PCOS: How Does It Affect Women?
As I detailed in my 400lb weight gain blog entry, I am diagnosed with PCOS, and also two other thyroid and endocrine conditions, mine is so bad, they considered adrenal tumors, and I do have high cortisol though one Cushings expert I consulted with considered that as coming from other factors including the severity of my PCOS.
I am glad this article, talks about how PCOS needs to be taken seriously as a life long illness not just a "mild" condition that interferes with fertility. In my case, at least three endocrinologists have told me I have PCOS in one of it's most severe forms and could have one of the worse cases in the country. My signs of the condition actually showed up with brown spots, even while I was near normal size by the age of 13 but I would not be diagnosed til age 30, after my severe weight gain. Endocrine and autoimmune diseases in general are in my family.
Psychologically, PCOS is a brutal condition.
In its most severe form, a woman is stripped of nearly everything that society sees as womanly, a "theft of womanhood," as some sources call it. She probably is very fat, balding, has a mustache or other facial hair, has acne and body tags, doesn't cycle regularly, and has difficulty having children. She is seen as sexually unattractive, epitomizes the image of the "ugly" woman in our society, and is the object of many jokes and much derision in the media. Is it any wonder some women find this condition incredibly demoralizing?
Adding into this is the lack of understanding around PCOS as a condition. Even when you have an official diagnosis, some friends and family consider it a dubious finding. In their view, you're just looking for an excuse for being fat, crying about how your "bad metabolism" causes your obesity, instead of taking responsibility for your supposedly poor eating. They roll their eyes or accuse you of closet binge-eating instead.
My family was good about it, because they knew my body worked differently especially as I grew older and had more problems. My periods had totally disappeared by age 19 unless I took a drug like birth control pills or Provera to force one.
I have to admit this part is very true. I know most except my husband, best friend, and relatives who have lived with me, do not believe me about my eating habits. Some of the better doctors admit my severe metabolic problems but information about PCOS is woefully limited even in the medical community:
Doctors often don't believe you if you tell them you eat normally either, thinking you must be in denial about your eating, or that you are too uneducated about "proper" nutrition to really understand how to eat healthy. Furthermore, the shopping cart and food intake of a woman with PCOS are under continuous scrutiny and criticism, adding constant stress to daily life. The "obese" woman with PCOS always feels on the defensive about her food or exercise habits.
This disbelief about their experiences and the burden of constant surveillance often takes a considerable toll on PCOS women's self-esteem. And for those who truly do struggle with eating disorders after years of dieting, the shame around dealing with that on top of PCOS can be overwhelming.
She goes on to talk about educating care providers and others about PCOS. Her summation is very important here. I would like to see that change too.
Because of its implications for long-term health, PCOS deserves to be taken seriously, regardless of the patient's age or whether or not they want children. It needs to be seen as a life-long condition, not just a concern tied to pregnancy.
I am going to print this article out when I get a chance. Please do read it.