Fayola K J Fraser
Allia Jones-Khan has been living with endometriosis for the past 20 years. At 35 years old, she knew from a young age that the insufferable period pain that she was experiencing was nothing normal, but she was dismissed by family members, peers and teachers when she spoke up about it.
Jones-Khan remembers during her time in high school, feeling especially devastated, as she would tell her mother repeatedly that she was in too much pain to go to school, and most times was simply sent to school armed with a packet of painkillers.
“In the space of five minutes, I would go from feeling mild period cramps to being flat out in pain,” she recalled, and when she was sent to school, often spent the great majority of time during her monthly period in the school’s sick bay. She described the feelings of deep isolation even from her friends in school, who felt she was exaggerating the pain, and “it couldn’t be that bad,” as they were all similarly experiencing their periods without that level of pain.
Jones-Khan’s peers viewed her “exaggeration” as a means to “duck” class or get out of tests, not a legitimate incapacitating pain. As someone who now has a child, she described the pain as ten times more severe than the pain of childbirth, which she performed unmedicated. “On a scale of one to ten, with ten being the most painful, childbirth was seven, and endometriosis is nine,” she said.
“Suffering through that pain for years gave me a broad back,” she laughed, describing the way that she was forced to function even in the midst of it. Endometriosis can present symptoms at any time, not just during a woman’s period, and Jones-Khan had a particularly bad bout of pain while sitting her CAPE Advanced Level History examination, and was forced to shoulder the pain and complete the exam. As she also suffered from symptoms of diarrhoea and nausea because of endometriosis, she was faced with “a nasty bout of nausea” during the exam and ultimately failed as a result.
At 18 years old, Jones-Khan’s mother finally understood that the pain she was experiencing could not be chalked up to regular period pain and took her to an OB-GYN to perform a test. The doctor performed an ultrasound and found a few small fibroids, and told Khan that the fibroids were the cause of the pain. Initial relief washed over her when he sent her away with what he believed to be a diagnosis, painkillers and encouragement to change her diet and incorporate exercise to help shrink or dissolve the fibroids. Although Jones-Khan expressed to him that she had been taking painkillers to no avail, he insisted that the combination of lifestyle changes plus the painkillers would finally have an effect.
After following the doctor’s advice for the next five years and seeing no effect, Jones-Khan became exceedingly frustrated. She entered the workforce, working at an advertising firm, and spent many days when she had her period doubled over in the car, writhing in pain. Her contract stipulated that she had only ten sick days for the year, but luckily for her, she had an understanding boss who allowed her the time off, empathising with the nature of her condition.
However, this drew resentment from her coworkers who felt she was given special treatment, and Jones-Khan felt once again isolated and ended up leaving the company. “Advocating for myself became exhausting,” she said, and she felt depressed and anxious around her colleagues.
“Endo has affected my entire life,” she said. “My professional life, my relationships, my mental health.” Jones-Khan also described the way she felt marginalised in her family unit and romantic relationships until she eventually found the man who would become her husband. Jones-Khan described that even the issues of pelvic pain, painful intercourse and excessive bleeding affected her in her marriage, but her husband proved to be understanding and supportive through her struggle.
At 30, she faced her biggest challenge yet–Jones-Khan and her husband were trying for over a year to conceive a child and were unsuccessful. In a study published by VeryWell Health, the rate of conception by women generally during their fertile period is 20 per cent, but the rate of women with endometriosis is only two per cent, and it is estimated that infertility affects up to 50 per cent of women with endometriosis. When she went to her doctor, he suggested that there was no real problem and that she and her husband could continue trying. Eventually, a friend recommended that she visit the TT Fertility Clinic. When she explained her symptoms to the doctor, the doctor suggested that Jones-Khan go through testing for endometriosis, as her pain symptoms suggested a possible diagnosis.
Finally, when she was 32 years old, Jones-Khan was diagnosed with endometriosis following a laparoscopy, which detected the huge amounts of scar tissue that had compiled over the years. The doctor suggested that she had stage 3 endometriosis, with dense adhesions forming scar tissue and cysts on her ovaries. Ovarian endometriomas form when endometrial tissue attaches to an ovary, and when found on the reproductive organs, make it very difficult to get pregnant. Jones-Khan underwent laparoscopic excision surgery to remove the scar tissue from her ovaries but was told that because endometriosis is primarily hormonal, it could return at any time. She, however, was poised to take any possible route that could reduce her pain.
Jones-Khan described her first post-surgery period as “miraculous, pain-free and life-changing.” She laughed remembering her initial words to her husband after her first period–“So this was how it’s supposed to feel.” In 2022, at 33 years old, Jones-Khan became pregnant with her first child, a boy, and was overjoyed that the surgery had remedied her issues. She now raises awareness for endometriosis and has founded a community of women by creating a Facebook group for Endo sufferers. Her goal is to make sure that all women suffering from any kind of pain are heard and seen. “It took me over 15 years to know what was causing the pain,” she said, “can you imagine having pain for that long?” It is therefore her life’s mission to bring endometriosis to the fore, to encourage doctors to not downplay or dismiss women’s symptoms, and parents to listen to young women who articulate their pain.
