Suzanne Insley calls her lower right limb "zombie leg" and says it hurts all the time.
Suzanne Insley says she is in constant pain due to her leg. Photo: Supplied
What began with a simple sore toe two years ago has left the 31-year-old Northland woman asking doctors to cut off her leg due to the intense pain she's in every day.
"Walking or trying to walk at any sort of fast pace - my whole calf muscle cramps up and then it kind of feels like it reduces the blood flow to my foot and then my foot goes numb and dead. It's ridiculous."
It all started in January 2018, when she went to her doctor at Kerikeri's KeriMed medical centre, with a cold, purple toe on her right foot.
Her doctor suspected a small blood clot and sent her away with codeine.
The pain intensified, and she was later misdiagnosed with a blood spasm condition.
Suzanne Insley's problems began with a sore toe two years ago. Photo: Supplied
Over the next six months, Insley said she made repeated requests for a clotting test, which were refused.
A serious blood clot in her lung saw her admitted to hospital in July, and an angiogram months later showed arterial disease - which causes arteries to narrow.
If these tests were done earlier, perhaps she could have avoided months on painkillers, or been able to hold on to her photography job, she said.
The blood supply is now so poor that she faces amputation, and her condition has worsened to such a degree that Insley is hoping for it.
"I want amputation. I understand with amputation you get things like phantom pain, but that's an every now and again thing, whereas at the moment I've got a constant, never-ending pain.
"I just want freedom. I mean people with prosthetic legs can run marathons. I can't even walk around the supermarket."
Two years on, the Health And Disability Commissioner has not upheld her complaint over the standard of her care.
In a statement, Health and Disability Commissioner Morag McDowell said the commission made a thorough assessment and sought expert advice on Suzanne Insley's case.
"The advice from our expert indicated that, overall, the care Ms Insley received was of an acceptable standard.
"Following our assessment, we took the opportunity to make educational comment to the provider, including asking them to consider presenting an anonymised version of the case to a clinical peer group.
"The aim of this is to ensure there is greater awareness of the possibility of arterial disease for people in a similar demographic with similar symptoms."
No one from KeriMed would be interviewed.
In correspondence to the commission, the practice said it was difficult to tell whether earlier tests would have prevented Insley's leg deteriorating, and that her problems were "unusual".
When Insley was three days old, her mother died of a sudden aneurysm. This could mean Insley has a greater chance of blood clots.
Her uncle, Stephen Bell, a counsellor and former registered nurse, said it's been "heartbreaking" to see his niece in such pain for so long.
"At the moment, she just barely exists because of the limitations of what she has to live with. But the underlying theme of it all is she just doesn't feel heard and feels dismissed. And I think you just get to a point where you just don't have any sense of hope."
Bell said his niece is a young woman and low earner, with tattoos and pink hair. He believes this added to her struggle to be taken seriously.
"Being a young woman who maybe doesn't fit the normal mould... If the scan had been done early then who knows, we might be in a very different position now."
Insley will have an MRI scan in February to determine what happens next.
She said no one should be treated differently because of how they are perceived.
"I want the medical system to take a bit more responsibility and realise that it's not okay to treat anyone differently just because they're not like you ... it doesn't make them less worthy of being treated.
"I don't trust doctors anymore, I don't trust nurses - which is ridiculous, because when you are in pain and you need their help, what are you supposed to do?"