The rise of endometriosis

MASERU – FORMER television news anchor ’Makena Setho-Letsie has survived endometriosis, an unbearably painful disorder in which tissues similar to the lining of the uterus grow outside ( or in other places such as the ovaries).

Doctors say endometriosis cases are on the rise in the country. Although there are no national statistics yet, medical professionals say more people are visiting health centres with endometriosis.
Setho-Letsie, who is now the public relations manager for the Ministry of Local Government, is one the patients. She described her journey with endometriosis as long, painful and unbearable.

“I had to undergo two major surgeries,” she said.

For two years, doctors could not properly diagnose her. Some would diagnose her with fibroids, others hernia or ovarian cysts. But her own research showed that the diagnosis did not match her symptoms.

She said it was difficult for her at work during her monthly periods.

“It would be a struggle… I took a week menstruating and three weeks nursing the pain.

She was initially diagnosed in 2017 through laparotomy surgery.

“I limped as I couldn’t handle it anymore. Tissues were very big and at some point I couldn’t get off the bed,” Setho-Letsie said.

“I couldn’t bear the pain and the bleeding. I was anemic and I ended up being a reserved person,” she said.

Fat, dark skin, nausea, unexplainable fatigue with moods swings, abdominal pains, headache and extremely severe period pains were the symptoms she endured during her fourth stage of endometriosis.

She said she is yet to get over comments by one woman who told her during the peak of endometriosis that she looked like trash.

“It was shocking,” she said.

She said it was through the support of her husband, mother and her boss at work that she endured the humiliation caused by her looks because of the illness.

“I remember going to the doctor and at some point asking her to test me for endometriosis after researching about my symptoms, but she was offended and accused me of thinking that I knew more than her,” she said.

“I had done lots of research about my symptoms and got to a point where I actually wanted to be tested for endometriosis.”
She said the symptoms started after she gave birth but health professionals could not see anything suspicious although her pregnancy was not a smooth journey.

“The pain was way different from my first cesarean procedure and it made me raise eyebrows quickly,” she said. “My operation was very painful and I had lumps. I was also spotting.”
She faced several barriers before she could be diagnosed.

“Health facilitators didn’t understand my illness and took it for granted saying menses were not an illness and called me an attention seeker,” she said. “They said the illness was in my head. It was so painful.”

Setho-Letsie said she was turned away several times until she stopped going to public hospitals.

“If only they could change their mindset we would get help. I had tactics on how to suppress the pain and I would visit different pharmacies. I had to lie to get those pills as they were not given without a prescription.”

Finally, she got a gynecologist who was willing to listen to her and diagnosed her correctly.

“That is why I am here today.”

She said parents should not have the mentality that their daughters are just lazy when they complain about period pains because “there could be a bigger problem”.

“During my menstrual cycle, I would endure severe pains a week before my actual periods and the pain would get worse during my periods and after,” she said.

She said it took her time to accept the news that she had endometriosis because she could not understand why so many doctors failed to diagnose it.

“I was emotionally drained and tortured.”

She said she completely changed her lifestyle and had to read a lot and learn to live with it as it is chronic.

“I thought I was alone in the country living with this monster,” she said, adding: “I thought it was witchcraft and to finally accept it was through reading people’s stories and joining support groups from other countries.”

She said talking a lot about it through her social media platforms and doing live sessions attracted a lot of people and one Mosotho gynaecologist based in Malawi chipped in to explain her situation.

“That’s when I realised how prevalent it is as people confided in me and those in the closet came out.”

She said over 100 women confirmed to have the disease and this is what birthed the Endometriosis Foundation of Lesotho, an association she founded in April last year.

The foundation supports women with all illnesses from endometrial. Its vision is to support all women to find healing and make the government aware of the existence of endometriosis.

“Many women live with it and need support like cancer patients as they are referred for further diagnosis. We need that.”

She also said they wish to have a centre for patients to be able to see specialists.

Apart from the foundation, her illness also brought her to the Healing Hands Wellness Centre, which helps Basotho with herbs and scan machines, detoxing and counselling.
Endometriosis is a disease that affects 11 percent of females between the ages of 15 and 44 worldwide, this according to the World Health Organisation (WHO).

It affects adolescents and reproductive-aged women characterised by the presence of endometrial tissue outside the uterine cavity and commonly associated with chronic pelvic pain and infertility.
According to Women’s Wealth Africa, despite a wide range of symptoms, diagnosis of endometriosis is often delayed due to the lack of non-invasive, definitive and consistent biomarkers for diagnosis.

Hormone therapy and analgesics are used for treatment of symptomatic endometriosis. Women’s Health Africa indicates that most women with endometriosis report the onset of symptoms during adolescence. It says early referral, diagnosis, identification of disease and treatment may mitigate pain, prevent disease progression and thus preserve fertility.

Women’s Health Africa says barriers to early diagnosis include the high cost of diagnosis and treatment in adolescent patients and presentation of confounding symptoms such as cyclic and acyclic pain. It further explains that pelvic pain is the most common symptom of endometriosis.

This also includes pain in the lower abdomen during and after menstruation, cramps one and two weeks around menstruation, heavy menstrual bleeding or bleeding between periods and infertility.

Dr Nonkosi Tlale, a local obstetrician and gynaecologist, said endometriosis is now becoming more recognisable in the country.
“It is very common these days,” Dr Tlale said.

She said it is caused by the backward flow of the menstrual fluids which contain some blood and the endometrial lining.

“If the process of cleaning out the endometrial lining is slowed down or defective, some of the endometrial lining is planted and it grows,” she said.

She said it can be diagnosed through thorough physical pelvic examinations, ultrasound scans, magnetic resonance imaging and laporascopic machines. She said it affects females in their reproductive age, those who still menstruate.

Dr Tlale said a patient experiences pain a couple of days before menstruation. She said the passage of urine and stool may become painful and love making may become unbearably painful.

“If not treated early, it affects or leads to infertility and sometimes there is no ovulation even if ovulation occurs, the egg can’t get into the tube or even leads to menstruation within the ovary that could form hemorrhage cysts. Physical pain can be felt mostly during menstruation but if the endometriosis has affected most parts, the pain is constant,” she said.

Dr Tlale said treatment can either be through the use of hormones that stop the menstruation process; progesterone, male-like hormones that stops ovulation and gonadotrophin-releasing hormone releasing analog.

“All these drugs work with menstruation regulation to prevent the ovulation cycle and we often prescribe them for six months.”
However, it puts patients in a menopausal state (li etsa mmele o tsofetseng, ausi-nkhono) with hot flashes, mood swings similar to that of contraceptives, weight gain amongst others but the menstrual cycle pain declines.

She said another treatment option could be prescription of strong painkillers.

“Sometimes taking painkillers for too long makes them defective (no longer suppress the pain) and can’t tolerate the symptoms hence we encourage womb removal, especially for people who are done with child bearing.”

She said corrective surgeries can be done several times and sometimes may force the removal of the womb.
Dr Tlale said sometimes the disease is diagnosed late because health professionals do not examine thoroughly from the beginning.

“Medical professionals should have a very high suspicion of pelvic inflammatory symptoms. We should think about it first, not at a later stage,” she said.
She said to prevent it, diet is very important and encouraged women to try and eat organic and Sesotho cuisine (theepe) as much as possible.

“Women should be careful of what they eat,” said, adding “We should go back to the basic way of eating healthy food and this could have a positive impact on our bodies as it would be able to heal itself.”

’Mapule Motsopa