If you're an avid reader of PCOS information, you likely know that PCOS affects 1 in 10 women. Did you know that it affects more than that? Studies are now estimating that the prevalence is closer to 20% This change is likely in large part due to the publication of the Rotterdam Criteria for diagnosis, created in 2003. This criteria broadened the definition so that more women could be identified and treated, and allows for a diagnosis to be made without the presence of cysts on the ovaries.
The good news is that more women can be identified. The bad news is, there are an awful lot of people out there looking to cash in on the trend. Supplement sellers, fertility clinics, nutrition experts, etc…all of them make money off of women with PCOS. Not all of them offer valid solutions. Many of them know that the diagnosis, especially if it comes during an infertility workup, renders women fearful and more easily parted with their money in hopes of finding an easy solution.
Be sure not to let that desperation get to you. Even if you're just passing through here and you have a PCOS provider you're satisfied with who is not part of our network, be sure their information is valid, reliable, and research-based. Be sure, if you choose to try a possible solution that is a little more off the radar, that you know exactly how to use that supplement and you use it exactly as told to, for as long as you're told to, in order to achieve the expected results.
And remember what Beth Wolf, organizer of the Power Up For PCOS Walk-a-Thon, has told the members of our Facebook fan page — women with PCOS who are committed to good nutrition, activity, and lifestyle practices, are some of the fittest women around. They are even fitter than women WITHOUT PCOS!
There is a whole lot you can do, on your own, to be in control of your PCOS. It will also prevent you from being targeted as a profit center for a drug company or a food company or anyone, for that matter. You're not a revenue stream. You're a human being and a woman. A woman who has been given a very special opportunity to change her life for the better.
Don't ever let anyone take that away from you. March WA, Moore VM, Willson KJ, Phillips DI, Norman RJ, Davies MJ The prevalence of polycystic ovary syndrome in a community sample assessed under contrasting diagnostic criteria. Hum Reprod. 2010;25(2):544.
Yesterday I had the honor and pleasure of speaking to a group of eating disorder professionals in Santa Monica, California, about what happens when an eating disorder and PCOS collide in the same person.
Here are some of the statistics I shared with them:
**Women with PCOS have a higher lifetime incidence of depressive episodes, social phobia, and eating disorders than controls.
**Suicide attempts are seven times more common in women with PCOS than in other women.
**In a sample of women with facial hirsutism, the prevalence of eating disorders is 36.3% (Compared to about 10% in the general female population).
**Depression, anxiety, low self-esteem, and poor social adjustment are more common in participants suffering from an eating disorder, and the presence of PCOS was universal in eating disordered cases.
Those are some pretty heavy statistics…and the points I was making to the audience were that medical doctors who treat PCOS need to understand its emotional and behavioral components, and professionals who treat eating disorders cannot be effective if they don't understand the hormonal implications of PCOS. You need to know how to treat both.
The good news is, the professionals in the room were interested in helping. And inCYST dietitians happen to be very interested in disordered eating as well as PCOS. So we're ready and very eager to help you negotiate your way to solutions for both. inCYST providers Ellen Reiss Goldfarb, Diane Whelan, and Mary Donkersloot were with me in Santa Monica, putting a friendly face onto PCOS and eating disorder help and networking with capable and sympathetic doctors and psychologists. With the teambuilding that happened, I have to say, anyone in SoCal who needs help, is going to be in very capable hands!
Please check out our referral list and reach out to someone who can help.
If the topic of eating disorders and PCOS interests you, be sure to catch Ellen Reiss Goldfarb, RD, (West Los Angeles) in her interview on the topic on PCOS Challenge, Wednesday, June 24, 6 pm EDT.
REFERENCES
Mansson M, Holte J, Landin-Wilhelmsen K, Dahlgren E, Johansson A, Landen M. Women with polycystic ovary syndrome are often depressed or anxious--a case control study. Psychoneuroendocrinology. 2008 Sep;33(8):1132-8. Epub 2008.
