A young woman who needed a hysterectomy to treat chronic endometriosis has detailed the traumatic process she had to go through, with a surgeon who told her she had a responsibility to reproduce.
Experts and patients say the medical system discriminates against women who want a hysterectomy, under the assumption they will want to have children (file image). Photo: 123RF
A hysterectomy removes the uterus as a treatment for the painful bleeding caused by endometriosis during a woman's period.
But experts and patients say the medical system discriminates against women who want the surgery, under the assumption they will want to have children.
Three years ago Grace Hall was diagnosed with endometriosis. The tissue that normally lined the inside of her uterus was growing outside of it.
The condition affects one in 10 women, causing painful cramps and excessive bleeding during menstruation.
Treatments range from painkillers, hormone therapy, surgery to remove the tissue, or for the most extreme cases, a hysterectomy.
That is what Grace's gynaecologist suggested, as she was suffering from chronic pain. At 27 years old, it was not a decision she made lightly.
"When I left his personal assistant told me I should be really grateful that he said yes, because if I'd gone anywhere else, the answer would have been a 'no'." - Grace Hall
She had clearance from a psychologist, but her surgeon pushed back.
"He had received the letter from the clinical psychologist and he still tried to deny it and was just very determined that as a woman I have this ability, responsibility to reproduce."
After reluctantly agreeing to the surgery, he said something that has always stuck with her.
"He said that he would cry for me on the operating table. [It] made me feel really guilty about the whole thing.
"When I left his personal assistant told me I should be really grateful that he said yes, because if I'd gone anywhere else, the answer would have been a 'no'."
Despite getting the help she wanted, those words left her in a fragile mental state.
"It made me feel kind of guilty, and as if I was reduced to just the fact I have a uterus.
"I felt like I had this responsibility to produce children and it just took away from everything else that I have to offer as a person and what I wanted to achieve with my life."
Grace had health insurance which sped up the process.
But 19-year-old Azaria Howell does not.
She also has endometriosis and had surgery to remove it two years ago. But it has grown back and every day is a struggle.
"I do still deal with a lot of the impacts to this day. I've just been in hospital for cysts, dealing with a lot of day-to-day chronic pain, a lot of fatigue, and a lot of mental health impacts as well. "
She wants a hysterectomy, but multiple doctors have told her she is too young.
"I've been told a lot of times by usually male GPs that in order to get a hysterectomy you have to be at least 35, you have to have two children, you have to have a husband, and all of these strange medical loopholes that really make no sense to me.
"It just doesn't really seem very fair to people living with these chronic conditions."
It is a theme gynaecologist and obstetrician Helen Paterson says is widespread across the medical system.
"There is a limited amount of surgical access and funding within public care. It differentiates across different DHBs. The reality is there is a prioritisation system for choosing who gets the surgery that is available in those areas, with cancer being a priority."
She's urging medical professionals to re-think the way they treat younger female patients.
"Let's take the focus off the fertility aspect of things. Let's actually focus on the person and look after the person.
"One of the problems is if we bring in the paternalism of, 'we think you don't know what you want, therefore we're trying to stop you from having something because of the potential you'll want children in the future,' we miss the point of actually looking after the person."
Removing the uterus does not stop someone being able to have children, she said.
"If you keep your ovaries, then you can actually have surrogacy with your egg and sperm, retrieve your egg, do IVF, and then have a surrogate."
Grace and Azaria are hoping the culture will change among doctors so that other females do not have to go through the same struggles they did.