Dear Doctor:
I have, or think I have, Polycystic Ovarian Syndrome (PCOS). In any case, I have a lot of symptoms that make my uncomfortable physically and mentally, and I really need your support on this one. Please know:
• I’ve been through a lot. Most doctors haven’t diagnosed me correctly, and I’ve had to deal with a lot of challenges getting to a place where I can try a new doctor, and have some trust that it might actually go well this time.
• I may have one or more female relatives who were undiagnosed and/or untreated for PCOS, and/or who died as a result of PCOS-related complications, such as heart disease, diabetes, or endometrial cancer. I may appear to be fearful and over-anxious as a result.
• I’m frustrated with how long it’s taken to get a diagnosis, not having complete information, and being treated as if my PCOS isn’t an important medical condition.
• I need to be treated with respect, especially when I describe symptoms that don’t make sense to you, or don’t fit the pattern. I need you to stretch your imagination, and ask even more probing questions.
• I may have medical trauma, especially if I’ve had lots of surgeries, one or more miscarriages, failed IVF attempts, a long bout with assisted reproductive technology, or if I received several diagnoses simultaneously. I’m trying not to be scared of you, but I’ve been poked, prodded, questioned, and inspected about as much as I can handle. I’m tired of having blood drawn, trying new prescriptions that don’t work or have horrible side effects, and having to show up at the gynecologist’s office a whole lot more than once a year. I’m tired of devoting huge chunks of my time, income, and emotional resources to chasing after a remedy or a cure. That doesn’t mean I’m not willing to do more, but it does mean that it may take me a bit to adjust to the idea of MORE.
• I need you to be patient while we’re figuring this out, and not give up on me. I understand from talking to other women with PCOS that it can take a while, a number of blood and fasting glucose tests, and some consultation before you can determine for sure that I have PCOS. I also know that sometimes you can’t be 100% sure, but maybe I need the same medical treatment anyway. I’m prepared for that, and I need to know you’re not going to get bored with my case before we’ve figured it out.
• I do my research. I’ve read books and articles about PCOS, and I follow a few blogs and chat boards about PCOS, so I know what other women with PCOS are going through. I know I’m not a doctor, but I may bring you information or questions gleaned from these sources. I hope you’ll take it seriously.
• I have valid opinions about what’s best for me, and sometimes that doesn’t mean traditional western medical care, or prescription medications. Right now, I’m open-minded, and I promise to keep you informed about anything else I’m trying. I hope you’ll support me as I try natural alternatives, dietary management, etc. And if you think something I want to try is actually dangerous to my health, please don’t pull any punches.
• I respect your input, and I still may need time to consider whether your recommendations are what’s best for me. It can be really overwhelming to be in your office, considering a lot of new information, and having to make what feels like very important decisions. Sometimes, I may bring a friend or my significant other with me, to help me stay focused. I still may need additional time to consider the options, and do my own research before I make a decision.
• I need you to be my healthcare partner, and my advocate. I view this as teamwork. You’re the one with the most knowledge about bodies in general, but it’s my body, and I’m definitely the expert on my body. Some other doctors don’t get that, and I need you to advocate on my behalf with them, especially on very important matters, like surgical decisions.
• I need you to be upfront about what this means for my health in the long run. I am willing to do the work to get well and stay well, but I need the big picture. I can’t make appropriate decisions without it. Don’t be afraid of scaring me. I can handle it (even if I do get a little upset in the moment).
• I need you to be aware that it’s very common for women with PCOS to have depression or other mood disorders, and to screen me appropriately, and sometimes with frequency. I need you to be fearless about making referrals when appropriate – and that includes mental health care. If I need a health psychologist, a support group, or some other form of therapy, please tell me so. Thank you!
Gretchen Kubacky, Psy.D. is a Health Psychologist in private practice in West Los Angeles, California. She specializes in counseling women and couples who are coping with infertility, PCOS, and related endocrine disorders and chronic illnesses.
If you would like to learn more about Dr. HOUSE or her practice, or obtain referrals in the Los Angeles area, please visit her website at www.drhousemd.com, or e-mail her at Gretchen@drhousemd.com. You can also follow her on Twitter @askdrhousemd.