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Polycystic Ovary Syndrome | How does PCOS develop?

Written by Paul Kriegler, RD, CPT - Life Time Weight Loss

What would you do if your doctor said, “You have this syndrome, but we’re not sure how you developed it”?  Would you let the wind fall out of your sails and give up?  Would you talk to other people who have it?  Would you read research articles to find out as much as you could?

Fortunately, for syndromes affecting as many as one in fifteen women worldwide – like PCOS – there’s a fair amount of research exploring the causes.[i], ii  Most of the recent research suggests that PCOS (Polycystic Ovarian Syndrome) starts during fetal development, but the symptoms do not present until puberty when the hypothalamic-pituitary-ovarian axis matures.[ii]   

What?  It may start while a child is developing in the womb, but we won’t know it until they’re in their teens?  That may be so, but there’s also some predictability: a study of genetic trends by Kahsar outlined a pattern of genetic influence on the likelihood one may develop PCOS.[iii]  The data suggested a paternal influence because the subjects studied had a 40% chance of developing PCOS if their sister also had it.  Interestingly, only 19% of the subjects’ mothers had the syndrome.  If you suspect PCOS, ask your doctor AND your sister?  It’s possible the fathers’ genes provide the spark that starts the chain of events into other expression patterns contributing to The Polycystic Ovary Syndrome. 

No matter the beginnings, PCOS is characterized by elevated growth signals in the body.  As many as 60% of PCOS cases involve higher than normal levels of androgens (especially testosterone) and further research indicates partial involvement of abnormally high levels of luteinizing hormone.[iv]   Luteinizing hormone (LH) is normally released by the pituitary gland in the brain as a signal to start ovulation.  When excess testosterone is present, ovulation can become a challenge, so the body responds by increasing production of LH in some cases.  It all amounts to a very confusing process of measuring hormone levels for which there is no great treatment protocol to address abnormalities.  Hormone treatments are centered on controlling symptoms, rather than attending to the root cause of the imbalances.

Yet another hypothesis, involving insulin and insulin-like growth factor 1 (IGF-1), attempts to pin PCOS on higher blood levels of these two hormones that act mainly as growth and storage hormones.[v]   It makes sense; if a growth and storage hormone like insulin is hyper-stimulated during the same timeframe our other growth hormones are becoming more numerous (puberty & adolescence) AND there’s a genetic predisposition to over produce the androgens (male hormones) in young women, it will complicate multiple metabolic processes as seen in PCOS. 

With what we know of the development of PCOS, one must ask a rhetorical question of sorts: How much power do we have over our genetics?  PCOS likely develops in part due to a genetic predisposition, but we can’t be certain of its presence until a dozen or so years into a woman’s life?  As well, there may be significant influence from other lifestyle factors needing further exploration, but do we have any power at all to minimize the negative symptoms experienced by one in fifteen women?  In part three of this article series, we’ll outline some medical treatments and lifestyle modifications people can seek if PCOS is discovered or suspected.  Please share your questions below!

This article is not intended for the treatment or prevention of disease, nor as a substitute for medical treatment, nor as an alternative to medical advice. Use of recommendations in this and other articles is at the choice and risk of the reader.

[i] Norman Robert J, et al.  Polycystic Ovary Syndrome.  The Lancet. (2007) Vol. 370, Issue 9588, 685-697.    

[ii] Franks Stephen, McCarthy Mark, Hardy Kate.  Development of polycystic ovary syndrome: involvement of genetic and environmental factors. International Journal of Andrology.  (2006) 29:278-285.

[iii] Kahsar-Miller Melissa, Azziz Ricardo. The Development of Polycystic Ovary Syndrome: Family History as a Risk Factor. Trends in Endocrinology & Metabolism. (1998) 9:55-58.

[iv] Huang A, Brennan K, Azziz R. "Prevalence of hyperandrogenemia in the polycystic ovary syndrome diagnosed by the National Institutes of Health 1990 criteria". Fertil. Steril. (April 2010)93 (6): 1938–41.

[v] Oberfield Sharon E. Editorial: Metabolic Lessons from the Study of Young, Adolescents with Polycystic Ovary Syndrome – Is Insulin, Indeed, the Culprit?.  Journal of Clinical Endocrinology & Metabolism. (2000) 85: 3520-25.

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Reader Comments (18)

I have pcos what can I do to become pregnant

January 22, 2012 | Unregistered Commenterdianna

I have PCOS and I'm having the hardest time trying to lose weight. If I push to hard at cardio that increases the bad hormones getting me no where. if I work to little then I get n where at all. What sort of diet should ai follow? Low carb? Low fat? Organic?

