ANN was Re: New to PCOS - reply to Jodi
From: jodi (anonymous@obgyn.net)
Tue, 28 May 2002 08:47:28 -0500 (CDT)
Ahhh... I didn't mean to insult YOU... the place birth defects wee
mentioned was one of the links you gave. The first one... it said PCOS
is a birth defect... I was quite aware that you are new, you said so in
your post! :-)
And I don't find your writing terrible at all. I was not saying your
post was bad - I was saying disregard the first article you gave a linke
to! Sorry for the confusion. I just feel there is some bad information
in that link and if you're new to PCOS it is NOT the place to begin
reading... the internet can be a great source of info but unfortunately
anyone can post anything on it and sometimes you have to take what you
read with a grain of salt.
That article mentioned nothing about excess facial/body hair... I am
not saying YOU don't have excess hair... but any article on PCOS that
doesn't mention hair isn't worth reading because the author clearly
doesn't know much about PCOS.
I'm sorry... I didn't mean to put you down in any way. I can see how
my words were misunderstood... I said "The first article you posted"
when I should have said "The first link you posted..."
sorry for the confusion. clearly, I'm not perfect either! :-) I hope
you find lots of help and information here!
- jodi
At Fri, 24 May 2002, Ann wrote:
>
> Jodi
>
>That was my first message I posted here. I never mentioned what you
>said in your post about Birth defects or anything like that . I did see
>another Ann posting messages here as well. I'm not saying this to be
>mean , but i've only written here once . Yes my writing is probably
>terriable but i'm not perfect !
>
>To answer the questions I seen .....
>
>My doctor had me taking the birth control Ortho - Cyclen which gave me
>headaches so he had me stop taking them. I'm not sure what he's going
>to try next until I go back in June. And I do get help with my
>post-traumatic stress disorder as well. I did mention my in 1st message
>about the excess hair on my face , I said no matter what I try to get
>rid of it nothing helps.
>
>No I do not know what to do since being diagnosed with PCOS , I've only
>known about this for a few months when my doctor diagnosed me , which he
>will probably give me more information , do's & dont's etc. on my next
>appointment.
>
>Anyway Thanks for the info about the diets & etc. I'll give it a try !
>
>Thanks again , Ann
>
>At Fri, 24 May 2002, jodi wrote:
>>
>>Whoa... first I want to say PCOS must be the in thing this summer, we
>>have so many "just-diagnoseds" on this board all of a sudden...
>>
>>Second, I want to say that yes there IS a point to losing weight... it
>>CAN be hard for us (it usually IS hard for us) but there ARE ways to do
>>it and there ARE benefits to doing it... For many of us, the only
>>thing(s) that help with weight loss are Metformin and/or a PCOS friendly
>>diet. By PCOS friendly diet, I cannot say one diet specifically... Some
>>women here are serious low carbers. Some women here follow more of a
>>modified approach, still eating a good portion of carbs a day BUT
>>choosing those carbs sensibly. Read up on the "glycemic index." This is
>>basically a rating given to a food telling you how much your blood sugar
>>will rise if you ingest it. In this school of thought, carbs are not
>>evil - but certain carby foods are worse/better for you than others,
>>depending on the wholeness of their grain and what else has been added
>>to them. Fat, fiber, and protein slow the relsease of blood sugar into
>>your body, making foods with fiber, fat or protein lower on the glycemic
>>index scale than carbs without them. For some examples... Whole grain
>>rye has a very low GI rating. Many whole grains/starches are OK for
>>you. Beans are fine. Certain grains/starches such as potatoes and corn
>>are not so good for you. A glass of 2% milk has a lower GI rating than
>>a glass of skim. And so on. I highly reccomend SugarBusters to get a
>>good idea of this. I will admit that I personally bought SugarBusters
>>and later gave it to Goodwill because, really, the info in it is QUITE
>>simple and easy to hold on to, not something you have to refer to over
>>and over. Unfortunately this book seems to yet be unavailable in
>>softcover, and I really think the amount of info contained within is not
>>worth the hardcover price... So see if you can find it used or at the
>>library. It is a GREAT overview. Just has some shortcomings from a
>>"This was good information but not worth the price" standpoint... You
>>might also try the Zone or the Insulin Resistance Diet books... read a
>>LOT. Pick and choose what works for you. The best diet in the world
>>doesn't amount to a hill of beans if you personally can't stay on it so
>>read read read and tailor to fit.
>>
>>Try to find a doc who will look in to prescribing metformin. It really
>>helps a lot with the weight.
>>
>>Exercise!
>>
>>Even if you DON'T lose lots of weight, the improvements in insulin
>>levels WILL help you. You can be THIN and have PCOS symptoms. You can
>>be chubby and managing those symptoms.
