Endometriosis Awareness Day: UAE women open up about how period pain affected their lives for years

Every woman remembers the arrival of her first period, a girl’s coming-of-age moment that is frequently received with a wide mix of emotions, including shock, confusion and pride.

Shock, because as much a girl is prepared for the moment, it is a very different story when it hits you with its many physical and hormonal changes. Confusion, because there are just so many accoutrements to navigate; do you need regular or heavy flow sanitary pads, with wings or without? And later on, the choices widen to include tampons and menstrual cups. Pride, because there is something so special about finally knowing that you have officially hit puberty and are no longer a child. Yet on top of all that, there are a number of accompanying symptoms to deal with, which differ from woman to woman and from one month to the next.

First of all, there is no such thing as a ‘normal’ period, because every woman’s body is unique to her. Moderate pain is expected, like abdominal and lower back cramps, headache, as well as spotty skin and irritability. Normally, an over-the-counter painkiller will remedy many of the symptoms. Yet, for some, the ‘time of the month’ brings forth immense pain and discomfort. According to UK’s Women’s Health Concern, up to 10 per cent of women have pain that is severe enough to disrupt their life.

Symptoms can absolutely debilitating, affecting everyday life, and it can be difficult to discuss, at school, at home, which generates more stress that exacerbates the problem.

Emirati B. A. Z., 32, has suffered more than most. “The symptoms started after my menstrual cycle began in my teens, and the pain got worse over the years.”

Her symptoms were so debilitating, that she even required hospital care at times. “My period pain would get so bad that I would sometimes need to go to the hospital to get painkillers administered through an IV.”

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Over the years, she saw multiple doctors who failed to diagnose or treat her ailment. “I went from one hospital to another, had numerous check-ups, but did not receive a correct diagnosis. The pain was mainly in my uterus, but I was often told the problem was in my colon, or stomach. I knew it wasn’t, as I only felt pain during my period.”

She said she eventually came to accept the pain because she had no other choice, until she started suffering from new symptoms — incontinence and infertility — prompting her to investigate her health further. “I couldn’t hold in urine, or even control my bowels anymore.”

“I got married two years ago and discovered I had pain during intercourse, and started to have a lot of infections. I was also trying to get pregnant with no success.”

That’s when one doctor decided to use an MRI to examine her organs and severe endometriosis was discovered. “I’ve had countless ultrasounds over the years which did not pick up anything, but the MRI finally did.”

“I was told I had severe endometrial adhesions on my uterus, colon and other areas and blood-filled cysts (known as chocolate cysts).”

An endometriosis specialist at Corniche Hospital in Abu Dhabi, Dr. Georges Botros, Consultant Gynaecologist, Minimally Invasive & Pelvic Master Surgeon, performed a 7 hour laparoscopic procedure on B.A.Z. to clear up her endometriosis. “It took him 5 or 6 hours just to clear the adhesions, because they were in very critical and delicate spots like my colon, and he had to be very careful. Also, he found that both my ovaries were stuck to my pelvic wall.”

A few months after the surgery, B.A.Z. conceived naturally and is now 5 months pregnant.

“I finally discovered what endometriosis is. Now, whenever I come across women with pain or struggling with infertility, I advise them to get checked for endometriosis, as there are so many people who aren’t aware of this condition. I would recommend they go to an endometriosis specialist.”

Terrible period pains

Christina Ioannidis, 50, founder of Top of Her Game, a peer mentoring community for Arab women to pursue their life ambitions, struggled with painful periods for years before she finally received a diagnosis. “I found myself talking about the pain during a mentoring session, and realized that many women have similar symptoms.”

“I had terrible, terrible period pains most of my life, and with all the checks done, there had been no endometriosis identified. I used to take 2400 mg of ibuprofen a day on my period,” said the transformation consultant, speaker and coach.

It wasn’t until 2017, at the age of 45, that she was finally diagnosed. “I had a laparoscopy for the removal of fibroids, and that's when they saw endometrial adhesions in my abdomen.”

Ioannidis then began reading on the subject and found that by eating a mostly plant-based diet, avoiding inflammatory food like dairy, cheese and gluten, having visceral osteopathy and intermittent fasting, helped control her symptoms. She is also now on progesterone tablets.

“I control my estrogen metabolism through eating ground flaxseed and chia seeds, as well as loads of nuts,” she added.

According to the Mayo Clinic, the exact cause of endometriosis is not certain, but possible explanations include retrograde menstruation, when menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity. These endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.

The chronic inflammatory reaction may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body, and affects 1 in 10 women of reproductive age and girls.

The condition can cause pain during periods or sexual intercourse, as well as increased fatigue and even infertility.

Christina adds, “I want to encourage other women to not only just educate themselves, but listen to their bodies. If you have extraordinary pain, it's indicative of something. This includes extreme leg or joint pain during a period, or even problems conceiving; these are indicators that something's not right. It is not normal for us to feel such pain.”

Moreover, the inflammatory disease is not always present with symptoms, according to endometriosis.net, nearly a quarter of women with endometriosis have no symptoms.

Often in cases of silent endometriosis, in the women who are affected, it goes undetected for years, until she tries to become pregnant for some time and her doctor can’t work out why she isn’t able to.

The challenge of diagnosing the disease

Dr. Georges Botros, who successfully treated B.A.Z., said the diagnosis of endometriosis can be very difficult, taking an average of 7-11 years until diagnosis. “This is due to the fact that symptoms are similar to painful period symptoms which many women have and can be part of normal physiological variation.”

“There are different stages of endometriosis, it can present from a mild up to a severe disease with big lumps of endometriosis into the pelvis, adhering to the bowel, the back of the uterus and the ovaries.”

Dr Botros said that detection of the disease with ultrasound is limited to ovarian endometriosis, so it is not the main line of investigation for diagnosis. “The gold standard diagnosis tool is a laparoscopy, and sometimes we use MRI to exclude severe disease. So the combination of these 2 modalities can increase the accuracy of diagnosis.”

Treatment options can be different according to patients age, type of symptoms and whether the patient is trying to conceive at the time. He said treatment include pain killers, hormone treatment which helps to suppress the disease, and laparoscopic excision of the lesions (keyhole surgery, a minimally invasive type of surgical procedure).

“For women who are trying to get pregnant or undergoing infertility treatment, keyhole surgical intervention and removal of lesions is favourable as we can’t provide any hormone treatment. Removal of the lesions laparoscopically improves their chances for pregnancy,” Dr. Botros said.

He added, “Diagnosis and treatment of endometriosis need to be conducted at specialized and dedicated centers with highly trained and skilled consultants who have been dealing extensively with the disease over a long period of time.

“Complex endometriosis surgery requires considerable surgical skills, multidisciplinary team work and expertise, as it is often close to vital structures like the ureter, bladder or bowel, but laparoscopic removal of endometriotic lesions can improve quality of life and minimise long-term complications.”

Ioannidis has made it her life’s mission to help other women facing similar health issues, and has created a first-of-its-kind initiative to address these topics, the Top of Her Game Women’s Health Festival, which aims to open and encourage conversations about women’s health issues which are often veiled by taboos, such as mental wellness, hormonal and menstrual wellness, and metabolic wellness.

The event will be held on March 3 and 4 at Creative Hub in Abu Dhabi, and will bring together a host of knowledgeable and vocal voices on many aspects of women’s health, including how to ‘Listen to your Body’.

Endometriosis Awareness Day is observed today, March 1. March is also Endometriosis Awareness Month.

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