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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