Friday, June 20, 2008

PCOS and HAES?

Well I'm officially dipping into my summer break-from-blogging with this post, but I need to check in to the Fatosphere for some information.

I know there's a few readers out there with PCOS (Poly Cystic Ovarian Syndrome), so I'm hoping for some direction. It isn't certain yet, but the doctors are looking at it as the most likely eventual diagnosis for me and approaching it accordingly. The problem is that every website I can find seems to indicate that you can't effectively treat PCOS without weight loss (which makes me say hmmmm....since, like diabetes, thin women get it too), or low-carb dieting.

The usual "losing just 10% of body weight cures most of the symptoms!" garbage is prevalent on official websites like Mayo Clinic and WebMD, without any clinical information to show whether the improvement is from the actual loss of fat tissue, or the exercise and arugula-eating the person engaged in to lose the fat tissue.

For those who are already struggling to balance Fat Acceptance, HAES (Health at Every Size) and PCOS, are there any books or websites you'd recommend that are light on or free of the weight loss mantra, and possibly advocate holistic therapies? I'd really appreciate some recommendations to get started. My doctor recommended the book by Samuel Thatcher (PCOS; the Hidden Epidemic). Does anyone have an opinion on the book?

31 comments:

Robotitron said...

I've found that intuitive eating really actually helps with my PCOS. If I'm listening to my body, then my body usually wants protein or the kind of whole grains that don't make me feel like ass. I don't consider the way I eat low-carb dieting, because I do still eat carbohydrates. I focus more on whole grains, fresh veg, etc as well as lots and lots of protein.

You're going to the Think Tank, right? I'll be there too -- perhaps we can have a conversation about this stuff. I have not had good luck with many books.

Robotitron said...

I will just say, too, that I have noticed, even in the fatosphere, sometimes when people talk about PCOS they say things like "I started eating whole grains/went on metformin/etc and I went down X number of sizes!" which I find very unhelpful and sometimes hurtful. Conversations like this can sometimes be a minefield.

The Bald Soprano said...

Warning: this will be a very long comment. And I apologize to the moderator if I've accidentally posted this twice. (This version is slightly different, but I still apologize. Something went wonky with my first try, and I'm not sure it went through to moderation.)

I was diagnosed with PCOS 9 years ago (actually, not quite, I was diagnosed with the defining symptoms by a gyn who apparently had never heard of it). As far as I know, there aren't REALLY any treatments that aren't treating symptoms rather than causes (thanks to nobody REALLY knowing what causes it). The symptoms that I know of that commonly get treated are:

1)infertility (I don't know the treatments here, having never tried to get pregnant)

2)amenorhhea/messed up periods (birth control pills)

2) acne (birth control pills --especially either Yasmin/Yasminelle or Diane-35 --I actually have had less acne on the Diane-35, and MUCH less PMS/cramps)

3) facial hair (yes, I really do have doctors try to convince me to do electrolysis or use Vaniqa. Diane-35 and maybe Yasmin are also supposed to help with this)

4) ovarian cysts (I don't actually have any, as far as I know, so I'm not sure of the treatment here, although I'm sure it depends on the type of cyst. My mother had to have a fibrous cyst (yes, that means hair!) removed.

5) weight gain (yes, this is a symptom! You can guess the range of treatments here... from )

6) insulin resistance --last I heard, they're not sure if this is symptom, cause/contributing factor, or just often a co-existing symptom (low-carb weight loss diet, and metformin/avandia. Make sure they test you for insulin resistance before you do anything metformin-like! And avoid avandia, it can lead to low bone density and a higher risk of heart problems, according to my latest endocrinologist. I did turn out to have the insulin resistance --I had normal blood sugars, but really high blood insulin levels, which have gone down on metformin (I've only been on metformin 7 years).)

5)hair loss (well, I don't know if that's even really treated)

For the record, my symptoms never went away even when I lost 45 lbs (that'd be more than 15% of my body weight, and half of what I suddenly gained when the PCOS really hit). I was active before that, and active after that, until I was injured, apart from during a spell of depression. Oh, and I gained it all back within five years of being put on the low-carb diet (at the same time as the metformin).

