rumors sometimes appear; those range from largely innocuous facepalms (i.e., “you can get chlamydia from a toilet seat”) to some that might post a legitimate health risk — like fatalistic hot takes on the inefficacy of various medical procedures, which could discourage some people from getting treatment they need.
That’s one reason Redditors like Lily — doctors, nurses, and others in the medical community — have formed a sort of online vigilante group to dish out informed advice (due to privacy concerns, and the personal safety issues that come with aligning yourself with reproductive rights, some of the people cited in this story chose to remain anonymous). These makeshift virtual clinics are no substitute for a real doctor’s visit (often the advice is “go see a gynecologist”). But for the medical professionals who staff them, and the scared, vulnerable people who need reliable answers, they're a lifeline.
Rebekah Bliss made her first Reddit post shortly before Christmas. She’d just gotten out of surgery the day before. After months of pelvic pain, frequent urination, and the wildly unpleasant suspicion that her “entire uterus and everything below it was on fire,” an OB-GYN diagnosed Bliss with an ovarian cyst and scheduled an outpatient procedure to remove it.
Afterward, Bliss learned this was a misdiagnosis. It wasn’t a cyst, but an issue with her fallopian tubes — scar tissue from an appendix removal 20 years ago had blocked one tube, apparently, and it had swollen so severely that the surgeon had to remove it.
Bliss’s boyfriend told her all this as she came out of anesthesia — the doctor, she said, didn’t stick around to explain what any of it meant. So then, lying in bed, hopped up on painkillers and wondering WTF was happening to her body, she went on Reddit. What Bliss found was a bunch of people who were just as confused and scared as she was. “A lot of them were women like me, who’d been having symptoms for months, or years, and still couldn't find answers,” she said. “It was comforting.” So she joined in.
“This shit storm started in August 2019 ...” she wrote in a post on r/WomensHealth, and described everything that led up to her surgery. “I’ve never heard of such a thing so I would like to hear if anyone has had any similar situations.” As it turned out, many had, and some weighed in to express their sympathy. “It sounds just like what I get,” one commenter wrote; another, username “mediwitch,” told Bliss what to expect during recovery.
Bliss’s experience is not uncommon. The truth is many doctors still know much less than they should about how the female body works, and modern medicine has a pretty awful track record for trusting patients, specifically women, to know about their own. Research shows that women wait longer in emergency rooms and are less likely to be given effective painkillers than men. The US also has one of the highest maternal mortality rates among developed countries, despite having the largest GDP in the world. Racial disparities are even more jarring: Black women are three to four times more likely than white women to die from a pregnancy complication.
Anti-abortion discourse muddies things even further. In recent years, watchdog groups have reported cases of Catholic hospitals denying female patients everything from birth control to life-saving procedures. One woman who visited a Michigan hospital with a severe infection was allegedly given Tylenol and sent home to miscarry by herself on a toilet. Another woman with an infected uterus was released from a Washington state ER three times, even after passing a blood clot “the size of a jawbreaker,” while medical staff hid the option of terminating her life-threatening pregnancy.
“There’s still a lot of sexism in medicine,” said “Eric,” a 27-year-old medical resident in Memphis who frequents subreddits like r/obgyn — username “NapkinZhangy” — to give blunt, no-nonsense advice about irregular bleeding, pregnancy hormones, and other concerns that mirror what he sees in practice every day. “Some physicians, especially older physicians, just don’t take women seriously.”
"It might take me a few minutes to answer, but it could save them hours of anxiety.”
Eric has seen this play out firsthand. A male patient will come into Eric’s emergency room with back pain, for instance, and a doctor will run a slew of diagnostic tests to find the cause — hernia, kidney stones, etc. But when a woman has the same symptoms, she’s told something along the lines of “it’s probably just cramps” and is quickly sent home. That bothers him.
Eric spoke to me right after a 24-hour ER shift — lying in bed, waiting for his adrenaline to settle so he could finally knock out. Often, at times like this, Eric logs into Reddit, a site he’s been using for years to chat about med school and Magic: The Gathering. Now he’s finishing up his residency in gynecology and peruses subreddits like r/obgyn to see what questions he can answer.
Like every medical professional quoted in this story, Eric is adamant about not making online diagnoses. But he’s also aware of how frustrating it is for people to suffer from chronic pain and to have a doctor shrug off their symptoms as a normal part of being a woman. So he uses the small amount of downtime he has to try and fix that.
“If someone has a quick question about their health, it might take me a few minutes to answer, but it could save them hours of anxiety,” he said.
Reddit is anonymous, so it’s hard to tell exactly who’s logging on. But the bulk of the posts seem to come from young women who are uncomfortable talking to their doctors or parents about sexual health. Many live in the large swaths of rural America where having a female reproductive system is basically an inherent medical liability. Providers are so scarce that nearly half of US counties don’t have a single board-certified OB-GYN, according to research from the American College of Obstetricians and Gynecologists. For many people living in these areas, making it to a gynecological specialist or abortion doctor means buying a plane ticket and missing several days of work.
These disparities echo on Reddit, where one of the most common themes is questions from people who suspect they have a chronic reproductive health condition, like endometriosis, but have been repeatedly shrugged off by a primary care physician. Some upload photos of X-rays, sonograms, and test results to get the internet’s opinion of what they suspect is a misdiagnosis. Others just want to vent.
Allison Eigenbrod, a 25-year-old in rural Illinois, posted on r/obgyn earlier this year. Eigenbrod said she was diagnosed with HPV last year, underwent cryosurgery to rid her body of any precancerous cells, and was told to come back for a follow-up appointment six months later. But her OB-GYN retired before that time came and never referred her to a new doctor. Eigenbrod lives in a sleepy farm town with fewer than 1,000 residents and couldn’t find an OB-GYN within 50 miles who was taking new patients.
