Endometriosis: ‘I feel like my uterus is on fire’

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Severe menstrual cramps, pain during intercourse, intestinal and urinary pain and bleeding during menstruation and even infertility. These are some of the symptoms of endometriosis, a condition that affects one in 10 women.

Recently, singer Anitta reported on social media that she suffers from endometriosis. The artist said she has been in pain for nine years and said she will undergo surgery after being diagnosed with the disease.

She did not specify the date, but said the procedure is already scheduled and had “to cancel a lot” on her schedule, as, after the surgery, “you can’t put in much effort for a month”.

On average, it takes women eight years to receive a diagnosis. A number that, according to the NGO Endometriosis UK, which offers support to those with endometriosis, has not changed in a decade.

There is no known cause or cure for the condition.

But what is it really like to live with this condition?

Two women share their story with the BBC on Endometriosis Awareness Month below.


What is endometriosis?

– This is when tissue similar to the lining of the uterus grows in other parts of the body – usually around the reproductive organs, intestines and bladder.

– Like the lining of the uterus, tissue builds up each month and then bleeds;

– However, unlike a period, there is no way for blood to come out;

– Accumulation of trapped blood can result in internal injuries and scar tissue;

– Some women have no symptoms, but for many others the pain can be debilitating and the condition can lead to infertility.

– Currently, there is no known cause or cure.


Megan Morgan, who lives in Bristol, western England, was diagnosed with the condition in 2021 after experiencing pain outside of her period, something she had never experienced before.

She says she had such a bad attack one night that she woke up with crippling pain in her uterus and ovaries. That day, she thought she was having a hemorrhage.

The 26-year-old says she saw an older doctor, who made her feel like she was “going crazy” after trying to say the symptoms Megan was experiencing were “normal”.

“I just cried in front of her and then she said, ‘look, I think we can do some tests if you insist,'” he recalls.

“I started to think that maybe she was right, that maybe this was normal and maybe I should be in so much pain,” he adds.

It was after the tests that she was diagnosed with endometriosis.

Stoma and infertility

Megan, who also suffers from ulcerative colitis, a long-term condition that causes inflammation of the colon and rectum, said one of the hardest parts of the diagnosis was seeing her health deteriorate and learning to accept a new reality.

“When I was diagnosed with ulcerative colitis, I felt very alone. I was 20 years old and the sickest person I knew.”

“I’ve known people who have been grieving at my age, but they haven’t had the pain of losing their health.”

Megan says that when she was diagnosed with endometriosis, she knew what “the journey would be like” and immediately started therapy.

“At some point, because of ulcerative colitis, I may need to have an ostomy (a surgical procedure that involves opening a hollow organ). With endometriosis, I may become infertile or need to have parts of my uterus and ovaries removed,” he adds.

Despite that, Megan, who is pursuing a doctorate in endometriosis and chronic pain, says her biggest concern is how the condition could limit her future.

Victoria Hatton, from Churchdown, in the county of Gloucestershire, in the west of England, took birth control pills at age 14 after her menstrual cycles made her physically ill.

“It didn’t help,” she says.

She says she went to the doctor several times, complaining of pain in her legs and back before her period. However, she continued to hear that it was just a “muscle strain”.

Victoria says the lack of knowledge and the symptoms of endometriosis made her question if she was overreacting and if the symptoms were all in her head.

“I always had pain in my back and legs; I was sick from the pain. My upper back and neck hurt.”

‘For myself’

Victoria was eventually diagnosed with the condition at age 19 after a laparoscopy, a surgery in which a camera is inserted into the pelvis through a small cut near her belly button. The procedure indicated endometriosis tissue in her diaphragm.

At the time, she knew very little about the disease; she only knew one other person with endometriosis. She heard that she could become infertile.

“I didn’t know anything about endometriosis,” he said. “I felt very alone. I didn’t go to any support groups because there weren’t any around.”

After her last surgery, in August 2021, Victoria, along with a friend, decided to create an endometriosis support group in her city.

They hope to start face-to-face meetings in August 2022.

Victoria adds that it’s important that “people so young know there is support out there” and that “they can talk to their GP without feeling like they’re bringing them an unnecessary problem.”

The text was originally published here

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