Endo Blog

The Gen X endo experience: What it’s like to live for 24 years undiagnosed
26 Jun, 2021 | 4 mins read |
The Gen X endo experience: What it’s like to live for 24 years undiagnosed

The passionate, resilient and endearing Pru Gibson from Kiama NSW, shares her experience of navigating life with a chronic illness that nobody believed was real.

Pru’s story

Growing up we all fantasise about the future through rose tinted glasses; Pru, for one, didn’t think her reality would unfold so bleakly. Whilst her peers were off travelling, studying, falling in love and buying houses—she was attending grief counselling, to help cope with the loss of control she felt over her life.

For Pru, living with endometriosis as a Gen X meant being one of the ‘unlucky girls’. She was the subject of eyerolls and snide comments, hearing ‘don’t be silly’ or ‘it’s just period pain, deal with it’, and being patted on the back and shoved out the door. As she explains, you learn to live with ridiculous amounts of pain and you learn to function, but that comes with a cost.

“Your self worth just disappears. You know there’s something wrong, but you’re being told by the medical system that you’re a hypochondriac. My favourite line was: ‘You just want male attention, so you’ve just come to me today for that.’ That’s what I was once told by a male doctor,” she recalls.

“People you trust and you put your faith in, are saying: ‘You’ve got a problem, but it’s not physical, it’s mental’, and you just start to think, okay, I’m a headcase.”

With a combination of chronic fatigue and debilitating pain from ‘bad periods’, Pru spent her twenties readjusting her plans and grappling with the loss of her teenage dreams. She wanted to travel and study a Bachelor of Education (Primary) and International Relations (Italian). But any money she saved ended up going into medical appointments, desperately trying to figure out why she kept getting sick, why she was tired all the time, why her skin was grey.

“And then of course I was feeling sorry for myself… so I bought a lot of shoes! Can’t travel, but at least I’ve got hot feet,” she laughs.

“You think you’re invincible in your twenties. Even though I was feeling crap, I thought I was going to get on top of it: ‘Oh, this will pass, I’ll be back on track’. I started believing it was all in my head, maybe I just needed a fresh start.”

Unfortunately, with each year that passed Pru got sicker; there was more pain and there was more heartbreak.

“As much as you say: ‘My illness doesn’t define me’, it does. It defines every part of your life, where you work, what you do,” Pru explains.

“People just don’t know how to be around you.”

From Pru’s perspective, living with undiagnosed endometriosis for 24 years destroyed both her personal and professional relationships. In the workplace she’s been labelled ‘lazy’, ‘psycho’, ‘unreliable’, and moved through countless jobs. In friendships, much like the other choices that seemed to be disappearing, so was her right to decline or accept social invitations to dinners, parties and nights out because her friends assumed she’d be too sick or unable to afford going so they wouldn’t bother with an invite. With romantic partners, she’s felt unworthy and ‘too much’ for some people, saying: “They just can’t cope and they cut and run”.

After a while, the accumulation of negative experiences and feeling misunderstood began to torment her mental health.

“I know everyone’s not an arsehole, I do appreciate that, but having your pain constantly dismissed chips away at your self worth. And you end up making really shit choices after a while.”

When talking about her experience of motherhood, Pru becomes teary eyed; explaining that she’s so grateful for twin daughters, who are now verging on 13 years old.

“My kids have seen a lot. They’ve seen me in pain on the floor in the foetal position crying. They’ve tried to get my mum [their grandmother] because they were so scared something was seriously wrong with me,” she explains.

“I’m sure it’s going to bode well for them, for compassion and things like that as they get older. But at the same time, they shouldn’t have seen me in that state ever.”

There have been some days when even something small like plaiting their hair became too difficult.

“Your coping skills just fly out the window. You just can’t parent because you’re in so much pain.”

At the age of 40, Pru reached breaking point. She got jack of the pain, of having no life, and spending every dollar she earnt trying to figure out what was wrong with her.

“I was diagnosed after I kicked up an almighty stink,” she laughs.

“Eventually this doctor just got sick of me turning up that he had to listen. He put me in for a hysterectomy convinced it wasn’t endo. They opened me up and what do you know— it was all over my body! On every organ right up to my lungs. It was everywhere: I’ll never forget what the doctor said when I woke up: ‘Oh! So you do have endometriosis’. Right, yeah, thanks for that.”

Now aged 47, Pru recently underwent a second surgery to remove a large endometrioma that had tucked itself into her small colon. She was also put into a medically induced menopause, having her second ovary removed to prevent the chance of developing ovarian cancer.

“My surgeon said to me: ‘Your life is going to take off now, it’s going to start. You won’t know yourself’ so that was like a great thing to hear,” she says.

Despite this and multiple friends claiming she already sounds like a different person, Pru is cautious in her optimism, saying: “There’s still that reservation hanging at the back, to be prepared for something to happen. And I think it’s just conditioning from decades of heartbreak and let down and disappointment.”

Through sharing her story Pru hopes to spread awareness and hopefully find a community of EndoWarriors. She’s currently studying natural therapies and wants to help people with chronic illness through alternative pain management such as acupuncture and Chinese herbs.

“I didn’t go to a doctor and get a diagnosis in my twenties. I was ignored. Not from one doctor but from many. And I don’t want that to happen to anyone else… I want to scream it from the rooftops! You need to stand up and make people listen. My two girls are 7– 8x more likely to also have endo. There’s no way in hell they are going to live my life, or my story. We have to make it better for the next generation.”

Written by,
Kellie Highet


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Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.