Sydney model agency owner Brigitte Warne’s health rapidly deteriorated after she came off the oral contraceptive pill to start a family.
She developed cystic acne, her hair began falling out and “vicious cycles of severe anxiety” made her withdraw from her friends and family. Doctors gave her antibiotics for her skin, but it took crying and pleading until the fourth doctor she asked agreed to run tests.
“We did a full hormone test and my testosterone levels were actually off the scale,” she said.
Warne was diagnosed with polycystic ovary syndrome (PCOS), a hormonal condition that affects just under one in six young Australian women.
Three years later, Warne has sold thousands of packets of her $23 “PCOS hormone balancing” tea. Her customers, who found the herbal tea through Instagram, say it is clearing their cystic acne, improving their hair loss, stabilising their disrupted menstrual cycles, restarting ovulation and even helping them fall pregnant.
Fertility specialists and a naturopath say there is little to no evidence to support these claims — but that online communities of women with chronic health conditions are providing crucial support where the health system has failed to.
Many women have polycystic ovaries (ovaries with with small follicles containing immature eggs) but to be diagnosed with PCOS a patient must have two of the following three symptoms: polycystic ovaries, irregular periods, signs of increased levels of androgens (hormones that can cause excess hair growth, acne or hair loss).
There is no cure for the condition. The best doctors can offer is to help manage symptoms.
“My option was to go back on the pill or start hormone therapy treatments,” Warne said. “There was no talk about my diet, my lifestyle or my stress and that didn’t sit right with me. I took the prescriptions from [my doctor] and left feeling incredibly disheartened.”
Warne decided to take her health into her own hands, consulting a naturopath and changing her diet. Her skin started to clear up and her hair began to regrow, she said.
“I was spending hundreds of thousands of dollars on these different herbs and supplements,” she said. “I looked like I had a naturopathic clinic in my house because I had so many bottles and herbs and I was stressed about having to take everything every day and measure it out at different times.”
She now runs PCOS to Wellness, an Instagram page where 34,000 people follow her tips for managing and living with the condition.
“This Instagram started because I didn’t know what to do, I didn’t know where to turn and I was incredibly sad,” she said. “I didn’t think anyone was going through what I was going through so I started an account and it didn’t have my face or name on it as I didn’t want clients to see I had acne.”
Warne said all she does is share what she’s doing for her health on a daily basis. “People are looking for a community,” she said. “I never say ‘this tea will or won’t do this for you’ I say ‘look at the reviews because those are people who don’t get paid to say this’.”
At first glance the Instagram page is like that of any other wellness-obsessed model in Sydney’s Eastern suburbs — glowing selfies, empowering quotes scrawled across a peach toned background and a banana bread recipe that is paleo, vegan and free from both gluten and refined sugars. But in the comments, you find women offering each other support and information and sharing their frustrations.
They’re frustrated with their doctors for missing their symptoms and refusing to run the tests they want (Warne now offers a hormone testing service); frustrated with misdiagnosis; frustrated with blank ovulation tests; and with people who ask them why they’re not pregnant yet.
But the supervillain in this online community of people with a hormonal condition is immediately obvious — it’s hormones. These women are sick of their hormones ruining their menstrual cycles, giving them painful cystic acne and causing their hair to fall out or grow where they don’t want it to. They’re sick of the fact that the likely treatment suggested by their doctor is to take more hormones in the form of the oral contraceptive pill.
Warne instead suggests “cortisol conscious” workouts, and tells her followers how to “seed cycle” — eating certain seeds (pumpkin, flaxseed, sesame) at different points in your menstrual cycle to “eliminate excess hormones”.
These women want more options to take control of their health. They want diets that exclude certain foods, they want to know more about probiotics, they want to know what their sleep chronotype is (if you’re a light sleeper you might be a dolphin) and they want a tea that claims to relieve their symptoms.
Warne wanted to make the herbs she was taking available to her followers.
“I thought surely we can do a milder version that is still super powerful and effective with an easier way to take it,” she said. “I started blending herbs at home for myself.”
She created the “PCOS hormone balancing” Cysterhood herbal tea. The first batch of 200 packets sold out in less than an hour.
“Within weeks I started getting people telling me their cycle had returned, their acne was clearing up, they were losing stubborn weight, their brain fog was going and I was like, ‘What is happening? This is insane!’” she said. “Then within a few months I started to get the pregnancy announcements and people sending me photos of their ovulation sticks saying they had fallen pregnant and the only thing that had changed was the tea.”
Warne says she has now sold thousands of packets to people all around the world: “I just got an order from Iceland!”
Warne is her own poster girl. She was told she would never conceive naturally and her son Finn, who features in many of her Instagram stories, last week turned one.
