The Fat Truth Behind PCOS: Part 1

September is Polycystic Ovary Syndrome (PCOS) Awareness Month so we thought we’d tell the Fat Truth behind PCOS.

The PCOS Club

It is a sisterhood it feels with 1 out of 10 women having PCOS, which is a common hormone abnormality. It seems that PCOS came out of nowhere but the truth is, PCOS was noticed more than 80 years ago by Irving Stien and Michael Leventhal.  At their practice, they noticed a pattern among some of the infertile women with menstrual irregularities.

These observations were published in a landmark report. According to the National Institute of Health, the causes of PCOS are very complex. Lifestyle, genetics, and health are all factors that affect PCOS. It’s not just a “Fat Girls Problem” but it is something impacting those in our community. Which is why we reached out to different women to share their truths and journey with PCOS.

Meet Adriane

Name: Adriane
Age: 37
Occupation: Public Servant

When and how I was diagnosed:
My GP referred me to a gynecologist at the age of 15 after my period stopped for about 6 months only a year after I began menstruating. Then I had my period continuously for nearly a year. These periods (pun intended) were between the ages of 13-15. The gynecologist did a physical exam, blood tests (hormones/blood sugar), and after an ultrasound, he confirmed the diagnosis of PCOS. The diagnosis was over twenty years ago. It has been confirmed since by subsequent doctors.

Do you have children?
I do not have children. I was told at 15, that the severity of the scarring on my ovaries meant I wouldn’t be able to have children or if I did manage to conceive, it was unlikely I would carry a baby to term. When I was 30, a gynecologist told me that I could possibly have children; I thought for so long that children weren’t on the table, I didn’t picture myself as a mother nor did I set my life up in a way that would be conducive to having a family (relationship, financial security, planning to consider a baby in my life).

Do you find it hard to treat PCOS and what difficulties do you face because of it?
The cysts/scarring cause a lot of pain. The hair growth is a problem that is difficult to treat. The worst is the insulin resistance though. The weight gain, as a result, is so hard to deal with and, for me, no amount of exercising and calorie-reduced diets have helped.

Finding help in managing the disease has been a struggle. Gynecologists didn’t want to see me unless I was trying to become pregnant yet I needed tests and care for the PCOS symptoms. Between my excellent GP and an endocrinologist, we manage the condition.

In terms of children, do you think if you hadn’t been diagnosed with PCOS you would have wanted children or?
I really don’t know. I would have liked the opportunity to decide with a partner if children were in our future.

What is one thing you wish you had known about PCOS when you were diagnosed?
I’m not sure. As my body changes with age, the way the symptoms present changes as well. And as medical knowledge improves, things change. So, I suppose knowing that the disease changes as you change. Sometimes it’s for the better, other times it’s a negative.

Anything else you’d like to share?
I have met a lot of women with PCOS and it doesn’t always present the same way in every woman. But all those affected struggles with it somehow.

Meet Jasmin

Name: Jasmin
Age: 29
Occupation: Administrative Assistant and Nursing Student

How old are you now and what age were you diagnosed?
I’m 29 but I was diagnosed when I was 27. I had my suspicions about it before I was diagnosed but it took 3 different Doctors to figure it out.

Did you have to ask your doctor about PCOS or did they bring it up?
I was just diagnosed with PCOS 2 years ago. In 2012 I had and miscarriage and then realized that it was difficult for me to get pregnant again. I wasn’t actively trying but I was curious about why I wasn’t getting pregnant again. My significant other and I weren’t using anything to prevent pregnancy. I went to multiple doctors and each one kept telling me that I just needed to lose weight.

I tried to lose weight and realized that it was super difficult. The Doctors were putting me on different medications to help with weight loss like phentermine and low-calorie diets. I did lose some weight but immediately gained it backed after the doctor took me off of the medicine.

Finally 5 years later, I went to one doctor that asked was I ever tested for PCOS. After ultrasounds and blood work it was confirmed that I had PCOS and was insulin resistant. I was sent to an endocrinologist to help with the insulin resistance.

Did you have any unique symptoms?
Yes, My period comes every 28 to 30 days like a regular period but I do not ovulate and my hair won’t grow past a certain length. My hair was past my shoulders growing up. I cut it before I got diagnosed and now it won’t get any longer.

How hard was it to find a doctor to help you?
It was super hard. It seems like every time I would contact a doctor about my situation they would run from it. I think it’s because a lot of doctors are not familiar with the diagnosis. Also, I feel like a lot of doctors are not fat-friendly. I googled and read reviews for multiple doctors in my area.

What is one thing you wish you had known about PCOS when you were diagnosed?
I wished I would have known what causes it. I would have tried to prevent it at much as possible when I was younger.

Anything else you’d like to share?
I love that people are starting to be more knowledgeable about the diagnosis. The more I talk about my symptoms and experiences I notice that a lot of other females were going through the same thing. Even though I wish none of us had it. It feels good to know you are not alone.

At one point in time, I felt defeated. I felt like less of a woman thinking I couldn’t produce as easy as others. I will be thirty in a few months and I’m still waiting for my time. Until then I’m going to keep fighting this thing the best way I know how.

Stay tuned for Part 2 where more members from the FGG community answer questions and more. Have your own PCOS story? Share it below!