How to Talk to Your Doctor about PCOS

Guest post from Rashmi Kudesia M.D., M.Sc., RMA of New York

During a new patient consultation, I can frequently sense that a patient is very nervous – What am I going to ask? What will I tell her? Will I be giving bad news? These are all natural reactions, but today’s post is an effort to help de-mystify the process of seeking care for PCOS, and to help make you less anxious talking to your doctor!

Often times, making the appointment and going in for it are truly the scariest parts. Honestly, I say all the time, “You’ve already done the hardest part by making this appointment and coming in – now we’re going to figure out what’s going on and make you a plan!”. So, when you’re considering whether to see a specialist, just remember: you are going in to try and get some information and understand your condition and your options. You are not obligated to follow those recommendations if they don’t seem right or if you don’t feel a good fit with that particular office; the goal is to just try and get in the driver’s seat of controlling your PCOS diagnosis. If the visit does not make you feel this way, you can try again with someone who gives you peace of mind!

Next, make sure you’ve selected the right doctor for your goals. If you’re not looking to conceive, a medical endocrinologist or reproductive endocrinologist & infertility specialist (REI) who specializes in PCOS would be a good choice. For fertility treatment, you should specifically see a REI (and again, one who lists a specific interest in PCOS is always a plus!). This is important because not all REIs provide longitudinal non-fertility care for PCOS women, and medical endocrinology offices are not going to have the capacity for cycle monitoring that may be helpful in fertility treatment.

Alright. Once you’ve got your appointment lined up with the right provider, make sure you’ve got all your records handy. If you have had routine bloodwork with your gynecologist or another doctor (this could include testing of the androgen, or male hormone, levels, which are often elevated in PCOS, diabetes screening, Pap smears, infectious disease testing, reports of any prior surgeries, and so forth), request a copy to take in with you. You have a legal right to your records, so do not hesitate to ask – but keep in mind, many offices take 1-2 weeks to process these requests, so call early!

Also, for most women not on a hormonal contraceptive, a method for keeping track of your period is very handy. Nowadays, there are many great smartphone applications that can track your cycle, which is helpful so your doctor can understand your menstrual pattern. Download one, and keep track of your cycles – at least a few months of data is helpful if possible! If you have specific questions, keep a running list and bring it with you to the visit. If you are trying to conceive with a partner, you may want him or her to join you so you both hear all the information, but if this will make you self-conscious, do the first visit alone!

Finally, the actual visit itself! Make sure to fill out any pre-appointment paperwork ahead of time, or arrive early to do so, so your doctor has time to review your history before seeing you. In the visit itself, make sure all your PCOS-related concerns are discussed. I personally think of 5 specific domains that were suggested to me through a very useful validated questionnaire called the PCOSQ – PCOS-related Quality of Life Questionnaire – and they include: weight, infertility, menstrual irregularities, hirsutism (excess facial or body hair), and mood. These are certainly all interrelated, but your doctor may not specifically address each of them unless you mention the symptoms that are bothering you most. Make sure all your questions and complaints have been addressed!

For those specifically looking for fertility treatment, even if weight is not an issue for you, your doctor should speak to you about the risks for metabolic disease such as gestational diabetes, type 2 diabetes, heart disease, metabolic syndrome and so on. The appropriate screening should be offered, and if needed, recommendations for nutritionist consultation and exercise regimens made. In many instances, young PCOS women are better served by spending a few months optimizing their overall health before getting pregnant than rushing into treatment and ending up with a complicated pregnancy. Ask if such services are available – a good PCOS diet could not only help you be healthier, but also decrease the chances of developing diabetes during pregnancy (women with PCOS are at greater risk). Remember that your health during pregnancy not only affects you, but has lifelong consequences on your child, and so the time investment is very worth it when improvements can be made!

Lastly, make sure you understand your treatment plan: which medications do what, the risks and benefits of different approaches, and so forth. Many women with PCOS are over-prescribed metformin, not offered letrozole (the first-line oral medication for fertility treatment in PCOS women), pushed into using injectable medication (high risk for developing too many follicles!) or IVF (not usually the first-line treatment). Get the success rates for each treatment, so you can form a reasonable expectation of the timeframe at hand. Find out which parts your insurance might pay for, and what a long-term plan might look like if it takes longer than expected to conceive. The key thing here is that PCOS is actually one of the fertility diagnoses with the highest prognosis of success, so don’t lose hope!

So, I hope those of you looking to see a new doctor for PCOS feel more confident now about how to approach the visit. Though it may not feel like it at times, there is a lot you can control about your diagnosis, and the first step is to assemble the right care team to help you do so! Good luck!

Dr. Rashmi Kudesia is a reproductive endocrinologist and infertility specialist who leads RMA of New York’s Brooklyn office. Dr. Kudesia specializes in treating couples who are trying to build their families.
Dr. Kudesia earned her medical degree from Duke University. She completed her residency in obstetrics and gynecology at New York Presbyterian Hospital/Weill Cornell Medical College. She completed her fellowship training in Reproductive Endocrinology and Infertility as well as a Masters of Science in Clinical Research Methods at Albert Einstein College of Medicine.

Dr. Kudesia has received numerous grants and awards for her academic accomplishments and medical research. She was awarded a Global Women’s Health certificate by Mount Sinai School of Medicine in 2011, and was nominated into the Duke Engel Society, which recognizes intellectual development, service and clinical excellence. Dr. Kudesia is the recipient of the Joan F. Giambalvo Scholarship Research Grant from the AMA Foundation in 2013, as well as multiple in-training research grants. Dr. Kudesia served as a Theme Issue Editor for the American Medical Association’s Journal of Ethics’ issue on Innovation in Reproductive Care, and has held multiple regional and national leadership positions within organized medicine.

Dr. Kudesia is an accomplished lecturer and author and has written numerous scientific research articles and manuscripts in leading medical journals. She has presented many of her research findings at national meetings, including the American Society for Reproductive Medicine (ASRM).

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