u/requiredelements

I was at a women’s health event today tied to US women’s health week. This name change was actually a major topic of discussion which is positive. But people including physicians were still saying PCOS in conversation.

I’ve long said I have an “endocrine disorder” when I don’t want to explain what PCOS is, especially to men. I feel even more justified in saying I have an endocrine disorder now.

I’m the founding mod for this sub. I can’t change the name and worry about people finding us.

I’m still thrown off by “ovarian” in the name as someone with PCOS who has high AMH and high follicle count (I knew they weren’t cysts), but doesn’t have high testosterone but rather high DHEA-S (adrenal driven rather than ovarian).

I also don’t think this name change matters too much. I actually think GLP-1 medications are doing more to educate people about PCOS / PMOS than the name change. Because we’ve known thru lived experience that GLP-1s are treating PCOS … so we knew already about the endocrine and metabolic components. There are GLP and GIP receptors in the brain.

1 in 8 women have PCOS. In the US, 1 in 5 of those women have already tried a GLP-1. The new era of PCOS / PMOS treatment had already begun prior to this name change.

What do you all think of this new name?

I'll go first:

This was prior to my formal PCOS diagnosis. I was 22-23 and had freshly moved to New York. I had just started my first big girl job and had good health insurance for the first time.

I visited a new gynecologist and asked about egg freezing during my appointment - because I was concerned about fertility due to my highly irregular periods and my friend's older sister had just done egg freezing. She said: "If it's important for you to have a baby, you should just have one now."

Mind you, I didn't have a partner. I was BRAND NEW to NYC and had just started my new job two months prior. I had no financial stability. And irregular periods?!?!

That was the last time I saw that GYN.

PCOS was originally called Stein-Leventhanl Syndrome, named after the researchers who first reported on the condition. These researchers also coined the term "polycystic ovaries."

Researchers at Monash University are leading a global initiative to rename Polycystic Ovary Syndrome to better reflect its metabolic / hormonal roots and reduce the current misleading focus on ovarian cysts. The new name is expected to be announced this year, in 2026.

Some potential new names suggested:

• Metabolic Reproductive Syndrome (MRS)
• Metabolic Hyperandrogenic Syndrome (MHS)
• Ovarian Dysmetabolic Syndrome (ODS)
• Hyperandrogenic Persistent Ovulatory Dysfunction Syndrome (HA-PODS)
• Polygenic Cardiometabolic Ovarian Syndrome (PCOS)

What do you think? Any other name suggestions?