All the support sites online for PCOS that I've found have been for women who are either trying to get pregnant or trying to lose weight.

I've just (this week) started a blog about HAES and PCOS, but I'm still working on my first non-intro post. When I have the time/money for a full site with forums etc., I hope to create one, but for now the blog is a start.

JoGeek said...

Robotitron: I won't be at the Think Tank, unfortunately. Something chose this week to invade my alveoli and I don't think my fellow FA'ers would appreciate my sharing bronchitis around. I'll hopefully make the next one.

Bald Soprano: Could you pass on the link to your new blog?

The Bald Soprano said...

Whoops, for some reason I thought it would be the auto-link when I was signed in from the blogger account.

bald-soprano.blogspot.com

Like I said, I'm working on my first non-meta post now...

lynnie said...

I was diagnosed with PCOS when I was 22. I'm 45 now. Before the birth of my second child, metformin really helped. Gave me more energy and think more clearly. I stopped taking it after I got pregnant and when I tried to go back on, could no longer tolerate it. This could be because of changes I made while nursing my daughter. I gave up foods with additives and especially msg. They were migraine triggers for me, but I'd also read they could be problems for women with PCOS- especially msg. I started taking cod liver oil and chromium. I try to eat whole grains because refined carbs make me feel like crap. Either these things or nursing hormones or aging- I don't know which or if it's a bit of all of them- helped balance my hormones and I started getting somewhat regular periods and feeling better. It's still a struggle though.

When I was younger birth control pills helped, but I've read they can make the problem worse in the long run and some even think they might be what causes PCOS in some women. Also, I once got down to well within a normal weight range and it didn't make the PCOS go away. Gained it all back plus some too.

Fillyjonk said...

Jo, there's a HAES & PCOS livejournal community, but it doesn't get a lot of traffic. I think it's because if you're following HAES, there's not a lot to say about your PCOS treatment besides "take your birth control pills and try not to eat so much sugar that you get woozy or sick, which falls under HAES anyway." Most PCOS sites focus heavily on weight loss because it's the most active thing people do about PCOS. If you're not trying to lose weight, PCOS isn't a big deal -- you take your hormones, try to get enough protein in you, keep an eye on your blood sugar, and that's about it. It's not an active, daily thing.

I think finding a HAES-positive endocrinologist is the most important thing.

yellowhammer said...

I would just like to say that weight loss does JACK for my PCOS. I had pcos at 159, I have PCOS at 248.

Whiner said...

I'm not an official PCOS diagnosee although I've been through a lot of tests with doctors thinking there MIGHT be something up with me.

For me, the 'weight loss' thing is true. When I went on a mild diet/exercise kick and lost ten or however many pounds, my periods started again. When I regained them, they stopped.

However, almost all PCOS literature out there seems to have to do with trying to get pregnant. I'm quite content to be infertile. And now that the doctors have apparently decided it's no big deal if I never have periods, I'm pretty content with that, too.

PCOS-or-whatever (since I'm not official) hit me with a bang one summer. Suddenly my weight jumped and my periods stopped. I spent a lot of years stressing over it. Now I just hope that the doctors don't change their minds and try to make me bleed again!

Piffle said...

For the hair growth you could try some spearmint tea, it reduces testosterone. I like it too, and it's pretty harmless as far as I know. And if you have some in a pot it's very prolific and free!

http://en.wikipedia.org/wiki/Spearmint

And I don't have PCOS, that I know of, but I think my sugar levels are wonky because I get very tired after a high carb meal. I find that a grape seed and skin extract gelcap helps me with this. I take one with breakfast and one with lunch. After dinner I want to be tired so I sleep so I don't use it then. I use valerian root tea to help me sleep, it's effective and best of all helps me get back to sleep when I wake up. I have terrible trouble getting back to sleep if I don't take it.

JoGeek said...

Whiner: From what I've been reading, it may be more likely that the exercise itself helped more than shedding a couple pounds of fat tissue. It might have had the same result whether or not any weight loss occured.

Fillyjonk: The kicker with me is that I can't take birth control pills. The last time I tried it I found myself on a crying jag triggered by a Dawson's Creek episode (who knows how I started watching it to begin with!). The pills went in the trash. Not an option.

