What's Missing in the PCOS community?

[DivineMadness]

http://www.pcos.northwestern.edu/more_on_pcos.htm




National Association to Advance Fat Acceptance
(916) 558-6880
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i dont know why..but that bothers me..that being listed as "more on pcos"

[KatCarney]

http://www.pcos.northwestern.edu/more_on_pcos.htm

i dont know why..but that bothers me..that being listed as "more on pcos"

Tell them:

http://www.pcos.northwestern.edu/contact_us.htm

[beejcee]

here's my two cents worth -- i would like to see more awareness directed towards younger (teenage and college age/young adults). i suffered like crazy because i thought i was a freak due to the excess facial hair and the never-ending problems with my weight. the day my doctor told me that my problems were not my "fault" was one of the happiest days of my life.

we live in a world that exalts the feminine -- pcos is a disease that goes can make you look and/or feel less feminine -- that's why you don't hear about it.

thanks to these boards -- i feel much less shame about myself and it has made my life so much better.

[KatCarney]

One think I think is missing is more 'activism' on the part of women with PCOS. Granted we have lives, and are tired, and are 'dealing' with PCOS, but I'd like to see more websites built, more letters written to newspapers, more blogs, more, more, more.

Heck, I'd be happy if more women read the REASEARCH ARTICLES.

For now, see here:

http://www.soulcysters.net/your-pcos...-event-192275/

[beejcee]

here's another thing ... since i am in perimenopause, i would love to have more information about the ways pcos affects "older" cysters....

[KatCarney]

here's another thing ... since i am in perimenopause, i would love to have more information about the ways pcos affects "older" cysters....

Most research suggests that the PCOS symptoms get better as a woman ages.

More research can be found at PubMed.

Also see here:

http://www.insidepcos.com/articles/6...en-ageing.html

One more...re: CVD risk
http://www.soulcysters.net/polycysti...ndrome-123240/

[PCOS Today Magazine]

Did I realize I would stir up this much discussion with my question? No! Did I hope it would? Yes! Whoo hoo!!!

Furthermore...

Most research suggests that the PCOS symptoms get better as a woman ages.

More research can be found at PubMed.

Also see here:

http://www.insidepcos.com/articles/6...en-ageing.html

Here's the thought that came to my mind after readying your quoted message above...

There may be all the research in the world out there about PCOS, but until it is distilled down for those who don't want to slog through the research, it won't matter. Not everyone are the knowledge hounds we are, Kat. And I don't mean that to sound snippy, because that's not where it comes from. What I mean is...well....occam's razor...usually the simplest explanation is the best explanation. Some stuff needs to be reduced down into bite-sized pieces.


--- Linda

[tk26225]

I realize now that my reply was unrelated to the original post.. that being said I do have a suggestion to the original post that will make more sense. :-)

I cannot stress enough how important it is to educate the DOCTORS that are treating young women in how to diagnose and treat PCOS. I've encountered, and heard of far too many doctors that misdiagnose, ignore and do not understand PCOS. We as patients shouldn't know more then our own doctors... should we? I suppose it's not a bad thing but it's scary to think that we do! I don't know if they aren't teaching this in med school or what the problem is but it seems to be prevalent that there are a lot of doctors that need to be educated more about diagnosing and treating PCOS.

(stepping down from my soapbox now)

[KatCarney]

There may be all the research in the world out there about PCOS, but until it is distilled down for those who don't want to slog through the research, it won't matter.

A lot of what 'is' distilled down is posted in the Research Articles forum, and pure media articles are posted in the media forum. I tend not to post the stuff that requires a medical degree to understand. Moreover, I'll often highlight points that are the 'take away' information.

It's clear from the 'views' counts on the threads that a large % of members aren't making the effort to even read the first line. Technical or Distilled. (it won't stop me from posting, but it was the basis for my answer to your post.)

