I got my start in this specialty in a nontraditional fashion. Even though I did a lot of work in endocrinology initially, I gravitated into sports nutrition, and from there, eating disorders. I initially started my business thinking that it would be a resource center for eating disorders. But PCOS followed me. I kept getting phone calls from women looking for help with their eating disorder who mentioned they'd recently been diagnosed with PCOS. Thinking there must be some relationship, I started mentioning the symptoms of the syndrome at local mental health networking meetings. I started getting counseling referrals from eating disorder specialists--and they tended to be women who had initially been diagnosed with bulimia, put into traditional eating disorder treatment, and then a few years later,"relapsed". It was with this"relapse" that the PCOS was diagnosed.
I put that word into quotes, because you can only relapse from a disease you've been treated for…if the treatment you received is for the problem you have. The word blames the person for the diagnosis with the problem.
I have come to believe the problem may lie, in large part, with the caregivers. Eating disorder symptoms are primarily behavioral. There isn't a blood test you can administer, or an x-ray you can examine. And therefore, if you fit a certain criteria, you must have the disorder.
Just as diabetes won't respond to psychotherapy, PCOS, which in many cases is PREdiabetes, won't either.
The problem with PCOS is, the hormonal imbalances it renders can induce the very same behaviors that we use to diagnose eating disorders. Carbohydrate cravings are extreme. Hormones are so out of whack that the only thing that manages them, it seems, is extremes in diet and in activity. And God forbid, if no doctor caught on to your hormone problem and you decided to take things in your own hands…then you have control issues and you have an eating disorder.
What can make it especially challenging to diagnose PCOS, if it has progressed this far, is that the extremes in exercise and diet may, at least temporarily, suppress abnormal labs. It takes a skilled clinician to even see what's going on. I think back to my 3 1/2 years in an inpatient treatment center, and how many young women came to me complaining that as they started to refeed, they were craving carbohydrates. And because it was the treatment center's philosophy, I smiled back and told them all foods could fit.
A lot of eating disorder treatment is about the battle between the clinician, who wants his/her clients to believe that they can get back to eating everything in moderation, and the client wanting to tell the clinician that just isn't so, but playing the game as long as she needs to in order to graduate to the next level move toward discharge.
Last year I wrote to several hundred mental health practitioners who specialized in PCOS, introducing my company and the work I do with PCOS. I described the symptoms and explained to them what I just explained above. I received who knows how many polite responses, thanking me for my interest, but they worked with eating disorders, not PCOS, and there wasn't really a need for my information. I wondered how many thousands of women were sitting in therapy, being told if they just addressed their"issues"…they could beat the problem.
Don't get me wrong, I know there are plenty of issues in PCOS that psychotherapy can benefit. But there's a difference between anxiety over the prom and anxiety driven by excess cortisol levels resulting from a poorly balanced nervous system.
Sometimes I wonder if it's not the same diagnosis, being given a different name depending on the office in which it first shows up?
I sure hope at least some of those women have found my website on the Internet and have benefitted from the information I've learned and posted there since that tenure.