An estimated 6.5 million people in the United States have endometriosis, a painful condition in which the uterine lining spreads and grows outside of the uterus. But that statistic likely vastly underestimates the prevalence of endometriosis because it’s notoriously difficult to diagnose.

Many of the symptoms ― which range from painful, heavy periods and painful sex to gastrointestinal issues and intense fatigue ― are associated with other reproductive health problems, including ovarian cysts and pelvic inflammatory disease. In addition, the pain associated with endometriosis is often dismissed by doctors as normal period cramps.

The only surefire way to diagnose endometriosis is to get a laparoscopy, a tiny surgical procedure that can identify the size and location of endometriosis. But that’s typically not the first test doctors recommend. Consequently, it can take years of inconclusive tests and misdiagnoses before the condition is properly diagnosed. In fact, endometriosis is so commonly misdiagnosed that the condition has picked up the nickname “the missed disease.”

Below, women diagnosed with endometriosis share what it physically feels like to live with the condition. They hope that their stories will encourage others experiencing symptoms to seek care and advocate for an accurate, timely diagnosis.

Jaime Henson, a nurse practitioner who was diagnosed with endometriosis at age 32, says her symptoms started when she was 14 – 18 years before she got an official diagnosis.

As a teenager, she had extremely painful and irregular periods. At one point, her period lasted over a month. “I did not want to go out and do things because of the pain and nausea,” Henson says.

Blaine Mallory, a woman diagnosed with endometriosis, said she lost a ton of blood over the course of seven to eight days when she had her period. While menstruating, she experienced extreme cramping and dizziness.

“It was an iron deficiency brought on by my period,” Mallory said. Like Henson, Mallory’s period pain intensified over the years and became localised to her left ovary, which she later learned was covered in endometriosis.

People are often told that period pain is a normal part of menstruation, which causes many who experience intense or severe pelvic pain to believe that it’s just part of having a uterus. While it’s common to have some mild discomfort during menstruation, severe pain that impacts your quality of life or ability to function is not normal.

“I did not know any different and how it was ‘abnormal,’” Henson says.

Eventually, Henson’s pain increased and remained a problem throughout the month, not only while she had her period.

“I had extreme pelvic pain to the point where I could not stand up straight and would have to walk hunched over,” Henson says.

Kylie Meyer, a 33-year-old who recently had a hysterectomy to treat her stage 4 endometriosis, said her pain also initially flared up during her period, but got worse and occurred when she was ovulating, too. The pain, which she describes as crampy, was typically localised to one side of her body, rotating between the left ovary and the right ovary each month.

“There’d be times I would be shopping and would have to put my hand, essentially, into my pelvis to try to put pressure on the pain just to get through the store,” Meyer says.

Henson says she sporadically noticed there was blood in her urine and often felt like she had a urinary tract infection ― but when she got tested for a UTI, the test results were normal. Additionally, she developed deep rectal pain. Despite undergoing multiple tests, her gastrointestinal specialist couldn’t identify the root of the problem.

Meyer also developed gastrointestinal issues. “I started getting bloating to the point that my stomach was distended,” she says. The bloating became so severe that her skin ached from being so stretched out.

Sheila Petersen, a woman diagnosed with endometriosis at age 34, began trying to get pregnant at 30. After multiple unsuccessful attempts, she was diagnosed with “unexplained infertility.”

She underwent multiple rounds of intrauterine insemination and in vitro fertilization, but still did not get pregnant. When she was finally diagnosed with endometriosis, she understood what had been preventing her from conceiving. Estimates suggest that around 47% of women experiencing infertility have endometriosis.

“I can’t help but wonder if it was caught when I was younger if our fertility journey would have been easier,” Petersen says.

One of the more debilitating symptoms Meyer deals with is fatigue that limits her ability to go out and live her life. Because endometriosis is an inflammatory disease, the body is constantly working to fight off the inflammation. Meyer learned that she has to carve out a few days each month to rest, otherwise her body will get too run down.

