We at Wholesome Story recently had the pleasure of meeting Dr. Melanie Cree, an endocrinologist (hormone doctor) and medical researcher who specializes in diabetes and prediabetes, PCOS, adolescent obesity, integrative physiology, and general endocrinology. She graciously agreed to do an interview with us and this is it!
Big thanks to Dr. Cree for taking time out of your very busy schedule to do this interview!
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This is a long interview with lots of info, so here’s the list of the questions we asked Dr. Cree. If you want, you can skip to the sections you are most interested in. Enjoy!
- Why are you so passionate about helping the PCOS community?
- What is PCOS?
- What Are the Causes of PCOS?
- PCOS appears to include a pretty diverse set of symptoms, with some organizations using these symptoms to divide the diagnosis into types/stages. But, different sources may list as few as two or as many as seven types of PCOS. What are the clinically validated types and how do they differ from one another?
- What are the most common medical complications associated with PCOS and how can PCOS Cysters lower their risk for developing complications?
- Why does it take so long for many women to receive a diagnosis of PCOS? What do doctors wish their patients understood about diagnosing someone as having PCOS?
- What is the role of insulin resistance in PCOS? Can you have PCOS without presenting with insulin regulation issues?
- Is there anything else you’d like to say before we conclude our time together? (Closing Comments)
Q1: Why are you so passionate about helping the PCOS community?
Dr.Cree's passion for improving women's healthcare began in her youth, when she routinely witnessed gender disparities in her rural community. Fueled by these experiences, she pursued studies in women's health research and endocrinology, leading her to specialize in PCOS.
Dr. Cree has since established a multidisciplinary clinic, founded a PCOS special interest group, and played a vital role in gaining recognition for PCOS by the NIH. Through her work, Dr. Cree emphasizes the need for increased education for both healthcare providers and patients, and she is highlighting the importance of interdisciplinary collaboration to improve overall women's healthcare.
Q2: What is PCOS?
I shared a wry laugh with Dr. Cree when I asked her this question because it’s a bigger, tougher question than you’d initially think.
From a “purist” approach, she says PCOS is the condition of having elevated male hormones in a female body. The effects of this can be seen in the blood (when tested) and/or in the skin and hair as acne, hair growth (face, neck, chest, etc.), and hair loss (balding).
Common hormone imbalances include:
- High LH (luteinizing hormone) & FSH (follicle-stimulating hormone)
- This particular imbalance is often tied to too much or too little exercise and/or excessive or inadequate fat stores.
- High free testosterone levels.
Dr. Cree also noted that there are other hormone abnormalities that are common in women with PCOS, but are not a part of PCOS. These abnormalities can make diagnosing PCOS more challenging:
- Thyroid abnormalities, shown by either high or low TSH (thyroid-stimulating hormone) levels.
- Too much prolactin (which prevents ovulation)
PSA from Dr. Cree:
“Cysts are not associated with PCOS. It’s [PCOS] the
most confusing name ever.”
She wants you to know that if you are diagnosed with ovarian cyst(s) or ovarian torsion, that doesn't mean you have PCOS. These kinds of cysts are almost never associated with PCOS. Whew!
Q3: What Are the Causes of PCOS?
Dr. Cree was kind enough to give us a lesson in the scientific principle of: Correlation Does Not Equal Causation. There are many issues related to PCOS that people often think are CAUSED by PCOS, which isn’t necessarily true. Dr. Cree believes this is why PCOS is such a confusing diagnosis for so many women.
So, she shared a list of things that are associated with PCOS but not directly caused by it:
- Excess weight gain and difficulty losing weight: Increased body weight is not part of the diagnostic criteria because, while it’s common in PCOS, it’s not universal.
- Metabolic diseases: This includes conditions like liver disease, high cholesterol, high blood pressure, heart attacks, fatty liver, and obstructive sleep apnea. Again, while these conditions are common in women with PCOS, they are not universal and aren’t directly driven by the diagnostic criteria of PCOS. Eg you can have a metabolic disease and not have PCOS and you can have PCOS and not have a metabolic disease.