January 22, 2012 | Unregistered CommenterAgnes

I also have pcos and 2 beautiful children. When I was diagnosed, I did a lot of research and switched to a low GI diet. Within months, my periods became regular and the acne went away for the first time in almost twenty years! I became pregnant within the year. I highly recommend a low glycemic diet.

January 22, 2012 | Unregistered CommenterMe too

I have pcos also i have a wonderful baby boy. I used prova to become pregnant.

January 22, 2012 | Unregistered CommenterReshan

To Diana & Agnes: First of all, you are not alone. Since PCOS is a hormonal-based condition (sex hormones and/or insulin), it is best to first get your hormones tested so that you know for sure. The good news is Life Time offers these tests with HSA/FSA coverage. Just check under "products" tab at the top of our website & click on personal assessments for more information. Or, you can check with your club's Weight Loss Coach for more information. Once we have your levels, an RD will sit down with you and help you understand what your values mean and what specifically you can do differently within your lifestyle - all part of the lab testing fee. To get started, it's always beneficial to eat whole natural foods in place of processed - foods without labels. More high-quality lean proteins (organic, grass-fed, pasture-raised), vegetables, and healthy fats (olive oil, nuts/seeds, nut butters, avocado, flaxseed) at EVERY meal. Start restricitng the carbohydrates such as bread, cereal, pasta, crackers, etc & even fruit - the more carbohydrates you eat, the more insulin you make. When our bodies can't use the excess sugar, insulin transports it into our fat & no matter how hard (or little) we workout, we won't see a change in weight or body fat. It all starts with the diet. Hope this helps. Just remember, we are all different and would benefit from a customized consultation & coaching sessions with your club's Weight Loss Coach for the best success.

January 23, 2012 | Unregistered CommenterCindi Lockhart

I found out I had PCOS when I was 15. I am now 30 and since then I have gained about 200 lbs. I am morbidly overweight and no matter how many diets and weightloss routines I have tried nothing works. I have tried Weight Watchers, Atkins, all natural, whole grain, and even not eating at all. Nothing seems to work. I take Metformin for the PCOS, 2000 mg per day. I want so desperately to have children, but I know I can't until I get this under control. I just don't know what to do.

January 23, 2012 | Unregistered CommenterAmanda

Over the last 3 yrs. I have also found out that I have PCOS. I went for a whole year of not having my period and finally decided to go see my gynecologist. That is when they tested my levels and she told me that I need to see a specialist. I put on a lot of weight and had a lot of bloating 1-2 yrs. before I found out, but thought it was just me being lazy. I was always tired and just could not get energy to do anything. I went to go see an endocrinologist, specialist, and she has been my life saver. I found out that my Vitamin D levels were also low. I was put on a Vitamin D pill once a week and I was also placed on Metformin. Those 2 medications have helped so much. Before I saw her I had no idea what PCOS was or that it even existed.

I have done a lot of research on PCOS and it is very hard to maintain it on your own. I am not saying that it is impossible but it is hard. Being on these 2 medications have helped me get back on track with working out and I finally have energy. I have also learned that the less sugar you eat of course the better it is.

If you are not seeing a doctor, and by doctor I mean an endocrinologist, I would say make an appointment with one today. You have to find a doctor that you feel comfortable with and trust. I love my doctor and wouldn't trade her for anything.

Feel free to contact me with any qestions you may have. I know that when I was diagnosed I had no one that went through it and it was very hard for me to understand everything. If I could help in any way, even just answering questions of what I went through or how I am handling it, I would be glad to share. I know that every different experience I heard about or read about helped a little.

January 23, 2012 | Unregistered CommenterNicole

Thank you, Nicole, for showing the others who've comented that there is a great possibility to manage PCOS and it's complications. Cindi is right about trying for yourself a lower carbohydrate lifestyle to reduce insulin levels. Unfortunately, there is not one universal "plan" for those who are trying to manage PCOS.

@Agnes - working out with higher intensity (especially for periods of time lasting about 40min or more) significantly increases stress hormones, such as cortisol, which functions to further raise blood sugar and subsequently insulin levels. This gets tricky in PCOS because when insulin is stimulated and released more often, its actions combine with the higher levels of testosterone to encourage growth (body hair, fat stores, muscle, etc).

In part III of this series, I've written about the different treatment options and dietary factors to consider. Stay tuned and engaged in discussion and this all-too-common syndrome will get the attention it needs to be managed better with lifestyle and nutrition, rather than lengthy, costly, never-ending prescriptions (in some cases).

