Guide to PCOS

Women on the Choice Mom discussion board are talking to each other this week about dealing with Polycystic Ovary Syndrome (PCOS). About 1 in 10 women find out eventually, often when they are unsuccessfully trying to conceive, that they suffer from PCOS, which is largely a hormonal imbalance.

To offer more insight for PCOS sufferers in the Choice Mom community, I’m offering brief summaries here of some of the latest findings presented at the recent annual meeting of the American Society of Reproductive Medicine (ASRM). Note that I am compiling these as a journalist; I’ve never been trained in medicine. I welcome members of our Choice Mom community who can shed additional light on the nuances of this research to share their comments in the field below.

There were dozens of research papers presented at the 2010 ASRM conference (reproductive medicine) about PCOS. Here are samples of some of the most recent findings:

  • A group of 1,555 PCOS sufferers completed a questionnaire. These women reported that it generally took an average of 31.3 months to receive a PCOS diagnosis, and they sometimes saw as many as four doctors. What this tells me is that more women need to be aware of what PCOS is so they can have more informed conversations with the right multidisciplinary team of healthcare providers and get a diagnosis sooner.
  • A group of 121 PCOS sufferers were compared to 1,383 other women seeing assisted reproductive technology (ART) care, by researchers at the National Institutes of Health and Shady Grove Fertility in Maryland. Adjusting for age, BMI and multiples, the association between PCOS and pregnancy loss was found in this study to be statistically significant. A woman suffering from PCOS should be aware that her risk for pregnancy loss is higher than that of a woman not suffering from PCOS, based on this single study.
  • A second study with a team of researchers from the University of Illinois College of Medicine and University of Chicago examined randomized controlled trails. Of 495 women with PCOS using a variety of treatment protocols, the miscarriage rate was 24.6%. Of 186 women with unexplained fertility, the miscarriage rate was 19.9%. Of 328 women in the general reproductive population, 11.3% experienced pregnancy loss. The study did not indicate age ranges for these women.
  • A team in the Netherlands wanted to determine the rate of pregnancy risk for women with PCOS. Of 497 women with PCOS, 444 tried to conceive and 382 of them got pregnant at least once. There were 554 singleton pregnancies; 518 singleton pregnancies were included in the analysis and compared with 2,980 pregnancies in controls. Women with PCOS had a higher incidence of gestational diabetes, hypertension and pre-eclampsia.

If you would like to learn more about PCOS, check out this Q&A, including lifestyle habits that can improve your chances of healthy pregnancy, from Choice Mom-friendly clinic Laurel Fertility Care, written specially for ChoiceMoms.org. We also received these tips for weight loss for PCOS sufferers from a registered nurse.

Choice Mom Jen has suggested the PCOS Challenge website as a great place to find discussion boards on every topic of interest to PCOS sufferers. See her story here, and feel free to share your own in Comments.

The American Fertility Association also has an excellent video explanation of PCOS, accessible here.

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  4 comments for “Guide to PCOS

  1. Jenny Ní Mhaoileoin
    July 23, 2018 at 5:59 am

    I realise this article is very old now so probably nobody will ever see this comment! Anyhoo, I’m Jenny (in Dublin, Ireland) and I have lean PCOS with amenorrhoea. I’m 32 now and was diagnosed at 17. For a long time it has been a source of great irritation and stress but now, as I contemplate having a child, it has acquired even greater significance. I plan on conceiving with a donor via IUI but have no idea how my PCOS will affect my chances of conceiving. My journey will take a big step next month when I see a gynaecologist and start to look into which drugs will hopefully help me ovulate. I really don’t want to do IVF so fingers crossed!

