Living with endometriosis: A warrior’s story
Before being diagnosed in 2011, she endured years of unexplained and severe pain she would never wish on her worst enemy.
08 April 2021 | Health
Lea Nampala lived with chronic pain for years before being diagnosed with endometriosis. Although worldwide one in 10 women are affected by the disorder during their reproductive years (from age 15 to 49), many still don’t know what it is and how it can affect you.
But Nampala has made it her passion project to do the often-lacking education work in this field, and last Saturday, she narrated her journey to Namibian Sun - from symptoms to diagnosis to treatment options, and eventually, thriving again.
While March is Endometriosis Month, Ongwediva Medipark hosted a run last weekend to raise awareness on the disorder, and asked runners to wear yellow in support of those suffering from it. Nampala took part in the run, proudly donning a yellow T-shirt, sneakers and ribbon.
Severe period pain
Nampala said no one believed that her period came with so much pain, and she had to endure years of suffering until she turned 26. At the time, she was studying education at the University of Namibia’s Rundu campus.
She got her first period when she was in grade 11, which was not bad, but the pain steadily got worse as the years went by, she said.
The fact that her extreme pain was not even close to normal did not occur to her for many years, she added.
“Everyone told me that heavy, painful periods were normal for some girls, and I didn’t know any different, so I didn’t question it. But looking back now, I know they weren’t normal.
“Over the years, my periods got worse and I developed more symptoms. I will never wish this pain on my worst enemy,” Nampala said.
She was properly diagnosed in 2011 when she had constant pelvic pain and was taken for a sonar. This was when doctors detected a cyst on her ovaries. It was removed, but two months later, the pain still hadn’t stopped.
Nampala went back to the hospital and when the doctors found more cysts, they opted to open her up to see what the cause was.
After the operation, she was finally diagnosed with endometriosis.
But instead of easing her pain, Nampala said the procedure worsened it.
At first, she was overwhelmed with anger and feeling helplessness after learning that there’s no cure for endometriosis.
“I decided to have my uterus and ovaries removed because the main cause was starting from there. And even though I wanted to have children in the future, the possibility of me miscarrying is very high because my endometriosis is aggressive. I didn’t want to experience that,” Nampala said. But even after her hysterectomy, the pain persisted.
She had to undergo a fourth operation, during which doctors discovered that the endometriosis had spread to her liver, diaphragm and intestines.
Before Nampala’s doctors discovered her cysts, her main symptom was pelvic pain.
Ongwediva Medipark marketing and communication co-ordinator Katarina Elago said endometriosis symptoms can vary and some women are badly affected, while others might not have any noticeable symptoms.
She shared that the main symptoms are lower back or stomach pain, which usually gets worse during your period, as well as period pain that stops you from doing normal activities, pain during or after sex, and pain when peeing or having a bowel movement while on your period.
Other symptoms include a heavy period and difficulty getting pregnant.
For some women, endometriosis can have a big impact on their lives and may lead to feelings of depression.
Nampala said prior to her laparoscopy,a surgical procedure used to examine the organs inside the abdomen, she experienced a long list of debilitating symptoms like extreme menstrual pain, heavy bleeding, pelvic pain, nausea and vomiting.
‘Turned my upside down’
Living with chronic pain for years and fighting to have her illness taken seriously was mentally exhausting, Nampala said.
“It’s so important to know that endometriosis is not just a gynecological disorder. It can affect a lot of other organs and cause a lot of different symptoms,” she said.
“Endometriosis has turned my life upside down; every aspect of my life has been affected by it. My social life, my relationship, my career, my finances,” she said.
Since her divorce in 2014, she has opted to remain single because she doesn’t “want to be a burden to anyone’s son”.
She added, however, that endometriosis hasn’t taken from her is her confidence.
Nampala came across an online support group. Connecting with other people with endometriosis, hearing their stories and getting their advice really helped her to come to terms with her diagnosis, she said.
A teacher by profession, she was struggling at work and had to take a lot of sick leave due to her endometriosis. In the end, she was medically boarded, but has yet to make peace with the fact that she cannot work any more.
Even though she no longer menstruates, the disorder lives on in her body and the pain has remained too. The endometriosis warrior said she got a spinal cord stimulator in 2014 to help in this regard. The pain went away for some time, only to return later. She had the device for four years before it was removed when she started experiencing numbness on the left side of her body. But, not one to ever give up, she said she is going to have the operation again this year.