One of the pieces of PCOS that I find intriguing, but which really is not well studied, is what is happening with appetite. This is such a crucial piece of the picture, because it doesn't really matter what ANY expert, medical, nutritional, whatever…tells you that you SHOULD be eating, if your appetite hormones are not supporting the advice.
In order for us to better understand what is happening, and therefore derive effective solutions for this problem, we need to toss a couple of assumptions we have about women with PCOS.
It may not be valid to assume that women with PCOS overeat simply because of emotional issues. (Note: I did NOT say there is NO emotional eating, but I suggest that it may be but one of the pieces of the puzzle.) It seems that the primary assumption on the part of many professionals is that once you lose weight, it is a sign that your appetite and intake are back in balance.
As I interview more women with PCOS, I'm learning that even lean women with PCOS struggle with appetite. A very common scenario, it seems, is to do everything right--eating, activity, sleep, stress management…and some days, despite all the effort, appetite seems to take on a life of its own.
If the experts aren't acknowledging this, some of the more strong-willed cysters may be able to learn to ignore these inappropriate hunger and fullness signals. In other words, the only tool they have to combat obesity is detached, restrictive eating. And if they own up to that with their caregiver, they may be diagnosed with an eating disorder.
Nowhere in there is there room for a physiological explanation.
Leptin, ghrelin, insulin, cholecystokinin, and endocannabinoids…all hormones affecting appetite, have been found to be out of balance with PCOS.
Given this and the stories that are accumulating in my files, it simply does not seem appropriate to advocate for an intuitive eating model as the therapy or the goal. It may be achievable over the long run, but it is not fair to recommend a paradigm that assumes that appetite mechanisms are intact, when in fact they are not.
I encourage you to share your observations with whoever is helping you. I have some work to do to collect more of the references and write about this phenomenon, so you have more science to support your advocating for yourself. It is coming.
For today, I just wanted to introduce the thought and encourage the dialogue. The more we hear from you, the more we can look for explanations and solutions.
inCYST is looking for women with PCOS who have NOT been supplementing with fish oil to participate in a study helping us to evaluate the baseline omega-3 profile for PCOS. This is our first pilot study! Please contact me at marika@google.com for details if you're interested and ONLY if you've never used any kind of omega-3 supplement.
I'll be in Los Angeles, California, on May 14, 2011, to offer counseling sessions as a fundraiser to pay the costs of starting the inCYST Institute for Hormone Health.
I have 5 hour-long appointments available starting at 1 pm. Suggested donation for each session is $150.
If you're interested, I will need a credit card number to reserve the space. This card will not be charged until our paperwork is filed, but it will be charged whether or not you use time reserved and considered a donation to our new nonprofit.
If you do not live in Los Angeles and would like a counseling appointment that counts as a donation, I can arrange five web-based appointments as well.
Contact me at marika@google.com if you are interested.
I am overwhelmed, humbled, and entirely grateful today. I received an email from the publishers of the classic PCOS textbook,"PCOS: The Hidden Epidemic". Our good friend Amy Demma told them about us.
Seems Dr. Thatcher's highly respected book is out of print, and by contract they cannot sell them. So they were looking for a place to donate them. I've agreed to accept the donation, and to use proceeds from sales of these books to support the new PCOS research institute.
If you'd like to order a book, here is the link to do so.
Dr. Thatcher died before I ever had an opportunity to meet him, but I always respected him for his passionate advocacy for women with PCOS, long before anyone else was interested in the syndrome. It is an honor to be able to share his work on behalf of encouraging the passion in others. It feels like a perfect first fundraiser to be doing. If we can accomplish but a fraction of what he did on his own, we'll have done a lot!
Thanks to Perspectives Press, Inc., Amy Demma, and of course, Dr. Thatcher.
I am considering hosting a fundraiser for the new PCOS research foundation in Los Angeles. I was thinking of being over there on Saturday, May 14, and conducting a day's worth of counseling appointments, with all of the proceeds being used to cover the startup costs for this organization.
Since I would be traveling over from Phoenix and absorbing the cost of that travel, I would need your commitment to participate to be made by giving me a credit card number that would be charged whether or not you attend your scheduled appointment. Either way, your payment would be considered a charitable donation.
If you are interested, please contact me privately at marika@google.com so I can ascertain if enough interest exists to start to plan the trip.
If you are NOT from Los Angeles and would be interested in a similar fundraising day conducted over the phone, please let me know, I'll do that as well if there is sufficient interest! Thank you!
I cannot tell you how taken back (in the most wonderful of ways) I was last week to have so many of you step up and offer donations, services, and support for the research institute idea. Thanks to all of you, you've inspired me to go ahead with the idea.
Here is where we stand as of today.
For a variety of reasons, though I currently live in Phoenix, I will be launching this institute in California, with a physical headquarters in Los Angeles.
