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‘Endometriosis almost killed me – but it still took years to be diagnosed’

KANIKA SINGH RATHORE, 11/10/202511/10/2025

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Zaina Ahmed was scared at the age of just 12 she bled a lot during her period That she was in a life-threatening condition and required immediate blood transfusion.

doctors And the nurses ran here and there She was using terms like pill and hemoglobin levels – all things that, as a child, she couldn’t understand.

One doctor even joked, “Imagine you’ve been shot in the leg and you’re bleeding” to explain how severe his blood loss was.

“The doctor … basically said if you didn’t come within that week, it would have a catastrophic impact on my life,” said Ms Ahmed, now 19. Independent.

Years later, in 2023, he is finally diagnosed endometriosiswhich affects millions of people women In Britain.

This condition occurs when cells similar to the cells that line the uterus appear in other parts of the body. Symptoms may include pelvic pain, painful menstruation, heavy menstrual bleeding, pain when going to the toilet or having sex, and fatigue.

Figures from the charity Endometriosis UK show that it takes an average of eight years to get a diagnosis.

Ms Ahmed with her parents in front of Wellington College, where she attended sixth form

Ms Ahmed with her parents in front of Wellington College, where she attended sixth form ,NIHR,

Just nine months before her first A&E admission, and again at the age of 11, when Ms Ahmed experienced severe bleeding, heart palpitations and hair loss during her first menstrual period, she knew something was not right.

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She said: “In the beginning, I was sure it was just me who didn’t know how to put pads on. I would buy about 18 pads in three days. I would have to keep putting more on the shopping list. My parents said, ‘This is not normal.’

“I couldn’t sleep the whole night. I had to get up at a certain time to change it, otherwise it would leak.”

Following her catastrophic admission at the age of 12, Ms Ahmed’s severe symptoms resurfaced when she was in Grade 11 at school.

She suffered periods so painful and frequent that they would leave her crying in her teacher’s office, and she was forced to miss school weekly.

This picture shows how endometriosis can cause cysts

This picture shows how endometriosis can cause cysts ,getty,

“I was having really intense pain. But it wasn’t just when I was on my period; it still happens all the time.

“I thought menstrual cramps were normal, but that was when I was on my period. So if I was having them all the time, it wasn’t normal. It was hard to understand.”

But things took a turn for the worse when she was admitted to A&E again – on the day she had her GCSE exams.

“Then it got really bad, that summer, and then when I started 12th grade. That’s when the word endometriosis started getting thrown around because it was something my mom had heard about. After all, she had met someone who suffered from it a few years ago,” the teen recalled.

While she had previously been referred to gynecological services, she did not get an appointment, but was eventually referred again after her second A&E visit.

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However, long waiting lists, made worse by delays caused by the Covid pandemic, meant it took four years for her to see a specialist.

“I think a lot of young girls shouldn’t have to go through this on their own because, even if they have supportive parents or teachers or friends around them, there’s not much you can do if you don’t know what they’re dealing with.”

Despite years of pain and bleeding, Ms. Ahmed still didn’t know what was causing her symptoms.

Ms Ahmed was 12 years old when she was first admitted to hospital due to anemia

Ms Ahmed was 12 years old when she was first admitted to hospital due to anemia ,NIHR,

Finally, in 2023, she got the answers she needed after undergoing laparoscopic surgery, where doctors look inside the abdomen and pelvis, revealing that she endometriosisAlso called a condition adenomyosis, which causes cells to grow in the muscular wall of the uterus,

Although doctors sold the surgery as a “golden ticket,” Ms. Ahmed said it didn’t make her symptoms go away, but she was relieved to finally have a name for the pain she was experiencing.

Now studying to be a journalist at City University London, Ms Ahmed has been fitted with a coil, also known as a hormonal intrauterine device (IUD), which helps thin the uterine lining, and follows a special diet and exercise to help manage her symptoms.

She said: “The pain is no longer 24/7. It’s allowed me to do a lot more and be able to stay awake longer, enjoy things more.”

To help others in a similar situation, Ms Ahmed is now taking part in a research project which aims to improve care for young people suffering from menstrual pain.

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She is calling on more young people aged 18 to 24 to get involved by signing up Be part of researchAs part of a national recruitment drive from the National Institute for Health and Care Research (NIHR).

“It was really important for me to speak out and respond,” he said. “I thought about what I wanted to see when I Googled it. We all do it. Think about if someone else was suffering like you – if your story came out, it could be really helpful to them.”

Uk Diagnosedendometriosiskilledyears

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