Stacked said...

I was diagnosed with PCOS 2 years ago and my doctor put me on a 1200 calorie a day diet to lose weight. I took it 8 steps further and lost about 40 pounds on a very restrictive and unhealthly diet. I also take metformin and spironolactone.The weight loss did nothing to help my symtoms and I actually fell better now that I have gained the weight back and am practicing intuitive eating, instead of refusing to eat carbs.

Unfortunately I have been unable to find any resources that don't promote losing weight, I have a couple of books, but they are basically about ' Eat this, get thin and you will be fine'.

Soulcysters is a forum for PCOS sufferers, but most of the women on there are actively trying to lose weight, so there's alot of diet talk.

Whiner said...

jogeek: maybe so, but I think I'm in better overall-fitness than I was then (walking. lots.) and the cycles still trickled away and stopped as the weight came back.

however it's certainly possible that the KIND of exercise I was doing at that time was more effective towards whatever the cause of the problem is. Or that it's more a factor of specific things in my diet... ISTR one time having a spontaneous cycle in the middle of a long dry period after a month in which my husband had been doing a lot of cooking. Who knows? The doctors certainly don't seem to!

The Bald Soprano said...

Jogeek: Not all birth control pills are the same. I've had some that made me feel lousy, I had one that made me bleed 3.5 weeks out of 4 (that one lasted all of one month!) --that one was the generic of a name brand that I was ok with, and it gave me problems. It's really a trial and error thing.

I had one period of time where I didn't have a period for 15 months, btw, before I had any treatment beyond birth control (I went off the birth control for money reasons, for 14 months...). That disturbed me. However, I'm back at around the same weight I was back then, and when I temporarily went off the pill last year, I still had periods.

By the way, the spironolactone seemed not to do much for me. I'm no longer on it.

Sniper said...

The only things that helped my PCOS were surgery and metformin. The surgery was to remove 36 cysts (little bastards!) and the metformin helps with the weird blood sugar issues.

What really didn't help was dieting. It took me 7 years to get a diagnosis because most doctors told me to "just lose weight and your periods will regulate." Of course, I was living on 1500 calories a day and exercising an hour a day at the time. I managed to diet myself up from 135 to 210 pounds - each diet slowed my metabolism down bit by bit. DON'T DIET!!!

Ahem. When I was first diagnosed with PCOS doctors basically experimented on me - each experiment was supposed to "fix me right up." Nothing worked. Hormone pills were, in fact, disastrous. I got a lot of promises and spent a lot of money and didn't end up with a whole lot to show for it. PCOS does not go away and there are no treatments to date that actually go to the cause. That's because nobody's sure what the cause is.

Good luck.

The Bald Soprano said...

Sniper: I SO agree about the doctors and their experimentation.

I was taking something like 18 pills and three nasal sprays a day at one point (18 physical pills, not 18 different meds), because of an endocrinologist who was experimenting on me.

Sniper said...

... because of an endocrinologist who was experimenting on me.


I'm so sorry. My "favorite" doctors have been the ones who prescribed hormone pills. It turns out that messing with my hormones makes me suicidally despressed! I was also on Byetta for a while until it hit me that injecting gila monster venom into my abdomen twice a day was probably not worth the 10 pound weight loss.

The Bald Soprano said...

My mother likes the Byetta (not just because of weight loss), but she has actual diabetes as well as PCOS.

The endocrinologist who experimented on me was better than the doctor who wouldn't renew my metformin prescription or test me for hypothyroidism. And in some ways, better than my current one, who, while I like the fact that she actually treated my hypothyroidism, doubled my metformin dose without doing any blood tests first and who the last time I went to see her, forgot why I was there!

Sniper said...

Oh, I almost hate to bring this up, but since women with PCOS are here...

It can lead to heart disease, and not in the OMGURFAT way. I can't replicate the explanation my cardiologist gave me, but the bottom line is that PCOS screws with hormones and adrenals, and this can cause problems with heart function. I don't have any crap on my arteries and my cholesterol levels are normal, but those facts have nothing to do with the diastolic dysfunction. The studies on this are fairly new but they are available online.