Morgan J, Scholtz S, Lacey H, Conway G. The prevalence of eating disorders in women with facial hirsutism: an epidemiological cohort study. Int J Eat Disord. 2008 Jul;41(5):427-31.
In a study I did with over 1,000 women with PCOS who visited my website, over 85% described symptoms of anxiety and/or depression, conditions commonly treated with antidepressants. Therefore, any information I find regarding these medications and their effect on pregnancy is crucial to share.
In the study referenced in this post, over a period of almost 10 years, a total of 1,780 women who experienced 1,835 pregnancies over this time while also receiving either paroxetine (Paxil) or a combination of Paxil and at least one other antidepressants, during the first trimester of pregnancy. These women were compared to 9,008 women experiencing 9,134 pregnancies while on other antidepressants and antidepressant combinations that did not include paroxetine, in the first trimester of pregnancy, over the same period of time. The researchers report that there is a modest increased risk of congenital malformation (birth defects) in women who use paroxetine alone or in combination therapy during the first trimester of pregnancy.
Bottom line? Since often times you don't even know you're pregnant during that first trimester, if you are trying to conceive, or even having sex, and you are being treated for depression, it would be prudent to discuss an alternative to paroxetine with your caregiver.
Better safe than sorry!
Cole JA, Ephross SA, Cosmatos IS, Walker AM. Paroxetine in the first trimester and the prevalence of congenital malformations. Pharmacoepidemiol Drug Saf. 2007 Oct;16(10):1075-85. Comment in: Pharmacoepidemiol Drug Saf. 2007 Nov;16(11):1181-3.
Unless you've been living under a rock, you know our comrades in the gay community have taken some major hits in past weeks. Many of my Facebook friends posted the video by Ellen DeGeneres. One asked,"What are YOU going to do?"
Later that day, I was spending the evening with friends. The theme of conversation turned to bad doctor experiences. Luisa, a lesbian woman with PCOS, shared that during an appointment she had made for her annual gynecological physical, her physician told her she didn't need to have these physicals, because she was not having sex with men.
There is concrete evidence that lesbian women have a higher incidence of PCOS, and therefore a GREATER need to be in more frequent with reproductive specialists. Whether or not they are in a relationship, and whoever that relationship may be with. If my friend had been heterosexual, and not in a relationship, I'm willing to bet that is not the advice she would have received from that physician.
I was floored, but I was grateful for the inspiration. What I was going to DO, as my Facebook friend encouraged us to think about, was use this blog advocate for equal access to quality healthcare for homosexuals.
Over the years, I've witnessed attitudes and heard comments that should never have existed.
In my last job, at an eating disorder treatment center, my supervisor pulled me aside after a meeting and asked me what I thought about the possibility that a treatment center for men would be added to our organization. I thought it was a great idea. At the time, there really was no place for men with eating disorders to go.
She acted surprised."But you know what that means, don't you?"
"Um…that men who couldn't get help before can be helped?"
She hesitated."Well, yeah, but…"
I was in the dark."But…?"
"We'll have to start treating gays."
I didn't work long for that company. I couldn't work in a place where an attitude prevailed, that some people are more deserving of help than others.
Now I am realizing that not only do I have an obligation to not work for an employer who would foster such attitudes, I need to speak out to my fellow healthcare professionals and not request, but demand, that you treat all of your patients with equal respect and offer them equality of service, regardless of their religious, political, cultural, or gender orientation.
If we were in a pathology lab, and I asked you to pick out the Republican spleen, or the Methodist pineal gland, or the Icelandic aorta, or the lesbian wisdom tooth…you couldn't do it. Because on the inside, we are all alike.
