Your voices: women living with PCOS / PMOS
On patient forums and communities, certain phrases come up again and again. Here are 10 anonymised voices, all publicly sourced, that put words to what you might be experiencing in silence.
Editorial note: all testimonials presented here come from public sources (Carenity, media articles, patient-advocate platforms) and are cited with direct attribution to the original source. None are invented. Frequently reported patterns are clearly labelled and sourced to academic publications. If you wish to share your experience anonymously, contact us via the About page.
The diagnostic odyssey
The average time between first symptoms and a PCOS/PMOS diagnosis is estimated at 2 to 12 years across studies (Endocrine Society, 2023). What these women experience is not an exception — it is the norm. ACOG (Practice Bulletin 194, 2018) acknowledges that PCOS remains underdiagnosed and undertreated globally.
“I was diagnosed approximately 12 years after my first symptoms appeared.”
“You are not crazy, it's not in your head, you are simply ill.”
Frequently reported pattern
“I was told to lose weight for 7 years before anyone tested my insulin.”
Documented pattern: the majority of PCOS patients report having received weight loss advice before any hormonal investigation. Source: Contemporary OB/GYN
Medical dismissal
Medical dismissal is one of the most commonly cited barriers in PCOS/PMOS patient testimonials. It is not anecdotal: a Contemporary OB/GYN study (2023) found that more than 60% of patients felt unheard during initial consultations. The NHS (CKS PCOS guideline, 2023) and NICE explicitly acknowledge this gap.
“We have to keep fighting for our conditions to be recognised.”
Frequently reported pattern
“My gynaecologist said PCOS couldn't exist without weight gain — it took me 6 years to get diagnosed elsewhere.”
Documented pattern: lean PCOS affects 20-30% of patients and is systematically underdiagnosed. Source: Illume Fertility
Community and collective strength
Online communities play an irreplaceable support role. Forums such as Reddit's r/PCOS, Verity UK's community, and Cysters provide space for women to share experiences and feel less alone. The anonymity of online spaces makes them particularly valuable for discussing stigmatised symptoms like hirsutism.
“Reddit is a favorite place to discuss PCOS — and especially hirsutism — because of the anonymity.”
“It is essential not to be discouraged and to stay positive.”
Frequently reported on r/PCOS (ML sentiment analysis, n = 11,000+ posts)
“Inositol transformed my mood and my cravings.”
Among 66 posts mentioning inositol in a machine learning sentiment analysis of r/PCOS, mood effects (RR = 25) and hunger (RR = 10) were the most frequently cited benefits. Source: PubMed PMC12209044
The 2026 renaming: finally acknowledged
In May 2026, the international endocrinology community officially renamed PCOS to PMOS (Polyendocrine Metabolic Ovarian Syndrome). For many patients, this change symbolises long-awaited recognition — not just of their condition, but of the full metabolic and endocrine complexity they experience every day.
“Many women living with PMOS said they finally feel seen and acknowledged.”
The renaming goes beyond semantics. The new name — Polyendocrine Metabolic Ovarian Syndrome — reflects the systemic nature of the condition: one that affects metabolism, the endocrine system, and ovarian function simultaneously. It acknowledges that lean patients are equally affected. And it breaks the stigma of “polycystic ovaries,” which is not required for diagnosis under the revised Rotterdam criteria.
A word from our team
These voices remind us why this site exists. The diagnostic odyssey is not inevitable — it is partly the result of a lack of clear, accessible, commercially neutral information. Our role is modest: to give you the right tools to prepare your conversation with your doctor.
If you have lived a similar experience — or a very different one — and would like to share it anonymously to help other women, we read every message. Contact us via the About page. Your testimonial will be cited with your agreement and will only appear once verified.
Communities and resources
- Verity PCOS UK — UK patient charity for PCOS/PMOS
- PCOS Challenge — US non-profit patient advocacy organisation
- Cysters — UK community for women of colour with PCOS
- r/PCOS on Reddit — 250,000+ member community for peer support