At age 11, Indi was in debilitating pain. A doctor told her the only way to fix it was to get pregnant.

Picture this. You're 11 years old and experiencing severe pain.

It's a pain that is often debilitating - horrible periods, sharp, stabbing pains, vomiting at certain parts of the menstrual cycle, as well as soreness in the legs and lower back. It's endometriosis.

It makes sense that when grappling with pain like this, you would visit your doctor, desperately trying to seek answers and treatment. 

Now imagine - again, at just 11 - being told your only option to easing and even ending the pain is to get pregnant. 

Indi Woollard experienced exactly this.

Watch: Those with endometriosis share their stories - including being told to get pregnant. Post continues below.

Video via EndoActive.

"When I was 10 I started having lots of pain. My mum has severe endometriosis, so she rightly figured my pain was endo too. She kept pushing GPs to do a laparoscopy on me to check, but it took until I was 16 for that to happen. I had a twisted fallopian tube and bits of endo were found, and then at 21 they found the cysts and saw I was riddled with endo," she tells Mamamia

In the lead up to the official diagnosis were countless GP visits where Indi didn't feel listened to. And the advice she was given was a myth.


"I was 11 and at the GP with my mum. I had been off school a lot, screaming and crying from the pain. This GP told me that the only way to get rid of the pain was to have a baby," Indi recounts.

"I felt so incredibly lost and devastated. I wasn't even a teenager yet, there was no way I would be having a baby. And to think I had to wait 10 or 20 years from that point to have a 'solution' to the pain, it was so unhelpful."

It also left Indi's mother frustrated too, given she knew herself that conceiving a baby was not at all a cure for endometriosis. They went to see another GP, only for that health professional to suggest Indi was "lying" about her "claims" of having pain.

"That GP then said to me 'Well if you do actually have endo, and you aren't lying, you can only get rid of endo by having a baby, it settles it all down'. It was a pretty upsetting experience."

Thousands of other Australian women can relate to Indi's story. Below are just a few of their stories:

"When I was 16, a doctor told me I should fall pregnant to 'get rid of' the endometriosis."

"I was 21 and crying in the doctor's office when he told me I had to fall pregnant [to alleviate my endometriosis symptoms]. I said 'I'm not seeing anyone', and he said 'Well go out tonight and have a one-night stand'."

"When I was 16 the doctor told me my options were either to have a hysterectomy or get pregnant."

"I've had two babies and still have awful endometriosis pain and periods."

The irony though is there's very minimal evidence to suggest pregnancy is a treatment for endometriosis. In fact, advice like this is a total fallacy, according to the latest research.


"Pregnancy or having a baby isn't a treatment for endometriosis and this advice from health professionals can have negative impacts on those who receive it," says Professor Louise Hull, a fertility expert from the University of Adelaide's Robinson Research Institute.

Indi today. Image: Supplied. 

Six years ago EndoActive collaborated with the University of Sydney and launched the Endometriosis Patient Experience Survey (EPES). The survey explored the circumstances and impact of advice that patients may have received from their health professional to get pregnant to manage their endometriosis.


Now the results of the survey have been published in an Australian paper from BMC Women's Health, written in collaboration with the University of Adelaide's Robinson Research Institute, EndoActive and the University of Sydney.

One of the biggest findings from the study was this - more than half of those surveyed had received advice to get pregnant or have a baby to manage or treat their endometriosis. 

Almost 90 per cent received this advice from a health professional. Of those, 72 per cent were advised by gynaecologists and 45 per cent by GPs.

That is despite the fact there is minimal evidence to suggest that pregnancy is a cure for endometriosis. There is also a lack of evidence that pregnancy reduces endometriotic lesions or symptoms.

Sylvia Freedman is the co-founder of EndoActive and the co-author of the BMC Women's Health research paper. She hopes the research shows the impact this sort of advice can have on patients dealing with endometriosis.

"I was 21 and I had just been diagnosed with endo. My surgeon said to me 'If you were to get pregnant and have a baby right now, you would be fine'. Why are doctors prescribing pregnancy as a cure for an incurable disease?" Freedman says.

"We now know this is fake news. Pregnancy does not cure endo. A hysterotomy does not cure endo. It's a throwaway line that is fraught with ethical dilemmas. While there are plenty of treatments available for women to try, there isn't a cure yet, so we shouldn't throw this word around."

As Freedman notes, the impact of receiving unhelpful and inaccurate advice like this is really consequential. It can erode trust with healthcare professionals, put pressure on women to rush major life decisions, impact mental health and strain relationships. 


It can also be particularly hurtful advice given the fact many women with endo often experience fertility-related challenges, including Indi who is now 21.

"I've been told my ovaries don't really work, yet all I want is to have a baby in the future. With a big operation next year, I have to freeze my eggs. It is a bit scary and I hope it works," she says.

"Most people with endo struggle to have kids. So telling them simply to 'get pregnant' isn't fair. One, because it isn't true that it fixes endo, but two, it's insensitive as fertility can be really hard."

It's this point that EndoActive wants people to hear - it's important for healthcare professionals to provide fertility advice in appropriate circumstances for those who have endometriosis. But pregnancy advice in relation to treating the condition is unethical. 

"Having endo is a struggle," says Indi.

"I want those with endo to know there are people who will listen to you and understand what you're going through. And there are doctors who know what they're talking about too."

You can see the full survey here, and for more information and support visit EndoActive

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