If I asked you, however, to point out the PCOS liver (likely to be fatty), or ovary (containing cysts), you would be able to do so, in a moment. THAT is what we were trained to do. Help our patients with the things that may not be working so well, while being blind to what kind of packaging they come in. As helping professionals, we don't have the luxury of categorizing our patients in ways that give us reasons not to care. We do our work because we DO care.
One of my very first inCYST success stories was actually a lesbian couple. A young woman helped me to organize a class, and I noticed that she was more engaged and took more notes than anyone else who attended. I stayed after class and learned that she and her partner had been, unsuccessfully, trying to conceive. She realized in the class she had many of the symptoms of PCOS, but no one had ever worked her up for it.
We had a most enlightening discussion about what it is like to be lesbian and to be seeking reproductive services. About how much thought this couple put into who they would even trust to ask for help. About how it felt to sit in the waiting room of the doctor and know that the couple across the way is looking at you the way they are for reasons that aren't so compassionate.
It opened my eyes to how much, as a Caucasian, heterosexual, Christian woman, I take for granted when I pick up the phone and make a physician appointment. I simply pick up the phone, set the date, show up, and get what I came for. I don't have to research who to go to, emotionally gear up, deal with bizarre responses, or leave without what I came for because someone thought I didn't need or deserve it.
PCOS sort of followed me, it wasn't the other way around. But now that it has become my life's work, I want every woman who knows about inCYST to understand, and trust, that no matter who you are, where you came from, how different your life may be from mine, that there is information and support for you here. You are special, and you are important, and if the information we have is pertinent to your situation, it is our honor to use it to create a healthy path for your journey through life. Agrawal R, Sharma S, Bekir J, Conway G, Bailey J, Balen AH, Prelevic G. Prevalence of polycystic ovaries and polycystic ovary syndrome in lesbian women compared with heterosexual women. Fertil Steril. 2004 Nov;82(5):1352-7.
Is depression an inevitable consequence of PCOS, or any other hormonally related diagnosis, for that matter? We know that the diabetic population experiences a rate of depression nearing 30% overall, which is significantly higher than the rate of depression in the general population. Women tend to suffer from depression, or it's lesser cousin, dysthymia ("depression light"), far more than men. The infertility that results from PCOS is yet another common cause of depression. Looking at all these causative health factors almost makes depression seem like an inevitability if you have PCOS, doesn't it?
However, it's important to remember that depression is not a thing — it is not a particular spot in the brain, an object like a tumor in your body, or even a set of cells that gets activated and can be turned on and off like a light switch. Depression is a concept — a construct that tries to define and systematize a sometimes vague set of symptoms that includes tiredness, loss of energy, loss of interest in things that once brought you joy, weight gain or loss, sleep difficulties, and even thoughts of suicide.
So, even if you have a diagnosis of depression or dysthymia, remember that you are not your symptoms. You are an individual who has a certain set of symptoms, but how you approach the management of those symptoms is subject to your individuality. Just as you must personalize other aspects of your PCOS treatment, you must personalize treatment for depression or dysthymia. This may include individual therapy, group therapy, support groups, mindfulness, meditation, dietary changes that support better brain chemistry, supplements, or perhaps antidepressant medications.
If you are feeling depressed, talk to your primary health care practitioner about your symptoms. They are not necessarily an inevitabile outcome of living with PCOS, and there are many ways to obtain relief. In a future post, I'll be discussing the prevalence of anxiety and anxiety disorders in women with PCOS, how depression and anxiety overlap, and what you can do to decrease your anxiety.
Gretchen Kubacky, Psy.D. Los Angeles, CA 90064 ph: (310) 625-6083 gretchen@drhousemd.com
These days it seems that all a product has to do is contain something from a coconut…and the immediate assumption is that it is healthy, no matter how much of it is consumed.
I'm not sure where this false idea comes from, given the statistics of diabetes prevalance in Pacific Island peoples: --Native Hawaiians, in Hawaii, have higher diabetes mortality rates than any other ethnic group, and Hawaiians with diabetes are more likely to be eating at least 5 servings of fruits and vegetables than any other ethnic group. --Indonesia has the second highest prevalence of diabetes of all of the countries in the world.
