When Laura Murphy and her husband Tom began trying for a baby in 2017, they were surprised when they struggled to conceive.
The Brisbane couple had welcomed their daughter, Indi, just one year before.
"I went back and saw my obstetrician," Laura said.
"Her only suggestion was that when I stopped breastfeeding, my period would return to normal and that's most likely when I would get pregnant again."
But Laura's period didn't return to normal and her pregnancy tests failed to turn positive.
Months passed and Laura began to suspect something else was wrong.
"I started doing my own research and that's when I stumbled across Asherman's syndrome," she said.
"It was like all of a sudden I was not in a unique situation anymore. There were so many women out there that had been through the same thing."
Asherman's syndrome is a rare condition — though likely under-diagnosed — that occurs when scar tissue forms inside the uterus or cervix.
Symptoms can include reduced periods, pelvic pain and difficulty getting or staying pregnant.
In most cases, Asherman's occurs due to an infection or complication from a dilation and curettage (known as a D and C) procedure performed following a missed or incomplete miscarriage, during an abortion or after childbirth, if the placenta isn't properly expelled.
The procedure involves the surgical removal of tissue inside the uterus.
Laura had undergone a D and C following the birth of her daughter in 2016.
But when she raised the possibility of Asherman's syndrome with her GP and gynaecologist, they mostly dismissed the idea, she said, noting how rare the condition is.
Undeterred, Laura decided to go to Thierry Vancaillie, a Sydney-based gynaecologist and Asherman's syndrome specialist.
The following month, she and her husband Tom flew to Sydney to see Professor Vancaillie, who diagnosed Laura with stage 3 Asherman's syndrome.
"One month later I went back for a second treatment," she said.
"And two months after that I managed to get pregnant."
The struggle to get diagnosed
Laura's struggle to fall pregnant and find an explanation is familiar to Professor Vancaillie, who treats between 50 and 60 women with Asherman's syndrome every year.
"Most of the time women struggle to get pregnant again … or they have a miscarriage, they want to try again, and then it doesn't work. That's a typical story."
Often, women struggle to get a timely diagnosis because the condition is uncommon — somewhere in the order of one or two cases per 1,000 women, according to Professor Vancaillie.
"A traditional gynaecologist — who does everything — probably only sees two to three cases during their entire career."
Asherman's syndrome is also under-diagnosed, Professor Vancaillie said, in part because the onset can coincide with breastfeeding (which can affect fertility), but also because of the misconception that it always causes a woman's periods to stop.
"Amenorrhoea [the absence of menstrual periods] actually only occurs in four per cent of all Asherman's cases," he said.
"Even gynaecologists will say, 'well how can she have Asherman's if she's still having periods?'"
He said by the time some patients had come to see him, they had already been through three or four cycles of IVF — at $10,000 a pop — with undiagnosed uterus scarring.
"It's just really frustrating," he said.
"The most common issue with Asherman's is that it delays subsequent pregnancy. Today, with women starting late to begin with, any delay is not welcome at all."
Treatment for Asherman's syndrome involves surgery to remove scar tissue. It sometimes requires more than one operation depending on the extent of the scarring.
Professor Vancaillie said treatment was generally very effective and most women who wanted to have more children were able to.
"It's the minority of cases which are severe. They may not end up having another child at all, or will need to go to surrogacy."
Those who are able to get pregnant face an increased risk of obstetric complications, and their pregnancies (following treatment) are considered high risk.
Unsurprisingly, the barriers to getting a timely diagnosis and treatment are often more pronounced for women living outside of major cities, or without the financial means to see a specialist or seek a second opinion.
Laura estimates she and her husband Tom spent around $10,000 getting her Asherman's syndrome diagnosed and treated.
"Because I have private health insurance, I was in a better position in that they paid for some things like the hospital," she said.
"But we still had to pay for accommodation and transport, plus the surgeon's fees. We also saw a fertility specialist because we thought maybe we would need extra help."
When the risk of Asherman's is higher
While D and C procedures are routinely performed in Australia and generally considered very safe, there are circumstances where the risk of complications is increased.
This includes when a D and C is performed two to four weeks after childbirth.
It also includes when a woman requires two or more D and C procedures, either as part of the same course of treatment (if the first procedure was incomplete) or over the course of her lifetime.
In the case of repeat intervention, the risk of Asherman's syndrome goes up to as much as 40 per cent, Professor Vancaillie said.
That increased risk isn't something Emily Dorset was made aware of when, in 2018, she had a D and C procedure for the second time.
Emily experienced a miscarriage when she was 10 weeks' pregnant — five years after the birth of her son, Miles, and six years after she miscarried for the first time.
"I went into hospital and had another D and C and all of that seemed to go fine," she said.
"I was told, 'all of your periods will return back to normal' … But my periods didn't come back."
After nine months of hormone testing and other medical investigations, Emily was diagnosed with Asherman's syndrome.