I wasn't a 'research hound' when I was diagnosed - and probably have FAR less formal education than many women here - but I wanted to be educated about PCOS, so I got online and read. And when I was dx'd there weren't even the number of 'consumer friendly sites' that there are now. (Actually, I don't think there were any - Neither SoulCysters nor the PCOSA existed. There was only a pcosListServ)

Even if the information was 100% technical AND in a foreign language, my response to your question would still be the same: that I'd like more women with pcos to read what's out there.

These days tools like Google Scholar and PubMed make it easy to find EXACTLY the resarch one might want. The days of pure 'slogging' are over. (Google didn't exist when I was dx'd, either)

Even if cysters made a point to read 1 article a week, that, in my opinion would be progress. Responsibility when it comes to PCOS awareness and education is a two way street. The medical community AND patients share the responsibility, imo.

Personally, I think the women here are quite intelligent, and don't really need to have information 'distilled' down beyond what's out there now. (But again, that's just my opinon) It's just a matter of making the effort to read more on the subject. (Which was the point I was making)

Not really a point of argument. I totally respect the fact that you disagree with my opinion.

[Looking4Hope]

I personally try to read everything I can find on the subject. I want to be better informed. For me the problem has been reliable information. I often run into the sites that outline the symptoms of PCOS, some that talk of treatment, and then the ones that claim "miracle cures". The ones that claim a cure are popping up more often now it seems. They have been a BIG let down to me. Always selling creams or pills that cost an arm and a leg. I will admit that in the beginning I gave into those and spent alot of money trying to help myself because the doctors had failed me. I dont buythe products anymore. Nothing has helped me and now that I dont have health care I am not on any meds. The Dr that finally DX'd me put me on many many different BCPs changing them every 3 months because each one made me sicker. She would not give me Met even though I had read alot of good things about it, and would give me no explaination of why other than she wanted me on the BCP for at least a year first. She said she wanted me to loose weight before TTC. I am 28 and have wanted a child for a long time. For me the problem is not that I dont know much about what I have it has been that the Doctors dont. I feel as though I have hit a brick wall. It is very discouraging when the only thing any Dr has ever done is put me on BCP and provera and basically said deal with it.

[KatCarney]

I hear you L4H!

Unfortunately, I think the problem of 'miracle cures' is only going to get worse at more marketers cash in on a subset of patients who don't have any FDA approved meds for their symptoms.

Even more reason to stick to the 'real' research. Another great thing about the net is that most of the studies in PubMed have the email addresses of the researchers. They are VERY helpful when it comes to explaining things.

Also the doctor directory on in the sidebar of SC has emails to researchers from around the world. Any questions about a product? Run it past an expert.

Keep reading...imo, it's a good thing. One of these days, in one of those studies, you might stumble upon what IS your miracle cure...that's how it worked for me. An obscure french study about flutamide, and another about a new 'syndrome x' and simple carbs, turned it all around for me.

{{hugs}}}

[PCOS Today Magazine]

A lot of what 'is' distilled down is posted in the Research Articles forum, and pure media articles are posted in the media forum. I tend not to post the stuff that requires a medical degree to understand. Moreover, I'll often highlight points that are the 'take away' information.

It's clear from the 'views' counts on the threads that a large % of members aren't making the effort to even read the first line. Technical or Distilled. (it won't stop me from posting, but it was the basis for my answer to your post.)

I wasn't a 'research hound' when I was diagnosed - and probably have FAR less formal education than many women here - but I wanted to be educated about PCOS, so I got online and read. And when I was dx'd there weren't even the number of 'consumer friendly sites' that there are now. (Actually, I don't think there were any - Neither SoulCysters nor the PCOSA existed. There was only a pcosListServ)

Even if the information was 100% technical AND in a foreign language, my response to your question would still be the same: that I'd like more women with pcos to read what's out there.

These days tools like Google Scholar and PubMed make it easy to find EXACTLY the resarch one might want. The days of pure 'slogging' are over. (Google didn't exist when I was dx'd, either)

Even if cysters made a point to read 1 article a week, that, in my opinion would be progress. Responsibility when it comes to PCOS awareness and education is a two way street. The medical community AND patients share the responsibility, imo.