- Mood disorders: “Unhappiness with body shape, size, & appearance are super strong predictors of depression in women.” Dr. Cree said this certainly relates to the increased rates of depression within the PCOS community. She also noted that the fertility problems associated with PCOS often cause depression and anxiety. So, it’s not that PCOS causes depression, it’s that the effects of PCOS are depressing. It’s a subtle difference but it’s an important one to understand.
- Irritable Bowel Syndrome (IBS): This condition may or may not be related to PCOS but it’s certainly common among PCOS Cysters. Researchers don’t know if this is because women with PCOS are so highly prone to diet fads that can impact gut health, or if the hormonal and metabolic changes associated with PCOS are driving gut dysbiosis.
So What’s Really Causing PCOS?
“We’re poisoning ourselves, especially women,” says Dr. Cree. Her professional opinion (and that of many of her colleagues), is that the harmful chemicals in our food, water, and personal care products, are helping drive the condition.
She said she believes that these endocrine disrupting chemicals (EDCs) are disproportionately affecting women because so many of our beauty products are rife with them. Aluminum in deodorant, and artificial scents in products like lotion and perfume, are two examples of EDCs that can negatively impact hormone health.
“There are a lot of toxins in beauty products that especially affect
our sex steroids.”
Finding ways to reduce your exposure to EDCs can greatly help with issues caused by hormone imbalances.
- Check out our blog, Endocrine Disrupting Chemicals: The Bad Guys Disrupting Your Hormones to learn more about EDCs.
Some women are genetically prone to the condition, and that’s simply out of their control. What is in their control is how they choose to manage the condition in their own bodies and lives. More on this topic later in the interview.
Who Knows?There may be other factors driving PCOS that researchers aren’t currently aware of. Like many conditions that affect women and not men, there is still so much research that needs to be done before scientists can claim to have a thorough understanding of it.
Q4: PCOS appears to include a pretty diverse set of symptoms, with some organizations using these symptoms to divide the diagnosis into types/stages. But, different sources may list as few as two or as many as seven types of PCOS. What are the clinically validated types and how do they differ from one another?
This turned out to be a pretty big question. Dr. Cree spoke at length about the medical community’s evolving understanding of PCOS. She explained the varying information about PCOS types by highlighting our evolving understanding of the condition. This ongoing research leads to different sources outlining different numbers of classifications.
As for her own theory on types, she and many of her colleagues now think PCOS may actually encompass two distinct diseases, not just one. She said as more research is conducted, it’s likely this theory will gain more traction and attention, especially since it’s already supported by the Genome-Wide Association Studies (GWAS).
What are these two types, you ask?
- First Type: A genetic/family-related condition with lots of hormone changes, esp. those associated with the brain.
- These individuals have higher LH pulsatility.
- Researchers think this group may be less responsive to lifestyle changes and insulin-control medications, such as metformin.
- Women in this group may need more help with fertility health, because conception can be significantly more difficult for them.
- Second Type: A metabolic phenotype condition in which the patients have strong family histories of Metabolic Diseases and Type 2 Diabetes.
- A higher proportion of these individuals carry excess weight.
- This group tends to respond better to metabolic treatments such as lifestyle changes and drugs like metformin.
- Women in this group may still need medical help to conceive, but they tend to need less help than those who have the first type.
What about all the other types?
Every “PCOS Type” you hear about isn’t scientific fact; it’s someone’s theory. This is true for the theory that Dr. Cree shared as well, though her theory has more robust scientific research behind it than most others.
It’s important to remember that even the top experts don’t fully understand PCOS, so anyone you see on social media who claims to understand it all, certainly doesn’t. Much more research is needed before definitive conclusions can be made about PCOS Types.
Why Do Types Matter Though?
Treatment recommendations could be more personalized and helpful, if there were validated, standardized categories of PCOS that could direct physicians toward the most helpful treatments for their patients based on symptoms.
Right now, PCOS is so broad that many doctors simply don’t know which PCOS treatments to advise their patients toward. For most patients, there is a lot of trial and error in the current treatment paths.
“Wouldn’t it be nice if we could actually advise patients better, based on understanding their disease?” - Dr. Melanie Cree
Q5: What are the most common medical complications associated with PCOS and how can PCOS Cysters lower their risk for developing complications?
