Thursday, October 12, 2006

What I've Learned About PCOS ...

In the past few weeks I’ve learned a lot of new things about how my body is working – or not working, actually. I’ve read so much information that my poor brain is in information overload these days. So I thought I’d share a bit of it here in case it might help others who have PCOS and also share some resources that I’ve found helpful.

What is PCOS?

Polycystic ovary syndrome (also known clinically as Stein-Leventhal syndrome), is an endocrine disorder that affects 5–10% of women. It occurs amongst all races and nationalities, is the most common hormonal disorder among women of reproductive age, and is a leading cause of infertility.

The symptoms and severity of the syndrome vary greatly between women. While the causes are unknown, insulin resistance (often secondary to obesity) is heavily correlated with PCOS.

What are the Symptoms?

  • Irregular menstrual periods - no menstrual period, infrequent menses, and/or irregular bleeding. Any type of irregularity could be a symptom of PCOS.
  • Oligo or anovulation (infrequent or absent ovulation) — While women with PCOS produce follicles — which are fluid-filled sacs on the ovary that contain an egg — the follicles often do not mature and release as needed for ovulation. It is these immature follicles that create the cysts. 
  • Hyperandrogenism — Increased serum levels of male hormones. Specifically, testosterone, androstenedione, and dehydroepiandrosterone sulfate (DHEAS). 
  • Infertility – often the result of anovulation.
  • Cystic ovaries — Classic PCOS ovaries have a "string of pearls" or "pearl necklace" appearance with many cysts (fluid-filled sacs). 
  • Enlarged ovaries — Polycystic ovaries are usually 1.5 to 3 times larger than normal. 
  • Chronic pelvic pain — The exact cause of this pain isn't known, but it may be due to enlarged ovaries leading to pelvic crowding. 
  • Obesity or weight gain or the inability to lose weight — Commonly a woman with PCOS will have what is called an apple figure where excess weight is concentrated heavily in the abdomen. 
  • Insulin resistance, hyperinsulinemia, and diabetes — Insulin resistance is a condition where the body's use of insulin is inefficient. 
  • Elevated LDL and reduced HDL cholesterol levels, as well as high triglycerides.
  • High blood pressure
  • Hirsutism (excess hair) — Excess hair growth such as on the face, chest, abdomen, thumbs, or toes. 
  • Alopecia - male-pattern baldness or thinning hair 
  • Acne/Oily Skin/Seborrhea — Oil production is stimulated by overproduction of androgens. 
  • Seborrhea is dandruff — flaking skin on the scalp caused by excess oil. 
  • Acanthosis nigricans (dark patches of skin, tan to dark brown/black) — Most commonly on the back of the neck, but also but also in skin creases under arms, breasts, and between thighs, occasionally on the hands, elbows and knees. The darkened skin is usually velvety or rough to the touch. 
  • Acrochordons (skin tags) — Tiny flaps (tags) of skin that usually cause no symptoms unless irritated by rubbing.Prolonged periods of PMS-like symptoms - bloating, mood swings, pelvic pain, backaches Source: INIID
Because the weight gain and inability to lose weight symptoms noted above are of the greatest importance to me, I’ve concentrated on researching how insulin and insulin resistance plays a role in obesity. It is not clear which came first – PCOS or Insulin Resistance – or which syndrome causes the other.

However, as PCOS symptoms worsen, insulin resistance also gets worse, which then causes additional weight gain, and with additional weight gain the symptoms of PCOS get worse again … and the circle continues. So getting just one part of that circle under control will help to stop the cycle.

How Does Insulin Work?

Insulin is a hormone secreted by the pancreas. It helps the body convert food into energy by converting carbohydrates into blood glucose which is used by cells to run the mechanics of our body. Once converted, glucose can pass from the blood stream into the cells that need energy to function. Inside the cell, glucose is either used for energy right away or stored for future use in the form of glycogen in liver or muscle cells.

The body’s capacity to store glycogen is limited and can be depleted quickly (10-12 hours). The average person can store approximately 300-400 grams of carbs (once converted to energy) in your muscles and about another 75-100 grams in the liver. (For comparison, 100 grams of carbs is equivalent to about 2 cups of cooked pasta.) When both the liver and muscles are glycogen full, excess carbohydrates are stored in adipose tissue or body fat.

What is Insulin Resistance?

Insulin resistance occurs when the normal amount of insulin secreted by the pancreas is not able to properly make the conversion of food into energy because of some defect in the process (researchers are still trying to figure out the “why’s”). Because the first release of insulin didn’t do the job it was suppose to, the pancreas secretes additional insulin to maintain the proper level of blood glucose. Eventually our body stops responding to the excessive amount of insulin and will not be able to use the food you eat as energy – thus those calories are quickly stored in adipose tissue (body fat). Eventually tests will show that insulin levels will stay high over time, when it should instead go up with each meal and then return to normal. And if blood glucose levels remain high for extended periods of time, it essentially blocks our body’s ability to use fat cells for energy.

What’s the Solution?

Diet, lifestyle and medication are the most common recommendation in the research that I’ve read. For decades doctors have recommended the same types of diets for their patients to lose weight - low-fat / high-carb / caloric restricted diets with moderate exercise. However, for PCOS and Insulin Resistant patients these types of diets will actually worsen the symptoms – and this new research seems to be slow in getting into the doctor offices of our primary care physicians.

