The pain that en­dures

Artist is on a mis­sion to raise aware­ness of ill­ness that af­fects mil­lions of women world­wide

Central and North Burnett Times - - READ - BY Kate Dodd

A30-YEAR-OLD woman had to un­dergo a rad­i­cal hys­terec­tomy after bat­tling the med­i­cal fra­ter­nity for years over the pain caused by her en­dometrio­sis. Amer­i­can artist Mab Graves de­scribed her con­di­tion as feel­ing like an an­gry oc­to­pus made of ra­zor blades was in her belly.

When she was 18, the artist was di­ag­nosed with the dis­ease that af­fects 10% of women of re­pro­duc­tive age – that means 176 mil­lion world­wide and about 550,000 Aus­tralian women.

En­dometrio­sis is caused when cells like the lin­ing of the uterus grow out­side the uterus. Un­di­ag­nosed, the con­di­tion can cause in­fer­til­ity and other se­vere con­di­tions such as en­dome­trial can­cer.

In Novem­ber, Ms Graves had to face her own di­ag­no­sis of in­fer­til­ity.

But al­though she had a name for her con­di­tion, she said she did not un­der­stand what it meant for her fu­ture health.

She de­scribed symp­toms such as nau­sea, pain, cramp­ing, sleep­less nights, bleed­ing for 10 days straight and only three or four days out of a month when she was not in pain.

That pain would force her to break her days into four or five-hour stints, where she would have to lie down and rest in be­tween be­cause her body was so ex­hausted.

Ms Graves said she didn’t know what a nor­mal pe­riod was like be­cause she didn’t have a nor­mal pe­riod.

She saw girls just “take a Mi­dol (pe­riod pain med­i­ca­tion) and go” when she was in “too much pain to func­tion”.

She said doc­tors did not do much to help her suf­fer­ing. “They didn’t lis­ten when I told them I really felt like there was some­thing wrong,” Ms Graves said.

She said doc­tors “treated me like I was a baby, like it was all in my head, or worse – like I was a junkie”.

In 2015, after bleed­ing for 11 months straight (she said doc­tors told her it was “just her body get­ting used to the birth con­trol” they were us­ing to help treat her pain), she came across an ar­ti­cle about a woman with en­dometrio­sis.

It wasn’t un­til then that she fi­nally un­der­stood what was go­ing on with her body.

“I started cry­ing. Her story was my story. I al­ready knew that I had it – I’d had three la­paro­scopic surgeries by that time to re­move it – but I didn’t know what it was or what it did,” she said.

“I was dumb­founded in just read­ing one ar­ti­cle. I knew ex­actly what was wrong with my body when mul­ti­ple doc­tors over sev­eral years had not thought ‘Maybe it’s the endo’!”

Ms Graves then went to her doc­tor in the US and asked for an­other surgery.

“I woke up 45 min­utes after go­ing in for that surgery. They opened me up, looked inside and sewed me right back up again. I had acute stage four en­dometrio­sis and it was too far gone,” she said.

“My or­gans were too fused and it was in­op­er­a­ble. After years of ques­tion­ing my strength, san­ity and telling doc­tors there was some­thing wrong, it was caught too late.”

Last year, she had 10 months of Lupron chemo­ther­apy to try to shrink the growth, but she found out in Novem­ber the in­jec­tions had failed.

A few weeks later she un­der­went a rad­i­cal hys­terec­tomy. “They re­moved my uterus, ovaries, fal­lop­ian tubes, cervix ... ev­ery­thing. After all the months of treat­ments and fight­ing I thought I was ready for it, but I was op­ti­misti­cally naive,” she said.

“I had to go through sort of a crash course in the stages of grief, burst­ing into tears at com­pletely un­ex­pected mo­ments, feel­ing too much anx­i­ety to sleep and strug­gling with anger.

“The loss I felt was so deep, I strug­gled with things like how los­ing those or­gans made me feel as a per­son and even deeper – as a woman.”

A few days be­fore her fi­nal surgery, Ms Graves did a photo shoot with pho­tog­ra­pher Drew Endi­cott to raise aware­ness of en­dometrio­sis.

“He’s an in­cred­i­ble artist and I wanted to cap­ture where I was with the strug­gle at that crys­tallised mo­ment,” she said.

En­dometrio­sis Aus­tralia As­so­ci­a­tion med­i­cal di­rec­tor Pro­fes­sor Ja­son Ab­bott said en­dometrio­sis pa­tients of­ten en­dured pain worse than women who had can­cer.

“(En­dometrio­sis) can have a very sig­nif­i­cant and long-term ef­fect be­cause th­ese are young women and they’re in the most pro­duc­tive stage in their life, both in terms of work pro­duc­tiv­ity, fam­ily pro­duc­tiv­ity and re­pro­duc­tive pro­duc­tiv­ity and it can have a huge ef­fect on them, par­tic­u­larly if they are not able to have a fam­ily and would very much like to have chil­dren,” he said.

