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Re: Noticing Other Women With PCOS...From: Chris (anonymous@obgyn.net)Sat, 26 Jan 2002 23:11:15 -0600 (CST)
Yikes! I haven't checked the board in awhile and was surprised by the response to this post! Thanks to all who replied with opinions and ideas... I am a very compassionate person and would never dream of randomly selecting a person to whom I could announce that their thinning hair is very noticable. I have been coming to thie board for a long time, and I have not seen many people here who aren't kind people interested in learning about themselves and sharing what they know with others. For some reason, I feel that I need to defend or explain myself, but I am not sure what for. I simply asked for others to voice their opinions on this. Most of the responses I read were great, even (and maybe even especially) from those that think my involvement with this woman's health issues is inappropriate. I really appreciate hearing your thoughts on this! I obviously unsure of the appropriate action in this situation, which is precisely why I posted this question. I particularly appreciate the poster (I am sorry I can't remember her name!) who pointed out that if I am having trepidation about this, it may not be the right thing to do. You are right! But I thought "anon's" post was counter-productive, and really felt saddened by some of the comments in it, as well as its general tone. "Anon" is apparently concerned about me being unkind and disrespectful to this woman, but is in turn being unkind and disrespectful to me, which seems a little hypocritical. I really feel strongly that I need to respond...this is a long post, so feel free to hit your back button now! :) "You aren't a specialist,and you are not in any postition to selectively chose someone and inform them that they may have this syndrome." I am absolutely not a doctor, and have no way of knowing whether this woman has PCOS or not. However, I feel that my own experience with PCOS has prompted me to do more research and studying of it than the general public, and I do feel confident that I have a better handle of the symptoms, physiology, and treatment of PCOS than many people. I feel totally comfortable sharing what I know, and also feel totally comfortable letting others know when I am unsure about facts. At least five doctors misdiagnosed me for years, and it was the "non-specialist" women on this board who finally led me to asking for the right tests and supplementing my doctors' information, proving to me that being a "specialist" isn't necessarily a prerequisite for giving good advice.
>"Just because this woman has thinning hair and is obese and some excess You are absolutely correct! However, PCOS does cause thinning hair, acne, weight problems, and hirsutism in many women because of androgen excess and insulin irregularities. I do not think I am off base for supposing that a woman who has many of the symptoms of an often overlooked syndrome may, in fact, have that syndrome. There is certainly reasonable cause for question in this woman's case.
>"So she has some pitting on her face.???//So do alot of people!" A lot of people do have pitting from acne. However, recent research shows that the vast majority of adult women with persistant acne have underlying androgen abnormalities (often PCOS.) I am happy to provide links to abstracts of these studies at Medline. Just e-mail me or post!
>"This is getting to be ridiculous.
I am sorry you feel this is ridiculous. This board is a place for
people to exchange ideas. If you do not feel a post is worthy of your
reply, maybe you could refrain from replying. I am not sure what part
of my message led you to believe I was going to shopping malls to
diagnose women with PCOS. If you would re-read my original post, you
will find that I happened to see a woman who had many of the symptoms of
PCOS pretty severely. Naturally, I don't think that qualifies as
scouting out women at malls to diagnose. As for the half of the women
in your town, certainly carrying extra weight and having thinning hair
is not always due to PCOS, or any medical condition for that matter.
Some women have thinner hair than others due to genetics, and some women
overeat and put on weight. However, I would suspect that some of the
obese women with thinning hair you refer to may very well have PCOS or
another medical condition. Significant hair loss in females is not
common and can be a sign of several different illnesses, and should
therefore always be checked out by a doctor. And as many of us know,
there can be underlying disorders which make it very difficult for some
women to lose weight. Again, as with women who have significantly
thinning hair, truly obese women should be concerned about their health
and seek professional help if they feel it could benefit them...not only
to look for a possible medical cause of the obesity, but also because of
the long-term health risks associated with obesity.
>
I appreciate your opinion, but really wish it could be presented in a
more positive way. She is not a friend, so I feel uncomfortable
suggesting the disorder in plain language. I do not think that feeling
compassion for a stranger and considering providing them with
information that may be helpful to them is "going around misinforming
people." Accurate information (i.e. PCOS can cause hair loss, acne,
obesity, and hirsutism) is not the same as misinformation.
> This is the most interesting part of this post. I can assume that A.) You do not have PCOS, B.) You do not visit this board often, or C.) All of the above. Nearly ALL of the women I know with PCOS, and most women with PCOS who I have met online, have had to jump through tremendous hoops in order to get an accurate diagnosis of PCOS. Often diagnosis takes years of visits to many different doctors. Blindly assuming that any doctor will take charge of your own health for you is one of the most dangerous things you can do. If I had used this logic when I was told I was "infertile" by several different doctors, I would have never had my daughter. Moreover, with the cost of healthcare in the US, I think it is impractical to assume that everyone "has a doctor." This woman in particular is a part-time employee at a department store, and likely does not have health insurance as a benefit, which can be a deterrent to seeking healthcare. And again, "having a doctor" does not by any means insure all of your medical needs are being addressed!
>"There is nothing worse that being told you have some syndrome. I absolutely agree that having PCOS is awful! It has caused me a lot of pain. I wish someone had informed me earlier that this syndrome existed when I showed the symptoms. If you re-read my original post, you will find that my question was not about whether I should "start to go around and tell people I've noticed some hair loss." I am not sure who you mean by "people" since my message concerned giving one woman information about PCOS. I am also not really sure what you mean by saying that I "should know better than that." As stated above, my post made no reference to going on a campaign to inform all women with thin hair of their appearance, so I do not know what I "should know better than."
>"To leave a mysterious print-out on her desk is obsurd.This can cause
Yes, I agree this could cause conflict. Actually, again, if you would
re-read my post, I stated that I was concerned about that fact. As far
as the body odor, I certainly hope someone would be kind enough to
gently let me know if I was smelly instead of just suffering in silence
when around me! ;)
> I am truly sorry to hear about your cancer and the effects of the chemo. I have never been through that, but I really have sympathy. My sister lost (almost) all of her hair during chemo several years ago. My mother and I used to feel awful when people would give her a second look. But she always said, "Hey, I am bald! People don't see a bald woman at the mall everyday. Maybe their own sister or daughter is going through chemo, or maybe they just want to make sure they aren't seeing things!" She always said that she would rather someone do a double-take and smile warmly and kindly than avert their eyes as they pass her as if she were so hideous that they'd turn to stone if they looked directly at her. People can see each other's bodies and faces, even though sometimes they pretend like they can't. And sometimes, things we notice about other people's physical appearance can be a sign hat something is wrong. This rambling post is meant to let you know that my intention is to help this woman, not hurt her. This is a forum for sharing ideas and opinions, and I really do appreciate every one of your opinions. But opinions are *very* different than judgements, and I hope "anon" will consider this before posting again. I also always find it interesting when someone posts a message so passionately and assertively, with their name as "anonymous." If you feel so strongly that you are right and correct, why not attach your name? My guess is that "anon" may have had a feeling she would feel a little ashamed by having her name attached to such a message. But, "anon", I hope you post as yourself soon! I really do respect your opinion! I just think it may bear a little more weight if presented in a less offensive tone. If you made it all the way through this, all I can say is "WOW!" Thanks for your time and for allowing me to respond! Again, I appreciate all of the input...it has definitely given me a lot to think about! Love, Chris
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