Dr. Cree discussed several medical conditions that women with PCOS are more likely than average to battle with at some point.
Metabolic Diseases. Dr. Cree noted earlier in our interview that metabolic diseases are quite common in PCOS. This group of diseases encompasses any disorder that disrupts the natural process of converting food to energy on a cellular level. 1 So, most people think of Type 2 Diabetes when they think of metabolic disease, but there are many diseases in this category. Our PCOS Cysters are more likely than average to experience metabolic diseases because hormones play such a huge role in determining metabolic health.Depression. This is something most people with chronic health problems have to deal with. Some experience more depression than others and there are many factors that can influence it, including genetic predisposition, life circumstances, etc.
Women with PCOS are more prone to depression because it can greatly affect aspects of the body that are important to mental health, such as physical appearance and ability to have children, just to name a couple.
Overweight/Obesity. Researchers tell us that between 38-88% of women with PCOS are also affected by overweight or obesity. 2 (Yes, that’s a huge range and we think it’s a shame that we don’t have more definitive data. It’s just another indication of how little research has been done on PCOS relative to its prevalence.)
If you remember, earlier in this interview, Dr. Cree busted the myth that excess weight gain is inherently part of PCOS. But, weight gain is certainly associated with it, and there are a lot of reasons why. So, most women with PCOS can benefit from improving their understanding of how to support a healthy weight, because for most women with PCOS, maintaining healthy weight is a huge challenge.
Chronic Pain. This is something that so many people deal with, and finding the cause is key to treatment. However, as anyone with chronic pain will tell you, it’s chronic because they either can’t find, or can’t fix, the cause.Dr. Cree noted that the chronic pain common among most PCOS Cysters is usually related to lack of sleep and/or carrying excess weight. Lack of sleep changes the body’s chemistry and makes it more susceptible to excessive amounts of pain-causing inflammatory chemicals. Excess weight can cause mobility problems and joint pain, as well as drive pain-causing chemical changes.
So, how can PCOS Cysters work to prevent or overcome these conditions?
Sleep more. Sleep is important in controlling cortisol levels because cortisol levels drop during sleep. When you don’t sleep enough, it can’t drop enough. So, if you’re chronically sleep deprived, then chances are you have chronically elevated cortisol.
Dr. Cree says chronically high cortisol levels damage our health…dramatically. Cortisol makes us hungry for sugary and fatty foods, it makes us depressed, and it makes us cranky. It also raises blood pressure and blood sugar, which can drive metabolic diseases.
Helping to improve sleep is where Dr. Cree starts with many of her patients, since most women with PCOS are sleep-deprived (just like so many other women sigh).
In her medical opinion, it’s simply not realistic to ask someone with high cortisol to ignore their body’s cravings for sugar and fat. She said many people don’t understand just how
much poor sleep can magnify these cravings, so they struggle to make any meaningful life changes.
“I really can’t overemphasize the importance of sleep in PCOS….If there was any one thing I would say to someone struggling with PCOS symptoms, it would be, ‘Do as much as you can to clean up your sleep.’” - Dr. Melanie Cree
Bottom line: Chronic sleep deprivation leads to chronically high cortisol, which worsens PCOS symptoms and contributes to other health problems. Aim for adequate sleep and seek medical help if you need it.
Take your mental health seriously. Dr. Cree shared that she believes asking patients to make diet and lifestyle changes when they’re struggling with depression, anxiety, or other mental health concerns, is probably futile. As she put it, “Trying to fight against the brain’s food choices is a losing battle.”How do you support your mental health? Figure out what’s causing the mental health challenges and address that. If it’s genetically inherited depression, find a depression medication that works for you. If it’s anxiety about going out in public and getting a five-o-clock shadow, then get laser hair removal and/or hormone therapy.
Focus on what's causing the mental issue, and address it first. Dr. Cree says you should treat your mental health because it can help your brain make healthier choices.
Tackle issues one at a time and start with what’s most important to you, personally.
People should feel comfortable discussing their priorities with their healthcare providers and working together to address the most bothersome symptoms first. You don’t have to let your healthcare provider dictate your treatment plans, you can tell them what you want and need.
