Welcome to the world of PCOS. Some of us find ourselves here, discovering we have PCOS, after years of knowing something was wrong with us. This includes countless visits to doctors who mis-diagnose us. Some of us get here after seeing a reproductive endocrinologist i.e. Fertility Dr. , after trying unsuccessfully to get pregnant on our own. Many of us walk the streets, still to this day, with no idea what is wrong. The symptoms of PCOS are so diverse and easily attributed to other things, that it is HARD to get a diagnosis. It took me 6 years of regularly seeing all different kinds of doctors. Finally I ended up at a Reproductive Endocrinologist to get the final blow. But, he had no interest in treating me because I didn't want a baby. I was only in my mid twenties. I wasn't ready. But what I was ready for was to get better. However, because there is so little support or knowledge in the medical community it got a lot worse before it starting getting better. So here are ten things to know about PCOS and what to expect.
1. Doctors are not your ally. You are your ally. Don't expect a miracle cure. They can give you birth control, Metformin and Spironolactone - but the real power is in your hands.
2. You have to be your own advocate. Literally form your own support group with yourself. Make a pact with yourself that you are not going to dismiss your disease the way the medical profession seems to want to do.
3. If you don't take control you're body will easily and quickly spin out of control. One time I eased up my diet and I gained 50 lbs in 4 months. One doctor I read said " A person with PCOS may eat 7 days worth of food, but the PCOS body metabolizes it as though you ate 8 days worth of food." This means you have to eat healthy, not just to lose weight, but just to keep it off. Think of your body like a giant Jenga puzzle. You must keep everything in balance. Balance is your friend. You have to take care of yourself like a prized stallion if you want to win this race against PCOS. Make yourself and your health a priority. Eat right. Exercise. Treat your conditions. If you have alopecia use Rogaine. If you have pre-diabetes or metabolic syndrome take Metformin. If you have excess hair growth or hair loss take spironolactone to regulate your testosterone. Get mental health help for your depression. Take the pill if you have painful periods or acne. I strongly believe the final answer lies in diet and exercise, but I don't discount some of the medical treatments out there. Metformin costs $5-20. Spironolactone $5-30. Birth control is free with health insurance and maybe $35 without. Rogaine is cheap as hell at Wall-Mart and Sam's. What I don't suggest is spending tens out thousands of dollars on fertility doctors, silly Chinese acupuncture and herbs or a nutritionist. I mean you can if you want to, but there are other ways.
4. PCOS causes many more things than just infertility. Weight gain, hair loss, hair where you don't want it, depression, acne, painful cysts in your ovaries, diabetes, heart disease, metabolic syndrome, etc. While it is the number one cause of infertility, it is so much more than that one symptom.
5. PCOS is a money machine for doctors- if you are trying to get pregnant. If you aren't trying to get pregnant, expect to be treated and passed around like a beggar. Medicine is a for profit industry. The real money in PCOS is in giving expensive fertility treatments to women who want to have a baby.
6. There is some crazy treatments out there. Don't get cheated. The very expensive and highly recommended Fertility Doctor I went to suggested I check out this acupuncturist and Chinese herbal medicine people who rented a room in their building. So I made an appointment. I made the mistake of not knowing the cost first. I just wanted to check it out. I am all for alternative therapy. Basically the guy looked at my tongue for 30 minutes and then we talked about this voo-doo medicine and then he charged me $200 out of pocket because insurance didn't cover this. Needless to say - I did not go back. I feel bad for the desperate women trying to get pregnant who probably spend thousands of dollars. The guy literally said "That's how I roll" when I shockingly said "$200 for a consultation!" Douche-bag.
7. You have the power to change your condition. PCOS is an endocrine disorder. It is all about balancing your hormones and your insulin levels. Proper diet and exercise are the #1 way to beat this disease. Women can control their symptoms and get pregnant without spending tens of thousands of dollars to the Fertility Vulchers.
8. You can't just lose weight and you are cured. You can't just take birth control and you are cured. You have to completely change the way you live and eat - forever. Or at least until menopause. I have worked tirelessly to loose weight and succeeded dozens of times, only to have the weight come back with a vengeance. You pretty much have to eat like a diabetic - low glycemic - all the time - not just when you are trying to lose weight, but also in trying to keep the weight off. The diet is the cure for not just the weight but for all the symptoms of PCOS. I can remember weighing 130 lbs wearing a size 3 and I couldn't figure out why my hair was falling out like a chemo patient. Now I know. My diet was off - therefore my insulin levels were off which caused my testosterone to be out of whack which caused me to suffer from alopecia. See it isn't just weight and it isn't just fertility.
9. Try and see the bright side. Yes PCOS sucks. However, it can be a very good excuse to take excellent care of your health
10. Find support. There are web sites, more and more every day that offer support. Write "I have PCOS" on your facebook page and you will be inundated with other women messaging you saying "I do too - want to talk?" Here are some web sites I like.