30 April 2019

Namibia: A Nightmare Called Endometriosis

IT IS rare for women to talk about menstruation or the pain they endure during those few days of every month.

Lea Nampala (36), however, has broken ranks to not only talk openly about her menstruation, but the pain she endures because of a condition called endometriosis that has led to the removal of her womb and ovaries.

Gynaecologist Francois Siemefo explained that endometriosis is a long-term condition that causes painful periods (dysmenorrhea), pain during intercourse (dyspareunia), and infertility.

Siemefo said endometriosis is difficult to diagnose, and many women live with the condition for many years.

The gynaecologist added that if left unchecked, the condition can worsen and become difficult to treat.

Nampala did not wait for the condition to progress after she had endured immense pain throughout her 20s. The Namibian interviewed Nampala at her home at Ongwediva last week, where she spoke about her painful journey with the condition.

Living with endometriosis, she told The Namibian, is like living in hell because apart from the severe pain, some nurses do not believe women who have the condition.

"I suffered from abdominal pain, and I felt nauseous, and had terrible headaches. The pain disrupted my professional and personal life," Nampala said.

Nampala added that no one believed that her periods came with so much pain, and she had to endure years of pain until she turned 26 while training to be a teacher at Unam's Rundu campus.

"A doctor told me that my pain was normal," Nampala said. "I think the doctor did not know about the pain I was enduring. He would tell me to take it because it is reasonable to have period pains."

She noted that another doctor misdiagnosed her until she went to Medipark at Ongwediva in 2011, where a sonar detected a cyst on her ovaries.

Dr Anthony Musonda then advised her to remove the cyst because it was huge."Dr Musonda was the first to suspect that I had endometriosis, and to be sure, he referred me to a gynaecologist at the same clinic. After a week or so, they operated on me to remove the cyst," she explained.

The doctors were convinced that my condition was endometriosis after the operation.

The operation did not stop the pain, but worsened it, and Nampala said she started doing research about the condition. When she found out that there is no cure for endometriosis, she was scared.

"As a teacher, it was not easy because when the pain started, I had to go to the toilet and curl up on the floor where it was a bit cool. Sometimes, I would cry when the pain started, and at other times I would try to be strong for the sake of the pupils," Nampala recalled.

When the doctors advised that in order to end the pain they had to remove her womb, she readily agreed.

Dr Musonda, however, advised her not to have her womb removed because he felt she was still young.

Although she went ahead to have her uterus and both ovaries removed in three operations, the pain did not relent.

She had to undergo a fourth operation, during which the doctors discovered that the endometriosis had spread to her liver, diaphragm and intestines.

Nampala recalled rushing to the emergency room every second day when the pain started, and was referred to a neurosurgeon, who suggested that she should have a spinal cord stimulator or a morphine pump.

"I did not like the morphine pump because I did not want to get addicted, so I went for the spinal cord stimulation," she said.

In 2014, she went for yet another operation at Medipark, where they fitted the stimulator. The pain went away for some time, only to return later.

"I would go out to enjoy my pain-free day, but at a later stage, the pain started again. I would say the pain was 50/50. The stimulator did not take all the pain away," continued Nampala.

She added that after a year with the stimulator, she started experiencing numbness on the left side of her body, and had the stimulator removed. Nampala also said since her divorce in 2014, she is no longer interested in having a love life following the removal of her organs. She said although she has been approached by aligible men who want to date her, she turns them down because she feels uncomfortable telling them about her situation.

Dr Musonda told The Namibian that Nampala's situation is a special case from which doctors in Namibia and South Africa learned a lot.

There was a time, he said, when Nampala would call in the middle of the night, "asking us to inject her so that she could die".

"It is just so sad to see a young vibrant lady's life like this. Her condition is still a challenge to most of us; several surgeries were done on her, but she still has the symptoms," the doctor said.

Dr Musonda said they are still trying to control the pain in a way that would not make Nampala get addicted to the painkillers.

Meanwhile, the Windhoek IVF Clinic states in a report that because many women reported that their symptoms from endometriosis subsided when they were on birth control pills, doctors had begun prescribing the pills to control the condition.

By suppressing their periods for nine months or more with a very high dose of birth control pills, 80% to 90% of the women suffered less pain, and nearly half fell pregnant when they discontinued the medication.

However, endometriosis recurs in a third of these patients because of the side-effects of the birth control pill's high dosage.

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