Of course, modernization of all cultures has significantly affected these statistics. However, as you can see in these historical photos of King Kamehameha and Queen Liliuokalani, native Pacific Islanders weren't skinny minnies when they first met the missionaries, when white rice and SPAM were not even concepts in the islands.
By no means am I intending to insult my friends in Hawaii. I'm simply trying to illustrate the potential harm that can occur when nutrition misinformation is parroted, repeated, and distributed without checking facts.
Coconut products definitely have their place in healthy diets; however, only if used with knowledge and respect and without the concept that somehow coconut products have magical, supernatural, and/or anti-caloric properties. I put together a summary of the coconut products currently in vogue, as a reference for those of you with questions about whether or how you should be using them.
Coconut Flour 1 cup contains 480 calories, 12 grams of fat, 80 grams of carbohydrate (32 net, 48 dietary fiber), 16 grams protein
This product is a byproduct of the coconut oil industry, so provided you've purchased your flour from an origin where the coconuts are sustainably produced (not making coconut sugar), it is sustainable. You can see however, it is not smart to assume that because coconut oil has been pressed out of coconut meat…that it does not contain fat or calories. It is gluten-free. Not listed in the Nutrition Data database so inflammatory index is unknown.
Coconut Sugar 1 cup contains 160 calories, 40 grams of carbohydrate, lower glycemic index than regular sugar.
According to Tropical Traditions, coconut sugar is obtained by collecting sap from the trees that produce coconuts, rendering them incapable of producing those coconuts. Because Americans have such a sweet tooth and the demand for the ultimate alternative sweetener seems to have no upper price point, coconut farmers are sacrificing their coconut crops to cash in on this craze while they can. Coconut sugar is NOT a sustainable product and if supported, may reduce the availability of coconut oil.
Coconut Milk, canned 1 cup contains 445 calories, 48 grams of fat, 6 grams of carbohydrate Rated as strongly inflammatory
Coconut Milk, raw 1 cup contains 552 calories, 57 grams of fat, 13 grams of carbohydrate Rated as strongy inflammatory
Coconut Water 1 cup contains 46 calories, 9 grams of carbohydrate (6 net, 3 fiber) Rated as mildly inflammatory
Ahem…inflammatory? Aren't sports recovery drinks supposed to be ANTI-inflammatory?
Coconut Oil 1 cup contains 1879 calories, 218 grams of fat Rated as strongly inflammatory
Lauric acid content is high in coconut oil, but there is absolutely no research to prove that it erases the calorie content. Use as your cooking oil in healthy proportions and you should benefit. Eat by the tablespoon and you could be causing more problems than you solve.
As long as we don't eat too much coconut sugar, this industry can be sustainable.
Coconut vinegar 1 cup contains 80 calories
Used wisely, coconut products are a great way to vary your diet, especially if you're gluten-free. However, in excess, as with any food, they lose their health benefit. It is not a magic, calorie-free food, by any stretch of the imagination.
If coconut is your food religion, it's likely these numbers won't matter. But I wanted to write about them nevertheless. In order for your choices regarding coconut products to be informed, you need more information than that which comes from people who also practice coconut-ism or want to profit from your lack of adequate information.
For those of you who do not follow Dr. Aimee Eyvazzadeh's blog, I wanted to share a really important post. It's about the prevalence of BPA's in our world. BPA's are chemicals that can alter hormone function and therefore, infertility.
This has pertinence to all of you for a couple of inCYST-related reasons.
1. First of all, if you're drinking diet soda thinking it's ok because it's diet, it may not be the obvious that's getting into your body that's causing the problem. If I can't convince you to stop drinking soda, maybe at least I can convince you to look for, purchase, (and therfore create demand for) a less hormone-destructive beverage container.
