For the month of March — Endometriosis Awareness Month — we will bring you stories about the condition, as well as contributions from the brave women who are fighting the battle.
DAVIANNE Tucker left her home in Brown's Town, St Ann, at 18 years old to further her education. She left behind a childhood in a rural community where she was raised as an only child by her father and extended family, the guidance and mentorship of her grandmother, who was her best friend until she passed away in 2008, and the haunting of sexual abuse by her cousin that plagued some of her younger years. She went to Kingston for a fresh start — to learn and become more.
“Growing up in that space, the people there were not like me. I was very excited about things, about life, and they weren't necessarily like that,” she shared with All Woman, while stirring her bowl of soup in her Red Hills Road, St Andrew apartment last week.
“I was always bullied at school, especially by boys. I was tiny, and they took advantage of that. The girls would tease me that, 'Yuh too nuff!', 'Yuh too extra!' and that started to affect me when I got to high school. I was outspoken, but the more I thought about it, the more I would go into a shell. That period of high school was tough because I wasn't myself.”
But the ostracism that she faced in high school served to propel her into finding herself at The University of the West Indies, she said.
“I really tried hard to focus on myself, on getting better, and on not recreating the past. I went back to volunteerism, I got involved with the Guild, and I was involved with a lot of hall activities. I was that person whom you would see all over campus just being involved. I worked on my confidence a lot — in small and big steps.”
Tucker served as the librarian for The UWI Guild Council, which was a selected position, and then the following year she took a leap in contesting the Guild president post, which she won.
“But the downside to being very active and being very focused just purely on achievement and ambition was that I didn't balance that very well with my health. I didn't take care of myself,” she confessed.
While immersed in her mission to find herself on campus in first year, Tucker's body gave her the first big message that something was amiss. It came in the form of anxiety attacks.
“I was getting sick a lot because the mental stress started to play out physically, and I think that's when my body started to decline. I wasn't eating properly, I wasn't exercising. I didn't really have breathers. I developed an anxiety disorder that had me in the hospital from time to time. It got to a point where my body would twist and bend when I had anxiety attacks, and they thought I was having seizures. I did a CT scan and the doctor said to me that there was nothing wrong, it was just my mind,” she recalled.
“I ended up seeing a psychiatrist, who told me that the first thing I needed to do was to identify my stressor, and it was at that point that things started to change. I spoke to my parents.”
The talk she had would lead her into leaving the Faculty of Science and Technology, to start a new degree programme in the Social Sciences.
Tucker's health improved significantly after she transformed her GPA from 0.4 in Science and Technology to 4.0 in her first year of Social Sciences. But despite overcoming a major hurdle for her mental health, her body was still suffering every month.
“I noticed a severe spike in cramps, nausea, diarrhoea — those types of symptoms during my period. They skyrocketed in 2012,” she said.
On one particular occasion when the pain was unbearable, Tucker had her friend take her to the hospital where a doctor wrote off her symptoms to be those of dysmenorrhoea (chronically painful periods).
“She said, too, that there was another condition that's more severe and complicated and difficult to diagnose that is called endometriosis, and that maybe at some point I needed to check if I have that. But I didn't even research it. I moved on,” she said.
Tucker continued her trek through university, and her life got more hectic. She studied, she volunteered, and she led the university student populace.
“I didn't realise how much my health was declining until I became Guild president. I was just not paying attention to my body. I had developed ulcers in my duodenum, so I was struggling with the pain from that, along with the period pain.”
Tucker recalled in June of 2015, having just been installed as Guild president, how a friend of hers escaped death by staying at her side when she was ill.
“A team of us went to Trinidad for UWI Games, and one of our friends died. He met in a car accident and the car blew up. One of my friends, who had journeyed to our destination with him, was supposed to leave with him, and the only reason she didn't leave with him was because I was feeling sick. So she didn't go. Had she gone with him she would have died. Her things burned up in the car,” she said.
After attending the funeral and returning from Trinidad, the pains continued for Tucker. Her next trip to the hospital came as a result of pain during intercourse.
“It felt like someone used a knife and cut me in my belly. I couldn't move. The pain was excruciating, and it didn't stop. It continued to the point where I ended up in the emergency room,” she remembered. “I was morphined up. I was there for a day and night.”