As stated in the article and by Nicole, if you're trying to manage PCOS or suspect you may be affected, you should visit with an endocrinologist to get proper diagnosis. As Cindi stated, getting tested for hormone imbalances as well as fasting glucose AND fasting insulin is essential to formulating your plan of attack. I'd recommend testing our Women's Sex Hormone Premium Panel as well as our Energy & Metabolism Premium panel. All of Life Time's Lab tests come with a one hour consultation with a Registered Dietitian to help adjust dietary strategies, lifestyle, exercise, & supplementation approaches, but is NOT meant to diagnose. If any labs are critically out of the medically normal ranges, we will refer you to your physician. Personalizing your approach is critical, so often times it is well worth the investment to work with a Dietitian longer than a few sessions (think 6 months or more, as the Code of Ethics for Dietitians suggests).

Keep the discussion going!

January 23, 2012 | Unregistered CommenterPaul Kriegler, RD/LD

I eagerly await the additional parts of this series! Thank you so much for addressing PCOS!

January 23, 2012 | Unregistered CommenterKristi

As some of the other women who have PCOS have commented, it is completely possible to have PCOS and have children. I started trying to have children when I was 25 years old. I'm now 32 with a 20 month old son. I'll give you a brief synopsis to hopefully help you avoid some missteps that I made along the way. (Again this is my personal experience - I am not a doctor or nutritionist. I agree with a previous poster - get together with your Ob/gyn or preferably a reproductive endocrinologist).

As far as my history, my periods were never right from ages 12-15. I went on birth control pills to cure that issue and stayed on them until I was 25. When I went off birth control pills, of course, my periods stopped. Because of my history, my Ob/Gyn at the time had a pretty good idea what my issue was so she handed me a prescription for Metformin (or Glucophage). I didn't take it (I didn't even really do much research into the condition - not like I have in the last few years.) I weighed ~265 lbs (I'm 5'9") at the time. We also did rounds of Clomid - I wouldn't ovulate. I got frustrated and stopped the Clomid (we were up to some high dosages and I was way too emotional.) I tried losing weight - well, tried half-heartedly. That was pretty counterproductive (the not taking the medication and half-hearted attempts). It took 3 years of just making small diet changes and exercising sporatically (I don't recommend that) and I lost 50 lbs. We tried again with various doses of Clomid - and while I was ovulating, I still wasn't getting pregnant even with IUI's (in uterine inseminations). But we moved and tried again later - about a year - which I had maintained my weight loss of 50 lbs. I was also trying to keep to a low GI diet and running and I even started taking prenatal vitamins at the time. Well the first round of Clomid worked (I was also on 2,000 mg a day of Metformin).

I'm not recommending going through all this. From personal experience, and to those of you out there trying to get pregnant - because I know that heartache - I just want you to know it is possible. A low GI diet (which was also recommended by the reproductive endocrinologist I was seeing ) and finding out what is going on with your hormones through whatever way you feel most comfortable - in my mind - is the way to go. I HIGHLY recommend losing whatever weight you need to be healthy and then trying - again this is just from personal experience. Truly - it will be better for you during and after your pregnancy and for your baby. I was told to stay on the Metforin throughout my pregnancy - which helped I think with not having a miscarriage. There is an increased risk for that with women with PCOS, if you were not aware of that. I'm not saying that is an end all be all solution, but because I was still about 50lbs overweight, I needed it.

If you have a healthy weight beforehand, you will enjoy your pregnancy more if you are not carrying around the extra weight and it helps you to have a normal size baby - and have a healthy bloodsugar to avoid possible miscarriages and gestational diabetes. I was LUCKY because I gained 60 lbs with my pregancy - but managed to have a 7 lb 4 oz son and avoid gestational diabetes. And now, while some of it has came off, I put some of it back on again too. I ate whatever I felt like because - hey I was pregnant - which was a bad choice. I now weigh in at 275 lbs. Um yuck.

So I am starting back over. I know I can get back to that 50 lb weight loss - and go even farther - and finish my weight loss journey before trying for a second baby (without taking 4 years to do it). I went off the Metformin after my son's birth, but just recently got back on it. And while it does help - as Paul said above - I don't want to be tied to it for the rest of my life. The side effects are no fun - especially the liver damage it can cause. My goal is to be off the medication by the end of the year and to be at least 2/3 of the way to my overall weight loss goal of 110 lbs.

If you take care of yourself - you and your child will thank you. Please do not feel hopeless - there is always opportunity for change for the better. Take care of yourself and the rest will fall into place.

January 23, 2012 | Unregistered CommenterWhitley79

Hi Everyone,
Great article. This condition is so difficult, but you can do better with the right diet (low Glycemic load) and smart supplement support. I would strongly encourage anyone with PCOS to take the measures the article recommends as well as Cindi's advice. I have seen these approaches works wonders with patients in our clinic in Cincinnati. It is great to see people realizing that there is so much more you can do for PCOS than just taking Metformin. Just one word of caution - as you make dietary changes be aware that it can make a big difference on blood sugar levels. Monitor your levels closely as you may need to adjust medication dosages!