If your biggest issue with PCOS is infertility, then get fertility treatments. If it’s a beard, then get on hormone therapy and/or laser treatments. If it’s your weight then work with a dietitian and/or get on weight loss medication. Find an issue that bothers you greatly and make a dent. Meaningful progress encourages more progress.
Q6: Why does it take so long for many women to receive a diagnosis of PCOS? What do doctors wish their patients understood about diagnosing someone as having PCOS?
In Dr. Cree’s opinion, the three primary problems that prevent women from getting a diagnosis in a timely manner are:
Lack of education among healthcare providers. She acknowledges that not all docs have adequate training in PCOS care/management.It’s so common in fact, that one of Dr. Cree’s biggest passions is educating her colleagues about PCOS. She feels that many doctors need more information on the specifics of PCOS pathology, diagnosis, & treatment…basically the whole enchilada.
Doctors are people too, and many of them have never received specific training for PCOS, and it shows. Not even doctors know everything about everything.
- Assay (testing) inconsistencies: Hospitals can switch test types, causing confusion for doctors. When you change the type of test and or what the test is specifically measuring, it changes the evaluation of those results too. This can be a tough thing for doctors to deal with.
- Natural Hormone Fluctuations: Testosterone levels naturally vary throughout the day (highest in the morning and during menstruation). Usually, medical providers don’t take hormone fluctuations into account when scheduling labs; they go for “labs of convenience” regardless of how the chosen time might affect the outcome.
So, if a woman is tested for testosterone in the afternoon, the results might not be consistent with PCOS, but if that same person were tested in the morning, they very well could be. This can create issues with getting diagnosed. Afternoon tests might not catch elevated testosterone levels in PCOS patients, whereas morning tests are much more accurate, especially if they correspond with menstruation.
Tip: If you have PCOS symptoms but tested normal for free testosterone, then request a morning retest (during your period if applicable).
- SHBG vs. Free Testosterone: Testosterone binds to SHBG (sex hormone-binding globulin). Excess weight or insulin resistance can lower SHBG, leading to normal total testosterone readings despite the presence of PCOS. Ideally, clinicians should measure SHBG and calculate the Free Androgen Index. Or, they can directly measure free testosterone (the active form) for a more accurate picture. Please, feel free to ask your doctor about these things!
- Test Type: As mentioned earlier, the type of test used to measure testosterone is important to get an accurate result. Dr. Cree says your tests should not be conducted using the ELISA method, but rather with the LC-MS-MS method. You can note those two names and ask your doctor about them when you go to get tested. If possible, opt for the second.
Dr. Cree provided some valuable insight into treating patients with PCOS. She says patients often come for short appointments with a huge list of issues that the doctor cannot even hope to address in one short meeting. She also said patients often don’t indicate which problems are most important to them, leaving the doctor to make decisions about what to address first.
BUT. Burnout is real, and doctors experience it to a much higher degree than most other professions. So, if you’re going to your 20-minute appointment with a list of 10 issues and no indication as to what issues are most bothersome to you, then your overwhelmed doctor is simply going to pick one and start with that.
“This is where patients should take more control and provide focus,” Dr. Cree shared. Tell your doctor what is most important to you. They’ll appreciate it more than you know.
Bottom line? PCOS is complicated and overwhelming for everyone involved, including doctors, so truthful, considerate communication is key to successful care.
Q7: What is the role of insulin resistance in PCOS? Can you have PCOS without presenting with insulin regulation issues?
“This comes back to our ‘category’ question,” Dr. Cree says. If you recall, earlier in our interview, Dr. Cree shared her hypothesis on the two different types or “categories” of PCOS. Insulin resistance can be viewed differently in PCOS based on a person’s categorization.
- In adolescence, 100% of PCOS patients have insulin resistance because of the effects of puberty. Many of these girls can grow into women with adequate insulin control while others remain insulin resistant. Developmental status drives insulin resistance in this age group.
- In the First Type of adult PCOS, the genetically driven one, insulin resistance may or may not be present. She reiterated that this kind of PCOS is rarer, but still exists. So yes, a person can have PCOS without insulin resistance.