Doctors are still recommending the same, across-the-board diets no matter what types of illnesses their patients have. But the plan an insulin-resistant patient should be following is actually low-carb / high-protein / moderate-fat type of diet with a daily vigorous exercise program. Your diet should have 30-40% of total calories coming from carbs, 40% coming from protein and the remainder from “good” fats. Avoiding refined / processed carbs is the key and trying to eat as close to whole foods as possible – such as whole wheat bread rather than white bread or old fashioned oatmeal rather than the little packets of instant. Or better yet, concentrating on getting your carbs from veggies, fruits, nuts and seeds instead of wheat or grain products. There is also some medications that can aid in putting insulin levels back in balance and I plan to explore these further and talk to my doctor about this option.

What did I do wrong?

I’ve been dieting for months now – actually about 14 months – and have had very little success.

I lost 24 pounds in the first 4 months, then not another single pound for 6 months after that. No matter what I tried (diet change, workout change) I couldn’t lose any more weight. I continued eating right and exercising during that 6 month plateau. But eventually I got weak, frustrated and discouraged. Over the last 4 months, I gradually cut back on my workouts – from 6 days of intense workouts to 3 days a week. I saw the weight creep back on slowly but I just didn’t have the heart to go back to the intense workouts that were doing nothing for my weight loss.

I also talked to my doctor about what I could do to make things work better. Instead of any real help, my doctor (fully aware of my PCOS) simply “patted me on the head”  (metaphorically, of course) and told me to use more willpower and I’d lose the weight.

At that time I didn’t know about the connection between PCOS and weight - is it right to assume he didn’t either? He’s my doctor; I should feel like I can trust him when it comes to my health. Unfortunately, I no longer have that trust.

But now that I know about the connection between carbs, blood sugar levels and my insulin resistance (I haven’t been tested yet, but all the signs are there) --- I can look back at my food journal and know that I wasn’t eating right for my condition. Instead of the 40-40-20 formula I was eating 60c-20p-20f. WOW!  No wonder my body was rejecting my weight loss efforts. I was sabotaging myself and didn’t even know it.

The online food journal was estimating that I should have been losing 30 pounds every 10 weeks. If that were true, then would have lost 150 pounds within a year. But the calories-in vs. calories-out theory that may hold true for healthy people, does not apply to those who have a metabolic issue that prevents weight lose.

I’ve done a ton of research and have found several great resources. All of the information above has been collected from various websites and books I’ve found in the past few weeks. I’ll share several resources here:

The International Council on Infertility Information Dissemination, Inc.
This website focuses on infertility, however they have an outstanding section on PCOS that I found the most helpful. The FAQs are thorough and covers many things that other sites do not.

Soul Cysters
This is a “support group” type website with forums and discussions with women who have PCOS. The “Research” section is comprehensive and in depth. I haven’t fully explored all there is to find at this site, but it is at the top of my to-do list.

Polycystic Ovarian Syndrome Association
This website is an actual association where doctors, professionals and patients can join for a fee. However, there is a ton of great information here. I especially enjoy the forum section where people are discussing their treatments and symptoms.

Natural Health Solutions for PCOS
Dr. Nancy Dunne dedicated her medical practice to the treatment of PCOS after her daughter was diagnosed. She takes a natural approach to the treatment of PCOS and its symptoms through a specialized diet of whole foods and the elimination of wheat/grains and dairy products. The resources here are abundant and often have a different spin from other researchers because of her natural approach. She has also written a book (either hard copy or downloadable e-book) that has more information than you ever thought you needed to know! I bought it and am about ¼ of the way through so far.

This post has gotten really long, so I’ll close for now. As I learn more about PCOS and how it affects my weight loss journey, I’ll share it with you here.

Talk to you later


  1. Hi Pam! I think you have every right to be upset with your doctor for not informing you. Luckily, the internet can be a god send when looking for resourses.

    I suppose that if I had found out what you have, I too, would look into it. I would check with the WLS center that you are going through. They should be very helpful in answering the questions you have regarding the new info you have obtained.

    I wanted to let you know that I finally got a surgery date. October 25th! It's coming up quick.

  2. Hi Pam: Followed your link from SJ. I also have been diagnosed w/ PCOS. I am now on metformin. Although my fasting glucose test was normal, my doc kept me on it b/c I am TTC. It also is supposed to help with testosterone levels.

    I was trying to follow the GI diet for a while. Need to get back on track.


  3. Hi Pam, I have been looking at Dr. Dunne's work. Have you had personal experience with her approach? Particularly for infertility? My daughter is ready to begin conventional fertility treatment and I am asking her to give this approach a try first. Did you come to any conclusions on Dr. Dunnes approach? My daughter's PCOS is complicated with a recent diagnosis of Interstitial Cystitis. The pain is dibilitating. I believe there must be some connection...inflamation...? but, have not found anything in my research.I see that you did this PCOS research in 2006, anything new? Thanks, your OH friend, Jo

  4. @Jo -

    Send me an email and we can chat some more about your specific questions. But in general.... infertility was never a concern for me because I wasn't trying to get pregnant and really have no intention of having children. I was concerned mostly about relieving the symptoms of PCOS.

    I really believe the diet that Dr. Dunne lays out is very effective for controlling insulin resistance. It's strict and very difficult to make the changes, but it makes total sense. Eliminate the items that screw up insulin production from your diet and you can control many of the symptoms.



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