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Re: Noticing Other Women With PCOS...I did it!
From: Koolaide (anonymous@obgyn.net)
Mon, 28 Jan 2002 10:28:18 -0600 (CST)
Hey Chris...I'm so so so glad that things went well for you and this
lady. I totally understand that it is hard not knowing and (lol)
'thinking you are a freak of nature). I sure was there. Thanks for the
big heart, don't ever lose it.
At Mon, 28 Jan 2002, Chris wrote:
>
>Hi-
>
>I was amazed to read Dona and Renees messages this morning...I finally
>talked to the lady I had mentioned about PCOS, and I brought it up in
>the exact way you both told me about, although I hadn't read your
>messages before! I bought some lotion for my face at the store where she
>works, and I stopped at her counter on my way out (which I usually do.)
>We chatted for awhile, and I held up my little bag and told her how
>excited I was that I actually had to buy lotion for my face, and went on
>to tell her about how I was so broken out, but I started on this
>medicine and my face has really cleared up. I was going to just leave
>it at that, but she started DRILLING me with questions!!! I just
>answered her questions, trying hard not to go into too much detail
>without her asking, and just like you guys said, I really kept it all
>about me and told her about my experiences. Not one time did her
>appearance ever come up in the conversation. I told her that I am not
>an expert, but I knew about a couple of good websites, but she said she
>doesn't have a computer and so I told her if she was interested I could
>bring her some info...she got so excited, thanked me a million times,
>and said that would be great! I walked calmly out of the store, but once
>I hit the parking lot and knew she couldn't see me I literally skipped
>to my car! I could not be happier! I remember the amazing feeling I had
>when I discovered there was such a thing as PCOS and I could finally put
>a name on what I was experiencing...just knowing PCOS existed, and that
>I was not some freak of nature gave me such a great feeling of
>excitement and hope, long before I ever even got treatment. I am so
>happy that maybe this wonderful lady is feeling that same kind of hope
>and anticipation right now! Thanks all of you so much!
>
>Love, Christina
>
>At Sun, 27 Jan 2002, Renee wrote:
>>
>>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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