Re: New - lot of questions
From: Stef (anonymous@obgyn.net)
Mon, 12 Nov 2001 16:53:51 -0600 (CST)
Hello Jodi,
thank you very much for your long answer. No, My head is not spinning
and I appreciate every little bit of information I can get at the
moment. The more the better.
Anyway, I think I should also add some more info/history about myself. I
am a German and I just moved to the USA in Feb. 2001, so it is
difficult for me to find a doctor at all. I found at least a medical
group that has gyns and encs, so I thought I would start by going there.
As I perhaps said before, I only stumbled even over the terminology of
PCOS at the end of last week and the quiz at obgyn.net. So I never even
knew that this existed. I made emmidiatly an appointment with this gyn.
I thought that I have to start somewhere.
However, I have had the symptoms since I first had my period (well, the
interval between the first and the second was about 1 year, after that
once a while. The ones I had were very strong). I did go to a gyn as a
teenager but was told the same as many posters of this forum have
stated: that I should worry and everything would get normal when I would
be somewhere betwee 18 and 20.
Later, with my first bf, I went on a bcp. Until then I was very slim.
But this changed when I started to take it. I had the feeling that I
always gained weight in the time I didn't need to take it.
A few years later I stopped taking the pill. Then I gained a lot of
weight. Then, I went to another doc, who also treated this with a bcp,
this time with a special one, that should ceep my periods under control
and he told me to lose weight. He said that would be the reason for my
problems (I didn't believe him, as I had the same problems also when I
was slim...)
The strange things were, that PCOS should have been ditected much
earlier. When I was about 15, my appenix was removed. After that my
mother was told that my ovary was bigger than normal and that there
might be a cyst. This is why I went to a gyn for the first time.
However, he didn't find anything. the cyst seemed to be gone.
With the last gyn I had in Germany, he told me also that my ovaries were
bigger than normal. But noone ever mentioned anything like PCOS to me.
Well, anyway, the last bcp did help and I did lose some weight, but
because I wasn't told anything, I started to take the pill iregularly
and then stoped it. I wanted to stop it for one cicle and then start
again. Well, I am still waiting for this period, after nearly 2
years...
Also, I didn't only gian back the weight I had lost, I gained even a lot
more...
I am married happily now. Needless to say that I can't get pregnant -
We don't use contraceptives and I don't have any children.
Well, enough whining for one day.... You asked me if there were any
similar problems in my family, I can only answer this with yes. My
mother had similar problems like I do. She only had me because of
fertility drugs (a big achievement for that time). By the way I should
perhaps say - I am 28...
Regarding the carb diets or something similar, I have ordered some books
about it. I hope it will help.
Again thank you for your help (see, my post is as long now as yours).
Stefanie
At Mon, 12 Nov 2001, jodi wrote:
>
>Hello Stefanie
>
>Welcome to the group. If you stick around you should soon find your
>head spinning from the wealth of information available here. :-) You
>need not apologize for asking too many question. However, I will
>apologize in advance for possibly giving you too many answers.
>
>Your gyn. might or might not be a good place to start with this
>problem. My personal experience has been that gynocologists are idiots
>when it comes to PCOS. They look at PCOS from the period angle, or lack
>of period angle, and treat the easiest way they know how to treat
>irregular periods - birth control pills. There are both pros and cons
>to treating PCOS with birth control pills. The pros include a lowering
>of the LH hormone, a lowering of testosterone, a reduction of cysts
>formation, less ovarian activity and less risk of ovarian cancer,an
>improvement in skin conditions (acne is most easily corrected with BCPs,
>some women have success treating the excess hair problem with BCPs), and
>regular shedding of the uterine lining, which reduces the risk of
>endometrial cancer. (On BCPs you do not have periods, technically...
>you have withdrawl bleeding. Saying "period" is easier, and the health
>benefit of the bleed is for all intents and purposes the same.)