2. Secondly, the issue of destructive chemicals in our environment is huge. But it seems as though, the huger it gets, the more we seem to want to focus on the minutia of carbohydrates, when to time meals, whether brand"x" breakfast bar is better than brand"y"…ad nausem.
The truth is ladies, one of the reasons you may be forced into a situation where your life has become about minutia is because we as humans have a tendency to stick our head in the sands about big, complex, vague problems it's hard to wrap our brains around, We need to be concerned about the way our chemicals are altering our environment. We need to speak out. I'm appalled at how few people on Facebook even talk about the oil slick…but they all have time to watch the latest Lady Gaga spoof and harvest tomatoes on My Farm. Chemicals aren't going to go away unless we speak up about the fact that we don't want them.
It's unrealistic to ask all of you to wear plastic gloves when you shop so you don't have to touch yours hopping receipts. It IS realistic, however, to ask all of you to take a moment or two out of each day and speak out about something you care about. Plastic, abuse, self-esteem, bullying…if we put our time into that instead of e-poking people we barely know…imagine the world your hormones would have an opportunity to thrive in.
According to researchers, women who were premature babies are more likely to have PCOS and diabetes than women who were born to term. Almost twice as many women who delivered premature babies in this study met the diagnostic criteria for PCOS. Eight of those women tested positive for diabetes, while none of the women in the term birth group did. Women delivering prematurely were more than 3 times more likely to have hirsutism than those who did not.
Not so sure the birth is the cause, but it may mean that someone whose metabolic profile was already drifting out of balance may have set the wheels in motion for more metabolic problems in the future.
This is a photo of one of my very favorite paintings at the Art Institute of Chicago. It is composed entirely of a series of painted dots which merge into a photo when observed at a distance. When I lived in Chicago, I'd go down there on snowy Sunday afternoons and stare at it for hours--I'd stand close up so I could see the dots but not make sense of the big picture. Then I'd slowly back up, never ceasing to be amazed at how Seurat, the artist, was able to keep such a beautiful, complext picture in mind the whole time he was painting individual dots.
PCOS is just like that. You can focus on one dot, or you can add the dot to your field of vision and begin to see how all the dots connect. I love this study because it is one of those dots that's important to understand. It's not just about acne, or infertility, or weight. It's about a hormone system that for whatever reason isn't coordinating functions the way it should.
Focus on one dot, with one herb, or one procedure…the one it's easiest to accept or understand…and you're guaranteed to be delivered problem after problem after problem down the line.
Step back, look at the big picture, and focus on things you can do to correct macro imbalances…and you're more likely to be able to connect dots in a meaningful way that improves your health.
Eilertsen T, Vanky E, Carlsen S. Increased prevalence of diabetes and polycystic ovary syndrome in women with a history of preterm birth: a case-control study. BJOG 2011; DOI: 10.1111/j.1471-0528.2011.03206.x
We know that about 10% of women have PCOS (recently, some sources say 20% of women). About 20% of women also have irritable bowel syndrome (IBS), which is characterized by abdominal pain or cramping; a bloated feeling; gas (flatulence – aka, farting); diarrhea or constipation — sometimes even alternating bouts of constipation and diarrhea; and mucus in the stool. But a recent study indicates that about 42% of women with PCOS also have IBS – more than twice as many of the women who don’t have PCOS. As if that’s not enough, gastrointestinal irregularities can be caused by:
• Menstruation (those hormones surging will slam your gut, as well as your mood); • Travel (unusual schedules, foods, or water supply); • Stress and anxiety (ever have to go running for the toilet right before a big test, or a job interview?); • Too much alcohol or caffeine; • Side effect of medications, particularly metformin when it’s first introduced. Many women also report bowel disruption from birth control pills; • Irregular eating habits – oddly spaced meals, excessive carbs, which can be constipating (remember the BRAT diet – bananas, rice, applesauce, and toast – for diarrhea); • Wheat, dairy, soy, or other food sensitivity or allergies; and • Undiagnosed celiac disease (inability to tolerate the gluten most commonly found in wheat).