- In the Second Type of adult PCOS, the metabolic phenotype, insulin resistance is pretty universal. Women with this type typically need treatment to address insulin regulation.
Why all the insulin drama though?
Insulin can stimulate theca cells (a type of cell in the ovaries) to increase testosterone production. Thus, anything that helps to decrease insulin levels may help reduce testosterone levels, and therefore help PCOS.
Dr. Cree noted that exercise, even just getting up and moving around your office during the workday, helps insulin work better. So, if you struggle with insulin resistance and/or high testosterone, move your body as much as you can.
As far as medications go, Dr. Cree said metformin is helpful for insulin sensitivity. She also said that TZDs (Thiazolidinediones) are “fabulous” and that they are “some of the best insulin sensitizers we have. But, they cause weight gain.” You can ask your doctor about either of these medications if you want more information.
Q8: Is there anything else you’d like to say before we conclude our time together? (Closing Comments)
“We have so much more to do!” So, so much more to do!” Dr. Cree smiled sadly as we recalled together just how many hurdles there are to proper diagnosis and care for women with PCOS. She shared her opinion that the “work” cannot be done without more meaningful conversations between PCOS Cysters and their physicians.
Here are a few things that Dr. Cree wants you to keep in mind as you communicate with your healthcare provider(s):
Disinformation is Damaging
“People receive a lot of disinformation and it’s very concerning. It makes people feel hopeless that [they] have to deal with all the symptoms and possible effects.” Dr. Cree wants you and your doctor to have more open conversations where you can share the things you’ve learned from others and fact-check what you’re learning.
Menstrual Health Matters!
Her understanding of women’s hormonal health is so much deeper than the average physician’s, and Dr. Cree feels that women’s reproductive health isn’t treated as seriously as it should be by most healthcare providers. “In my mind, menses are a vital sign for women and should be treated as such”, she says.
It’s YOUR Body and YOUR Life
She also wants you to know that you have the right to take charge of your own health journey and change direction as you see fit. “Bodies change, positions change, thoughts change,” says Dr. Cree, “Patients can make goals with their healthcare providers, but should feel free to change direction at any time…because it’s their body and their life.”
Healthcare Bias Towards Women is Real
Finally, Dr. Cree expressed dissatisfaction at the biases women face in pursuing healthcare. “I would really like to see women’s ‘healthcare’ become healthcare.”
Dr. Melanie Cree wants your healthcare provider to take all of your health needs seriously, so she has dedicated her life to trying to make that happen. You have allies.
In Conclusion
Healthcare shouldn’t just be symptom management, baby-making care, or sexual health care. Dr. Cree wants you to be able to go to the doctor, tell them your issues, and be taken seriously even if you don’t want the medication they recommend, even if you don’t have a baby to look after, even if your partner is satisfied with your sex life. She wants YOU to feel worthy of making sure your health is looked after in a manner that reflects your goals and priorities, regardless of anyone else’s.
PCOS Cysters, and women of all ages and abilities, there are people out there who are fighting on your behalf, you are not alone!
If you need help and you don’t feel like your current doctor can provide it for you, check out these resources from the PCOS Awareness Association.
In parting, remember that eating healthy, whole foods, and lots of plant foods, is one of the simplest, safest, and most effective things we can do to promote good health in our bodies. As with every preventative/restorative measure though, sometimes these changes alone are not enough to help our bodies function the way we want or need them to. If you are struggling with health problems, please contact your doctor or other healthcare provider such a Naturopathic Doctor, Dietitian, or Mental Health Professional to see if they can offer appropriate guidance and care. We at Wholesome Story believe that healthy communities require community effort, so we advise you to keep your healthcare community aware and involved in your journey as you pursue better health.
Sources:
- Enns G. metabolic disease | Definition, Origins, Types, & Facts | Britannica. In: Encyclopædia Britannica. ; 2019. https://www.britannica.com/science/metabolic-disease
- NIH. Why are women with polycystic ovarian syndrome obese? National Library of Medicine. Accessed September 22, 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9494255/
- All gifs obtained from Gify.com; links for each gif are posted below the respective image.