>
>Basically, BCPs put the ovaries into hibernation. For a long time, this
>was the only treatment available for PCOS. The reason we have cysts on
>our ovaries with PCOS is because the ovulatory process is flawed - the
>egg sort of starts to ripen, but doesn't quite finish the job, and
>instead of popping out from the ovary it simpky forms a cyst. These
>cysts build up over time, further inhibiting ovulation and thickening
>the wall of the ovary itself. As I understand it, either this
>thickening itself or the failed ovulatory process leads to a sort of
>ovarian irritation/scarring, and this is why the increased risk of
>ovarian cancer...
>
>ANYWAY, the above are all the good points of BCPs. The bad points are,
>well, BCPs don't do anything to fix the real cause of PCOS, they merely
>make it better for a little well. I liken it to treating a brain tumor
>with tylenol... you are only doing away with the pain. The tumor is
>still there, wreaking havoc...
>
>In addition to BCPs being a temporary fix, they are thought to worsen
>insulin resistance, which is thought to be the real cause of PCOS. PCOS
>is not a gynocological disorder - it is an endocrine disorder. Ob/gyns
>tend to treat the gynecological aspects of it, but that's all. So, you
>see, it is arguable that BCPs not only do not fix the underlying
>problem... they might even make it worse! Many women report a worsening
>or even initial appearance of symptoms after use of the pill. In all
>liklihood, the pill itself does not cause PCOS - these women probably
>had an underlying predisposition to develop the disorder. Some women
>first develop signs of PCOS after a pregnancy. Pregnancy is also
>something that can worsen insulin resisitance/glucose tolerance... think
>of gestational diabetes.
>
>So, the pill has good and bad points. Better to know these points
>before you go on it, if the doc reccomends it. (I was put on the pill
>at age 16 or 17 by a ob/gyn to "regulate" my periods, and I spent the
>next 4 years going on and off the pill to see if my periods had in fact
>been regulated yet!!! i did not know that the pill only fixes things
>while you take the pill...)
>
>So, as to how you ask your doctor about this... well, that's a tough
>one. The best advice is to read up on this as much as you can before
>you go. Push for blood work for insulin levels, sugar levels,
>testosterone (total and free), LH and FSH levels... an LH:FSH ration
>that is greater than 3 is indicative of PCOS. Samuel Thatcher's book
>PCOS the Hidden Epidemic is probab;y a great place to start to
>understand which tests to push for and why. Buy this book. Read this
>book. Highlight this book and dog-ear the pages. Take this book to the
>doctor!
>
>There are lots of questions in the back of this book you might want to
>asnwer so you can give your doc info you might not have thought was
>important before. really, buy this book!
>
>Your doctor might order a sonogram of your ovaries. This is a good way
>to check what's going on in there but ovarian cysts are not the end-all
>and be-all of a PCOS diagnosis. Some women have cysts, some do not.
>PCOS is called a syndrome because it is a weird collection of weird
>symptoms and not all of us have all the symptoms. I have excess hair
>which you would never notice from a speeding train and irregular
>periods. I have always been "slightly overweight" though since going on
>met I am now pretty normal weight wise. I have some pimples on my
>forehead. Some cysters have no hair problems to speak of but terrible
>acne. Some women have regular periods and full beards. Some cysters
>are 300 pounds and got that way on a low fat diet. It goes on and on...
>
>I would suggest telling your doctor what problems you have, and see what
>he/she says. If PCOS is not mentioned, then say you wonder if you could
>have it, say why, bring out the stuff in Thatcher's book.
>
>You might find your doc is willing to listen. You might find he/she
>will prescribe BCPs and pat you on the head. You might need to find a
>good endocrinologist... They are treating PCOS with insulin sensitizers
>these days, which is thought to get to the root of the problem.