>>
>>Try to find a doc who will address the depression! I am working on this
>>myself... I have had depression off and on of varying severity since I
>>was 12 or 13. I am now 25... and realise how much my depression has
>>affected my life and my health, largely via my PCOS... I have been
>>severely depressed these past two weeks and I understand all too well
>>that no energy feeling! I was walking 25-30 miles a week and doing
>>aerobics 2-3 times... eating well... I felt wonderful... but then
>>BAM, one afternoon, my mood just went down, and has yet to come up. I'm
>>now sleeping late every day and taking the bus to and from work and
>>eating disgusting amounts of junk food. I feel like a fat slug. But I
>>know eventually this mood will lift... it always does... but I know it
>>will come back, so I am admitting finally that I have to deal with it...
>>Just something to think about. Depression has a nasty way of
>>undermining the best diet and exercise intentions...
>>
>>Women with PCOS CAN lose weight. We just need to try a different
>>approach than joe-average consumer. Losing weight WILL help you.
>>
>>As for BCPs... I've been going on and on about them a lot lately. They
>>are offered as "treatment" to so many women with PCOS by doctors who do
>>not understand the condition...
>>
>>BCPs provide SYMPTOM RELIEF. They do not really "work" on the PCOS at
>>all. Basically, they put your ovaries to sleep, which reduces both cyst
>>formation and the horrendous outpouring of ovarian hormones. This
>>reduces your hormonal symptoms, such as acne and excess hair. (Better
>>luck on the acne than the hair, to be honest... though some women DO
>>have success with the hair problem with BCPs...) By going off the pill
>>every 3 weeks - this is essentially what you are doing when you take the
>>dummy pills during the 4th week, or when you don't take them, which I
>>don't, as I consider them an insult to a woman's intelligence - you have
>>a regular withdrawal bleed, and this reduces your risk of endometrial
>>cancer.
>>
>>I'm sure all of the above sound pretty good, right?
>>
>>Unfortunately, there are always some drawbacks.
>>
>>First, BCPs don't fix anything. They cover up the problem. So while
>>they do provide symptom relief, they don't fix anything long-term, and
>>all your problems will come back when you stop taking the BCPs. Now, in
>>and of itself, this isn't a problem. But i think a LOT of women do not
>>understand this fact and I think a lot of doctors need to do a better
>>job of explaining things. (They also make it hard to tell what effect
>>the insulin meds or diet are having on your cycles, skin, etc...)
>>
>>Second, BCPs do nothing - obviously! - to correct the infertility issues
>>we have! It is sometimes possible, though, that after a year some time
>>on the pill, hormone levels will benormalized long enough that ovulation
>>will occur for a short while after stopping the pill, allowing a window
>>of oppurtunity for getting preg before everything goes to the dogs
>>again.
>>
>>Third, as you are well aware, BCPs have SIDE EFFECTS. This is why I do
>>not take the pill. These can range from the strange and mildly annoying
>>- such as contact lenses not feeling right for the first month or two -
>>to the severe and debilitating - such as migraines or severe depression.
>>Weight gain is another biggie. Some argue that the pill further worsens
>>insulin resistance, thus resulting in weight gain... and thus POSSIBLY
>>worsening PCOS. If taken with an insulin med, this effect is probably
>>negligable - some even argue it's already negligable, given what's
>>already going on in your body - but you should be aware of it.
>>
>>There is nothing wrong with taking the pill if you want symptom relief,
>>find a pill that works for you without side effects, and understand that
>>BCPs are not a cure for PCOS.
>>
>>Which pill were you on? I found ortho-novum 7/7/7 gave me severe
>>migraines - I actually thought I had a brain tumor because I had never
>>had a migraine in my life and all of a sudden I find myself with a
>>throbbing headache and blind spots in my vision - so I quickly got off
>>of THAT. I know know that tri-phasic pills - pills that have different
>>doses of hormones throughout the pack - are horrible for PCOS. Go for a
>>monophasic pill, if you want to use BCPs.
>>
>>Insulin meds and controlling your diet do not provide symptom relief
>>quite as fast as BCPs... but they do address the root of the problem,
>>insulin resistance.
>>
>>This is getting long, so I won't get into this now. Feel free to ask
>>questions.
>>
>>The next thing I want to say is I did NOT like the first article you
>>posted... I'm not saying this to make you feel bad, I'm saying this
>>because I think you should pretend you never read it. I do not think
>>PCOS should be considered a "birth defect." I do not think it is
>>accurate to say that the uterine lining builds up and "hardens." (???)
>>Thickens, yes... but if it HARDENED it would never come out! I have
>>never heard of a hump on the back or adrenal hyperplasia being
>>complications of PCOS. The hump on the back is something else...
>>Cushings? Adrenal hyperplasia CAN be seen in women with PCOS... I
>>believe it presents similar symptoms to PCOS... but I am not aware of
>>either of these things being CAUSED by PCOS. I really do not think this
>>woman did her research well at all. Delayed onset of periods is NOT a
>>sign of PCOS. Women with PCOS can get their first period at any time. I
>>got mine early - a few weeks before I turned 11. Some women here didn't
>>get it till they turned 18. Some got it at about the "normal" time,
>>12-13 or so. I do not feel PCOS should be referred to as a "rare
>>disorder..." Statistically, it seems to not affect THAT many women...
