The long-standing belief that dealing with pain in some form or another is an intrinsic part of having a uterus isn’t holding up anymore.
From experiencing unnecessarily painful procedures, to having their pain and concerns ignored by doctors, to having all their symptoms be blamed on anxiety and weight, to waiting years for a proper diagnosis, people with uteruses are now speaking up online.
On TikTok, videos of teary-eyed patients lying in doctor’s offices and nearly passing out, with a nurse telling them to breathe while claiming they’ll just experience some slight pressure and a brief pinch, have brought awareness to how painful IUD insertion can be. Other videos feature patients telling their stories about the challenge of receiving a diagnosis that accurately explains their chronic pain, like endometriosis or chronic ovarian cysts.
At the heart of each video is someone who is tired of being in pain and having that pain ignored or undermined. Now, they’re encouraging others to advocate for themselves in the doctor’s office.
Amid this rise in collective discourse on reproductive health care disparities, studies have shown that despite knowing gynecological procedures can be excessively painful, government agencies, like the National Institutes of Health, underfund medical research about gynecological problems, including pain during and after IUD insertion.
IUDs
Deciding which form of birth control may be best for you requires weighing a host of different options and their side effects, benefits and risks. If you decide on an IUD, or an intrauterine device, you also may have to consider whether you can handle severe pain.
That was the case for Ashton Prater, a sophomore studying criminology and criminal justice. She walked into her cold and sterile doctor’s office knowing what she was about to do. She’d done the research, spoken to her doctor and decided an IUD was best for her.
In the days before her procedure, she took a pill to prepare her body and help open her cervix. Yet, as she walked into the room where the doctor would perform the procedure, she recalled the terrifying stories she had heard about IUD insertion. Fear and anxiety swept over her.
“I started to cry because I was terrified,” Prater said in an email. “I’d heard all the horror stories of IUD implants and what could happen and how painful it was, and it was even more scary to me because I was a virgin.
“The doctor came in...She seemed annoyed with my emotional state and ignored it, and (she) didn’t offer me any kind words or concern. (She) just started talking about the process.”
The procedure lasts between 5 and 10 minutes. First, the provider places an instrument to stabilize the cervix, then they measure the depth of the uterus, and then they insert the IUD.
It sounds simple, but for some, the experience can be excruciating. A study published in 2019 found 87% of patients who had not given birth reported moderate to severe discomfort and pain during the insertion process.
A doctor on Healthline described the pain during an IUD insertion as three short-lived cramps during the different parts of the procedure. But that can be a gross understatement. In a study, 46% of patients who had not given birth reported reactions ranging from lightheadedness to nausea to passing out.
Severe pain was nothing new for Nicole Mullen, a junior studying journalism. Before getting an IUD, she experienced period cramps and pain that required her to take painkillers and muscle relaxants to function properly.
Medication only did so much. After almost passing out in an airport bathroom, Mullen decided she needed some form of birth control. A hormonal IUD seemed to be the best fit for her.
Having experienced extreme soreness for most of her life, Mullen thought she was prepared for the procedure.
“They (her doctor) said, ‘You’re gonna feel a slight pinch.’ It was not a slight pinch at all. It was very painful and very uncomfortable,” she said. “It was like the aftermath of having been punched in the gut — you just felt sore. And then she goes to actually insert the IUD, and that was shooting pain…I would love to sit here and say that I’m overexaggerating, but honestly, I think I’m underexplaining how bad it was.”
After the procedure, Mullen was kept under observation for 45 minutes. Her heart rate had risen so high that her doctors feared she would pass out.
Despite how painful IUD insertions can be, the most pain relief that doctors will typically recommend is ibuprofen to help with the cramping during and after the appointment.
In a 2017 study, researchers looked into ways to reduce pain during IUD insertions for adolescents and young adults. They found that lidocaine, when injected into the cervix or applied topically before the procedure, significantly decreased patients’ discomfort. However, the researchers concluded offering lidocaine injections for the procedure is impractical, as they claimed the injection itself can be painful.
Endometriosis
The lack of research on gynecologic health becomes especially clear when looking at conditions like endometriosis and PCOS, or polycystic ovary syndrome. These conditions are highly common, with endometriosis affecting at least 1 in 10 people with uteruses between the ages of 15 and 44 nationwide.
Endometriosis is a condition that causes tissue similar to the lining of the uterus to grow outside of it. There are four stages of endometriosis, categorized based on the severity of the lesions on the uterus and how much the tissue has spread. In any stage, the condition can cause severe menstrual pain, chronic pelvic pain, abdominal bloating, nausea, fatigue and infertility.
