Living with endometriosis: Talata’s story of pain, strength and advocacy

Behind the smile of Helen Talata Akongzirigo Azitariga, Upper East Region representative of Ghana’s Most Beautiful (GMB) 2017, lies a 17-year-old battle with endometriosis and adenomyosis, two incurable gynecological health conditions.

In an interview with The Mirror in Accra last Tuesday, she explained that both conditions affecting women of reproductive age, happen when cells similar to the lining of the womb grows outside the womb, often in the pelvic region but sometimes in other parts of the body, including the eyes, nose, chest, palm and other organs (endometriosis) or within the womb itself (adenomyosis).

This, she added, could result in abnormal menstrual pain, heavy daily bleeding, vomiting, anaemia, random fainting and sometimes infertility.

"Mine started when I had my first menstrual period at 14. It lasted three days and didn’t return until a year later. Then the problems began. I didn’t know what was wrong with me. Everyone dismissed my pain, saying I was being dramatic.”

“‘Take painkillers, you’ll be fine,’ they said, until I decided to seek answers," she recalled.
Seventeen years down the line, Miss Azitariga has undergone 16 surgeries and her only hope of having biological children has to be through surrogacy as she has lost her womb and cervix to the condition. For someone who loves children, this was a big blow.

“I even attempted suicide by overdosing on painkillers because death felt like the only solution. Few years ago, whenever I heard of a young person passing away, people would cry, but I would ask God: ‘Why? I am ready to go, yet you are taking others,” she said.

Now 31 years old, she is telling her story to let other women who suffer in silence, are teased, dismissed, or told they are being dramatic, know they are not alone.

"Too many people don’t even know about this disease. We need more awareness, more empathy and better treatment options," she said at the recently held Stronger Together Women’s Health Conference, a women’s health  event hosted by Communication Consultant, Adwoa Amofa Osei, on Saturday, March 8, in Accra.

Search for answers
Born to Mr Akongzirigo Azitariga and Mrs Vivian Azitariga, the Zorkor native said she began actively searching for answers in 2020 during the COVID-19 lockdown.

"I had already gone through so much, yet there were no results. I was in pain, my joints, bones, head would all ache non-stop. I was on tramadol, morphine, contraceptive pills, including IUDs, tranexamic acid, all to reduce pain and bleeding. I sometimes had to be injected with epidural in order to numb my lower body so I don’t feel pain,” she said.

The baker and owner of Just Bake added that sometimes she had to be hospitalised and given blood transfusions and painkillers to keep her from collapsing. I would vomit randomly, feel nauseous, experience hot flushes and bleed almost every day. I used about 15 pads daily, and they still weren’t enough," she explained.

Frustrated by the lack of answers, she began researching her symptoms and found several possible conditions, including fibroids and ovarian cysts.

"In 2020, I started visiting gynecologists, and that’s when the misdiagnoses started. One said I had fibroids, another said I had ovarian cysts or Polycystic Ovary Syndrome (PCOS). They all tried different treatments, but nothing worked,” she said.

Another doctor diagnosed endometrial polyps and recommended surgery to remove them, which she underwent. "I thought that was the end, but no, the bleeding and pain returned just two weeks later," she said.

It wasn’t until October 2020, at the Greater Accra Regional Hospital, that she finally got the right diagnosis; endometriosis with adenomyosis.

"I had already researched so much about it, so I wasn’t surprised, the diagnosis was confirmed through a laparoscopy, a minimally invasive surgical procedure," she added. 

Seeking solutions: Medical menopause
Finding treatment was another challenge for Miss Azitariga. Doctors recommended medical menopause, which came with its own difficulties.

"This is where a very expensive hormone drug called Lupron is injected into you at least every three months to trick your body into thinking it has reached menopause. This means lowered estrogen production, no egg production and other hormonal changes,” she explained.
She added that the treatment came with typical menopausal symptoms such as hair loss, mood swings and fatigue. 

"Your body now thinks it is old, so it starts acting like an old person." Realising it wasn’t helping, she took matters into her own hands. 

"Against all opposition from family and friends, I made the hardest decision of my life, to undergo a hysterectomy, the removal of my womb. I felt if the bleeding could stop, then I had only the pain to deal with. I was 29 years old then,” she said.

Womb and cervix removal  
For a young woman, the decision to remove her womb meant infertility and a possible future without biological children. But as the only daughter among three siblings, her parents were willing to do whatever it took to help her feel better.

“I had a subtotal hysterectomy, which removed my womb but left my ovaries. After the surgery, I felt a sense of relief. The heavy bleeding reduced and for the first time in years, I thought I could sleep peacefully. But the journey was far from over,” she explained.

When that didn’t help much, she noted that, doctors advised her to undergo another surgery to remove her cervix, all in a bid to reduce the bleeding.

“That was my last surgery, four weeks ago. The bleeding has reduced significantly, but I cannot fully be happy yet because you never know,” she said.

Since the onset of her condition, she estimated that over GH₵400,000 have been spent on treatment, including sanitary pads, tampons, medications and surgeries.

Reduced quality of life
The lover of cooking noted how endometriosis has affected her quality of life. She explained that the constant pain and fatigue often left her too weak to go out, forcing her to cancel plans or leave events early. 

Many people misunderstand her struggles, thinking she is making excuses. Even during her time in the GMB house, she battled pain, dizziness and nausea, though her fellow contestants offered support.

Romantic relationships have also been difficult, especially due to infertility, she added.  “Not everyone is willing to be with someone who may never have biological children and that has ended some relationships,” she said.

Turning pain into purpose
After years of misdiagnosis, emotional distress and financial struggles, Miss Azitariga has turned her pain into purpose. She now advocates endometriosis awareness in Ghana, using her story to educate women and push for better health care.

"Too many women suffer in silence, dismissed by doctors who don’t understand or oftentimes haven’t even heard of the term before. We need more awareness, more empathy and better treatment options," she said.

Even though she’ll continue to battle with the lifelong condition, her focus remains on advocacy, hoping her story will encourage more women to seek answers and refuse to suffer in silence.

writer's email: appreygloria@gmail.com