Prof Ab­bott said even after the symp­toms eased – in­clud­ing pain be­tween and dur­ing pe­ri­ods, pain dur­ing in­ter­course or when bow­els are work­ing, or when a cou­ple are try­ing to get

‘‘ (En­dometrio­sis) can have a very sig­nif­i­cant and long-term ef­fect be­cause th­ese are young women and they’re in the most pro­duc­tive stage in their life... Pro­fes­sor Ja­son Ab­bott

preg­nant and can’t – the psy­cho­log­i­cal scar­ring was life­long.

“The key here is that pe­riod pain is very com­mon but pe­riod pain that stops you in your tracks is not and if you are hav­ing to take time off school or time off work for pe­riod pain then it is time to get that checked out and see a gen­eral prac­ti­tioner or some­one who knows about en­dometrio­sis and is a health care pro­fes­sional,” he said.

The pro­fes­sor said the dis­ease af­fected the same num­ber of women as those who have asthma and di­a­betes.

Early on, Ms Graves said she started talk­ing on­line about her jour­ney.

“Read­ing about an­other girl’s story helped me dis­cover what was wrong and I wanted to pay that for­ward,” she said.

“I started a hash­tag called the #Sick­Girl­sClub as a place to talk about liv­ing life with en­dometrio­sis, help girls con­nect, an­swer ques­tions and raise aware­ness.”

Since she started the club, she said she has talked to hun­dreds of women and the thing she’d found al­most all “endo girls” had in com­mon be­sides the crip­pling pain, was the shame over it.

“The most im­por­tant thing I have taken from this jour­ney is an in­ter­nal fire to make sure this doesn’t have to happen to any other girl my voice can touch,” she said.

“It was too late and too ad­vanced for me, but this doesn’t have to be an­other girl’s story.

“This gen­er­a­tion of girls needs our voices. Our so­ci­ety has a weird stigma about women’s is­sues. We don’t want to talk about th­ese things and we’re taught not to talk about them. We are taught by faces and re­ac­tion that those things are gross and there’s noth­ing worse than feel­ing like your body is gross.

“We end up suf­fer­ing in si­lence, fear and con­fu­sion about what’s go­ing on with our bod­ies – not sure if things are nor­mal or if there are prob­lems.

“I feel like this needs to change. Half of the world’s pop­u­la­tion is women and the other half is men who grow up to be hus­bands, fa­thers, part­ners, broth­ers and friends of those women.

“Th­ese are things we all need to talk about and be aware of.” Prof Ab­bott said women didn’t talk to other women, let alone men, about their pe­ri­ods and that was some­thing that needed to change.

“Just about ev­ery woman men­stru­ates and it’s a nor­mal part of her life. It’s a reg­u­lar func­tion that’s oc­cur­ring if she’s not on any hor­monal sup­pres­sion about a dozen times a year,” he said.

He said part­ners of women, even those with­out en­dometrio­sis, needed to un­der­stand that hav­ing pe­ri­ods was painful.

“Lots of part­ners un­der­stand and are sym­pa­thetic, but also a bit pow­er­less and strug­gle with how to re­spond,” he said.

“Just be­ing there and hav­ing an open dis­cus­sion is the first part of that.

“We’re never afraid to say that we’ve got di­a­betes or we’ve got asthma and we suf­fer with th­ese con­di­tions, but for some rea­son gy­ne­co­log­i­cal con­di­tions and men­stru­a­tion prob­lems are not some­thing that’s spo­ken about.

“We need to lose that taboo and really start be­ing very open about this.”

Ms Graves had this mes­sage for other women across the world: “For girls out there who are read­ing this – pe­riod pain is to­tally nor­mal, but crip­pling, de­bil­i­tat­ing pain is not.

“Do not let any­one treat you like you are be­ing a baby or dis­miss you.

“You are not crazy. It’s not all in your head and you don’t have to live like this.

“My story is a cau­tion­ary tale and ended in the worst way be­cause it wasn’t caught in time.

“If you get help and catch it early there is many a treat­ment out there. Don’t wait and don’t take no for an an­swer.”

They re­moved my uterus, ovaries, fal­lop­ian tubes, cervix ... ev­ery­thing. After all the months of treat­ments and fight­ing I thought I was ready for it, but I was op­ti­misti­cally naive.

PHOTO: CON­TRIB­UTED

Mab Graves had acute stage four en­dometrio­sis and, last year, after Lupron chemo­ther­apy failed, she had a rad­i­cal hys­terec­tomy.

PHOTO: DREW ENDI­COTT

◗ A few days be­fore her fi­nal surgery, artist Mab Graves did a photo shoot with Drew Endi­cott to re­flect her feel­ings and raise aware­ness of en­dometrio­sis.

PHOTO: CON­TRIB­UTED

◗ Mab Graves is a Amer­i­can pop sur­re­al­ist painter who has shared her jour­ney with en­dometrio­sis on­line.

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