The PCOS to Wellness inbox is filled with grateful correspondence: positive ovulation and pregnancy tests, grainy ultrasound photos, close up before and after skin and hair selfies.
Doctors told BuzzFeed News while PCOS can affect fertility, research shows the lack of consistent and accurate diagnosis of the condition in young women could lead to overdiagnosis and create “unnecessary” fears of health complications, particularly infertility. Women with and without PCOS actually have similar numbers of children but studies have shown women with PCOS experience “long-lasting psychological distress” because they fear the syndrome would make them infertile, felt pressure to conceive early and took risks with contraception and a few ended up with unintended pregnancies.
This fear is evident on Warne’s page.
Dr Kate Stern, a senior fertility specialist at Melbourne IVF and head of endocrine and metabolic service at Melbourne’s Royal Women’s Hospital said PCOS can affect fertility by disrupting the menstrual cycle.
“You could have normal cycles or long cycles or no cycles and if you’re not ovulating, you’re not going to get pregnant,” Stern told BuzzFeed News. “It is primarily a metabolic condition where insulin sensitivity is altered… and it can muck up your androgens and you get a disrupted cycle.”
Stern doesn’t disparage alternative therapies — she says around 70% of her patients see naturopaths with whom she collaborates — but she said there are no peer reviewed studies on the spices in the tea showing they have an impact on ovulation.
She said many of her PCOS patients were prescribed the flowering plant vitex, sometimes called monk’s pepper or chasteberry, by their naturopaths as well as the natural medicine Premular to help with ovulation.
“I’m not going to prescribe those because I’m not educated on them, but if I’m using stimulating drugs [on the patient] myself I might ask them to come off them,” she said. “Do you advise your patients to take something on a wing and a prayer or on scientific evidence?”
Stern will prescribe her patients lifestyle modification (changes to diet and exercise) as well as insulin suppressing or antidiabetic medications.
“It doesn’t cure PCOS but it sometimes helps the cycles,” she said.
Stern advises PCOS patients exploring all of their options to “make sure all health practitioners liaise and communicate particularly your naturopath and your primary care doctor and your gynaecologist and fertility specialist.”
Obstetrics and gynaecology professor Michael Chapman was dismissive of the tea. He said condoning the use of expensive herbal products for PCOS was only “making people rich”.
“The only natural way to improve PCOS is [for] obese PCOS women to lose weight as they get significantly better symptoms wise,” Chapman told BuzzFeed News. “While all these [natural] medications, the TGA doesn’t oppose because they’re harmless, they’re not licensed by the TGA because they’ve never been proven to work.”
Chapman, who is also an IVF specialist, said many PCOS patients just needed to wait to conceive naturally.
“Women with PCOS, over time something in the order of 60% or 70% will get pregnant spontaneously,” he said. “I would have a patient a month come to me for an initial investigation of their infertility having tried for 12 months and by the time they come for the second visit they’re pregnant, but it has nothing to do with me whatsoever.
Screenshots of messages from eight different women with pregnancies they attribute to the Cysterhood tea can be seen on the PCOS to Wellness Instagram page.
Bendigo woman Rachel Rampling says she wouldn’t be having a baby in five weeks if it wasn’t for Warne and her tea. She was diagnosed with PCOS as a teenager and her doctor immediately put her on the oral contraceptive pill, which she took until her late 20s.
“They really never told me what PCOS was,” the now 32-year-old told BuzzFeed News. “I was just told to stay on the pill.”
In 2017 she came off the pill to start a family. The PCOS symptoms started within weeks. Her hair fell out and she had so much painful acne on her face that it hurt to smile or sleep on a certain side. She didn’t menstruate for 140 days.
“I was never told I might be able to conceive naturally,” she said. “I always thought I’d need medical intervention.”
Rampling’s doctor put her on five rounds of clomifene, a medication used to treat infertility in women who don’t ovulate. Tired and frustrated of getting a positive ovulation test and then a negative pregnancy test, she began spending time in online forums where she learnt that other women with PCOS were having false positive ovulation test results.
“That spun me out as I’d probably had about 40 negative pregnancy tests since I’d come off the pill,” she said. “I really turned online and I found Brigitte and her tea.”
By the end of 2018 Rampling was exhausted from trying and failing to conceive and decided to give her body “a break” from medications.
“I thought ‘one more needle, one more tablet and I think I’m going to go insane’,” she said.
Early last year she went to a fertility specialist. She had her fallopian tubes checked and a laparoscopy to remove endometriosis in her uterus. The specialist told her to come back in September to try IVF if she hadn’t fallen pregnant naturally.
In the meantime, Rampling ordered the Cysterhood tea, which she said was “comfort in a cup”.
“When I got the packet it has this beautiful cinnamon-y smell and you feel like it is comforting in those times of stress,” she said. “It was the way it made me feel, like I had given myself permission to back off mentally.”
