The pain that endures
Artist is on a mission to raise awareness of illness that affects millions of women worldwide
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
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.
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.”