Re: A 'PCOS 101' Primer
From: Chris (anonymous@obgyn.net)
Mon, 1 Oct 2001 20:38:44 -0500 (CDT)
What a great overview! Thank you!
-Chris
At Mon, 1 Oct 2001, Crystal wrote:
>
>Sonnet,
>Thank you for writing this! You are wonderful!! My family kind of blew
>this disease off when I told them I had it, so now I can explain to them
>how serious this is and how it is affecting me.
>
>Thanks so much,
>Crystal
>
>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
>>
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