Tracey said...

It's such a shame that so much of the information focuses on "weight-loss" specifically, when I imagine that weight-loss is merely a common side-effect of eating in a way that might help with PCOS. I, too, have seen research that lower-carb (or at least maybe lower glycemic) eating can help with PCOS. I don't have PCOS, but I try to eat as low-carb as possible most of the time, because it makes me feel better (clears up my heartburn and indigestion, gives me more energy, and keeps my out-of-whack blood sugar under control). I don't know if it's the carbs and blood-sugar per se, or if it's that way more people that you would imagine are walking around with severe gluten insensitivities. Good luck with trying to find information for treatment of nearly any medical issue that doesn't try throwing weight-loss into the mix. It's so frustrating. I think people speaking out about how weight loss (on its own/by any means necessary) did NOT help them in any way is a good thing to help doctors and health organizations realize how flawed their advice is.

(I like your blog, by the way. I found it because the title is similar to mine! (Unapologetically Female)

Anonymous said...

I pretty much gave up on the PCOS forums years ago because it was so dieting-oriented. Gah.

I remember going to one PCOS workshop by the Zone people where they used the old hackneyed phrase, "You're digging your grave with your fork" and the women around me just lapping it up and applauding. Ugh.

I finally just left those forums because they were SO not open to HAES concepts or approaches. Sure would be refreshing to have a place to discuss real PCOS issues without having to constantly listen to diet talk!

LisaB said...

Hey I don't have as much experience with this as some, my daughter was diagnosed with PCOS maybe 10? years ago. Its been a long baffling road. Weight loss is pretty much tough and is no guarantee that you will do more than improve your symptoms somewhat. Exercise and serenity are key, however to feeling as good as possible. I hope you will blog more about this. I still read everything that comes out.

karen said...

I, too, have many symptoms but never had a formal diagnosis. At this point, I've had my children, so I'm mainly concerned with better health. I just read a great book that discusses the balance of hormones and the problems caused by an excess of estrogen - one is PCOS. The author is Dr. Lee, and the book I purchased is What Your Doctor Didn't Tell You about Menopause. He also wrote similarly titled books re: Perimenopause and breast cancer. Obesity is mentioned mostly as a symptom and a few pages are written regarding healthy eating and how the typical Western diet might create fat when hormones are out of whack. But the preponderance of the book is all about hormones. He recommends using natural progesterone cream to eliminate estrogen dominance. Both the book and the cream are available at health food stores. Good luck!

Jacqueline said...

I'm enjoying reading your blog but wanted to jump in with this one (though I see I'm late to the comment party). PCOS by Collette Harris and PCOS and Your Fertility by Harris and Theresa Cheung are both wonderful books written from an alternative health perspective. For web advice, I highly recommend the Women to Women site. Again, written from a holistic/alternative health perspective, it's loaded with good stuff. Here's their introductory article on PCOS: http://www.womentowomen.com/insulinresistance/pcos.aspx

I agree with other posters that a few of the big PCOS message board sites are filled with dieters, but hey, there's always room for a new thread that's not weight-loss specific. Check out soulcysters.com and the PCOS community on sheknows.com -- there are both pretty active.


Good luck!

Jacqueline

co-author, Big, Beautiful and Pregnant

Jeffrey Dach MD said...

PCOS, the Hidden Epidemic

The fundamental problem with PCOS is anovulation and not making progesterone for two weeks every cycle.

This lack of progesterone leads to hormonal imbalance in the ovary, causes the ovary to produce testosterone and leads to the irregular menstrual cycles and infertility. This is aggravated by obesity and insulin resistance.

Progesterone is missing, therefore replacing it makes sense.

To read more, click here:

Understanding PCOS, the Hidden Epidemic by Jeffrey Dach MD

my web site

kate said...

Late to the party, but that's typical of me. I would say two things.