    • July 23, 2018 at 6:28 am

      Baby dust sent your way Jenny! — Mikki

  2. Lily
    November 30, 2010 at 12:00 am

    Lily wrote this on the discussion board and it was too helpful to not share with the wider community so I’ve added here to website — Mikki

    I just want to say that PCOS is not a dealbreaker for becoming pregnant. It’s inconvenient, annoying and certainly means you have to think about some things that others don’t, but it’s not something that means your life has come to an end. I have PCOS, and in my 20s I stopped menstruating, gained massive amounts of weight, etc. A new doctor finally diagnosed it in my early 30s, and I took steps to get it under control. In my case, a strict adherence to a low-carb diet (I didn’t want the metformin or other diabetic drugs) combined with a few months on birth control pills (to jumpstart my periods) did the trick. I lost a lot of weight, and as long as my weight stays in a normal range (not too high or too low) I’m now regular as clockwork. I got pregnant naturally (no drugs) twice at the age of 38 — the first time I had a miscarriage (common no matter whether you have PCOS or not), and the second time literally on demand (with a known donor, and the planning consisted of ‘show up, Saturday morning’) with my son.

    This is not to say that it will be this easy for everyone with PCOS — far from it. But don’t let PCOS make all the decisions. If you’re not ready to decide you want to do it on your own, don’t do it out of a panic reaction. If you have a particular vision of how you want to have a family, make sure you’ve really thought through what it means to actively choose to do it another way. I love my son dearly, but at the same time, I’ve never really come to perfect peace with doing this on my own.
    So, if you think you’re in a possible place where it could go in either direction, at your age, give yourself some time. Investigate options to get the PCOS under control — one on PCOS board I’m on, there’s a huge mommy section, including many people who had "oopsies" because they assumed PCOS meant being unable to have kids.

  3. Jen
    November 16, 2010 at 12:03 pm

    Hi! I want to introduce myself. I am a "thinker" with PCOS. I feel like a "rare-breed" so to speak and I am definitely not the poster child for PCOS. I never experienced symptoms until my early 20s and I am not over-weight. I am 28 in a few weeks and have been diagnosed with PCOS since January 2009. I will start from the beginning (this may be a little long).

    I was on birth control from the time I was 14 until I was 21. My ex-fiance and I met when I was 18, after 2 years we called off our wedding and split up, later finding out that I was pregnant. I had grown up without a father and realized I did not want to raise my child without that second parent and support from that person, something I definitely did not have with my ex. He was not fit to be a parent nor was I. I had an ru-486 abortion (the pill). Even with my facing infertility now, it is the best decision I ever made for me. I moved on with my life, grew into my own and realized what I really want out of life. Living without health insurance and going from job to job trying to grow in my career, I was pinching pennies. I failed to take care of myself the way I should have but did not feel like I had anything to worry about. FINALLY I scored an awesome job who actually gave me benefits. I had noticed that my periods were growing farther and farther apart, sometimes 40 days! I also had terrible shooting right ovary pain. I explained to my new ob/gyn that I wanted a full work up because of not seeing a gyno for so long. I received the diagnosis as PCOS and IR (insulin resistant). They say if you have PCOS, you are insulin resistant. This plays a very significant role in targeting your PCOS and hopefully reversing its effects.

    I myself have started an inositol supplement (this week) and am waiting to see a difference. I have been on birth control for almost a month now (to try and regulate my hormones and hopefully help me ovulate regularly). I am also on a gluten-free diet and even though I have been very conscious of what I eat all of my life, I am feeling so much better without gluten. It is hard sometimes to resist the good stuff like sweets and occasionally I do cheat, however I maintain all of my vitamins, supplements and keep the cheating to a bare minimum.

    Now after being single for close to 2 years, I have been dating a wonderful man for the past 5 months who I am head over heels in love with. I am a "thinker" because I am not sure if I want to give up the dream! However, I know that since before starting my b.c. again, I have stopped ovulating and want to take necessary steps to have biological children in the future, with or without my boyfriend. In the spring I plan on having my eggs harvested and start making decisions as to what steps I will take next. I have a very loving and strong support system as well as financial stability and support so these things are not keeping me from deciding to be a choice mom.

    I never thought I would be making these decisions. I thought I would get married and have children without any problems. I hope that my story is beneficial to some as well as comforting. I definitely feel like the minority in my PCOS forums, many of those women are married and TTC or are just not thinking about TTC yet. Here at choice moms, I have only met one person who suffers from PCOS. It is nice to finally have a place where I can not only talk about my "thinking" stage but also my PCOS and the struggles I may face TTC.

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