Getting her life back

French teacher and interpreter, Joleen Meharris is one in this 176 million and she sat with WMN to explain endometriosis, the features of her own condition, her upcoming life-changing surgery and her commitment to raising awareness about the condition.

The cause of endometriosis is yet unknown but one such theory is retrograde menstruation, where the menstrual blood, instead of leaving the body, _ ows back through the fallopian tubes into the pelvic cavity. Immune disorders as well as a genetic predisposition to growing the abnormal tissue are among several other theories.

Pelvic pain is the most common symptom, and can often be accompanied by painful periods; discomfort during bowel movements, heavy menstrual bleeding or bleeding between periods, pain after sex, pain in the lower abdomen before and during menstruation, cramps one or two weeks around menstruation, heavy menstrual bleeding or bleeding between periods, and infertility.

The condition can make its presence known as early as the beginning of menstruation but many women don’t begin to experience the symptoms until years down the line. Conversely, endometriosis can be asymptomatic in many women, only showing itself through infertility. “It started when I was 24,” Joleen recalled. “I had just begun working and I would get extreme cramps that would have me doubling over in pain at the office.” Without aggressive treatment, which is in short supply locally, the symptoms can become incrementally worse. “As the years progressed, the pain increased from being just during menstruation.” Joleen referred to the sensation as a “similar cramping” but lasting anywhere from a week to ten days afterward.

“Basically, you’re unwell for half of the month.”

With all the intricate difficulties, there is no solution-in-a-bottle. Many of the current treatments are temporary at best, and often offer some complications of their own. “Painkillers don’t help,” Joleen explained. “If I take Tramacet, I get a little relief but nothing else works.” She continued that although many women who suffer from endometriosis take morphine, she refuses to take the drug to avoid the high risk of addiction.

Taking artificial hormones or GnRH (Gonadotropin-releasing hormone) is another means of controlling the symptoms. “The drug induces a faux menopause with the aim of suppressing the symptoms and to reduce the growth of endometriosis,” Joleen explained, having made use of this option herself. “It gives you a sneak peek of what menopause is like – cranky moods and hot flashes – which are not very nice,” she chuckled.

While GnRH does offer relief from the symptoms, it can only be taken for up to six months at a time, after which the symptoms naturally return, often worse than before. Additionally, the drug brings with it yet another, more lasting menopausal feature, that of osteoporosis.

Hysterectomy is another course of action in the attempt to eliminate the symptoms. But Joleen explained it’s been proven that they don’t provide a cure. “Because… the tissue is found outside of the uterus, removing it won’t help,” she told WMN, explaining that she knows women who were unsuccessful in their pursuit of relief through hysterectomy. “It pushes your body into early menopause as well,” she warned.

With an arsenal of discomfort-causing effects, endometriosis can essentially alter the quality of a woman’s life, which is why Joleen has been so keen on pursuing the surgery that is carded to take place at the Center for Endometriosis Care in Atlanta next month. “It’s challenging being a wife and stepmother,” she told WMN. “I’m unable to do anything and it’s difficult to make plans; I have to ask myself, ‘am I going to be well this week?’”

The American Society of Reproductive Medicine (ASRM) established a four-tiered staging system to classify the advancement of the condition and the severity of the characteristics. Joleen suffers with stage-four endometriosis, marked by severe pelvic inflammation and adhesion.

Adhesion refers to the blood causing the surrounding organs to be “fused together.” In Joleen’ case, her uterus is stuck to her bowel. “During menstruation, I have debilitating pain; I can go to the washroom if need be but I’m unable to do my daily duties,” she explained. “About two years ago, I developed severe chest pains and back pains, which make it impossible for me to lie down.” Joleen said she would sleep sitting upright even for up to ten days after menstruation.

Amid the numerous options and the daily coping, Joleen has managed to find the silver lining. “My faith has definitely grown and I’ve learnt place a lot more trust in God,” she admitted. “I’ve grown more humble because I know what it is to be lying in bed, at your wit’s end and being unable to do very much.” She also acknowledged her husband of four years, Daniel Simpson as an unwavering support system. “It hasn’t been easy but [the condition] has brought us closer.” Her capacity for empathy has also grown, particularly for others who are ill, whether they suffer from endometriosis or not.

After a surgery attempt in May of last year that showed her and her doctors how advanced her condition was, Joleen did some research and resolved to have a procedure done abroad. “I was to have a regular laparotomy (an incision into the abdomen) to remove the fibroids and the endometriosis, but when the doctors saw that my ovaries and fallopian tubes weren’t identifiable, they were unable to do anything.”

The procedure that she will undergo is called excision and it refers to lasering off the adhesion and separation of the organs, which has been proven to curb the problem. Excision has been shown to be more effective than ablation, another invasive procedure which superficially removes the abnormal tissue, also using laser technology.

The #HelpMyEndo movement, an online presence to create awareness that serves as a crowd-funding enterprise to finance Joleen’ surgery was founded after her unsuccessful surgery last year. “I needed the help of friends and well-wishers to get my life and my health back,” she asserted. After a barbeque and a well-received health fair, both held earlier this year, she is grateful for the support and concern sent her way.

After her surgery next month, her desire is to return home to develop initiatives that support women in the early stages of the condition, to enable them to nip its progression in the bud. She also wants to help women whose endometriosis is at an advanced stage.

Additionally, Joleen wishes to raise further awareness of the condition. “There’s still a long delay in the diagnosis,” she explained. “Doctors need to be more aware of the condition as well as to be up to speed with treatments.” She advocates for a possible collaboration between the Ministries of Health and Education to have the word spread in schools about the condition and how severely it can affect young women. “Coming out of this, I want to give back,” she affirmed.

Joleen’ final fundraiser is a gospel concert, entitled Never Give Up, scheduled for June 18 at National Academy for the Performing Arts at 6pm. Among the acts are Kay Alleyne, H2OPhlo, the Lydians Male Quartet and Voces Jovenes parang band.

Visit Help My Endo TT on Facebook for further information. Joleen Paula Joleen can be reached via (868) 719-5397 for tickets to Never Give Up and T-shirt sales. Donations can be made to FCB Account Number 1592999