Soon after, Eigenbrod’s period started getting really heavy and painful. Then she started passing blood clots — first the size of a quarter, then a ping-pong ball. She went to the ER twice, she said, but was dismissed immediately, and told to go home and “take some Tylenol and Motrin.”
In January, Eigenbrod uploaded a photo of one of her blood-soaked pads to Reddit and a short explainer on what she’d been through. Dozens of people responded with consolatory words and recommendations for how to go about finding a new doctor. The free advice she got from both medical professionals like Eric and regular people (many of whom DM’d to share their own experiences) was better than anything Eigenbrod was ever sent a bill for, she told me.
Those doctors “didn’t care to explain things,” Eigenbrod said. “When I would ask questions, they would look at me like I was stupid. So I got on Reddit.”
Like anyone with a lingering health problem, those who visit pages like r/obgyn exist in a limbo of doctor-prescribed trial and error. The internet can’t solve their problems, but it can help them tolerate and navigate the unknown in the meantime. And sometimes, there are concrete steps forward. Eigenbrod recently found an OB-GYN about an hour away who’s taking new patients. At the time of this writing, she was scheduled for her first appointment.
Rebekah Bliss has also made some progress. Now fully recovered from surgery, she finally got to talk to her doctor (on the phone, while he was at a restaurant) and was preparing a list of questions to take to a follow-up appointment when I spoke to her. Some of those questions — Is there any chance that she has pelvic inflammatory disease? Did losing a fallopian tube affect her ability to conceive? — came straight from suggestions she got on Reddit.
“Being misdiagnosed kind of makes you question everything,” Bliss said.
There are plenty of medical subreddits not limited to women’s health or reproductive health. Some, like r/AskDocs and r/DiagnoseMe, skew toward the bizarre (“I somehow got a hair tourniquet inside my anus and I desperately need advice”) and sensational (“I swear to god I hear [sic] radio stations faintly in my ears every night for the last 15 years.”). And some, like r/STD, are self-explanatory.
Spaces on Reddit dedicated to women’s health tend to be more earnest. The questions are personal, but they’re not uncommon. And while some come from throwaway accounts, many users stick around for months or longer to post updates on their progress, and to lift up others who are struggling.
Natalie Vargas, a 23-year-old student who lives in Chicago, created an account last summer to get some advice on a yeast infection from hell. She’d been to multiple doctors, and through multiple rounds of prescription drugs, but the nasty motherfucker wouldn’t quit. Vargas doesn’t have health insurance, and she’d already run up a bill of about $700 from doctor visits, medication, and lab fees. She was panicking.
“I was terrified,” she said. “I was taking summer classes, and some days I couldn’t even sit through class, so my grades dropped. Some nights I’d go to sleep crying. I felt like I was in a nightmare or something.”
On Reddit, Vargas connected with people who’d been through the exact same rigmarole. She chatted with a few, privately messaged a few more, and tried some homeopathic remedies they recommended, like probiotic pills and boric acid suppositories. And they worked, she said.
Now, Vargas posts on r/Healthyhooha frequently, mostly to make regular people like herself “feel less helpless” about what’s going on in their own bodies, she told me. Like a lot of redditors who’ve had a doctor throw up his hands at their gynecological problems, she’s become an amateur expert on How to Deal (Vargas, it’s worth noting, is going to school for nursing, so she’s more informed than most).
R/obgyn is a noninvasive, nonjudgmental means of getting your questions answered — no matter how old you are, how many times you’ve had sex, or how conservative your state, town, or family is.
“I am so glad I found this community where I could express not only what I was going through but how I was feeling emotionally,” she wrote in a recent post. “These ladies got me through some rough nights.”
Vargas and her peers play an important but complicated role in Reddit’s health-advice spaces. On one hand, their crowdsourced medical advice and positive affirmations make these forums powerful places to be for those without real-life advocates. Compared to the discomfort inherent in your typical OB-GYN trip, r/obgyn is a noninvasive, nonjudgmental means of getting your questions answered — no matter how old you are, how many times you’ve had sex, or how conservative your state, town, or family is. On the other hand: This is still the internet. Reddit is self-policing, after all, and crowdsourced advice isn’t infallible.
“It’s all very anecdotal,” said Tania Aftandilians, a 33-year-old California-based OB-GYN. (She goes by “DolmaSmuggler” on Reddit, a college nickname that comes from a time she got pulled out of an airport security line and put through an extra TSA search for bringing “an awkward amount” of stuffed grape leaves onto a flight.) “I see a lot of people saying, ‘Don’t have that surgery — my aunt had all these complications,’ on surgeries with complication rates of like 1%. There’s a lot of misinformation online.”
Aftandilians works in a low-income Los Angeles suburb, where the hours are long, the commute is brutal, and the turnover among colleagues is high. Gynecological resources are few and far between, she said, and financial pressures force patients to put off checkups, pap smears, and cancer screenings. Tragically, some of the people she treats for life-threatening conditions like cervical cancer — which has a high survival rate when caught early — don’t know they’re sick until it’s too late to do anything about it.
Having medical laypeople constantly chiming in on forums like r/obgyn means professionals like Aftandilians have to do a lot of the grunt work — breaking the news that a user-uploaded photo “looks like genital warts” or calming down a stranger who’s worried about an abnormal pap smear.
But she doesn’t mind. She’s seen the huge gaps left by the lack of public funding for health education and services; she knows what happens when patients don’t have access to any advice at all. So have “Lily,” “Eric,” and the rest of OB-GYN Reddit. So whenever Aftandilians gets some (scant, precious) free time, she throws her scrubs in the laundry, gets online, and carries on doing the work. ●