Solv­ing the PCOS puz­zle

Poly­cys­tic ovary syn­drome is so damn com­plex it flies un­der the radar for docs and women. But change is com­ing

Women's Health Australia - - DECEMBER - By Lau­ren Wil­liamson

Even defin­ing poly­cys­tic ovary syn­drome is a tan­gled web. WH cuts through the com­plex­ity in this re­port

wWhen she went to see her GP to ask about her wors­en­ing acne, Kirra Peters* never ex­pected to hear the words ‘poly­cys­tic ovary syn­drome’ (PCOS). And the 26-yearold pub­lic ser­vant cer­tainly didn’t think she’d leave her ap­point­ment with lit­tle more than the knowl­edge that she might have a con­di­tion she’d never even heard of.

“I thought the doc­tor might write a [re­fer­ral] to a der­ma­tol­o­gist,” says Peters. “But when they men­tioned ‘PCOS’, my head went into spin mode be­cause

I walked out still know­ing noth­ing.”

It took eight months of ap­point­ments with GPS, spe­cial­ists and a gy­nae­col­o­gist, plus an ul­tra­sound and blood test, for Peters to be of­fi­cially di­ag­nosed. And even though 10 to 13 per cent of Aussie women are af­fected by PCOS, this kind of di­ag­no­sis de­lay isn’t un­usual. Stats pub­lished in The Jour­nal of Clin­i­cal En­docrinol­ogy & Me­tab­o­lism show it can take up to two years for women to be di­ag­nosed, with an es­ti­mated 70 per cent still not aware they have PCOS. But, thanks to a team led by re­searchers from our shores, that could all be about to change.


Call­ing PCOS ‘com­plex’ is kind of an un­der­state­ment. In fact, a def­i­ni­tion has only just been of­fi­cially agreed on. We’re talk­ing about a mul­ti­sys­tem syn­drome with re­pro­duc­tive, meta­bolic and emo­tional im­pli­ca­tions. These can in­clude – wait for it – in­fer­til­ity, preg­nancy com­pli­ca­tions, di­a­betes, in­sulin re­sis­tance, weight strug­gles, acne, hair growth (where you’d rather it wasn’t), anx­i­ety and de­pres­sion. There’s no set-in-stone cause (there are the­o­ries around ge­net­ics and epi­ge­net­ics) or cure (there’s some promis­ing re­search, though). All of this makes PCOS a mine­field for women and docs alike.

“It’s a real gap for women.

They’re get­ting poor qual­ity of care, de­layed di­ag­no­sis, high vari­abil­ity in man­age­ment and they’re just not well looked af­ter,” says Pro­fes­sor He­lena Teede, direc­tor at the Monash Cen­tre for Health Re­search and Im­ple­men­ta­tion and codi­rec­tor at the Cen­tre for Re­search Ex­cel­lence in Poly­cys­tic Ovary Syn­drome (CRE POS). “It’s not that health providers [don’t] care, it’s just that it’s a com­plex con­di­tion and it wasn’t well un­der­stood.”

Clear­ing a path through the health maze is a team led by Teede, who in July un­veiled a ground­break­ing set of in­ter­na­tional PCOS guide­lines. The doc­u­ment has been decades in the mak­ing, worked on by more than 3500 health pro­fes­sion­als, con­sumers and suf­fer­ers from more than 71 coun­tries. It lays out the gold-star, ev­i­dence-based prac­tice for the as­sess­ment and man­age­ment of PCOS. Women and pros can ac­cess the info via the Monash web­site and an ASKPCOS app. In short, it’s a game changer.


A driv­ing fac­tor be­hind this global col­lab? The drawn-out di­ag­no­sis process, which was one of the key com­plaints from women with PCOS, ex­plains Pro­fes­sor Robert Nor­man, co-direc­tor at CRE POS, who also worked on the guide­line. “It was ba­si­cally pa­tients say­ing to us, ‘I’ve been to mul­ti­ple doc­tors and they all tell me dif­fer­ent things,’” he says.

Thanks to the new pa­per, pro­fes­sion­als now have the most ac­cu­rate way to work out whether or not a woman has PCOS. The key symp­toms that form di­ag­no­sis? An ir­reg­u­lar pe­riod as well as OTT lev­els of an­dro­gens (male sex hor­mones, such as testos­terone), ei­ther found in the blood or re­flected in ex­cess hair growth or acne. This new ap­proach nixes the need for an in­ter­nal ul­tra­sound, the pre­vi­ous di­ag­nos­tic go-to. “If a woman has one [symp­tom] or the other but not both, then you can do an ul­tra­sound but you don’t need to up­front,” Teede says. “That makes it eas­ier, less costly, less in­va­sive and more ac­cu­rate to make the di­ag­no­sis.”


Of course, di­ag­no­sis is just step one. Next up: manag­ing the con­di­tion. Ap­proaches to this vary (no sur­prise there) but can be ef­fec­tive, rang­ing from life­style moves (healthy diet and ex­er­cise) to meds in­clud­ing the oral con­tra­cep­tive pill, and tack­ling psy­cho­log­i­cal con­cerns such as anx­i­ety. Re­ally, the path you choose de­pends on your pri­or­i­ties.

For Mad­die New­man, 30, it’s her fer­til­ity. Af­ter be­ing di­ag­nosed with PCOS at 16, she went on the con­tra­cep­tive pill. Now, New­man and her hus­band are keen for a baby, but they’ve “been try­ing to con­ceive for one year with­out any luck,” she says. “We’re scram­bling to look for an­swers and find out what we can do to make this hap­pen.”

New­man isn’t alone – PCOS is the pri­mary cause of fe­male in­fer­til­ity, with 70 per cent of PCOS suf­fer­ers strug­gling to fall preg­nant, ac­cord­ing to the new pa­per.

De­spite this, one of the big­gest mis­con­cep­tions is that PCOS will pre­vent you ever hav­ing a fam­ily. That’s a mes­sage Teede wants us to know: when you have PCOS, hav­ing kids is pos­si­ble with a lit­tle ex­tra plan­ning and help. “Most women with PCOS will have a fam­ily, and the av­er­age fam­ily size is sim­i­lar to those with­out PCOS,” Teede says. “How­ever, most need some as­sis­tance, usu­ally tablets to achieve preg­nancy. IVF is rarely needed.”

The pres­i­dent of the Poly­cys­tic Ovary Syn­drome As­so­ci­a­tion of Aus­tralia, Veryan Mcal­lis­ter, was di­ag­nosed at 21. “I had a gy­nae­col­o­gist say to my face I was a fer­til­ity night­mare,” she says. It took ex­pert ad­vice, life­style changes and meds, “but with two healthy chil­dren, I’m liv­ing proof that’s not the case”. She adds, “PCOS is so com­mon. The more we talk about it, the more we can nor­malise [it] and the more sup­port we can pro­vide.”

Sus­pect some­thing’s up? Chat to your doc – it could be the most im­por­tant talk you ever have.


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