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She has been in and out of hospital more than 20 times in the past year from debilitating pain in her abdomen.

It took visits to more than 10 specialist doctors before Liu Yanjiao could confirm that she has endometriosis, a painful disorder where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

Yanjiao is just 20 years old.

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The university student and part-time Chinese tutor has suffered monthly — sometimes daily — pain for years but she was only diagnosed with endometriosis last year.

She tells The Pride: “I have been suffering very bad period cramps since my first menses. It got worse over the years. Initially, I just needed to rest during PE (physical education), then it progressed to severe pain where I couldn’t move and had to be on bed rest.”

She adds: “I can’t do my normal activities and can end up vomiting and fainting from the pain.”

A long road to diagnosis

She had suspected quite early that she had endometriosis when she googled her symptoms, but when she suggested it to the doctors, many said she was too young to have the condition.

Yanjiao says she first went to a gynae in 2018 who thought it was just normal period cramps and prescribed her birth control pills to manage the pain.

“After that I went to more doctors but the response I got from them is that I’m too young for endometriosis. Many of them dismissed my pain and questioned if I was too stressed or whether it’s all in my head,” she says.

According to the NHS, endometriosis can affect women of any age and experts estimate that at least one in every 10 women live with endometriosis.

Unfortunately, the best way of confirming the condition is through surgery.

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In May 2020, Yanjiao visited another doctor who suspected her of having endometriosis and started her on a hormonal pill.

The medication worked at first, but the pain came back.

“After I didn’t respond to the medication, he didn’t treat my symptoms seriously after a while. So I went to search for more doctors.”

Yanjiao went to an endometriosis specialist next, who started her on multiple hormonal treatments, such as an injection to induce chemical menopause and a hormonal implant to control tissue growth but unfortunately they did not work.

Finally, Yanjiao went to another gynae in Dec 2021 who did surgery on her and confirmed the diagnosis.

“Confirming a diagnosis for endometriosis is not easy as the only way to do so is through surgery, when the tissue is taken out and sent for lab tests. Most doctors will usually treat the pain first instead of doing surgery for a diagnosis,” Yanjiao explains.

It’s been three months since surgery and Yanjiao says that some of the tissue has grown back.

“It’s not good news but it’s not something within my control,” she admits.

As of now, Yanjiao says that the pain is more manageable, but on some days it’s so bad that she has to be admitted to hospital.

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A different education pathway

At least now Yanjiao has a confirmed diagnosis to work with.

In 2018, when she was in Secondary 4, before she went for any treatment because she had no diagnosis, Yanjiao quit school because of the daily excruciating pain she had to deal with. That was even before she took her O level examinations. 

However, the determined teen continued her studies by pursuing a private diploma in Chinese, her only O level certificate at that time (she sat her O level Chinese exams in Secondary 3 since she took Higher Chinese).

She also found a job as a part-time Chinese tutor at a tuition centre.

Although Yanjiao had to take medical leave frequently because of the pain, she persevered.

She says: “I need to function with the pain. If I were to listen to my body all the time, I would just lie in bed every day and I wouldn’t be able to do anything.”

After graduating with her diploma in Chinese in 2020, Yanjiao did another private diploma in psychology and graduated in 2021.

She is now studying psychology and criminology at Murdoch University while continuing as a part-time Chinese tutor.

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Yanjiao says: “I aspire to become a clinical psychologist. Having gone through this chronic illness myself, I understand how emotionally and physically draining it can be. So I hope to help people with chronic illnesses cope with their illness mentally.”

Challenges of living with a chronic illness

The challenges of suffering from endometriosis as a young woman are not only physical but emotional and social as well.

Yanjiao shares that it was so difficult seeing her friends lead normal lives while she was struggling in pain that she deleted her Instagram account and went off social media.

She says: “I felt very out of place. Everyone was moving on while I was stuck. I lost a lot of friends because I quit school… My family was my biggest support during this period.”

However, it was wanting to help others and raise awareness of her condition that motivated her to go back on social media and document her endometriosis journey on TikTok.

Yanjiao says: “Endometriosis takes a very long time to be diagnosed. Women in their teens or twenties suffer for many years before they are officially diagnosed. I feel there should be more awareness of this condition, whether in the medical community or the general public.”

The condition is often misunderstood and people who have it often have to deal with the stigma.

Yanjiao says: “When I tell people about my condition, they think, ‘It’s period cramps. Everyone has it. Why must you exaggerate so much?’ I think society tends to trivialise women’s pain.”

A common misconception is that endometriosis is just bad period cramps, when, in reality, it is a highly inflammatory, full-body disease. The symptoms range from abdominal pain and heavy bleeding, to brain fog and fatigue, and even chest pain and shortness of breath.

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Raising awareness on TikTok

In response to Yanjiao’s posts, many people on TikTok and Instagram have reached out to her.

She says: “They will encourage me. Some will ask for recommendations for doctors. Some will share with me their struggles. They motivated me to keep going and not give up.”

“I feel good helping them too because that’s my purpose for starting TikTok,” Yanjiao says. “At the end of the day, if I can help one person who is in pain it’s going to be worth it.”

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She hopes that more people will know about endometriosis and be able to empathise with people with chronic illnesses so that there will be more understanding and help available.

For example, she says, schools could offer more support for students and workplaces could offer schemes to make it easier for people who suffer from chronic illnesses.

Yanjiao says: “Endometriosis is invisible. Sometimes when I need to take MC, it may cause inconvenience to others, but please don’t be rude or say anything to trivialise my experience.”

“Always be kind, because you don’t know what others are going through.”

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Top Image: Liu Yanjiao