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.