We're currently in that common dilemma many new nonprofits face, that is, how to raise funds to offset the startup costs when we are not officially started up and legally able to accept donations. We're currently working on the solution that will have us officially in existence by June 2011.
Our focus will be to fund research regarding hormone health, with a focus on nonpharmalogical and nonsurgical options to common issues such as PCOS.
We've got a lot of work ahead of us, I've been told this type of venture is no picnic, but it's definitely an adventure worth pursuing.
I'll keep you posted as we progress.
Thanks for all the support and offers…we're definitely going to need a lot behind us as we put all the pieces together!
We've got some very big research opportunity brewing here. I'm super excited about it, but I'm also concerned, with the low follow through on simple requests we've had here on this page at all price points, in all locations, at all levels of difficulty, that the dropout rate we might experience due to poor motivation will overshadow the real benefits to any treatment we try. That would be a disservice to women who ARE motivated and making healthy choices. Research findings only work on individuals who are motivated to act on that science. It only makes sense that when we study science, we study it on the individuals most likely to make real use of that science.
Therefore, the only women who will be eligible to apply to participate in any inCYST-sponsored studies…will be those who have demonstrated that they are willing to invest in themselves. We'll be recruiting from paid members of the Institute for any studies that we sponsor. Thank you for understanding.
If you'd like to join the Institute and reap the benefits of participating in research, click here for more information. A $25 membership will cost you slightly less than 3 meals at McDonald's, or about 5 packs of cigarettes, 12 2-liter bottles of soda, or a manicure. Only one has potential to better the situation that brought you to this blog in the first place!
A final note--we don't want to be recruiting from a pool of women only interested in a single aspect of PCOS — we are a mind-body organization and that goes against our philosophy. We are looking to create a pool of potential subjects who participate in what we do for our big picture vision. For that reason, please do not ask what the nature of the study will be. That will be disclosed to Institute members when subject recruitment for each study begins.
We do hope you join us. We've got a lot we plan to accomplish and we really do need you on our team.
For some reason, I have been placed on the mailing list for a fertility researcher in the UK who is doing some interesting work looking at how fertility doctors conduct their treatments around the world. I actually tried to answer his survey, but since none of the choices available to me had anything to do with changing diet and lifestyle, I was not allowed to complete it.
That is something I find very interesting, that it would not even occur to a fertility specialist to consider the nutritional status of the client and the nutritional interventions provided clients as important variables to consider. Dr. Balen, if you ever wish to consider those factors, now you know where I am.: )
Anyway, I thought the readers of this blog would find some of the results of this study to be interesting. I'll put my commentaries in italics.
This is a summary of 179,300 IVF treatments conducted in 262 fertility centers on every continent where there is a fertility center…meaning Antarctica was not on the list.
1. 73.3% of these cases were assessed for impaired glucose tolerance. That means that 26.67%, or 47,694 women, were not. --I would be interested to see the geographic distribution of these answers. Several years ago, I moderated a listserve in Spanish for women with PCOS and it was rare in that group to hear of women being treated for insulin resistance. I actually had to go on strike and refuse to give out any more information until the women in the group who had not been evaluated, got the evaluation. About three months later, we had about 6 pregnant women amongst us.: ) --Not sure why, since PCOS has such a strong connection to insulin resistance and it is the number one cause of infertility, this assessment simply is not a universal precaution?
2. 61.3% of the physicians who chose to assess for impaired glucose intolerance were only doing so in obese patients. --Here we go again, the invisible lean cyster. If up to 70% of women with PCOS are NOT obese, consider the number of infertility cases that are made more complicated than they need to be, simply because of a misperception of what PCOS has to"look like" in order to be taken seriously.
3. 69% of the physicians surveyed, in their PCOS patients, considered clomiphene citrate to be the first line of treatment. --I would love to know how they would have answered this if they had been given the option of nutrition/lifestyle/sleep hygiene consultation had been an option to answer.
4. Cutoffs for treatment based on BMI: 30% would not treat if BMI was greater than 30 33% would not treat if BMI was greater than 35 20% would not treat if BMI was greater than 40 6% would not treat if BMI was greater than 45 --Which has me wondering, again, why nutrition/lifestyle/sleep hygiene consultations are not considered the absolute essential first line of treatment.
So lean women, apparently, even though their BMI's would be considered appropriate by these practitioners, would not be given the assessment that would help them get the proper treatment.
And obese women, apparently, are not given any direction regarding what to do to bring their BMI into a workable range.
If you're still wondering why your patients with PCOS can be so angry, skeptical, and emotional, maybe you would have better success with an accounting career.
Imagine how much more successful my colleagues in these 262 treatment centers would be if they partnered with professionals who know how to do something about those quandaries.
We'd love to help you improve on those statistics.
The invitation is open.
