Namibia: Endometriosis and Infertility

INFERTILITY activist Helena Mootseng wanted to conceive in her mid 20s.

Newly married and excited to become a mother, Mootseng found herself deeply disappointed when she and her husband's attempts to fall pregnant proved futile.

While this experience prompted concerns about her ability to conceive, Mootseng realised in retrospect that her fertility difficulties started much earlier.

"I want to talk about the medical issue that found me struggling to conceive. It is a condition called endometriosis, which a lot of women experience, but which we don't always understand," Mootseng told The Namibian.

She recounted that from an early age, she experienced intense menstrual cramps. However, she did not have the information to investigate the debilitating period pains.

"For me, growing up, it was always just an issue of having difficult periods - crampy periods, painful periods.

"Growing up, we didn't really understand that if we investigated those things we would understand that there are medical conditions that probably are likely to result in that," she said.

Mootseng is now a Merck 'More than a Mother' heroine and advocates more education on infertility and difficulties with conception.

Merck More than a Mother is a movement of the Merck Foundation that empowers infertile women through access to information and education, and changing the stigma around the subject.

Endometriosis is a gynaecological disorder in which the inner tissue lining of the womb attaches itself outside the womb, causing severe pain.

This potentially obstructs the sperm from getting to the egg. However, not all women who live with endometriosis cannot conceive.

"It's not necessarily a condition that means you will not conceive because I know people who have endometriosis but have conceived and birthed children," Mootseng said.

Windhoek gynaecologist and obstetrician Dr Farai Bento says in rare instances, the displaced endometrial tissue could also be found in the lungs, bladder and brain. However, the disorder mainly involves organs such as the ovaries, fallopian tubes, and the tissue lining the pelvis.

Twenty-year-old Lebo Ramohapi, who also shared her endometriosis experience with The Namibian, said the condition affected more than just her abdomen.

"I used to get pain in my knees, in my ankles, and chest. I used to vomit and I used to lose my appetite for three days. I used to miss many classes at school," she said.

Ramohapi said she started menstruating at age 14 and her period was agonising from the onset.

"Since I got my period, I'd always have these extreme cramps and as I grew older, they got progressively worse. I'd be nauseous [and] I'd shake. Pretty much every part of my body would hurt.

"I went to [male] doctors a few times and they told me it was just how periods are supposed to feel [... ] until I finally switched to a female doctor who ran extensive tests and then referred me to a gynaecologist," she narrated.

Ramohapi says she was first diagnosed with endometriosis last month, despite years of excruciating pain.

"There was a pelvic exam and then there was an abdominal ultrasound - that really intrusive one.

"So, the doctor confirmed that the endometrial tissue had grown outside my cervix and she would perform a laparoscopy to remove the endometrial tissue and check if it has spread to other organs," she said.

A laparoscopy, also known as keyhole surgery, is a minimally invasive surgical procedure that allows a surgeon to access the inside of the abdomen and pelvis without making large incisions in the skin.

Like most women diagnosed with endometriosis, Ramohapi was warned of difficulties in conceiving and potential infertility.

"She [gynaecologist] told me that it would affect my ability to fall pregnant. She told me that we had to treat it now to avoid infertility problems in the future," Ramohapi said.

However, this did not take away from the reassurance that came with identifying the problem and knowing how to tackle it.

"Honestly, I wasn't scared. I was just glad that somebody had finally affirmed my fears. [...] When she finally diagnosed me, I felt like 'Yes, I wasn't crazy'," she says.

Many women say accurate diagnosis was delayed.

Tuli Kamati, a 28-year-old woman who was diagnosed with the condition in 2019, says it took three years for her to receive the correct diagnosis.

"Getting an appointment to see the state gynaecologist takes up to six months. I don't know whether better screening and diagnostic tests need to be made available or awareness should be raised around it, but it shouldn't take so long to get diagnosed," she says.

Kamati experienced prolonged bleeding (menorrhagia), severe abdominal and pelvic pain, chronic nausea, irritable bowel syndrome and iron deficiency anaemia.

"I would be bedridden during my period," she said.

She also underwent a pelvic exam and a laparoscopy. Her doctor also discussed future conception plans with Kamati, who said she was not too concerned about this aspect of the condition.

"We discussed it but since having biological children isn't really a priority to me, I wasn't worried," she said.

Naledi Kunene was diagnosed long before she was ready to think about children, but now, seven years later, the inability to conceive does, at times, bother her.

Kunene was diagnosed in 2014 at age 17.

Now aged 23, Kunene says she has made peace with her infertility.

At the time, it was like anyway, I don't want kids right now.

"[Later] it started really dawning on me that wait, you're getting older. One day you're going to meet someone and he's going to want a family," she said.

Kunene detailed a long medical history, which started with an umbilical hernia until she was eventually diagnosed with endometriosis and informed that she was infertile.

"It all started with an umbilical hernia to spastic colon, to fibroids, to having ovarian cysts removed, to endometriosis," she said.

While Kunene says she has accepted her condition, she is sometimes afflicted with the reality that she might not get married.

"You can never be 100% at peace with something so I am not 100% at peace but I've made peace with it. However, it comes up a lot because people ask me when I will have a child, and random questions about marriage," she said.

More organisations and groups are working towards making more information available about gynaecological disorders like endometriosis to destigmatise the condition.

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