She would carry the tea around in a flask at work.
“The science behind it, I couldn’t tell you but what it made me feel wasn’t ‘Oh I’m going to have a baby’ but ‘Oh I can breathe and this is good for my body’,” she said.
Rampling also changed her diet, started acupuncture and got a puppy which she walked instead of “flogging” herself at the gym.
“I was just watching Brigitte with her little boy doing yoga and walking and all this soft exercise,” she said.
Rampling said at the moment her hair is lush and her skin is glowing. She won’t be going back on the oral contraceptive pill after her baby is born. Her trust in doctors has been completely eroded.
“Every doctor I saw up until this last specialist was a man and they couldn’t understand what my pain was and they’d say ‘this is period pain’ and I’d just think ‘well you haven’t had a period’,” she said. “The online community has really replaced that medical factor for me because there is proof in the pudding.”
Naturopath and National Institute of Complementary Medicine adjunct research fellow Dr Susan Arentz’s research has showed the effectiveness and safety of combining herbal medicine and lifestyle intervention in overweight women with PCOS, but she said tea would be limited in its effectiveness as there was only so much that could be extracted from a plant with hot water.
“It is a way that people get around the Therapeutic Goods Administration because it’s a type of food so they can make health claims without having to explain where it is from, as it is a food rather than a medicine.”
She explained the efficacy of each ingredient in Cysterhood tea from a naturopathic perspective.
“Cinnamon has evidence with helping with insulin resistance and improving insulin sensitivity and 80% of women with PCOS have insulin resistance,” she said. “But it is a bark so water isn’t really going to extract the active constituents.”
Arentz couldn’t cite any evidence that showed organic Lady’s Mantle leaf was useful for PCOS but she did say it was used by naturopaths to treat heavy bleeding, which can be a symptom of the condition.
Stinging nettle leaf? “I wouldn’t use it for PCOS… [but] it has a high level of iron so it is a really rich source of vitamins and minerals.” Arentz said the plant’s root, not leaf, could “theoretically” be used to lower the effects of androgens but even then she said she hadn’t seen a clinical trial and said it wouldn’t be useful in a tea.
Alfalfa leaf? “You’d be better off eating it.”
Ginger? “You’d need to use a decoction (concentrated liquor) where you put the root with water and boil it for 20 minutes”.
Red raspberry leaf? “I wouldn’t use that at all with PCOS… it helps in stopping heavy bleeding and has been shown to reduce the second stage of labour (during birth).”
Spearmint tea? Arentz said a small clinical trial showed women with PCOS who drank spearmint tea instead of chamomile tea found it impacted the level of androgens in their blood “but it was one small study and it didn’t change their acne or facial hair growth”.
Spearmint was the only ingredient Arentz agreed could be useful in a tea and real spearmint, she said, was expensive.
“There is a high level of evidence for some of these things but the quality of the trials is low,” she said. “Having said that there are still a lot of drugs and clinical practice guidelines that have low evidence and people still need to make treatment decisions.”
Arentz said the health system benefits from women “being engaged with their own healthcare” and that women with PCOS are at a high risk of depression, anxiety and body dysmorphia.
She said stigma and shame around PCOS can be worsened rather than alleviated by doctors: “When women with PCOS encounter medical providers who aren’t completely across that condition it can exacerbate their feelings of isolation and some of the women are very angry, disappointed and traumatised.”
Online communities are a good antidote: “It is kind of like group therapy and the internet is amazing for that.”
Monash University’s professor Helena Teede, who heads the national NHMRC Centre for Research Excellence in PCOS, said she was not surprised patients were ending up in online communities.
“Online forums are providing support and networks and not the six minutes that the government funds for the GP to spend with you,” she told BuzzFeed News.
“I think women should sit back and question if they’re feeling frustrated because their primary problem is going unaddressed. Someone is making money off your vulnerability.”
Tea might not target clinical symptoms but that doesn’t always matter, she said. “Taking time to brew a tea, sit down, drink something that is going to help your wellbeing is probably not a bad thing for all of us.”
She added that women should be sceptical about things that aren’t based on evidence and cost a lot, and even food products should be from reputable producers.
“I’ve hospitalised people from the side effects of their teas and complementary products,” she said. “I’ve seen misuse or even abuse of evidence on many occasions — it’s not just in complementary therapies.”
Warne says she has a “do no harm” approach with her Instagram page and tea.
“When you’re dealing with things like fertility and women’s health I never want to mislead people and be like, ‘This is going to fix all your problems’,” she said. “It is just like ‘this could be helpful and it can help support a lot of these [problems]’.
“If someone doesn’t see any results from the tea but they have tea in their ritual and [have] taken out coffee [from their diet] and that has maybe reduced their stress, if that is all they get out of it, then for me that is a great outcome.”