PCOS and Endometriosis Around the World 🌎

Endometriosis and PCOS affect women across the globe in different ways, with variations seen across different countries, economic strata, and ethnic backgrounds. A universal challenge for women worldwide is the struggle for their pain to be recognized seriously.

In many societies, particularly in South Asia, menstruation pain is often stigmatized, with a widespread belief that the pain will recede post-marriage. Consequently, many women spend years believing their pain is normal and will naturally dissipate over time.

The gender pain gap is more pronounced for women with conditions like PCOS or Endometriosis. Women's pain is often seen as routine, or even worse, dismissed and overlooked as psychological rather than physical, and as a result, inadequately investigated. This phenomenon is consistently seen across nations, cultures, and income groups. Women resort to social media, support groups and even ask Reddit users to map trustworthy doctors and clinics.

Given the difficulties in accessing medical care and support throughout their endometriosis or PCOS journey in the Global South, women often emphasize the importance of self-reliance and having a small group around them who believe in their symptoms.

The healthcare system's wide disparities across the globe impact the struggles faced by women. For instance, in the UK, as waiting times continue to rise, obtaining a referral to a specialist can be a lengthy process, especially for patients with PCOS or Endometriosis. Conversely, in the USA, the healthcare system is fragmented due to a multitude of insurance providers, healthcare networks, and care settings, causing difficulties in managing care across multiple specialists or services for conditions like PCOS and Endometriosis that exhibit diverse symptoms and require varying treatments. Furthermore, the cost of healthcare can be daunting, especially for more complex treatment options and for women lacking insurance coverage.

To shed light on these experiences, we've compiled stories from women with Endometriosis and PCOS across the world, highlighting the shared and unique aspects of their journeys.

Kenya 🇰🇪

From Anon, 36 y/o

Initially, I was diagnosed with malaria, typhoid, and ulcers until roughly 7 years later when I got proper medication and got the right diagnosis - PCOS.

From Anon, 25 y/o

My friends started discriminating against me because I couldn’t hang out with them when I was on my period… I became self-conscious and feared sex because of the fear I would start bleeding during the act. I faced rejection every time I raised my period issues to a potential lover.

Canada 🇨🇦

From Josie, 27 y/o

It's very frustrating because I usually have to basically tell her ‘You need to refer me to this’ or ‘I need to be referred to this’ or ‘I need to see this person’. I don't know why, I haven't really figured it out. It seems to be like I'm usually the one googling how to deal with this. I'm usually being my own doctor.

From Divya, 22 y/o

My family doctor has always dismissed my various issues, including PCOS. I know it is potentially linked to mental health issues as well. I remember bringing these types of things up and he would just kind of shy away from it like he didn't want to deal with it. So I feel like they try to look for the path of least resistance if they can. Unless I was dying or had something like diabetes, dealing with my PCOS and the mental health issues that come with it is not important. ‘Oh, she's not trying to get pregnant or whatever, so who cares’.

India 🇮🇳

From Girishma, 24 y/o

I don’t want others to say something (negative) after marriage [if I have fertility issues due to PCOS]. I don’t want to take that stress. Let’s say I have a problem in conceiving, then, immediately, everyone will start saying that ‘she has PCOS’. So, let me cure this before marriage itself.

United Kingdom 🇬🇧

From Rebekah, 32

Speaking to other women and from my own experience, it was so crazy to me that women [with Endometriosis] just don’t have options. I could either stay in my job with health insurance and get surgery within 2 months; or go back into the NHS, quit my job - that was really impacting my mental health at the time - but wait 2 years. The thought of continuing [with my job], because the pain was so bad, was not feasible. The thought of living in that state just wasn’t an option. [I thought] How is it that I am in this position, and how is it that as women we have got to this place in 2021 where this is a reality for a disease that affects 1 in 10 people assigned female at birth?

I had been waiting a year for my first appointment, I had to get a new GP and then beg them to even get a referral. I went to the specialist center and went in feeling really confident. I have educated myself and I run a support group and done this conference so I am going in with all the knowledge I should to actually get a successful outcome. And I still left bawling my eyes out because it was the most infuriating, frustrating experience.

Australia 🇦🇺

From Amber-Lea

I was diagnosed with endometriosis at age 20 after suffering unbearable pain since I was 13. Doctors told me it was normal and always pushed painkillers on me that never did the job. During a trip to the emergency a week before my 20th birthday, three doctors told me I had pelvic inflammatory disease and that I would never have children. Needless to say, I was distraught. I tried to accept I would never have kids. I finally got the date for an explorative surgery.

The surgeon told me afterwards that I had sparsely spread endometriosis throughout my abdomen. 6 months later I had the operation to remove the endometriosis and had a Mirena inserted. 6 months after that, still with constant pain, the Mirena was removed. It had moved and started to grow into me.

Mexico 🇲🇽

From Caroline, 31 y/o

I still had acne pretty late at 17 or 18. I saw a dermatologist very often [in France] and she just gave me a surface treatment. But a dermatologist in Mexico, after looking at me and asking some key questions she told me “You certainly have PCOS”. In France, they didn’t even think about it.

Sometimes you have this thinking that Western medicine is supposed to be better at some things … There is all this knowledge and they know about things but in France, it wasn’t that common at the time to detect [PCOS]. At the end of the day, I was pretty lucky to be detected there, otherwise, I don’t know how much more time it would have taken to be diagnosed.

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