January 23, 2012 | Unregistered CommenterLaura LaValle, RD,LD

Working with your doctor of course! Thanks, Laura

January 23, 2012 | Unregistered CommenterLaura LaValle, RD,LD

I was diagnosed with PCOS only 3 yrs ago, which put me in my mid 30s. It was a late diagnosis but it is one either way. Once I had the diagnosis in hand my body made so much more sense to me.
I found a few helpful, Metforman was my friend for 90 days to get my hormones back in line. Two, there is an AWESOME book out there called the PCOS DIET BOOK. It is not in print so you will have to find it, I found it at my library. This book was VERY helpful when it came to what foods to eat and not to eat to lose weight and keep my hormones in line. I will say I follow the advice pretty closely and eat very little carbs, which I love. I have lost 125 lbs by just following the books advice. The next thing I did was join Lifetime. I got a trainer who helped me put together a workout that worked for me. I have lost another 50lbs and going. I was a 22/24 and now a 16/14, my goal is a 10/9 and I should reach it this year I hope.
I read everything I can get my hands on about PCOS and apply the parts that matter to me in my life. Anyone who has this knows that there are different degrees of the syndrome so I feel that in the books and articles we need to apply what applies to each of us. There is a TON of info out there and as a patient with this syndrome I feel I need to know what is going on and how to battle it. Currently, I am reading The PCOS Patient Guide and it too is very helpful. It talks about the medical and emotional side of this syndrome.
I have tried to get pregnant and found it easier to do once I lost weight and talked to my dr...there are drugs to help and there is always IVF....I chose not to do the IVF and am very happy with the son I have.

January 23, 2012 | Unregistered CommenterTerri

Thank you Terri for posting your own success and plans for even more success! You nailed the message of these articles and discussions: SEEK INFORMATION, learn as much information as you can about yourself / the syndrome / the treatments, and APPLY WHAT YOU KNOW. Most of all, find a way to enjoy your process & work with a subject matter expert to stay aligned to your progress!

Today, Part III of this article posted here: so don't wait to read more!

January 23, 2012 | Unregistered CommenterPaul Kriegler, RD/LD

I also have PCOS, I was diagnosed when I was 14 and at 18 was put through surgery and chemical menopause to try and reverse the effects. I knew I was going to have trouble having children so when I got married I started trying right away (husband wasn't as eager as I was) then after three years and lots of trying and thousands of dollars trying infertility treatments I finally found a doctor that worked with my condition and didn't just pump me with drugs (which will not work if your hormones are not regulated!). I was very lucky and became pregnant with my now 4yr old son! After I had him I knew I wanted at least one more child and decided to just "see what would happen". I stayed on a Low Glycemic diet, MINIMAL charbs and absolutely NO sugars(It is very easy when you look at the end result, A BABY!) I also went to an Acupuncturist which was amazing and almost three years after my first son was born I conceive my second son without any medications except Pre-natal vitamins and some herbs from the acupuncturist! I only (really)tried for about two months, it was quite a shock to say the least! Getting pregnant with a condition like PCOS is very complicated and takes lots of self research but is totally possible. I was told I would "probably NEVER have children" buy many professionals but I have two wonderful little boys who have proved them VERY wrong. Stay positive and get your self informed, you too can do this!

January 29, 2012 | Unregistered CommenterGretchen

What a fantastic story, Gretchen! Thank you for sharing and inspiring.

January 29, 2012 | Unregistered CommenterPaul Kriegler, RD/LD

My ovaries were removed more than 10 years ago, due (I was told) to endometriosis. My sister had the same thing. But by the symptoms, etc. it is sounding very similar to PCOS. Could it have been misdiagnosed, or would that be impossible...given that the surgeon could examine the ovaries after removal?

January 29, 2012 | Unregistered CommenterSuzy

After reading these first two articles I started doing some research and came across the paleo lifestyle and how many women with PCOS have found success with it in every single way. They've lost weight, stopped hirsutism, gotten pregnant, cleared acne, the list goes on - now it's not for everyone. At the moment I'm doing the whole30 detox and I'm finding that my energy levels have evened out, I hardly have foggy brain and I stopped having my chronic back pain that I've had for years. I'm only half way through it but I hope I have the results some women have had on this lifestyle change. One woman actually had the diagnosis lifted from her medical record! Watch the way you eat ladies, that's the key!

March 25, 2012 | Unregistered CommenterIris

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