First, any time anyone says anything about PCOS being exactly one way or another or causing one thing or another or always doing this or that, it sends a signal to me that this person doesn't know enough yet about PCOS (sorry, Dr. Dach(?)). PCOS, as a syndrome, is a collection of symptoms. Not everyone has all of the symptoms. For instance, I have the wicked ovarian cysts, ridiculously high androgen levels, yet no excess facial hair, and I'm 100% positively NOT anovulatory (those wicked ovarian cysts used to let me know every single month that I had, in fact, ovulated, since the cysts were rupturing with every monthly ovulation causing excruciating pain), and I'm definitely NOT insulin-resistant.

Please do not believe that you have to be insulin resistant to need Met.formin. This drug changes the way your body accepts sugar, and even if your tests show that your insulin levels are perfect, if you have PCOS, it is possible (and likely, according to theories about the way the body creates hormones) that your body is extraordinarily sensitive to even the smallest fluctuations in blood sugar levels, and met.formin can even that out.

I fully realize that the Met isn't for everyone, but for me, it has truly been a miracle drug (I wrote it a love letter once on my blog). It didn't miraculously result in massive weight loss, but it did seem to allow me, for the first time in years, to actually see a correlated response from exercize (where as previous weight loss efforts were only successful if I was starving myself and exercizing to complete exhaustion two hours a day seven days a week). Weight loss or not, it just made me feel like, "Shit- I was RIGHT all those years that exercize and diet alone weren't enough for me!"

Anyhow, being a fully actualized person, I (of course) realize fully that weight loss is not necessary for health. And I definitely agree with the idea that it is truly the exercize (not the weight loss) that gives the biggest benefit to those with PCOS. When I stop exercizing, my PCOS symptoms begin to rear their ugly heads (even if my weight happens to be lower during that same time).

Feh. I've gotten off track long enough.

Second thing, to answer your question, I have found that I enjoy the "PCOS Diet" book, by Collette Harris (which I think others have mentioned). She does definitely occasionally spout the "weight loss helps!" thing, and YES, it is a "diet" book, but it is not intended to be a "diet to result in weight loss" book- it is intended to be a "eat more whole grains and reduce your PCOS symptoms" book. And so, if you are looking for a natural, non-drug approach to dealing with the symptoms of PCOS, this book may assist in addressing that by suggesting an eating style that avoids foods that can mess up those of us with sensitive hormones.

Just my $0.02...

Fat Bastard said...
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Fat Bastard said...
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Bridgette said...

I am somebody who has recently started exhibiting signs of PCOS, my sister was diagnosed a year ago, my aunt, a few months after her.

For those whose hormone levels are normal, but still have symptoms...ask about your prolactin levels. The symptoms for hyperprolactinemia are similar to PCOS (they're actually related in some obscure way that nobody can describe).

I have tried dieting and such on my own, as I have no health insurance and so getting any "treatment" was something I was trying to avoid the expense of. Funny thing is, I reached 205 pounds when I was on depo...and no matter what I do, I can't shake the weight. I have gone down 2 pants sizes in the past few months...and still weigh between 200 and 206 (depending on the day).

So losing weight is something that I've given up on. My doctor is also the first doctor to take me seriously. Have tried with multiple doctors..this is the first one who said "ok...we're gonna run the tests". My prolactin levels came back normal (I know about that problem because I had another aunt with the same problem), I haven't heard about the other hormone levels, but my ultrasounds were normal.

At best, I have a bunch of really irritating symptoms with no problems...at worst, I have had an abnormal pap (I'm 27, this is the first one ever and I'm terrified given the family history in that area). I search all over the website, and I have to say that this blog was the most helpful in any way.

Cheers to you ladies and I hope things get better :)

Anonymous said...

Hi, just found your blog. I have PCOS. Fat is ONE OF the symptoms, and not a cause, of PCOS. And contrary to all the "lose weight and it will all get better" propaganda, I actually was diagnosed with it after having excruciating pain that sent me to the hospital from a cyst that broke and was bleeding - AFTER having spent 8 months on Weightwatchers and having lost 40 pounds.

Anonymous said...

I'm REALLY late to the party!!

Anyway, I was just diagnosed with PCOS and I'm in the "normal" weight range with a BMI of 24. However, for me it's important to feel healthy again, as the screwy hormones mean I spend one night a month with hot flashes & being sick... I do find that refined carbs make symptoms worse though.