After Syl Freedman was diagnosed with endometriosis at the age of 21, she and her mum Lesley founded EndoActive. Their not-for-profit helps women and girls with endometriosis by empowering them with knowledge and information.
Here, they discuss together their experience with the topic of pregnancy as a ‘cure’ for endometriosis…
Lesley: After Syl recovered from her first laparoscopy she and I returned to the surgeon for her six week checkup. He showed us lurid photos of the operation and explained that she had severe endometriosis which he had excised. He seemed confident that she would eventually recover her health and energy.
He also suggested, to our amazement, that if she were to have a baby she would probably suffer no further from endo. Syl was 21, halfway through her undergraduate degree, and she was waitressing and interning. The last thing on her horizon was motherhood.
Syl: These young women, writing on EndoActive’s Facebook page, had all sought advice from their doctors for symptoms, including severe period pain, of what would later turn out to be Endometriosis:
“My Dr told me that having a baby would help my pain. I’m only 12.”
“I was advised to go to the pub and have a one night stand and try to get pregnant.”
“A GP said that “if your pain is really that bad why don’t you just go and have a couple of babies, that would definitely sort it out.”
Health professionals and well-meaning friends and family often prescribe pregnancy as a ‘cure’ or treatment for women with endo. This advice is based on a myth that’s been around for centuries, dating back to Ancient Greece.
However, 2000 years later, Harvard Medical School published a paper (1965) that concluded: “The impression that pregnancy exerts a consistent curative effect upon endometriosis ….. appears to be ill-founded.”
In 2015 world-renowned endo surgeon Dr. Paolo Vercellini wrote: “The old clinical tenet that pregnancy is a cure for endometriosis may be revealed as fallacious.”
Is anyone listening? No, apparently not. In August 2016 The Huffington Post published an article by a UK gynaecologist asserting that “pregnancy itself is an effective ‘treatment’ for Endometriosis”.
WTF?!
Lesley: I was completely sucked in by this extraordinary idea. If a baby would cure my daughter’s pain then what were we waiting for? We weren’t needing a husband or boyfriend. Just a sperm donor.
Well, what about someone who’s gay? It might suit them to have a no-strings baby. I phoned a friend of mine whose son, Sam, had recently come out. He was a charming and clever young man and we knew the family well. This could work out for everyone. I invited myself over to discuss it with her at lunch.
LISTEN: Syl Freedman talks candidly about her endometriosis with her cousin, Mia Freedman on No Filter (post continues after audio...)
Syl: Getting pregnant or having a baby is NOT a cure for endo. Also it’s unethical to suggest a cure for an incurable disease. The decision to create human life should not be made to achieve relief of symptoms or to cure an illness. Children are not treatment options.
You can choose to stop taking a medication if you find it doesn’t help you. Not so with a baby.
A 16-year-old is still legally a child. Are they suggesting that a child has another child to cure a chronic illness? The advice is frankly ridiculous.
In February 2016, EndoActive, our patient advocacy group, conducted an online snap poll. Women and girls with endo were asked if a doctor had told them that pregnancy would cure their endo. The following quotes are taken from the poll.
"I was told pregnancy would help – which was partially right. I was blissfully symptom free whilst pregnant and breastfeeding, but after that my endo was significantly worse than before I was pregnant and I was totally unprepared for it – no one had mentioned this to me and I was in such agony. I ended up unable to walk because of pelvic pain (and with a small child to care for)." - Claire GS
"I first went to the gyno when I was 15… He told me I was “too young to have any real issues down there … but getting pregnant is often a good solution for period pain”. - Kirsty B
"I was told at 16 to go and have a baby and it would cure me, this was by a gyno. I have since had 2 children and it didn’t cure my endo." - Leah C
"At the age of SIXTEEN I was being told that having a baby would help. SIXTEEN!!! I am now 23 with a 2.5 year old and my endo is far far far from “CURED." - Tessa K
Lesley: I was feeling so excited and positive all the way to lunch. What a brilliant idea this was! A win, win for everyone. I was picturing myself pushing the pram feeling 20 years younger while Syl finished Uni and eventually got a great job.
I pulled up at my friend’s house and practised introducing the topic: Do you think Sam would like a baby someday, or even, now? Wouldn’t Syl and Sam make a beautiful baby together? I’d have to discuss the turkey baster obviously.
Hang on - Sam wasn’t even in the country how would we get the sperm from UK to Sydney? Suddenly I felt as flat as a tack. My brilliant idea seemed totally weird and absurd. Whatever was I thinking of? By the time my friend answered the door I knew I wouldn’t mention it.
Syl: OK it’s time for everyone to stop perpetuating the myth that pregnancy is a cure for endo.
It’s time to stop telling women and children with endo to “just go and have a baby”.
EndoActive is holding the second Endometriosis Conference on September 9 at the University of Sydney for patients and health care professionals. Syl Freedman will discuss this topic. Book your seat here.
For more information on EndoActive, visit their website and Facebook page.
Mamamia is dedicated to bringing endometriosis out of the dark and into the spotlight. You can read more of our endo content here.
Top Comments
Having had Endo, with 2 laparoscopy's as well, to help try & clear it. I do believe it is time for more research into how & why some women get this truly awful condition. I unfortunately was peri-menopausal in my mid 30's, so pregnancy didn't happen. I struggled with period pain for much of my adult life. There needs to be recognition that this type of period pain & any irregularities around periods needs to be researched & investigated, not kept in the dark.Hopefully the whole concept that women need to accept that it's part of the deal is not acceptable & is part of an outdated thinking towards women's health & that having to struggle with a physical situation
(& the limitations it causes) also the psychological issues associated with it, has real impact on the everyday lives of women who have to live with the condition, needs to be recognised. I too remember the whole you should get pregnant theory behind "fixing" endo, the surgeon suggested it but I pointed out the long history of miscarriages in my family, ( I had 2 miscarriages in my late 20's), this wasn't going to fix the problem.There needs to be a real understanding around the causes & the long term effects, around Endo, not just an ad hoc approach that for whatever reason gynecologists & doctors spew forth as an "answer," so that they can somehow placate women, by giving females patients an answer to something that is clearly more complex & that they're unwilling to admit they don't have the knowledge around.
I was told by my GP years ago, he didn't have an answer to what was happening to me, when I went to him with some truly weird symptoms (we'd got back some really strange blood results as well ), which turned out to be an autoimmune illness in the end. This is what needs to be recognised around this type of situation, so called medical "experts" need to be able to admit to their limitations & be able to say when they've reached the limits of their knowledge, (as my GP did) either referring the patient onto someone that has the knowledge or making it clear that this is one of those things at this stage there isn't an answer for., this will hopefully help change the approach & also push forward to a solution, but also deal with the inclination towards relying on myths, which is more about laziness than a tangible answer. By suggesting something that has not only been proven unreliable, but also by forcing a woman into taking such a drastic step of bringing a child into the world, which women & their family's aren't necessarily ready for, physically, emotionally or financially, to me it was an extremely drastic step that didn't work anyway. There is also a theory around the connection between autoimmunes & endo, I am not sure of the validity of this, but it is worth ruling this in or out.