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Re: Noticing Other Women With PCOS...From: Joan (anonymous@obgyn.net)Sun, 27 Jan 2002 01:14:07 -0600 (CST)
At Sat, 26 Jan 2002, Chris wrote: > >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 >>hair,does not mean that she has the syndrome. >>Possibly ,she can have some thyroid abnormality,she can have another >>illness." > >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. >>Some women now are going to go to shopping malls and pick and chose whom >>to diagnose?Half of the women in my town are obese and have thinning >>hair-do I assume that all have this syndrome?" > >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 would say,'keep your nose out of it'. >>If it were a friend or a collegue,then by all means,it wouldn't hurt to >>suggest the disorder,but we cannot go around and misinform people." > >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. >> >>"I am certain that this woman has a doctor,and if she looks like the >>poster child for PCOS,then I am certain that her doctor is already >>looking at the causes." > >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. >>Women with hairloss,obesity,acne,hirtuism-have enough low self esteem. >>To start to go around and tell people that "you noticed that she has >>some hair loss",can be devestating. >>You should know better than that." > >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 >>alot of conflict in the office.It is like getting a note saying you have >>body odour in a nice way." > >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 found this message very disturbing-as when I had cancer,the last thing >>I wanted people to ask me about,was my hairloss. >>Just leave her be please!" > >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 All I wish to post is this: Well said!!
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