Rekubit Exchange:Doctors left her in the dark about what to expect. Online, other women stepped in.

Sitting alone in an examination room,Rekubit Exchange dressed only in a hospital gown, Kerry Schwartz awaited a gynecological biopsy to have a fibroid removed. She had not been briefed on what to expect for the procedure beyond a short email — there was no phone call or paperwork. When the nurse practitioner entered the room, his first question was, “Have you taken any pain medication?"

She said no, and he warned her: “It’s going to be a little uncomfortable.”

During the procedure, her body went into shock. “I kept telling them, ‘Oh my God, I’m in so much pain. I can’t do this,’” she says. “They would go ahead and say, ‘Just breathe. We’re almost done.’”

But then, she fainted from the pain. She remembers waking up and looking up at the nurse with “complete desperation."

“She blatantly ignored me and said, ‘We need to take another biopsy, so let us know when we can go in again.’”

Like many other women she's since encountered, Schwartz posted online to share her traumatic experience, asking why women’s pain has been normalized in gynecological procedures to the extent that no anesthetic or laughing gas is offered for relief.

Her video went viral, receiving over 17,500 comments from people commiserating. “They NEVER warn you and they behave like it’s no big deal. But it is one of the most traumatic experiences!!!” one user wrote. Another user wrote that the video prompted them to reach out to their doctor ahead of their own biopsy: “I need details & options because my anxiety is crippling on this now. There's no way I'll be able to go in there for this.”

Now, Schwartz plans to "turn that pain into purpose" and use her platform to encourage self-advocacy and better outcomes for women's pain.

And while these makeshift support groups have been popping up more and more in comment sections across TikTok, users on social platforms like Reddit have already developed intricate communities surrounding specific health issues.

Dr. Franziska Haydanek, an OBGYN and online health educator, says these communities and the experiences shared are important to patients, but shouldn’t replace medical care. Yet, some people feel as though these subreddits are their only lifelines. 

How do people find ‘health communities’ on Reddit? 

Five years ago, Haylee Read, a member of the r/Endo subreddit, had recently finished Sally Rooney’s novel “Conversations With Friends” when she noticed a character’s endometriosis symptoms aligned with her own ongoing health issues. She began googling the condition, and came across the Reddit community, which currently has 71,000 members.  

She had been seeing doctors for her pain since she was 17, but was always told that it was normal for some women to have heavier or more painful periods than others. Finally, she was able to assess if her symptoms were truly “normal,” or if they were “normal only for women who have endometriosis.” 

Within the group, she learned about keeping a pain diary and what specific questions to ask her general practitioner about endometriosis. After following these tips, she was referred to a specialist urgently, who booked her for surgery within two weeks. 

“It was definitely the information I got from the community that made the difference for me,” she says. “Because I had the language to explain what was going on. And I hadn't had that before.”

But while she joined the group to gather information, it quickly progressed into a source of valued support. 

Likewise, Rachel Franklin, 28, found the r/PMDD (premenstrual dysphoric disorder) community while searching for a diagnosis amid ongoing health issues. For her, the group allows her to talk to other people living with PMDD, as she only knows one person in her personal life who has it. 

She calls the subreddit her “main support,” and says it has helped her navigate relationship stress and be a better advocate for herself in doctor’s appointments. She and other members will exchange comments on each other's posts about their shared experiences of medical gaslighting, relationship issues and other mental health struggles.

Will new IUD guidelines offer relief?These women went to the doctor for birth control and left in agonizing pain.

'Anonymity is what helps you be so specific'

On social media, users are able to select unique, unidentifiable usernames and conceal their identity. Roxy Young, the Chief Marketing and Consumer Experience Office at Reddit, says this is one of the most important aspects of the site because it "truly allows for an authentic, vulnerable and human experience."

She personally uses these health communities and shares information about herself that she would never post to Facebook or LinkedIn.

For Read, the anonymity is "what helps you be so specific" without fear of judgment: "There's absolutely nothing that is not discussed in the channel, but there's things that you wouldn't talk about with your name attached to them that someone could Google."

Posting anonymously can help ease the fear of "being too much or saying too much," Read says.

Misinformation quickly gets shut down

Many women come to these health communities after feeling neglected by doctors, or searching for diagnoses that they feel doctors have missed. Some of the rules establish that these groups are for empathetic interactions and sharing helpful information, but not for personalized medical care.

"It's not about giving each other medical advice, it's about commiserating with what we're all going through," Read says.

Oftentimes, members will be referred to the r/AskDocs channel, where verified doctors can answer specific questions. Reddit also uses a positive and negative voting system.

"If something is not credible or accurate, it will quickly get down-voted," Young says. "That down vote is a key signal for us and for moderators that the content needs to be looked at and potentially removed."

'Take this information back to your own doctor'

The misinformation rule extends into self-diagnosing.

Prevailing opinions that all doctors are dismissive "can be pervasive in those communities, to the detriment of some people not being able to hear the advice from doctors because they're going in on the defensive," Read says.

While social media can help give insight into your own health, Haydanek says new information needs to be taken back to your own doctor: "You say, ‘Hey, I learned about this condition. I feel it might apply to me. Can we talk about if I meet the diagnosis criteria?’"

"Information is critical, but talking can only get you so far," Read says. "There has to be action to improve your situation."