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Re: A 'PCOS 101' Primer
From: angela (anonymous@obgyn.net)
Sat, 22 Sep 2001 09:55:19 -0500 (CDT)
At Fri, 21 Sep 2001, Sonnet wrote:
>
>I wrote this today to educate a few friends about PCOS and what's going
>on with me, I thought you guys might like to read it. I think I'll give
>a copy to some people in my family as well, like my grandmother who is
>always telling me to eat less! Feel free also, if you like, to take it
>and change some of the bits around to suit your needs.
>
>AS A HUGE DISCLAIMER: This information is stuff I've gathered over the
>past 2 years from various medical journal articles ONLY. A very small
>amount of the information is stuff I have learned from others on this
>board whose medical research abilities I respect. As such, I believe
>all of it to be reliable. Unfortunately, I don't know the names of all
>of the articles from which this information was pulled, and I don't have
>a bibliography. I hope anyone whose work I utilized will realize that I
>will gladly give him or her credit where it is due, and am using their
>information simply to help make our lives easier.
>
>***************************
>Some of you have asked me about PCOS, the disorder I'm always talking
>
>--
>***************************
>about. I know I haven't really taken the time to explain what's going
>on with me. This is a bit of the long version, but I hope it helps you
>to understand better where I am coming from.
>
>PCOS stands for Polycystic Ovarian Syndrome. It was named that because
>people originally thought that ovarian cysts caused it. However, they
>were wrong. The "cysts" are really just half-developed egg follicles on
>the ovary, stopped from developing fully by hormonal problems. Some
>women with PCOS have cysts, some don't.
>
>PCOS is caused by a combination of things. It definitely has a genetic
>component. They've found the chromosome that the gene for PCOS lies on,
>chromosome 19. Some large medical studies are currently underway to
>find the genetic marker for PCOS.
>
>But that's not all of it. It's thought that once you have the gene,
>PCOS is activated by something: a significant stress, an eating
>disorder, or an illness. The body's endocrine system is so complex, so
>inter-related, and so sensitive! Something as simple as a stress can
>throw it off for years.
>
>The basic problem behind PCOS is called insulin resistance. Insulin is
>the hormone produced by your pancreas. It's the hormone that diabetics
>don't produce or don't produce enough of. It has two functions in the
>body. One is to store sugar as fat. The main one is to let sugar from
>your bloodstream into your cells. When you eat something, your body
>breaks it down and your intestines change it into glucose (sugar), which
>is absorbed by your blood. Then it bonds with insulin in a healthy
>person. Cells in your body have what's called a semi-permeable membrane
>(remember reading about this in high school bio??) Glucose can't enter
>cells. But glucose AND insulin together can.
>
>Anyway in someone with insulin resistance, the cells only recognize a
>small amount of the insulin. So in order to keep sugar from building up
>in your blood, the pancreas churns out absurdly high levels of insulin.
>The primary effects of this are fatigue, because your cells are having a
>hard time getting the energy they need; and weight gain. Remember how I
>said one function of insulin is to store glucose as fat? Well imagine if
>you have, say, 10 times the insulin of other people. A LOT of that
>glucose that your body normally would have used for energy is now just
>getting stored, most of it swept out of your bloodstream and into fat
>cells.
>
>Having too much insulin in your bloodstream affects other parts of your
>body as well. It affects your adrenal glands for instance. The
>adrenals start producing other hormones known as androgens. Androgens
>are basically male sex hormones (or what we think of as male, women have
>them too.) These androgens are another basic component of PCOS. They
>cause facial hair to grow, acne, and balding. They also affect the
>ovaries and stop ovulation from occurring. In turn, ovaries that don't
>produce mature eggs produce abnormally high amounts of androgen (and no
>estrogen to balance it.) Then again, high androgen levels lead to
>insulin resistance. The whole thing starts to feed on itself, and you
>can see what a vicious cycle it becomes!
>
>Insulin affects the ovaries themselves in many ways. One way is by
>activating a secondary hormone called Insulin Like Growth Factor,
>ILGF-1. More insulin means more ILGF-1. And ILGF-1 causes ovaries to
>produce more androgens.
>
>Another interesting connection is that of leptin - it's had quite a bit
>of press lately (if you read such things!) as being the hormone produced
>by fat cells. There are leptin receptors in your brain that regulate
>appetite and weight gain. It is thought that in obese people, those
>receptors are damaged, so that the individual cannot regulate their
>weight. The amazing thing is that those same leptin receptors, which
>are so important, are also found in an ovarian structure called the
>corpus luteum. It is the space left behind after an egg matures and
>releases from the ovary. So women who don't ovulate regularly, don't
>have as many leptin receptors.