Personally, I think the women here are quite intelligent, and don't really need to have information 'distilled' down beyond what's out there now. (But again, that's just my opinon) It's just a matter of making the effort to read more on the subject. (Which was the point I was making)

Not really a point of argument. I totally respect the fact that you disagree with my opinion.

Kat, I agree with you across the board. My view comes from what I study and what I teach. I believe wholeheartedly the women here are incredibly intelligent. My view comes from the fact that we live in a world that is so overpopulated with information right now that if it isn't boiled down, most of us don't have the time to read it. That's what I meant! And I totally agree that it is both the medical community and patients that share the responsibility. Healthy (no pun intended) communication between those in the medical profession and those who utilize medical services has always been an area of contention. I recently read this book by some UK author and MD called "Making Sense of Illness," and he really pointed out how much of a disconnect there is between those in the medical professions and patients.

All this said, maybe to get more women to read the research will take some kind of focus on it. I don't know what. Will probably be thinking about it! My perspective, however half-cocked it may have come off sounding, was just a mere hypothesized explanation for what I thought I was hearing in response to that question.

--- Linda

[Jashobeam]

I didn't read the replies, so forgive me if I'm repeating what others have said.

* All hospitals should send out periodically (maybe in PCOS awareness month) a post card to every female patient on thier mailing list and the clinic mailing lists a quick summery of what PCOS is, the symptoms and treatments and long term consequences of those being untreated.

* All GPs/Family Docs should screen EVERY female in their care for PCOS and IR and AF problems periodicaly.

* Every parent should get a handout on PCOS from their OB when they have a baby girl and again from their Pedi when their daughter turns 7.

* All GYNs and OBs should screen EVERY woman in their care for PCOS and insulin resistance.

* All Pedis should screen EVERY girl in their care for PCOS or AF and insulin problems in general.

Since ten percent of ladies in the US have PCOS, we are vastly underdxed. The medical community needs to get in gear and set up a screening as popular as those for breast cancer and prostate cancer and TB.

[BayGirl]

I didn't read the replies, so forgive me if I'm repeating what others have said.

* All hospitals should send out periodically (maybe in PCOS awareness month) a post card to every female patient on their mailing list and the clinic mailing lists a quick summery of what PCOS is, the symptoms and treatments and long term consequences of those being untreated.

* All GPS/Family Docs should screen EVERY female in their care for PCOS and IR and AF problems periodicaly.

* Every parent should get a handout on PCOS from their OB when they have a baby girl and again from their Pedi when their daughter turns 7.

* All GYNs and Obs should screen EVERY woman in their care for PCOS and insulin resistance.

* All Pedis should screen EVERY girl in their care for PCOS or AF and insulin problems in general.

Since ten percent of ladies in the US have PCOS, we are vastly undertaxed. The medical community needs to get in gear and set up a screening as popular as those for breast cancer and prostate cancer and TB.

I agree! That is why PAC printed over 5000 brochures to get out to people. We have given out over 3000 so far. We'd like to print more but we need more money to do so. But that is another story.

Awareness is the key thing.....PAC is doing some behind the scenes things setting up some stuff to get themselves in eth position to acquire more money to get eth pamphlets and do a PSA.

I have been following what gals are saying' here b/c its why PAC exists

[KatCarney]

Another thing I think that is missing is a diagnostic STANDARD for Dx'ing PCOS. At this point, it varies from doctor to doctor...

I would also like to see more women be proactive with seeking treatment and diagnosis. (I know it's hard, but we have to do it...)

IE: If you suspect you have PCOS, and the doctor refuses to test you, ask to have the following written in your records:

"Patient suspects she has Polycystic Ovarian Syndrome, but diagnostic testing is refused due to [fill in the blank]."

It helps to establish a paper trail of what your medical team will and won't do to establish an answer for your problems.

Patients also need to have a good understanding of their PCOS diagnosis. That means ask SPECIFICALLY how the doctor arrived at the diagnosis. They should go over your labs step-by-step, and should give you a CLEAR understanding about possible treatment courses.