In other words, if you’ve got PCOS, there’s an excellent chance you also struggle at least intermittently with some sort of gastrointestinal distress. The effects can range from mildly embarrassing and uncomfortable (a little gas, some cramps) to wildly humiliating and awkward, up to and including bowel accidents while out in public, urgency that brings your condition to the attention of friends or family members, acute pain from chronic cramping, and fear of having an undiagnosed serious illness. These problems can cause or contribute to social anxiety and depression.
From a health psychology perspective, there are many things that can be helpful in managing gastrointestinal distress. Chief among them:
• Improved diet (consult with your doctor or dietician about your specific condition), or shifting the content/balance of your diet – this may also help with mood; • Medications, extra fiber, or supplements to help regulate the bowels (again, consult with your doctor or dietician about what’s best for you specifically); • Daily meditation, or other stress reduction techniques, such as yoga or Tai Chi; • Talk therapy to reduce the stress and anxiety that triggers an attack of IBS; and • Hypnotherapy is also recognized as an important treatment for IBS.
While these symptoms may be embarrassing, and even seem shameful, it’s important to know that you don’t have to suffer from them. They are not normal and, while they may not be entirely curable, there are many effective ways of managing or reducing them to a point where you’re no longer self-conscious about going out of the house. Treatments usually result in fairly quick improvements, so there’s no reason not to try implementing some changes. Here’s to your healthy gut!
Reference:
Dig Dis Sci 2010 Apr;55(4):1085-9. Epub 2009 Aug 21. Polycystic ovary syndrome is associated with an increased prevalence of irritable bowel syndrome. Mathur R, Ko A, Hwang LJ, Low K, Azziz R, Pimentel M. Source: Department of Obstetrics/Gynecology, Cedars-Sinai Medical Center, Los Angeles, CA, USA.
Gretchen Kubacky, Psy.D. is a Health Psychologist in private practice in West Los Angeles, California. She specializes in counseling women and couples who are coping with infertility, PCOS, and related endocrine disorders and chronic illnesses.
If you would like to learn more about Dr. HOUSE or her practice, or obtain referrals in the Los Angeles area, please visit her website at www.drhousemd.com, or e-mail her at Gretchen@drhousemd.com. You can also follow her on Twitter @askdrhousemd.
There's a brand new study just out by one of PCOS' premier experts strengthening the correlation between anxiety and PCOS.
However, rather than this study confirming that yes, you are anxious because you have PCOS, it suggests that you may have PCOS because you have a tendency to be anxious.
This is a meta-analysis, meaning that 613 studies and 9 with similar methods were collectively analyzed for their common findings. Meaning the findings are significant.
Anxiety was present in about 20% of women with PCOS, compared to about 4% in controls. That is about 5 times higher.
We at inCYST believe that it is a combination of a tendency to be anxious, in combination with unhealthy coping behaviors such as over/undereating, over/underexercising, compulsions, and self-destructive behavior, that launches the complex web you all call PCOS. Bottom line is that since a large part of the problem is the choices that you make to manage the symptoms, the true cure for PCOS isn't anything we can hand you. It's about how you decide to manage the symptoms.
If you're having trouble changing behaviors that you use to self-soothe, even though you know they aren't working, I strongly suggest that you become a fan of Dr. Gretchen's Mental Health Monday series. Perhaps even schedule a Skype session with her if you do not live in Los Angeles.
It could make the difference between your controlling your PCOS, or the other way around.
Dokras A, Clifton S, Futterweit W, Wild R. Increased prevalence of anxiety symptoms in women with polycystic ovary syndrome: systematic review and meta-analysis. Fertil Steril. 2012 Jan;97(1):225-230.e2. Epub 2011 Nov 27.
