Q. Is there a resource for finding the best local doctors, who are up on the latest PCOS treatments? Not just for fertility, but to manage it on an ongoing basis?
A. Unfortunately there is no organizational listing for physicians experienced in treatment of patients with PCOS. Sometimes several physicians must be interviewed. Good suggestions are sometimes possible through the chat rooms of Polycystic Ovarian Syndrome Association, who also has a listing of physicians that have been self-identified as having an interest in PCOS. The following is an excerpt from the chapter in my recent book that partially addresses this concern.
Because the symptoms and physical findings vary and because not every patient presents with the same symptoms, the diagnosis of PCOS is often missed. Only in the last few years has medical research been able to make connections between a metabolic endocrine disorder and disturbances in multiple body systems. PCOS is challenging to physicians trained to diagnose and treat specific, well-defined diseases. PCOS patients enter the physician's office often with a collection of vague symptoms and with a problem that, even when diagnosed, the lack of curative treatments is frustrating. Although all the dots are there, not every physician is able to connect all dots that forms the image of PCOS.
A woman may begin to experience some symptoms of PCOS at a very young age She may have been overweight as a young child and the pediatrician may have told her mother to simply watch her diet. In her teens, she may have sought medical help for acne or excessive facial hair and her dermatologist offered creams or electrolysis as treatment. In her twenties, perhaps still overweight, she may have sought help from her gynecologist for irregular periods and been given a package of birth control pills. In her thirties, an inability to conceive may have sent her to a fertility specialist where she was given medication to control ovulation.
Unfortunately, our culture often discriminates against overweight women. It is a sad fact that many physicians are also prejudiced against these women, assuming them to be lazy or lacking self-discipline. These doctors often dismiss these patients, telling them to simply go home and lose some weight.
Years of seeing one doctor after another while her symptoms often compound rather than subside is disheartening. There is the perception and often the reality that valuable time has been lost while going from one doctor to another. Self esteem may drop as weight and frustration rise. Blood tests or ultrasounds that would lead to a definitive diagnosis of PCOS are not done. The bottom line is that each of these medical specialists has treated a small aspect of the problem, but none has put all the pieces of the puzzle together as PCOS.
Physicians should not consider themselves, nor should their patients consider them to be infallible. Patients must ask questions and communicate honestly with their physicians. Confidence in the capacity to live better with a chronic condition is one of the greatest tools in the struggle with PCOS. There may need to be an extensive search to find a doctor that is truly knowledgeable about PCOS. This physician may be a primary care provider, but more often will be a gynecologist, endocrinologist, or reproductive endocrinologist who has experience treating PCOS and is well informed about new research areas.
For women with PCOS, the decision about whom to choose to provide medical care is critical both to present physical wellness and long term quality of health. Seeking a doctor who has a strong base of knowledge about PCOS and who understands present treatment is quite a challenge. Many doctors simply do not have the time to keep up with the latest research about the syndrome, especially, if they are in a practice where they do not see large numbers of patients with PCOS. And some doctors, unfortunately, just aren't interested in gaining further knowledge or offering new treatments options. Furthermore, managed care/insurance providers have a strong influence on what direction many women take in getting care. For these reasons, the key to being a smart consumer is to become as educated as possible about PCOS, and gaining a good understanding of the arena in which you are seeking care.
Being a passive or non-participatory patient doesn't work with PCOS. In the hands of a less than knowledgeable or uninterested care provider, there can be an escalation of symptoms resulting in the development of diseases such as endometrial cancer, diabetes or possibly heart disease. Finding quality care is imperative for all women with the disorder.
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