"I was booked in for a hysteroscopy [a procedure that uses a small camera to look inside the uterus] … and it was confirmed that it was really severe."
Emily underwent treatment in the hope of having another child, but was later told surrogacy was her only option.
"I sort of gave up and just decided that we had one healthy child and that was good enough."
But the condition took a huge toll on her life and had a significant impact on her marriage, finances and mental health.
"It's led to a lot of self-esteem issues … I felt cheated, and that my body had failed me and hadn't done what it's supposed to do," Emily said.
"But also, because so much was taken out of my hands, and I had no idea of the risks … you can't help but harbour resentment.
"It's definitely hard, especially when I still get questions like, 'Are you going to have any more kids?' and that's been completely taken away from me."
Improving informed consent
In many cases, a D and C procedure is necessary to save a woman's life or preserve her fertility. At other times, a more conservative treatment approach may be considered first.
Women with the condition say in both settings — especially the latter — women should be better informed of the risks of Asherman's.
"At least if you are informed at the time, you know the things to look out for," Laura said.
"Some people have multiple miscarriages because it's not even on their radar."
Typically, the risks outlined prior to a D and C procedure include bleeding, infection, perforation of the uterus and reaction to anaesthetic.
Professor Vancaillie said it was generally accepted that complications with a risk of one per cent or more were made clear to patients, but that anything less didn't require explicit discussion or consent.
"Having said that, the incidence of Asherman's syndrome after repeat intervention goes [up to] 40 per cent," he said.
"At that time, there is definitely a need to talk about Asherman's syndrome — there's no doubt about it."
Benjamin Bopp, president of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), said doctors sometimes used broad, encompassing terms — such as "damage to the uterus" — to outline the risks of surgery in order to streamline the consent process.
But he agreed that Asherman's syndrome should be explicitly discussed in circumstances where a patient's risk was substantially increased.
"You would hope that doctors would change their consent discussions accordingly if they were in that situation."
But standardising consent procedures was a challenge, Dr Bopp said, due to differences in hospitals and across jurisdictions.
"When it comes to consent, we standardise any procedure as much as possible … but it's up to the clinician to go across the details."
In recent years, a handful of women with Asherman's syndrome have brought medical negligence claims against individual doctors and health services.
Tanya Watson, a senior associate at Julian Johnson Lawyers in Perth, has represented three women who alleged doctors failed to warn them in relation to Asherman's syndrome, or performed their D and C in a way that put them at increased risk.
"Even though it's an uncommon condition, in certain settings, that risk is significantly higher," said Ms Watson, a former nurse and midwife.
There is an obligation, she said, for health professionals to outline risks and any reasonable alternative forms of treatment.
"In an emergency D and C, when there is no other choice, there isn't that obligation.
"But in a situation where it has been offered and there are reasonable alternative treatments, health professionals need to discuss the benefits and risks of both."
Ms Watson said this was particularly important in circumstances where a doctor was aware that a patient was struggling with their fertility or had another reason to "attach significance" to the risk of Asherman's.
"Even if the risk is low, if it's significant for a particular woman … that might require that a conversation needs to be had."
Taking a more conservative approach
Professor Vancaillie said health professionals should be encouraged to consider alternatives to a D and C procedure in non-urgent situations to reduce the incidence of Asherman's syndrome.
"It's something that is ingrained in Western medicine: if someone presents with an incomplete miscarriage, the management will be to get a D and C and get it over with, rather than manage it conservatively, which takes more time."
When surgery is required, he said it was crucial that doctors used a suction tool as well as imaging or ultrasound to ensure all unwanted tissue was adequately removed, to avoid repeat intervention.
He also urged RANZCOG to consider updating its recommendation for prophylactic antibiotics during D and C miscarriage treatment to reduce the risk of infection.
"There's an international recommendation for antibiotic therapy prophylaxis … but it's not being performed routinely in Australia because it's not a recommendation of RANZCOG."
Dr Bopp said he wasn't aware of any specific efforts being undertaken by the college around Asherman's syndrome, but that it had recently undertaken a full curriculum review, which includes of gynaecological procedures.
"In an ideal world, we would operate as infrequently as possible, but unfortunately sometimes you take a conservative path and you'll still need to intervene," he said.
"We're trying to work through this issue along with many other things. There is always room for improvement, and what is standard one year may not be standard in three years' time."
The fight to be heard
In the years since Laura received her Asherman's syndrome diagnosis, she — and several other women from an Asherman's online support group — have worked to increase awareness of the condition in the community and among health professionals.
Laura said it's been an uphill battle to get their voices heard.
"I just wish the medical community and doctors would actually acknowledge this is happening," she said.
"We just kind of ignore it and act like it's not a thing. It very much is a thing and it impacts lives dramatically."
She hoped more awareness of Asherman's syndrome would help more women to get a timely diagnosis.
"It's going to save them years of their life and a lot of anguish because there's nothing worse than having hope every month."