>
>I know that all was very complicated, but any endocrine disorder is a
>complicated one. Everything in our body that has to do with hormones is
>so intertwined - you can't affect one hormone without all of the rest
>being affected as well! And knowing what's going on in your body helps
>explain why we have the symptoms we do.
>
>The practical side of PCOS is this: You gain weight. You have less
>energy and more fatigue. You have problems caused by excess androgens,
>like facial hair, acne, balding, and weight gain in the tummy. You stop
>ovulating or ovulate very infrequently. Most of the time that means you
>stop menstruating as well, although it is possible to menstruate without
>ovulation when your hormones are so out of control. Because of the
>ovulation problems, you are infertile to a degree. Every cell in your
>body is affected and many other problems start appearing out of nowhere
>and causing problems.
>
>Women who have PCOS feel very betrayed by their own bodies. Can you
>imagine how you'd feel if suddenly your body started doing everything it
>wasn’t supposed to? To make it worse, the onset is usually at puberty,
>in the teenage years, just when you most want to look attractive to
>others. Also making it worse is the fact that many doctors don't know
>about PCOS at all or don't know enough about it. Most women with PCOS -
>and that's estimated to be around 5 - 10% of all women - are never
>diagnosed. If they are, many of those are brushed off with instructions
>to lose weight, or a prescription for birth control pills to cause
>regular menstruation (ovulation or no.)
>
>Women with PCOS feel lonely and different. We're just not like other
>women, like our friends, and we know it. We feel ugly. We don't seem
>to be able to share in a lot of the other circumstances and experiences
>our girlfriends have that bond them together. Sometimes this hurts so
>much we retreat and hide ourselves from everyone. We feel a lot of
>shame for our looks, for our weight, for having to shave every day. This
>is of course made worse not only by the constant societal pressure to
>look a certain way (a way we can't look) but by doctors who tell us the
>weight is all our fault, and if we didn't eat so much and lay around
>being lazy we wouldn't have these other health problems like
>infertility.
>
>The infertility itself is a source of specific pain. It's beyond
>description. You start thinking that because you're so different, your
>body is so wrong; you must not deserve to have children. If you
>married, you feel as though you're a disappointment to your spouse not
>only in your appearance, not only in your fatigue (and thus your
>inability to work or do housework well or go out every night) but also
>in your inability to produce children. You start wondering if you have
>anything to offer anybody. Everyone around you seems to be part of a
>happy family. You're not, and you know it's because of you. It's very,
>very isolating and lonely.
>
>That's why groups like the PCOS Association are so very, very vital.
>Women with PCOS need support, need friends. We need to know other
>people who are going through the same things we are. We need a way to
>educate people we love. We need the support to find proper medical
>treatment and respect from physicians. This disease is just that, a
>disease. It is not our fault. Nothing we did caused PCOS. It just
>happened to us, like cancer or diabetes or arthritis. And we have just
>as much right to be treated and cared for.
>
>If you're reading this, it's because you're someone I love and care
>about. You probably know about PCOS already because I talk about it a
>lot! But I thought maybe this would help you better understand what's
>going on with me. There are treatments available, and I'm pursuing
>them. But so much is still unknown about this, and the treatments are
>often quite new. Sometimes it's hard to convince my doctor to try
>something new to help me feel better.
>
>You can help by reminding me that you love me, no mater what I look like
>or feel like! Even when I'm fat and hairy. Even when I haven't gone out
>with you in weeks because I haven't had the energy. I appreciate that.
>I appreciate when you ask me questions about how I'm feeling, or how new
>medications are working. I appreciate it if you don't keep asking me
>when I'm going to have children. I need your support to keep going and
>keep fighting to be healthy. I really appreciate it if you tell other
>women or other people you know about PCOS. It makes me feel good to
>think that maybe because of my struggle, another woman will find out
>about it and won't have to go through a lot of what I did.
>
>I know that's quite a lot to ask from a friend or a family member.
>Thanks for being willing to help me not only to survive this, but to
>enjoy being who I am. Thanks for wanting to help! Thanks for wanting to
>understand what it is I'm dealing with. I do notice, and it makes me
>thankful that I have people like you in my life.
>
>--
>Email always welcome to: sonnet_fitz@hotmail.com
>
--
angela
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