What is endometriosis? Why is it so hard to diagnose and treat?

Women holding tummy in pain
Morning problems with pain of stomach

Arnetia Brown got her first period when she was 13 and pain has been a regular part of her life since. 

“With my very first cycle my father found me passed out on the floor. I actually fainted because I was in so much pain,” she recalls

It would be another two years before the 28-year-old would consult a gynaecologist and start the long journey of trying to figure out what was going on. It was only six years later, at the age of 21, that Brown got the final diagnosis. 

She had endometriosis, a condition that is hard to diagnose and tricky to treat.  

What is endometriosis?

Heath-e News spoke to Fatima Kathrada, a pharmacist, lecturer and researcher at the University of Witwatersrand. She’s also a women’s health advocate. She explains what the condition is.

The cause of endometriosis is unknown and there is no known way to prevent it. There is also no cure, but its symptoms can be treated with medication. In severe cases surgery may be needed. 

Symptoms often dismissed

Recent research by the Swedish Council for Health Technology Assessment explores the healthcare experiences of women diagnosed with endometriosis. The paper reviews studies done in Australia, Britain, Italy, New Zealand, South Africa and Sweden. 

The research shows that the women were treated with ignorance regarding endometriosis in primary health care settings. They experienced delays in both their diagnosis and treatment and felt that health care professionals do not take their problems seriously. 

Like these women, Brown would hear various things from doctors, such as ‘that’s what it means to be a woman’, ‘it’s normal to have pain on your period’.

“There was a lot of medical gaslighting also from nurses. There was a lot of double and triple checking of what I was saying which would make me feel discouraged and not want to visit the doctor. I would sometimes prefer to self medicate and ‘deal’ with it on my own,” she says.

Why it’s difficult to diagnose

Endometriosis can often present symptoms that mimic other conditions. This contributes to a delay in diagnosis. Kathrada says diagnosis can take between seven to ten years.

 

Lengthy process

Brown experienced the drawn out diagnosis process first-hand. 

“I was doing lots of blood tests; testing hormone levels, going for ultrasounds, scans and even an MRI recommended by my gynae at the time. I was actually first diagnosed with Polycystic ovary syndrome  (PCOS). This wasn’t a misdiagnosis but it wasn’t my main problem,” she says.

PCOS is a common hormonal condition that can cause hormonal imbalances, irregular periods, excess androgen levels and cysts in the ovaries. 

Brown eventually had to go for a laparoscopic surgery. This procedure allows a surgeon to access the inside of the abdomen and pelvis without having to make large cuts. After the surgery she was diagnosed with stage 4 endometriosis.

Her day-to-day life is impacted by endometriosis. Sometimes she finds herself struggling to do things like work, pick up her daughter, cook or even move because of the pain. 

“It’s also mentally draining to always be in pain and complaining about being in pain,” she says.

Since her diagnosis Brown has been on a wide range of medications starting with oral contraception or ‘the pill’.

“A lot of doctors don’t take side effects into account when putting their patients on the pill; hormones are already out of whack and putting us on another hormone without fully considering the full gambit, is going to cause more problems.

“I have been on quite a few different pills that have caused headaches, acne, and made my period pain worse. Some gave me extreme migraines to the point where I struggled to drive,” she says.

Brown has had five surgeries since her diagnosis. Her most recent surgery this year was almost fatal because of the severity of the endometriosis. Currently she is taking a supplement that helps with some of her symptoms. 

“I would say to women that it’s not normal to consistently be in pain to the point where you can’t do anything. If you are experiencing extreme pain then go seek help and if that doctor doesn’t listen to you or believe you then find another doctor,” she says.  – Health-e News

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