Source: PCOS – Definition, Diagnosis and Treatment, a survey compiled by Prof. Adam Balen, Leeds Centre for Reproductive Medicine, Seacroft Hospital, Leeds, U.K
The University of Wisconsin is seeking non pregnant, non lactating, women with and without PCOS, age 18-38 years for a research study about metabolism. To be eligible for this study you must:
· Not have diabetes or a significant change in weight in the past month
· Not be currently taking medications for diabetes, depression, weight loss or hormonal birth control
· Be willing to participate in a hospital stay lasting approximately 26 hours.
Office visits and medical evaluations will be provided at no cost. Participants will receive compensation for their time.
For more information about this study please call:
For those of you who are not on our Facebook fan page, here is an update about our progress! And a recent photo of me if you've ever wondered what I look like.
With all the positive energy and support surrounding this effort, we've got some great and exciting things to blog about coming up!
All these years I've been studying hormones, it's always seemed to me that one of the main reasons their disorders are so hard to figure out and help…is that the research that needs to be done to find the answers is not highly likely to be funded by pharmaceutical or food corporations. Sure there are are other grants, but a bottleneck is created when everyone wanting to do research about foods, herbs, sleep, acupuncture, etc…, is forced into competing heavily for the other money that is available. The politics and competition for that money become pretty incredible.
That leaves people with hormone disorders to their own devices and what they find on the Internet, which is often presented by one person based on their personal experience, or someone trying to sell supplements and capitalize on another person's fears. Not always smart, not always safe, not always successful.
I kept thinking there had to be a better way.
Then, a few months ago, twice in 36 hours, I was asked where money could be devoted to MY research institute. And a reporter who was following my blog asked me if I had a picture of my institute (I didn't think my dining room table piled with papers and a sleeping kitty would provide much credibility…so I declined at the time.)
However…I did realize that it was time to stop thinking someone else was going to do this and that life was surrounding me with people and circumstances that made it possible for ME to get it going.
I was finally pushed into action when a woman with PCOS, (who happens to be organizing one of our fundraisers) could not get anyone to accept money for PCOS research, and who was actually told the disorder"was not sexy enough to merit that kind of fundraising". Really? One in ten women? Leading cause of infertility? Most common endocrine disorder in women? You have GOT to be kidding!?!?!
So I've been doing the legwork to get the inCYST Institute for Hormone Health up and running. We're opening up headquarters, to be housed in the new Blank Spaces coworking community in Santa Monica, CA next month. (Lucy, #1 on my list after signing the lease and writing the check…is getting you that picture.)
And while I'm sticking my neck out and willing to be the face, mouth, and typing fingers behind this organization, it's really designed to be user driven. I really want this to be as volunteer-oriented as we can be. Thus far, we've got two fundraisers planned:
1. (Late summer, date TBD, Los Angeles) Bootcamp with celebrity fitness trainer Craig Ramsay.
2. (September 17, rain date 18, Nashua, NH) 5k walk. The organizers of this fundraiser are also working to figure out a way for walkers to participate if they are not geographically near this location.
All it took was for me to say I would do this for people to begin volunteering their time. It's simultaneously humbling and inspiring! There's a lot to do in order to live up to these expectations, and I'm doing all that I can. I'm sending you this announcement so you know we're out there and to share with you a few ways you can help us out.
1. Tell your friends! The more people we have on our fan page, the easier it is for us to publicize events. Here is also where we'll be providing updates on our official activities in the research arena.
2. Volunteer! If you'd like to help out with either of these events, or have an idea for a fundraiser of your own, please let me know what you would like to offer in terms of time and talent.
3. Of course, donate. I just spent a day at a nonprofit summit learning about the nuts and bolts of efficient nonprofit management. I intend to make our foundation very lean and mean so that the bulk of the money earned goes directly to our cause. It's too important to not prioritize that. I've got a Paypal address where you can send money, germandesertgirl@yahoo.com, or until the foundation's California mailing address is set up, you can send checks to inCYST Institute for Hormone Health, 4201 East Camelback, Unit 16, Phoenix, AZ 85018.
BTW, I am teased by my family for being more than a little driven and nerdy. Once my mom wanted to spank me for something I had done and she found me sitting cross-legged on the floor reading a book. I obliged her by standing up, letting her punish me, and immediately sitting down. Never stopped reading the entire time. When she tells this story she always pauses and says,"That is when I knew you were not the average child." That drive and passion I commit to everyone who supports the Institute. Thank heavens we're about healthy living as it will give me an excuse to put the books down, get out, move around, and meet some of you amazing people from time to time.
I may be overly nerdy and driven, but I work hard to also be human and compassionate. Please know that any thoughts you have to share are more than welcome.
If you ever wish to contact me my email is marika@google.com, and my phone number is 623.486.0737.
