Fay­ola K J Fras­er

En­dometrio­sis Aware­ness Month is ob­served an­nu­al­ly in March to en­light­en peo­ple about the con­di­tion that af­fects more than 200 mil­lion women world­wide. It is an un­der­diag­nosed con­di­tion, and women of­ten live in se­vere, im­mo­bil­is­ing pain for many years while suf­fer­ing from en­dometrio­sis.

A BBC study pub­lished in 2019 sur­veyed 13,500 women and pub­lished re­sults that stat­ed one in ten women were af­fect­ed by this con­di­tion, with those pre­sent­ing symp­toms wait­ing through an av­er­age de­lay pe­ri­od of sev­en years be­fore be­ing cor­rect­ly di­ag­nosed.

Ac­cord­ing to Dr Vanes­sa Har­ry, an ob­ste­tri­cian-gy­nae­col­o­gist in T&T,

en­dometrio­sis is a dis­ease where the en­dometri­um (the in­ner lin­ing of the womb) is found out­side of the womb, in one of many places–in­clud­ing the ovaries, and the pelvic walls–and can af­fect any or­gan in the body. When the en­dometri­um is in its cor­rect place, the lin­ing is shed month­ly dur­ing the men­stru­al cy­cle. How­ev­er, when it is out of place, as with en­dometrio­sis, it can­not be shed and thus caus­es sig­nif­i­cant pain. Hav­ing no way to es­cape the body, the blood be­comes trapped, lead­ing to in­flam­ma­tion, pain and the for­ma­tion of scar tis­sue or ad­he­sions.

De­tec­tion

A com­mon mis­con­cep­tion is that if women pro­duce a reg­u­lar ul­tra­sound scan, they there­fore do not have en­dometrio­sis. Dr Har­ry in­di­cates that en­dometrio­sis can­not be picked up from an ul­tra­sound scan or reg­u­lar ex­am­i­na­tion; it needs a di­ag­nos­tic la­paroscopy.

This is the gold stan­dard for en­dometrio­sis di­ag­no­sis, which some doc­tors do not ad­here to, and sub­se­quent­ly in­di­cate to women that once their ul­tra­sounds do not show en­dometrio­sis, they do not have it.

Dr Har­ry said that dur­ing teenage­hood, many women be­gin to ex­pe­ri­ence de­bil­i­tat­ing stom­ach, pelvic or back pain dur­ing their pe­ri­od, and in some cas­es, even out­side of their pe­ri­od. This pain can range from mild to mod­er­ate dis­com­fort dur­ing a men­stru­al pe­ri­od to com­plete­ly in­ca­pac­i­tat­ing pain that can hap­pen at any time. The con­di­tion typ­i­cal­ly starts when a per­son is young and the pain can wors­en with age if left un­de­tect­ed and un­treat­ed. Some women are so crip­pled by the pain, they have to miss school or work, and their con­di­tion is not recog­nised or dis­missed by oth­ers.

Oth­er symp­toms in­clude painful in­ter­course, painful bow­el move­ments, leg and back pain, ir­reg­u­lar bleed­ing as well as fer­til­i­ty is­sues and dif­fi­cul­ties get­ting preg­nant.

Treat­ment

One of the the­o­ries of how en­dometrio­sis de­vel­ops is called “ret­ro­grade men­stru­a­tion” where the blood flows the op­po­site way it is sup­posed to–back­wards in­to the fal­lop­i­an tubes and the stom­ach and pelvis and gets de­posit­ed in sev­er­al sites. There is no cure for en­dometrio­sis, but the treat­ment in­volves sur­gi­cal ex­ci­sion of the en­dometri­ot­ic de­posits which can be done la­paro­scop­i­cal­ly. Some women re­quire re­peat­ed surg­eries, as what fu­els en­dometrio­sis is the hor­mones pro­duced by the ovaries, so once women are not menopausal, it can re­cur.

Med­ical treat­ments in­clude the com­bined oral con­tra­cep­tive pill or con­tra­cep­tive in­jec­tions.

The symp­toms of en­dometrio­sis do not on­ly cause phys­i­cal pain but men­tal degra­da­tion, and as in­di­cat­ed by the BBC study, over half the women sur­veyed who suf­fered from en­dometrio­sis have had sui­ci­dal thoughts. Psy­choso­cial out­comes of­ten in­clude re­duced qual­i­ty of life, poor self-es­teem and even symp­toms of de­pres­sion and anx­i­ety.

The strug­gle

Ac­cord­ing to Dr Har­ry, en­dometrio­sis, as well as oth­er is­sues caus­ing fe­male pain, are of­ten sad­ly over­looked, and fe­male pain is un­der­diag­nosed leav­ing women to suf­fer. Quot­ing a study pub­lished in 2001 in the Jour­nal of Law, Med­i­cine and Ethics, “af­ter heart by­pass surg­eries, male pa­tients were

giv­en painkillers while fe­males were giv­en seda­tives.” The rea­son­ing was that women were viewed as be­ing anx­ious rather than in pain. Fur­ther­more, even when women were giv­en painkillers, they were giv­en a low­er dose than their male coun­ter­parts, de­spite ac­count­ing for body-size dif­fer­ences.

Dr Har­ry said, from her ob­ser­va­tion, women strug­gle to be be­lieved by doc­tors, and the sig­nif­i­cance of their pain is viewed with scep­ti­cism. De­spite many ma­jor med­ical ad­vances in re­cent years, “women’s health still re­mains un­der­fund­ed and of­ten ne­glect­ed. Women are more like­ly than men to be mis­di­ag­nosed and not tak­en se­ri­ous­ly, and there is ev­i­dence show­ing this. De­spite ob­vi­ous phys­i­o­log­i­cal and phys­i­cal dif­fer­ences, sci­en­tists have his­tor­i­cal­ly ex­clud­ed fe­male sub­jects in re­search stud­ies, with men be­ing seen as the hu­man av­er­age.”

Un­der­diag­nosed

In T&T, en­dometrio­sis is one of the top two un­der­diag­nosed con­di­tions in the

coun­try. Ac­cord­ing to the T&T En­dometrio­sis As­so­ci­a­tion, whose aim is to spread aware­ness about the con­di­tion, it is alarm­ing how many women are in­struct­ed by doc­tors to un­der­go un­nec­es­sary surg­eries and even hys­terec­tomies due to mis­di­ag­nosed en­dometrio­sis.

It is crit­i­cal that doc­tors fa­mil­iarise them­selves with signs and symp­toms and the cor­rect di­ag­no­sis pro­ce­dures for en­dometrio­sis. It is sim­i­lar­ly im­por­tant for em­ploy­ers, in­sur­ance com­pa­nies, and schools to recog­nise the grav­i­ty of this con­di­tion, so women who are in pain due to en­dometrio­sis can be seen, heard and un­der­stood.