Either you have it or definitely know a woman with it. I’m talking PCOS or Polycystic Ovary Syndrome or PCOS. From irregular periods, hair on your chin, fertility issues to depression and dismissive doctors, women with PCOS - almost 1 in 5 in India - navigate it all.
But there are so many questions about this startlingly common syndrome or disorder - like what is the difference really between PCOS and PCOD? How does your weight play into this? And what does depression and anxiety added to it all do to our bodies and mental health space?
Bedsides all these common questions, there’s now a growing tribe of women who wear their PCOS proudly on their sleeves, sticking together to find support and answers in a world where women and girls are often not heard (even for medical issues.)
PCOS, Misdiagnosis and a Lot of Confusion: Raashi's Story
At the TheaCare FemmeCon, a conference for women’s health and mix of doctors, health experts and women’s health voices, Raashi Vidyasagar, co-founder of The Alternative Story, spoke about her annoyance at being diagnosed with PCOS - after far too many years of confusion.
“I got my period at 9 and knew something was wrong throughout my teen life, but only got diagnosed at 23 when I demanded an inter-vaginal exam after lying and saying I was married.”
But beyond the honour/marriage fiasco, why did it take so long?
“There was a lot of confusion and frustration. I tried every diet, tried to lose weight, tried medications but was not finding a way,” she adds.
When is PCOS Diagnosed?
How did you know you have PCOS? For most women, it’s either irregular periods in their teens/early 20s or fertility issues later on that spark a realisation that something’s wrong.
According to the most widely used form of diagnosing it, the Rotterdam Criteria, two of the following three criteria are required:
- oligo/anovulation or issues with missed/no/late periods
- hyperandrogenism
- clinical (hirsutism or excess facial hair)
- biochemical (raised FAI or free testosterone)
- polycystic ovaries on ultrasound
But Rashi had just one - androgens - and so had to wait years for a proper diagnosis. Criteria evolve with time, and PCOS is a growing phenomenon with new research coming to light everyday. On the flip side, this means women who don't fit into these neat boxes are left out.
But wait did you think it was that easy? There's another way to figure: AE-PCOS or Androgen-Excess PCOS.
As the name suggests, this focusses on hyperandrogenism (clinical and/or biochemical) and ovarian dysfunction (oligo-anovulation and/or polycystic ovaries).
The best way of understanding PCOS is a combination of the two criteria and it is best to get yourself checked if you have 2 out of the 3 issues.
So far, it’s been ll about PCOS - but a lot of women have also got diagnosed with PCOD.
Syndrome versus disorder - will the real problem please stand up?
Dr Bandana Sodhi, a retired army officer and senior consultant and oncologist at Moolchand, says,
“Syndrome is a much larger idea than disorder. It means you may not have all the symptoms or every single associated problem, but you have some. The cirteria often determine the S or the D in your diagnosis,” says Raashi.
Dr Bandana Sodhi adds, “PCOS is just a new nomenclature, the condition is the same. But it is a metabolic syndrome, not a disease or a disorder. It’s an S that influences many other mechanics of the body.”
Gyni Talk: Can Doctors and Women Get on the Same Page?
One of the big worries has been the gap between doctors and women. Women have been speaking about the lack of empathy offered to them as patients and the standard answer of weight loss given every girl.
PCOS and weight gain is a oft-asked question and to this Dr Sodhi says, “ PCOS and weight gain are also related cyclically- it can be related to obesity or not. So every patient does not need to lose weight. This needs a personalised diagnosis.”
Doctors need to really listen to their patient, she adds, and tailor a PCOS management plan accordingly.
Oral contraceptive is one way of dealing with this, but it is not the only one. Dr Sodhi explains that they target PCOS by looking at the insulin receptors around the follicles, these aren't sensitive to the insulin being secreted in the body.
"We give them insulin-receptor-modulating drugs. Metformin is the most common and this helps the environment near the uterus."
Now we come to the big one: how much is weight gain related to PCOS?
"Lifestyle changes like regular exercise are important, you must maintain a good BMR so that whatever androgenic conversion of your estrogen takes place in your fatty issues is withheld so that the cycle doesn't start and result in acne, hair and more issues."
She adds that even 5% or 7% of weight loss in 6 months will help.
It's a complex matter inside our bodies!
Of course, exercising is always a good idea but this view is severely restricted, its ablest and assumes certain privilege. Rashi said it was not always possible to make time (something millennials really identify with) between trying to cook a healthy meal, killing it at her job or just taking care of her home and pet. Meanwhile, Dr Sodhi added that regular exercise and eating healthy food is imperative to treat the problem from its core.
Between this back and forth, Rashi said she was active for around 6 hours everyday as she played hockey competitively in school - but PCOS made the weight too hard to lose. Other women in the audience added that they were sportspeople and still dealt with this.
PCOS is complex and confusing - and more research into women’s healthcare is sorely needed. “We aren’t getting the same funding as men’s health into research,” adds Raashi, information is sparse and a lot of doctors don’t understand - so we need to lean into our own health, and ask more questions fearlessly. And find online communities to lean on for support - in this world, we all need it.
The Internet to the Rescue: Mental Health and Community Support
A lot of this data seems to have come forth from a lot of individual research, and Raashi found help through online support groups: communities of women in this PCOS jungle who help with information gathering and support.
First, let’s break down the PCOS support group lingo:
TLW: Trying to lose weight
TTC: Trying to conceive.
“A lot of the conversations in support groups reloved around TTC and fertility issues, she says.” This makes sense as problems with fertility is when a lot of women realise they may have undiagnosed PCOS.
But there is a space for women outside of fertility questions too. The ideas of acceptance, of body type, weight, depression, anxiety, fears of over-medication and other PCOS related issues, was a big one on these groups too.
“It;s often frustrating to be apart of this body. So much is going on. I keep thinking - please can I just keep this aside and just live for a bit.
Mental health and PCOS is a complicated journey many women battle every day. From anti-anxiety medicines like Raashi takes that lead to weight gain which worsens PCOS, it’s a never-ending cycle.
The conversation starts moving beyond the physical to a more mental, inner phase. PCOS has a lot of issues, and women with often feel like they constantly juggling many balls. Raashi stresses on shifting focus from the physical, inwards.
“We need to start saying ‘I need to be kinder to myself’ and not have resolutions like I will lose 20 kgs!,” Raashi adds,
She adds that finding support online helps, someone who understands the struggle because they are going through it themselves so they can truly emphathise.
“You’re constantly told that you are making this up!” But finding an online community helps with your mental health, support and care from those who truly get it.
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