I recently came across some research that made me pretty mad. And it totally validates my own experience of being diagnosed with PCOS. And I want to share this research with you because I want you to know that you are not alone. If it took a long time to be diagnosed with PCOS, you are not alone. If you had to see multiple doctors before being diagnosed, you are not alone.
But more than that, I think we need to advocate for ourselves and all women with PCOS. PCOS affects millions of women around the world and we should have a better experience when being diagnosed with PCOS.
Women Dissatisfied with Process of Being Diagnosed with PCOS
We know that PCOS is the most common endocrine disorder in women and it affects at LEAST 1 in 10 of us, with PCOS Challenge suggesting that it affects 15% of all women.
So, if this is so common, you would think that it would be relatively easy to be diagnosed with PCOS.
But the reality is that it can be a long and painful process.
A recent survey of 1385 women with PCOS found that 33% of women diagnosed with PCOS waited for more than 2 years to finally get a diagnosis and nearly half of them had to see 3 or more health professionals before being diagnosed (1).
Unsurprisingly, 35% of women were dissatisfied with their diagnosis experience and many felt that they had not received enough information.
Another issue is that although diet and lifestyle changes are widely accepted as the first line of treatment for women with PCOS, 45% of women reported that they didn’t get any information from their doctors on the PCOS diet or about lifestyle changes they could make (2).
Although PCOS is one of the most common endocrine conditions affecting women, actually getting diagnosed can be a frustrating and drawn out process.
It Should be Easier
One of the authors of the study, Andrea E. Dunaif, suggested that PCOS is easy to diagnose and there is no reason that it can’t be diagnosed by primary care providers (3).
50% of Women with PCOS Undiagnosed
In spite of the fact that there are literally millions of women living with PCOS and in light of a lot of the secondary health risks associated with PCOS, about 50% of all women with PCOS go undiagnosed (4).
That means that they will not have the opportunity to make those all-important diet and lifestyle changes. They may not be able to prevent a lot of the health issues that are so common in women with PCOS.
My suspicion is that if more doctors were able to diagnose PCOS; if we didn’t have to go through multiple doctors and wait 3 years, a lot of those undiagnosed women would actually be diagnosed with PCOS.
My PCOS Diagnosis Story
I was diagnosed with PCOS over 10 years ago and at the time, I knew that I had a lot of the symptoms of PCOS - irregular periods, excess hair growth (mainly where I didn’t want it) and I was downright depressed.
So, I went to see my doctor who did blood tests and a physical exam and diagnosed me with PCOS. She wasn’t particularly kind of compassionate and offered me very little help. If I wanted to try for a baby, she would refer me to the fertility specialist. Otherwise there was nothing she could do.
But here is the most frustrating part of it all. I sent to see a gynaecologist 10 years before this because at 19 my cycle was still irregular. He told me that I don’t ovulate every month and prescribed the pill to fix the problem.
Why couldn’t he have just diagnosed me with PCOS? I had all of the classic symptoms and fit the Rotterdam criteria, even back then.
So for me personally, it took 2 doctors and 10 years to be diagnosed with PCOS.
What is Your PCOS Diagnosis Story?
And I know that I am absolutely not alone in my diagnosis experience. I know there are so many out there who have had a hard time putting a name to the symptoms they have been experiencing for so long.
So, if you are reading this and you think you have PCOS but you’re struggling to get a diagnosis, I want to encourage you that you are not alone! I also want to encourage you to be assertive. Be clear with your doctors and and fight for to find out the cause, whether it is PCOS or not.
And if your diagnosis experience was long and painful, please let me know in the comments. The more we can create awareness of PCOS and our experiences, the more we can inspire change! So, get in touch and let’s create a movement of women who want better practices for all women with PCOS!