Re: Noticing Other Women With PCOS...
From: Renee (anonymous@obgyn.net)
Sun, 27 Jan 2002 12:04:23 -0800
I do the same thing.
For me, it usually comes up in context of food, since I am so carb restricted.
Renee
Dona wrote:
>
> Hi Chris,
> That was a well thought out and well written responce! Thank you.
> One thing that I have done over the past 3 years of dealing with this is
> talk about it as MY health problem. I have informed many woman about
> PCOS just by saying that it is something I am going through.Of course it
> is usually with people I already know or aquaintances.I would find it
> very difficult to walk up to a total stranger and say.."gee I think you
> should see a doctor..you look like you might have a health problem".The
> last person I had told PCOS about to was my hairdresser.She had noticed
> that my skin was looking better and wanted to know what I was doing for
> it...right there was a perfect opertunity to say...well I have PCOS and
> the medication I am taking for it has helped with the excess
> hair,acne,and weight.The rest of my appointment with her was talking
> about PCOS and she is going to ask her Doctor about the possibuility of
> it (She had never heard of it before!).It takes the right timing and
> oppertunity to talk about this with other woman as not to offend
> anyone..and usually if you present it as something you have been
> struggling with...it might just open someones yes that they may have
> this problem too.Just my 2-cents worth.
> Dona =)
>
> >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
>
--
Renee Cordrey, MSPT, MPH, CWS
---
Don't follow in the footsteps of the masters. Seek what they sought.
--Zen saying
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