Mother-of-four Christie Smith spends almost all of her days in bed wracked with pain, and has done so for the past five years.
Smith, who lives in Shellharbour in the NSW Illawarra region with her family, suffers from a rare case of end-stage or “terminal” endometriosis, meaning the endometrial tissue has run rampant to such an extent through her body that it can no longer be removed with surgery.
Over the years, Smith’s endometriosis has spread to her bladder, bowel, kidneys, liver, diaphragm and even her lungs.
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In constant pain, Smith finds walking and even swallowing or breathing difficult.
“I’m probably in bed 23 out of 24 hours because I am in so much pain all the time from the scar tissue and adhesions,” Smith told 9news.com.au.
Smith is speaking out about her crippling experience with endometriosis in order to call for women with the condition to be taken seriously.
The 45-year-old claims she was “gaslit” and ignored for years by doctors, who failed to listen to her pleas for help as her endometriosis grew worse and worse.
Having suffered through excruciating periods starting as a teenager, Smith always suspected she had endometriosis, but she struggled for a decade to get a diagnosis.
“I tried to get a diagnosis. I suspected that I had endometriosis based on my own research, but the problem with endometriosis is they can’t find it on scans,” she said.
“I went through the whole process of getting scans and nothing ever showed up.”
It wasn’t until 2005, when Smith was 26 and had an almost fatal ectopic pregnancy, that her endometriosis was officially diagnosed.
“When it ruptured, I nearly died. I had to be taken into emergency surgery,” Smith said.
Doctors discovered Smith’s fallopian tube, where the fertilised egg had embedded, was scarred and covered with endometrial tissue.
Smith was given news of her endometriosis diagnosis, and also her infertility.
“I was told I wouldn’t ever be able to have children with the remaining tube that was also so badly damaged,” she said.
However, Smith and her husband managed to have four boys in three years through IVF, including identical twins.
When the couple made the decision their family was complete, Smith said she went to see a gynaecologist about having her uterus removed because of the excruciating symptoms she was still suffering from.
“I was at the point where, when I would get my period, I couldn’t get out of bed for several days,” Smith said.
“I couldn’t urinate because I couldn’t relax my muscles enough to actually do a wee.
“To have a bowel movement was so painful I would cry. It was just horrible.”
To Smith’s shock, the gynaecologist dismissed her concerns, saying he didn’t think her endometriosis was significant enough for the surgery.
“Even with the diagnosis, I had it all in writing, he didn’t believe me. He sent me for a CT scan and it showed nothing,” she said.
“He did a pelvic exam and he said, ‘No, nothing feels like it’s tethered.'”
Smith said the doctor’s advice made her second guess herself, despite the pain she was in.
“I actually started questioning myself. I thought maybe I don’t have it anymore, because he told me a lot of women who go through pregnancy, they find it goes into remission,” she said.
“So I was kind of gaslit, to the point where I didn’t know whether it was in my head.”
Four years later, in 2019, Smith had an operation to remove a hernia in her groin.
Doctors discovered the hernia was caused by an endometrioma, a cyst related to the endometriosis, that had grown through Smith’s abdominal muscle and into her inguinal canal.
Smith then saw a new gynaecologist who agreed to operate to remove her uterus at the end of 2019.
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However, the planned surgery turned into a seven-and-a-half-hour operation with multiple surgeons involved when it became apparent the endometriosis had spread to almost all of Smith’s abdominal organs.
Smith had what is sometimes referred to as “frozen pelvis”, a rare and severe stage of endometriosis where the pelvic organs become fused and stuck together.
“My entire bowel had to be resected off the back of my abdomen because it was completely stuck down,” Smith said.
“That’s why I was having a lot of pain, because my bowel wasn’t able to function normally.”
Dr Jason Chow is a pain specialist and gynaecologist at the Royal Hospital for Women in Randwick, Sydney, and one of Smith’s doctors.
Chow said improvements in ultrasound and magnetic resonance imaging (MRI) technology meant patients with severe cases of endometriosis like Smith were now being picked up more often before surgery.
“Very occasionally, you come in for surgery and that’s not (been) detected, but I think we’re getting better,” Chow said.
While the proportion of endometriosis patients with frozen pelvis was very low, it could also be underestimated, as some people were asymptomatic, Chow said.
“One of the challenges is that the pain (felt by patients) doesn’t always correlate with the amount of endometriosis you have … some people might not have symptoms and still have severe endometriosis,” he said.
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For patients such as Smith, with severe end-stage endometriosis, the condition would have likely progressed over a period of years, and not having it actively managed could have contributed it getting worse, Chow said.
While there was an increasing awareness in the medical profession about the “invalidation of women’s pain”, some endometriosis patients were still having their symptoms dismissed, Chow said.
“Regardless of the stage of the endometriosis, your pain should not be less validated because you have stage one,” Chow said.
“There are health consequences, including physical consequences, even if that stage of endometriosis is not severe.”
Chow said there were still medical myths about the condition being perpetuated, such as the belief that a woman’s endometriosis would go away when she fell pregnant.
“This is actually based on a commentary that a gynaecologist made in the early 1900s. That has since been negated. During pregnancy, your endometriosis might be lighter but you are not going to take away your endometriosis by being pregnant,” Chow said.
“These are the sort of medical and societal biases that still exist.”
Chow said if patients were worried they should go see their GP.
Smith said not being believed about her endometriosis had robbed her of the chance to keep it under control.
The mother-of-four has been advised against further surgery by doctors because it could result in complications and worsen her pain.
In a further blow, Smith’s body is no longer responding to the maximum-dose opioid painkillers she has been taking.
Desperate to help, Smith’s friend Rosalynne Glarey recently started a GoFundMe campaign to help fund her access to a spa for pain relief and physiotherapy.
Smith said her message was simple.
“I would like women to be believed when they are in pain,” she said.
“If a man had this happen and was in pain like this, no doctor would just say go away and come back in four months and tell me how it feels. He would be investigating what is wrong.
“If it stops you from doing your life, then that’s too much pain.”
Contact reporter Emily McPherson at emcpherson@nine.com.au
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