Re: New to PCOS - reply to Jodi
From: Ann (anonymous@obgyn.net)
Fri, 24 May 2002 23:17:57 -0500 (CDT)
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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