I Have PCOS. Here's What You Need To Know About This Not So Rare Disease

Could you be one of the millions of people suffering without a diagnosis

Last October I went to the doctor for the first time in almost 10 years because I was going to the bathroom every 5 minutes, throwing up, sleeping a ton and my belly had grown so much that I looked about 6 months pregnant. Having had unprotected s*x with my (at the time) boyfriend, I was a bit concerned. I was not pregnant. I was diagnosed with polycystic ovarian syndrome. This started me on a journey through a tangled web of misinformation and bad advice. You see, like many diseases that affect women and trans men, it is pushed to the side and ignored. These are most important facts for people to know

1) What are the symptoms of PCOS?

People with Polycystic Ovarian Syndrome have periods that are heavy and far apart. I have at times gone up to a year without a period and when I do get my period, I have "accidents". I had an incident of heavy bleeding for two months straight 3 years ago and I *almost went to the ER a couple of times*

People with PCOS also can have acne, or if you're unlucky you can have excess hair growth on your face and thinning hair on your head.

The thing is when most people, including doctors sometimes, hear Polycystic Ovarian Syndrome, they think it means that the person must have many small cysts on their ovaries. Many of us do, I certainly do. But not everyone who has it do have cystic ovaries

Many people with PCOS struggle with infertility

Lots of us struggle with major bloating and tend to collect weight around their belly.

2) How common is it?

According to medical studies, between 3 and 10% of all women and trans men have PCOS and up to 75% are undiagnosed. Below is an interesting article about who is diagnosed and where they lived.

3) What can you do to avoid inadvertently hurting people with PCOS?

Avoid asking people when they are due or congratulating them unless they explicitly tell you that they are pregnant.

Avoid calling people sir or ma'am. Some of us do have enough facial hair to be confused for a man

If you know people who have these symptoms, encourage them to go to their gynecologist or primary care physician.

4) How do you diagnose PCOS

I got both an internal ultrasound and a lot of bloodwork done. I got about 5 vials of blood drawn because they have to check thyroid, androgens, A1C, cholesterol and CBC. Diagnosis involves a combination of a physical exam, blood work and ultrasound.

5) How is PCOS treated

PCOS can't be cured. I have actually had doctors "fire" me as a patient because I refuse to take birth control. To all those out there reading this who have PCOS, you do not have to take birth control if you do not want to. I took birth control until it ruined my gallbladder.

Now I am taking metformin, which helps a lot of people with PCOS. Many people with PCOS take herbal supplements. Of course, diet and exercise help.

6) Facial hair and irregular periods don't sound too bad.

The following fact is why it is of vital importance to get diagnosed.

While the symptoms of PCOS themselves are not so bad, (although as someone who suffers from it, I think it's pretty bad) PCOS causes significantly increased risk of several other conditions including diabetes, fatty liver disease, sleep apnea, heart disease, depression, and uterine cancer among others.