Today is part 1 of a series I'm doing on PCOS and Intuitive Eating. A huge number of clients I work with in my practice are diagnosed with PCOS, and one thing I've found is that there is a TON of misinformation, confusion, and a whole lot of stigma out there for a condition that affects 1 in every 10 women.
Today I'm going to share a little bit of background on what PCOS is, and talk about why dieting and weight loss are not the solution. The next two posts in the series will cover eating and other lifestyle changes that can help, and then delve a little deeper into intuitive eating for PCOS.
What is PCOS?
PCOS, or Polycystic Ovary Syndrome, is a endocrine (hormonal) disorder. No one is sure exactly what causes PCOS, but it has both genetic and environmental links. It's also considered an inflammatory condition, meaning underlying chronic inflammation seems to drive much of the condition. Unfortunately, there is no cure, but there is a lot of medical management and lifestyle changes that can reduce inflammation and decrease, or even eliminate symptoms.
The main hormones involved in PCOS are androgens, progesterone, and insulin. Women with PCOS have higher levels of androgens, which are often referred to as "male hormones," although all women make androgens in their body. High levels of insulin paired with insulin resistance is commonly found with PCOS. Insulin is a hormone that allows the body to absorb glucose into cells, where it's used for energy. We'll talk a lot about insulin in this series, because it ties into a many of the common eating and weight concerns women with PCOS experience. Low levels of progesterone is another marker of PCOS.
What are symptoms of PCOS?
Symptoms are wide ranging, and often things that are brushed aside as normal for women (hello painful periods and moodiness!), or caused by stress. Because of this, many women will struggle to get a diagnosis, or live for years (decades!) with symptoms that they've accepted as a normal part of life. A frustrating theme in women's health!
Here's some common symptoms of PCOS...
- Fatigue - Because glucose is our body's main source of energy and insulin resistance slows the uptake of glucose into cells, fatigue is a common complaint. Also, sleep problems, like insomnia, are a common problem, adding to the fatigue.
- Unwanted hair growth - Hirsutism, or excess hair growth, is commonly found on the face, chest, arms and abdomen.
- Hair loss/thinning hair on the head
- Difficulty losing weight - While higher weight is not a cause of PCOS, and many thin women get PCOS, difficulty losing weight is a common experience - and one of the main reasons I see many women with PCOS in my office, totally fed up with dieting. Just know that there are biological reasons for this that have nothing to do with willpower.
- Period problems - Women with PCOS commonly have issues with their period including irregular and missed periods, heavy bleeding, and painful periods.
- Infertility - PCOS is the leading cause of female infertility, although having a diagnosis of PCOS does not necessarily mean you will be unable to conceive without fertility treatments.
- Acne - especially acne on the jawline, cheeks, chin and upper neck.
- Mood disorders - Anxiety and depression are more common with PCOS. Plus, there's the added difficulty of dealing with symptoms like facial hair, weight concerns, acne and infertility, which come with their own shame and stigma attached.
- Diabetes and heart disease - Over time, the inflammation underlying PCOS and insulin resistance can increase the risk of diabetes and heart disease.
How is PCOS diagnosed?
PCOS is diagnosed based on three criteria:
1. Presence of ovarian cysts - In PCOS, fluid-filled sacs called cysts may be found on the ovaries. Not all women with PCOS have ovarian cysts, and they might even change the name of PCOS soon since it's kinda misleading.
2. High levels of androgens - You can get a blood test, or diagnosis can be made based on symptoms of excess androgens, such as facial hair and hormonal acne.
3. Problems with menstruation - If you're experiencing missed periods or irregular periods, your doctor will want to first rule out any other causes.
In order to be diagnosed, you need to meet 2 out of three criteria.
Why "just lose weight" is literally the worst advice for someone with PCOS
We're going to get into what does actually work for people with PCOS in the next post in this series, but let's first talk about what doesn't - aka diets.
When first diagnosed with PCOS, most women (especially those who are in bigger bodies) are told to "just lose weight." For most women I've worked with, it's basically the only piece of advice they're given about managing their condition. While in the short term, weight loss does seem to temporarily relieve some symptoms, in the long run, purposeful weight loss does more damage.
Many women with PCOS describe it as "impossible" to lose weight. Of course, 95-97% of diets fail, so that's an accurate statement for basically the entire population, but women with PCOS will experience this more intensely. PCOS slows metabolism significantly. Slower metabolism paired with high insulin levels causes the body to store more fat. On top of that, carb cravings caused by insulin resistance and wonky hunger/fullness hormones can make it more difficult for someone with PCOS to stick to a diet. That said, the women I work with who have PCOS have the most willpower I've ever seen. It's not uncommon for them to go on essentially starvation level diets for a significant length of time and barely lose any weight. They often tell me that their doctor or other dietitians they've worked with think they're lying about how much they eat.
Dieting exacerbates symptoms of PCOS in the long run. Hunger and low blood sugar contribute to anxiety, depression and fatigue. Fat is used for hormone synthesis, so your body needs adequate dietary fat for your hormones to have any hope of working correctly. Calorie deficit slows metabolism even further. And your body absolutely needs adequate nutrition to menstruate and for fertility.
Women with PCOS are six times more likely to develop an eating disorder, and dieting is a common trigger for eating disorders. Binge eating disorder is especially common. Low blood sugar caused by high levels of insulin, and low cellular glucose caused by insulin resistance both lead to intense carbohydrate cravings. Dieting contributes to this, especially the low carb diets commonly recommended for PCOS. Paired with anxiety, depression, and the stress of living with PCOS, it makes sense that binge eating could easily result.
Ultimately, PCOS is not caused by weight gain or being at a higher weight, so weight loss isn't the cure. Plus, there are plenty of thin women who have PCOS - what advice/medications are they being given for management? Even if weight loss did make a difference, to sound like a broken record, only 3-5% of people are able to keep weight off over 2 years. You deserve to be given medical advice with better than a 3-5% success rate!
Thankfully, there are positive, non-diet ways of managing PCOS that DO work long term. We'll talk more about that with the next series, which I hope to publish the week after Thanksgiving. Stay tuned :)
If you're a dietitian reading this who is interested in learning more about non-diet approaches in women's health, including PCOS, fertility, and amenorrhea, I hope you'll check out the RD Roundtable series I'm doing along with a four other dietitians who specialize in the area. Here's a link with more information. You can purchase a listen only option, or full registration, which includes a 20 minute mentoring call with one of us panelists. Here's the link to register!
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