>
>That sort of leads to your diet question. As I said, PCOS is thought to
>stem from insulin resistance. What this means if your body is not able
>to use its own insulin effectively, so the pancreas pumps out more and
>more to compensate. This excess insulin leads to the weight gain and
>hormonal problems of PCOS. (Or that is the school of thought now...) It
>also puts us at a higher risk of diabtetes and certain other medical
>problems... PCOS is NOT a cosmetic problem! Ok, it is a cosmetic
>problem, but it is not ONLY a cosmetic problem... The insulin
>resistance component is thought to be genetic. Look at your family
>members. Anyone overweight? Any bald men who began balding young? Any
>fertility problems in the womenfolk?
>
>There are a few ways to treat this insulin problem. One is insulin
>medications. Some of these work by inhibiting how much glucose is
>released into the blood stream after a meal. This in turn inhibits
>insulin release. This is how metformin works, and this may be why a lot
>of women report gastric distubance on met. At least, this is how
>Thatcher describes it! Since met limits how much blood sugar can be
>released, if you eat more than that, your body has to do SOMETHING with
>the extra.... and what it does with the extra is poop it out. Sorry to
>be gross, heh. This explains why women who take met and eat a high carb
>meal end up spending the night on the toilet. This doesn't quite
>explain why some women have more gastric problems when they take met and
>low carb... so i don't really know how true this is. For what it's
>worth, I have not had any gastric problems with the Met other than when
>I've eaten macaroni and cheese. I don't know why, this is the one food
>I can't eat now. Unfortunately, every now and then I get a craving for
>it and forget that i can't eat it... I made this mistake just last
>night. Bottom line, do not let fears of gastric distubances keep you
>from trying met if it is offered!
>
>Some of these meds work by directly inhibiting how much insulin is
>released into the body. Actos and Avandia work that way. I have no
>experience with either of these, met is the most popular insulin med for
>PCOS at this point.
>
>Another way to lower insulin levels is through diet. Some women choose
>to low-carb. By limiting carb intake, insulin production is lowered.
>Some women choose to eat foods with a low glycemic index. Low glycemic
>index foods do not raise blood sugars much, and this also keeps insulin
>down. For a good read on this, try Sugar Busters.
>
>Oh! Insulin meds and/or low carbing might be a good way around the
>worsening of insulin resistance that BCPs cause. If you decide to go
>the BCP route, it's something to consider.
>
>Which diet and which meds you use is highly personal... what works for
>one might not work for all... what works for me might not work for
>you... what works for you might make me sick!
>
>Some women try treating PCOS with herbs... I don't have much experience
>here. i took vitex for two days, did some reading, decided it was a bad
>idea. A lot of women have success with it... but I was uncomfortable
>with the idea.
>
>Exercise is good for us no matter which treatment route you try to take.
>
>As for how to tell your family... well, i guess it depends on why you
>feel they should know. I have told my mother and my brother about my
>PCOS, but I have not told my father. I feel I SHOULD tell my father, as
>the IR is undoubtably passed on from him... but I am not sure how to
>broach the subject. i think I might broach it with my brother, who
>really needs to lose a few pounds... and see if my father learns by
>example. (My brother lives with my father... ) I don't know why but I
>am uncomfortable talking about this with my father. I have also told my
>boyfriend because of the reproductive issues...
>
>ANYWAY I will shut up now. Hope some of this was helpful. Good luck
>with your doctor and getting this under control!
>
>- jodi
>
>At Mon, 12 Nov 2001, Stef wrote:
>>
>>Hi,
>>
>>I am new to this forum and to the subject. I have never been diagnosed
>>with PCOS, and I more or less stumbled over this forum last week. After
>>reading a lot of messages and informing myself about it, I can say that
>>I have most of the symptoms.
>>Well, after reading this, I somehow new that I have PCOS and I made an
>>appointment with an Gyn.(I don't even know, if this is the right person
>>to go to). My question now is, how do I ask the doctor about this? Do I
>>ask him or do I just tell them the problems I have.
>>Also, how did you inform and explain this to your families?
>>I read also something about diets. How important is this and what
>>should I avoid?
>>
>>I hope these are not to many questions at once.
>>Thanks, Stefanie
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