“It is exhausting. I can’t do things that I used to be able to do,” she says.

Meyer hopes that by sharing her symptoms, she can prevent others from going down a similar path.

“If I had gotten diagnosed earlier, it probably wouldn’t have gotten to severe stage 4 with frozen pelvis – and who knows if my uterus could have been saved if had I been diagnosed earlier,” Meyer says.

Like “tightening barbed wire” or “a womb full of nails and daggers” – these are just two ways women describe the debilitating pain of endometriosis, in a new “pain dictionary” that aims to reduce diagnosis times for the condition.

One in 10 women are thought to experience endometriosis – which equates to 176 million women globally – yet astonishingly, it still takes an average of seven and a half years to be diagnosed.

Endometriosis occurs when tissue similar to the lining of the womb grows outside the womb. This tissue bleeds monthly, but there’s nowhere for this blood to go.

It can cause excruciating pain, like “organs wrapped in slowly-tightening barbed wire, followed by sudden intense tightening pain which can be so intense it’s almost difficult to breathe”, says Emma Sutt, one of the illustrators involved in the project, who has endo herself.

Many women experience delays in diagnosis and treatment due to perceptions that even severe period pain is ‘normal’. Over half (51%) of women and men (52%) think period pain is something women should endure, according to research by Bodyform.

It means many endometriosis sufferers are shamed into silence, while medical professionals underestimate the impacts of living with the condition.

In reality, endo can destroy women’s confidence, sex lives, careers and mental health. In one study of 7,000 women across 52 countries, over 40% had given up or lost their job because of endometriosis.

The pain dictionary is now available as an e-book and in hard copy for GPs who want to gain a better understanding of the condition. It’s hoped it will also give women “new language” to describe their pain.

Currently, healthcare professionals tend to ask patients to describe their pain on a scale of one to 10, but the experience of pain is often highly individual – and often can’t be reduced to a number.

The dictionary is part of #PainStories, a campaign by Essity, the creator of Libresse and Bodyform, designed to tackle the gender pain gap.

“A lot of women think painful periods is normal but actually, it’s not, particularly when the periods are starting to affect activities in your daily life,” says Dr Shireen Emadossadaty, a GP and women’s health specialist who has worked on the campaign.

“Opening up the conversation around period pain will encourage women to see their GP, to be persistent about their symptoms and hopefully we can bring down that diagnosis time. You’re not alone, period pain is common but it’s not normal and it’s not something you should be suffering with.”

People with endometriosis were asked to describe their pain, and their testimonials were then turned into striking illustrations.

These illustrations appear in the book, as well as a new digital ‘Pain Museum’, an exhibition offering more information about endometriosis.

Here are just some of the artworks, coupled with quotes about how it really feels to live with endometriosis.

“The pain burns, stings and aches sometimes all at once. I feel it build up in my lower body like fire, and hot knives pushing from the inside out. The pain travels from my uterus across my stomach and around my sides, down through my legs and up my back until it starts all over again from the source. I feel sick and exhausted from the pain overriding every part of me.”

“It’s a fun-sponge roulette of misery. Cramps that stop me moving, yo-yoing emotions, gut-wrenching nausea, being sick, wanting to eat nothing and then everything, back pain, breast pain, alarmingly painful constipation, diarrhoea so bad you can’t leave the house, headaches, migraines, worsening depression, fatigue, anxiety, stress and a whole heap more.”

“Hundreds of nails piercing my uterus, my whole pelvis in agony. The pain radiates down my legs, and through my whole body. From one second to the next, I can’t stand up.”

“Like torture. Like somebody is gripping, squeezing, cutting, prodding, stabbing you inside, and won’t let go. The waves of pain last for so long you can only take some painkillers, curl into a ball, and cry yourself to sleep.”

“It’s like someone’s wringing my organs. And unbelievable tugging.”