Ear­li­er this month, Aus­tralian con­ser­va­tion­ist Bin­di Ir­win, daugh­ter of the late Steve Ir­win, cap­tured in­ter­na­tion­al at­ten­tion by shar­ing her long, painful jour­ney with en­dometrio­sis.

Af­ter en­dur­ing over a decade of mis­di­ag­noses and de­bil­i­tat­ing symp­toms, she un­der­went surgery, dur­ing which time doc­tors re­moved many en­dometrio­sis le­sions, an ovar­i­an “choco­late cyst,” her ap­pen­dix, and even re­paired a her­nia caused by child­birth.

In her emo­tion­al so­cial me­dia up­dates, Ir­win re­vealed that she is fi­nal­ly ex­pe­ri­enc­ing re­lief from the con­stant pain that once made ba­sic dai­ly life feel im­pos­si­ble. Her will­ing­ness to speak open­ly has res­onat­ed with many—es­pe­cial­ly giv­en how fre­quent­ly women’s pain is dis­missed or min­imised in med­ical con­texts.

En­dometrio­sis, a dis­ease that I have fre­quent­ly high­light­ed in this col­umn, af­fects one in ten women world­wide, but of­ten takes years to di­ag­nose due to its var­ied and some­times sub­tle symp­toms.

Of­ten over­shad­owed by oth­er more wide­ly recog­nised con­di­tions, en­dometrio­sis is a silent strug­gle that many women en­dure for years, if not decades, be­fore re­ceiv­ing a prop­er di­ag­no­sis and find­ing an ef­fec­tive treat­ment plan.

For those un­fa­mil­iar, en­dometrio­sis oc­curs when tis­sue sim­i­lar to the lin­ing in­side the uterus—known as the en­dometri­um—be­gins to grow out­side the uterus, typ­i­cal­ly on the ovaries, fal­lop­i­an tubes, or the tis­sue lin­ing the pelvis. This tis­sue con­tin­ues to act like it would in­side the uterus, thick­en­ing, break­ing down, and bleed­ing with each men­stru­al cy­cle. How­ev­er, un­like the tis­sue in the uterus, which ex­its the body through men­stru­a­tion, this mis­placed tis­sue has nowhere to go, lead­ing to in­flam­ma­tion, pain, and, over time, scar tis­sue and ad­he­sions.

A “choco­late cyst,” tech­ni­cal­ly known as an ovar­i­an en­dometri­oma, is a cys­tic growth filled with old blood, re­sult­ing from en­dome­tri­al tis­sue ad­her­ing to the ovaries. Such cysts can cause se­vere pelvic pain, in­flam­ma­tion, in­fer­til­i­ty, and even the risk of rup­ture if left un­treat­ed.

The hall­mark of en­dometrio­sis is chron­ic pain, of­ten se­vere and de­bil­i­tat­ing, par­tic­u­lar­ly dur­ing men­stru­a­tion, but al­so dur­ing in­ter­course, bow­el move­ments, and uri­na­tion. Many women with en­dometrio­sis ex­pe­ri­ence pain that is dis­missed as “nor­mal” by fam­i­ly mem­bers, friends, or even health­care providers.

The so­ci­etal ex­pec­ta­tion that men­stru­a­tion should be painful—or that pain is a part of be­ing a woman—con­tributes to the de­lay in di­ag­no­sis. Women are of­ten told that “it’s just part of be­ing a woman” or “it’ll get bet­ter with age,” which can leave them feel­ing iso­lat­ed, frus­trat­ed, and un­heard.

En­dometrio­sis is not just a med­ical con­di­tion—it is a so­cial is­sue. The de­lay in di­ag­no­sis many women ex­pe­ri­ence of­ten stems from dis­mis­sive at­ti­tudes to­ward men­stru­al and pelvic symp­toms.

Ir­win her­self en­dured 13 years of pain be­fore re­ceiv­ing a di­ag­no­sis in 2023. Her sto­ry high­lights a broad­er sys­temic fail­ure: fe­male pain is still too of­ten nor­malised or ig­nored.

She has now ad­mit­ted that she was made to feel “ashamed” of the en­dometrio­sis pain.

“Young girls and women shouldn’t feel alone with pain in the dri­ver’s seat of their lives,” she wrote in an In­sta­gram post to her 5.7 mil­lion fol­low­ers.

“We need to take away the stig­ma of talk­ing about women’s health. It’s time to have open dis­cus­sions and make change on a glob­al scale.”

Ir­win’s orig­i­nal 2023 In­sta­gram post on her strug­gles with en­dometrio­sis got more than 1.1 mil­lion likes, with her lat­est up­date at­tract­ing about 260,000 likes.

It is hoped that per­son­al sto­ries like hers can be cat­a­lysts for change. Ir­win’s open­ness has drawn praise from en­dometrio­sis ad­vo­ca­cy net­works, sup­port­ing oth­ers to break their si­lence and de­mand bet­ter care. En­dometrio­sis should no longer be viewed as a rare or niche con­di­tion, but as a sig­nif­i­cant pub­lic health is­sue that de­mands at­ten­tion and re­sources.

Bin­di Ir­win’s pub­lic jour­ney ar­rives at a mo­ment when so­ci­ety is be­com­ing in­creas­ing­ly re­cep­tive to dis­cus­sions about women’s re­pro­duc­tive health. Her case al­so em­pha­sis­es how high-pro­file ad­vo­ca­cy can lead to im­prove­ments—be it im­proved train­ing for health pro­fes­sion­als, ear­li­er re­fer­rals, or in­creased fund­ing for en­dometrio­sis care and re­search.

When women like Ir­win share their health jour­neys, it en­cour­ages the med­ical com­mu­ni­ty and so­ci­ety at large to lis­ten dif­fer­ent­ly, act faster, and sup­port women’s health with the em­pa­thy and ur­gency it de­serves.