>>but think about how many women have yet to be diagnosed. Think about
>>how many women you personally know that show signs of PCOS or have
>>really been diagnosed with it. I'm talking real life, not on line. I
>>personally know four who were diagnosed and 4 or 5 I suspect have it.
>>Unless we have something in the water around here, I'd say this is not
>>an atypical experience!
>>
>>Seriously. I feel this is a terrible article and you should pretend you
>>didn't read it. She doesn't even mention excess hair in it!!!!! You
>>cannot write about PCOS and leave out excess hair. To me that would be
>>like writing about September 11th and not mentioning the twin towers.
>>The third article you posted is a great one. If you'd like some
>>off-line studying of this, get Samuel Thatcher's book "PCOS: The Hidden
>>Epidemic."
>>
>>Lastly - if you want a child, go for it. I don't think that that
>>article saying "most women need infertility treatments" was quite on the
>>ball. Yes, a lot of women with PCOS need fertility help. But a LOT of
>>women don't even KNOW they have PCOS, have infrequent periods, and get
>>pregnant. A LOT of women DO know they have PCOS, and are told they will
>>never have a child, and then... they DO. A LOT of women have PCOS and
>>find that metformin or low carb dieting or both regulate their periods
>>and they get pregnant, no fertility help. I think that author should
>>have said "Many" instead of most. Subtle change, but oh so meaningful.
>>So if you truly want a child, do not let this stop you from trying. With
>>metformin there is hope. With metformin PLUS clomid, if you need it,
>>there is even MORE hope.
>>
>>I don't know... i can't express how much I dislike that article. It
>>provides a bit of truth but with a slant I just don't like. I can't
>>help but feel the women who wrote it does not have PCOS, is horrified at
>>what an awful disordfer it is, and is gleeful to think SHE doesn't have
>>to suffer with it... and it just making it out to be as nasty and
>>unmanageable as she possibly can.
>>
>>May PCOS smite her! :-)
>>
>>- jodi
>>
>>At Fri, 24 May 2002, Ann wrote:
>>>
>>>Hi my name is Ann i'm 34 years old & I was diagnosed this PCOS this
>>>year. My medical history since the age of 16 started out to be missed
>>>periods here & there , the obgyn would put me on medicine to correct it
>>>which helped for several years . Then about 9 years ago my doctor found
>>>a non cancerous knot on my thyroid so I had a thyroidectomy to keep the
>>>growth from returning , I now take synthroid to replace the thyroid
>>>which made me gain weight. About 4 years ago I started seeing a
>>>therapist because of something that happened to me when I was a child
>>>causing severe depression so I was diagnosed with post-traumatic stress
>>>disorder . In 2001 my periods completely stopped for a year , the obgyn
>>>I had been seeing for years never wanted to look further as to whats
>>>wrong with me so I had my family doctor refer me to another obgyn who
>>>diagnosed me with PCOS , he put me on birth control to see if that
>>>helped , it did work but I couldn't tollerate the constant headaches
>>>everyday for a month & the doctor took me off them . On my next visit
>>>he's going to try me on another medicine. Since last year i've been
>>>dealing with the adult acne & hairs growing on my chin which is very
>>>depressing trying to get rid of or hide , I have found that nothing I
>>>try gets rid of the hair , now I just clip them with scissors. Last
>>>week I was feeling ill so my family doctor ordered blood work because he
>>>thinks I now have high blood pressure or diabetes , maybe both. My
>>>problem is I don't know the first thing to do since diagnosed with PCOS
>>>, like if I need to diet etc. because I was reading on a PCOS site & it
>>>said no matter how much you try to lose weight you won't , so is there
>>>any need to ?..... Everyday I struggle to get out of bed when I do
>>>sleep , my husband & I have tried walking for exercise which didn't last
>>>long because I got to where I didn't feel up to it , i'm still gaining
>>>weight as well . I stay depressed , I feel bad for my husband because I
>>>feel like he's not getting the attention that he deserves from me. We've
>>>never tried to have children but have never been careful not to get
>>>pregnant , if it happened it happened , now that I have PCOS I don't
>>>think i'd want to try to have children because it would only get us both
>>>depressed & let down if it didn't happen . I feel for everyone who has
>>>to deal with this .I would appreciate any suggestions from you who has
>>>PCOS . Here's some PCOS web sites i'd like to share with you if you
>>>haven't already seen them. Thanks , Ann
>>>
>>>http://nyny.essortment.com/informationonp_rikl.htm
>>>http://www.resolve.org/
>>>http://www.inciid.org/faq/pcos.html
>>>http://blues.fd1.uc.edu/~gartsips/polycyst.htm
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