When you’re ready to seek help to finally learn if your symptoms are in fact caused by polycystic ovary syndrome (PCOS), be prepared to be your own advocate. You’ll need to be assertive. And, no matter what happens or what you are told, stay positive.
The truth is, finding the right doctor for you may take a while. In a 2017 survey of 1,385 women from 32 countries including the US—the largest study ever to look at women’s experiences with PCOS— half of the women who responded said they saw three or more healthcare providers before they got a diagnosis.1
It took more than two years for at least 30% of these women to finally receive a diagnosis confirming their symptoms were due to polycystic ovary syndrome.1 And when these women were finally diagnosed, more than half of them said they received little to no emotional support or information about what to expect regarding the long-term complications of having PCOS.
You are not alone! There are beneficial ways to help you stay optimistic, focused, and well-informed during your PCOS journey.
Join a support group. In focus groups and surveys, women with PCOS say talking with other women who know the struggle first-hand provides a level of emotional validation and information that they can’t get anywhere else.
You can find a group locally, or if it's more your style or more convenient, there are online support groups that will provide you with the support and connection to others that is so helpful to anyone who is seeking a diagnosis or whose PCOS has finally been confirmed.
Learn everything you can about PCOS. The most important point is to be sure you gather information from trustworthy sources—online, in books, from well-informed (not to be confused with well-intentioned but uninformed) individuals—to help you feel empowered to guide your own care. This can help you make smart lifestyle choices and to figure out what questions to ask your doctors about your diagnosis and care.
The more you know about polycystic ovary syndrome, the more likely that you’ll be inspired to make healthy lifestyle changes and to feel happy about the healthcare you’re receiving,2 based on the findings of the Australian survey of women with PCOS.
Listen to your own body. No one knows you better than you. Trust your instincts. To help you manage your care, keep track of your symptoms, your lifestyle, and your treatments as these insights can help you and your doctor figure out what’s working, what’s not helping, and better understand how PCOS is affecting you so your doctor can tailor your care to you.
Jot notes in a notebook, or on your phone. Create your own PCOS journal or buy a PCOS diary online or as a smartphone app.
Find a Doctor You Can Rely On to Treat Your PCOS
Physicians in several specialties can best diagnose and treat polycystic ovary syndrome. The type of doctor that will be best for you will depend on your symptoms and needs, as well as the types of specialists available in your area. Doctors who can treat PCOS include:
Family doctors: Your own primary care physician can take the lead in your PCOS care, and will likely draw in other specialists to help treat and resolve hormone and menstrual cycle irregularities as well as acne and hair growth concerns, metabolic challenges such as weight gain, and infertility.3
Endocrinologists: With advanced training in a wide variety of hormone-related medical problems, these specialists diagnose and treat PCOS as part of their medical focus but some focus on treating this condition specifically, which would be ideal for those in bigger cities or with access to a teaching hospital.
Obstetrician/gynecologists: Because menstrual and fertility problems can be your first warning signs of PCOS, many women start their journey with their gynecologist. Depending on your needs and other symptoms, your gynecologist might continue to treat you or refer you to an endocrinologist to coordinate your care.
Reproductive endocrinology and infertility specialists: These doctors have advanced training in menstrual disorders, ovulation problems, and infertility issues. You may work with one of these specialists in order to gain specific help so you can conceive and have a baby.
Functional medical specialists: Practitioners who seek to determine the underlying cause of your specific symptoms by evaluating your genetic, biochemical and lifestyle patterns and then working with you to lessen the symptoms through lifestyle adjustments so you can achieve a healthy equilibrium. Since much of PCOS is hormone-based, there’s a good chance that an expert in functional medicine might work for you. However, this doctor shouldn’t replace your primary doctor but rather she/he will work as a team with your primary health provider so all your needs are met.
Unfortunately, these specialists, or many of the tests they require, may not be covered by your insurance. It’s best to find out if your healthcare plan will reimburse you for the visit and/or any testing before you pursue this route as it can be costly. And, if the practitioner wants to sell you an expensive “package”, consider that a red flag. There is no one-size-fits-all treatment so you should only pay for what you need personally. To feel secure in your selection, make certain the functional medicine specialist has been certified by the Institute for Functional Medicine. https://www.ifm.org/find-a-practitioner/
Other practitioners: You may also find it helpful to work with a dermatologist to address your skin problems like acne and with excess hair growth. A psychologist or psychiatrist can help if you’re experiencing depression, anxiety or other mood changes that prevent you from staying positive or feeling optimistic. And a registered dietitian/nutritionist (RDN) can work with you create a healthy eating plan for weight management that you’ll enjoy and be able to stick with, and that fits with your medical needs and personal preferences. In this case, it might be cost-effective to invest in a multi-session plan as this is typically less expensive and commits you so you’re likely to go back to see the process through.
How do you decide which doctor you should go to? Start with your current healthcare providers. Ask them for a referral to someone who a lot of experience with PCOS. It’s reasonable to ask the specialist how many women with PCOS do they typically treat in a week….you want a doctor who answers at least 2-3 so you know they are familiar with and current on patient care of polycystic ovary syndrome.
Another option is to use the search tool provided by PCOS Awareness Association whose list of specialists have proven experience treating this condition. Search for a PCOS specialist. http://www.pcosaa.org/find-a-specialist/
In the end, you’ll know you’ve found the right doctor when he or she clearly gets you. It might take a few visits to different specialists but don’t give up, just push ahead until you feel you are in good hands.
American Family Physician suggests women with PCOS start by asking their doctor these questions: 3
But don’t stop there. Women with PCOS say it’s just as important to feel that the doctor really hears you and takes your concerns seriously.
In a British study,4 women said they felt they received the best treatment from doctors who:
EndocrineWeb is constantly updating the information on polycystic ovary syndrome and will introduce new research findings regarding the diagnosis and treatment of PCOS. So, it's always good to check the News & Research section for updates that you can share with your doctor to see if any changes in your care would be helpful.