But shortly after she was discharged, the drugs wore off and the abdominal pains returned. She had to return to the hospital that same night.
“They did multiple ultrasounds, a barium meal test, but found nothing. They couldn't see what was happening. There were no swellings, nothing. They did a swab for pelvic inflammatory disease, and concluded that it was what I had.”
But Tucker was perplexed by this diagnosis. She knew that PID was bacterial, and could be sexually transmitted, but she had always used protection. They put her on antibiotics and pain medication, which eased her plight a little, but a few months later the pain returned — this time worse than before.
“It wasn't until 2016 when I ended the presidency that everything hit me,” she said, looking up from her bowl of soup. “I started noticing that I was feeling pain two weeks before my period, during my period, and right after my period. I was having cramps all over my belly, and nausea and indigestion. The fatigue was so terrible, I felt drained all the time. My GP, Dr Courtney Harris, was the first one to put me on an opioid, which was morphine, and that was a great relief.”
But while she managed to get some relief for her pelvic pain, she noticed something else. The pain started to spread to her legs. By 2017 she was having pains all over her body. It began to inhibit her livelihood.
“I couldn't work as much. Ultimately I left my job in group marketing at Sagicor. I became more tolerant of the morphine, and so I needed more for it to have an effect, which was worse for me because opioid suppresses your respiratory system, and I'm asthmatic. It was really difficult to breathe.”
'There was endo everywhere...'
With swollen hands and feet in the morning, intense pain all over her body throughout the day, poor coordination, and even gaps in her memory, and having seen numerous health specialists, no one could place a finger on what was happening to her.
“I looked in the papers for a doctor who was knowledgeable about this kind of thing. I looked for a doctor who was doing research and was vocal about this thing, and that was Dr Ryan Halsall.”
That was exactly a year ago. The next few months proved to be a period of clarity and understanding of what was happening to her body, and ultimately, a diagnosis of fibromyalgia and endometriosis. Fibromyalgia was causing the pain all over her body, but the pelvic pain was only found to be endometriosis through laparoscopic surgery late last year. Endometriosis is diagnosed when cells similar to those found in the uterus grow outside of the uterus, and break down each month, causing scar tissue to form.
“There was endo everywhere,” she explained, using a diagram. “I had so much scar tissue that it wrapped around the uterus, pulled it backwards, and stuck it to my rectum. My ovary was pulled between the uterus and the rectum, so it was down in the septum. That ovary had a large cyst. It was covered in scar tissue. I had severe adhesions over the other ovary, on the pelvic floor, my upper vagina, between my left Fallopian tube and ovary, and the pelvic side wall.”
In a surgery that lasted over three hours, Dr Halsall and his team cut and burned away as much of the scar tissue as they could, thereby untangling her reproductive system from the other organs in her pelvis, and placed barriers inside to keep them in place.
“Recovery was really difficult. It's been the most depressing period of my entire life. When I got home from surgery and the anaesthesia wore off, I was screaming in pain. There was just this gas pushing up on my diaphragm. I couldn't speak. I couldn't walk for days. When I could get up, it felt like there was so much space in my abdomen, and it felt like my organs were moving around. I felt like I wanted to die.”
But with support from her loved ones and her doctor, and with the passage of time, she started to heal. The pain, however, is still never far away. The endometriosis, though controlled, will continue to grow, and the incurable fibromyalgia pain is still attacking her body. With very strict dietary instructions, she has lost a lot of weight, and relies on pain medication to get through her days.
After being turned down by her insurance provider to cover the cost of her surgery or medication, Tucker publicly raised over a million dollars last year for treatment overseas. After a major breakthrough in diagnosing her endometriosis, however, over half of that was used to cover her laparoscopic surgery. The rest she has saved, as she still has her eyes set on treatment options overseas.
“I'm leaving the island soon,” she said hopefully. These two diseases are chronic, they aren't well researched, and controlling them is expensive. I work hard to be OK, but I cry a lot; I don't want to be here sometimes. But I'm dealing with it, because it's my journey and I have to take it as it is, and I feel like I was designed to do this. Just like with anything. I feel like if God created me and gave me this thing, then He must give me ways to get out of it.”