When Emily Santora was working on her master’s in biology and society, she focused specifically on menstrual education. She wrote about and researched endometriosis for the Embryo Project at ASU, a group of researchers that focuses on educating the public about embryo-related health topics, like reproductive medicine.
During her research, she interviewed several people with endometriosis and discovered they all believed it was normal for their menstrual pain to prevent them from accomplishing simple daily tasks.
“They always thought that this was normal and went however many years thinking this was normal,” Santora said. “And then as soon as it got worse, and they weren’t able to go to work, able to go to school, they finally went to (their) doctor (and) learned that it’s actually not that normal.”
On average, it takes patients in the U.S. 10 years to receive a proper endometriosis diagnosis, according to Yale Medicine. Patients can start having symptoms at any time if they’re of reproductive age.
Several factors are to blame for why it generally takes so long for patients to receive an endometriosis diagnosis, including the condition’s diverse range of symptoms.
During summer 2023, Abigail Riley, a junior studying justice studies, noticed her period was becoming more intense. Eventually, it got to the point where she couldn’t function properly.
“I thought I was getting sick, and then I ended up getting my period,” Riley said. “The best way I can put it is that there was basically a lot of cramping, and I noticed that it was really hard for me to do basic things, like move around and eat.”
Riley’s symptoms aren’t consistent. While she experienced pain that felt like a mix between burning and stabbing during the summer, her symptoms have been minimal since returning to college. However, she plans to talk about her potential endometriosis with her doctor later this year.
Another factor that makes endometriosis difficult to diagnose is that pain related to menstruation and the uterus is often overlooked and normalized. This is partially due to medical professionals’ lack of training in this area, according to Santora.
She said she believes pain for people with uteruses “can be really normalized within healthcare settings.”
“I’ve seen people on TikTok say that they themselves have to take the steps to ask for certain things to make sure that they’re not in so much pain,” Santora said.
Social media advocacy
While Riley said she trusts her doctor will listen and help her find a diagnosis, she also knows how much of a struggle it is to be diagnosed properly.
One of her friends who was diagnosed with endometriosis recently shared their story online.
“When I first learned about it, my friend was posting infographics about it on her story and going into depth about her experience and how long it took for her to be heard about her symptoms and (to) get diagnosed,” Riley said.
Currently, there’s only one definitive way to be diagnosed with endometriosis: Doctors perform a minimally invasive laparoscopic surgery to find endometriosis outside the uterus. Even though Riley is at the beginning of that journey, she said that since she started researching endometriosis, she feels prepared to advocate for herself at the doctor’s office.
Grace McCamy, a sophomore studying finance, decided to get an IUD after a doctor dismissed her symptoms, which she attributed to her birth control pill. Before her IUD insertion, she watched dozens of videos on TikTok about other people’s experiences. She knew what would happen during the procedure, and she learned if she wanted to have a good experience, she’d have to speak up.
“My new doctor was very much ready to answer any questions that I had,” McCamy said. “She was very calming, very willing to answer any questions, and went into a lot of detail into both the non-hormonal and the hormonal (IUDs).
“I told her my previous experience, and I felt like she listened to me, took that into account and explained to me that she thought the non-hormonal one would be the better option. She even showed me the IUD, like, ‘This is what’s going to go inside of you.’”
Before her procedure, McCamy called her doctor to talk about pain management. She knew it would hurt and recognized she had poor pain tolerance, so she wanted to know how to make it more bearable. Her doctor prescribed Xanax for her to take before her appointment, which wouldn’t treat the pain directly but would help calm any anxiety.
“I needed something to calm me down,” she said. “It still hurt — I mean, there’s something going inside of you. But it felt like bad period cramps for about 15 minutes, and after it was over, I felt fine.”
While it was a new experience for McCamy, it was relatively stress-free and minimally painful, thanks to people sharing their IUD stories online. She watched videos depicting good and bad experiences, and from them, she learned what it would take for her doctor to treat her concerns seriously.
Now, she tells her friends and anyone who will listen about her IUD.
“I am so passionate about my IUD. I love it,” McCamy said. “It was so life-changing for me because I was done with birth control and hormonal everything. So if anybody has questions about it or is just thinking about it, I’m always there to tell my experience.”
Edited by Camila Pedrosa, Savannah Dagupion and Madeline Nguyen.
This story is part of The Hot Issue, which was released on Oct. 4, 2023. See the entire publication here.
Reach the reporter at aeagerto@asu.edu and follow @audrey_eagerton on X.
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