My Battle with Polycystic Ovarian Syndrome (PCOS) 
or, How the Internet Saved my Life

I have probably had PCOS since I hit puberty, if not before.  I always had a little weight trouble, mostly around my abdomen.  I have always been addicted to breads and sweets:  for a snack I would get a piece of bread, and usually go back for 1 or 2 more before I felt satisfied.  In the spring I used to sneak some of the sugar-water my grandmother would make for her hummingbird feeders.  In the summers when I was a teenager, I worked in our family snow-ball (read "snow-cones" if you're not from south Louisiana!) stand, and ate snow-balls all day long.  And when Christmas or Thanksgiving rolled around, I would go back for 2nds of the meat, but 5ths 6ths and 7ths for the various rolls and breads.  

My periods were never regular.  The first one came when I was 11.  The second one came a year and a half later. Eventually they started coming every 2 or 3 or 4 months, but there was no predictable pattern to them.  My mother said it would take a while for them to get straightened out, so I waited.  And waited.  Eventually I got used to them being unpredictable, decided I was lucky that I didn't have to deal with that mess as often as a lot of my friends did, and gave it no further thought.  I usually could tell about 6-12 hours before one was going to start, so luckily after the second one I never had any "accidents."  

Ever since I was 14 I've had some excess hair growth on my abdomen, from my belly button all the way down.  After puberty I always sweated a lot, too.  When people said "women don't sweat," I thought they were just full of baloney.  After all, I lived in south Louisiana.  It is very hot and very humid there.  I never realized that something was wrong with me for sweating so much like I did.  My skin was always very oily, too.  

During my senior year of high school I noticed a chin hair.  I plucked it out, and much to my horror it kept growing back.  I remember thinking how I could deal with it as long as it was just the one, but how I would just DIE if I became one of "those hairy women."  (How ironic that seems now!)  

Those were the only visible PCOS symptoms I had until I was in college.  

This is what I looked like when I graduated from high school (I'm on the right).  I probably weighed all of 120 lbs.  And I though I was SOOO fat!

Roomie #3 & Roomie #2 before the 1992
LSMSA "Senior Recognition Ceremony"

In college I my changed eating habits.  I thought it was for the better. I cut way down on fat, and ate a lot of bread, pasta, fruit, etc.  It turns out that was about the worst thing I could have done to myself.  I gained an average of a pound a month during the 3 years I was in college.  Weight problems are very prevalent on my mother's side of the family, and I just assumed that my genes were finally catching up with me.  Since I was eating "healthy" (i.e. low-fat) I never connected my eating habits with my weight gain.  

This is what I looked like just under a year later.  I probably weighed 135 lbs.  And I though I was SOOO fat!

Jeff and I enjoy my Granny's front porch swing - Easter 1993.

Some time during my second year of college, my face also started breaking out - a lot more than it had when I was a teenager.  I started noticing a few more chin hairs, too, and a couple of dark curly hairs where sideburns grow on men.  Within the next year, the hair on my head started falling out.  I'd mostly notice it in the shower, when I'd wash my hair and come away with almost a handful every time.  But eventually my ponytail was about half its previous thickness, and you could see a good bit of my scalp no matter how I fixed my hair.   I felt very ugly and very unlucky.  

My periods started getting fewer and farther between - I'd maybe get 3 or 4 a year instead of 6 or 7 - and they were heavier and longer-lasting when they did come.  I figured it was all the stress of being in college and trying to graduate early with a double major, holding down 3 jobs, and still somewhere in there finding time to hang out with my friends (usually at the expense of a good night's sleep!).  

I knew there were several things wrong with me, but, except for the irregular periods, I though they were all just cosmetic, genetic flaws.  I was right about that, but I never in a million years would I have dreamed they were all related, or that they were related to what I was eating.

About that time, I also started noticing that I was having memory trouble.  When I was younger I had a great memory. I could watch a TV show one night (especially Moonlighting!), and repeat it almost verbatim the next day at school to a friend who had missed it.  Yet during college I had trouble remembering even the simplest things, like whether someone had answered "yes" or "no" to a question I had asked them 5 minutes earlier.  I attributed it to getting older (I know, not likely - I was all of 20!) and to overstuffing my brain with all the cool but ultimately useless things I was learning in all my classes.

During my last year of college I was on birth control pills (Triphasil) for about 9 months.  As touted, they made my periods regular.  (Of course!  They're artificial hormones!  What do you expect?!)  But I gained weight noticeably on them, and my bra size went up by 3 cup sizes!  (And in case you didn't notice in the pictures up there, that was NOT something I needed!  Or wanted!)  The abnormal hair growth problem got like 200% worse after I started the pill.  I also had mood swings that were way beyond anything I'd ever experienced before.  I got so frustrated with it all that I just stopped taking them.  That was in April.  I spent the whole summer I was going to get married wondering if, nightmare of all nightmares, my period was going to show up right before my wedding. (It didn't; it waited until a week afterwards.)  And unfortunately all the other bad effects I experienced, the reasons I STOPPED taking the pill in the first place, didn't go away.  My boobs were still WAY too big.  My face was still way hairy. The hair on my head was still thin.  I was still fat fat fat.  And I was still very moody; it was like I had PMS+ 24/7.   

I got married in July, 2 months after I graduated from college.  My wedding day should have been the happiest day of my life, and in most ways it was, except that instead of feeling beautiful I felt like a big fat white whale in my dress, which was they style I'd always wanted but about 10 sizes bigger than I'd ever imagined I'd wear.  And I knew that although my face looked hair-free because of the waxing I'd had two days before, in another week or two I'd start looking like a hairy gorilla again.  

When I got married I weighed about 165 lbs.  And I though I was SOOO fat!

You can see how shiny my face is here.  The sad thing is this 
picture was taken RIGHT AFTER they'd used some of those 
oil-absorbing papers on me!

All my life I never knew for sure what I wanted to do, except for two things:  get married and have babies.  Now one was out of the way, and it was time to start working on the other.  I assumed since my periods were whacked it was gonna be a little harder for me to get pregnant than your average woman.  So I went to the gynecologist (it was time for my annual checkup anyway) and asked her about it.  She checked my hormone levels and said they looked normal, gave me some Basal Body Temperature charts, and told me to come back in a year if I wasn't pregnant yet.

And I wasn't.  But by the time that year was up, I was just starting graduate school, which as you know is no cake walk to begin with, plus I was commuting 55 miles each way, every day.  Jeff and I decided it was probably best not to actively pursue help from the doctor just yet, with my schedule being so busy and all.  We still hoped it would happen, and we certainly didn't try to prevent it.

But it never did happen.  

I tried to chart my basal body temperature for a while, but I had 2 main problems with it.  First, nobody ever made a chart long enough for one of my cycles.  The longest one I saw was 45 days, and that was about half the length of one of my "cycles." And second, where they say you're supposed to have one temperature spike in your cycle (right after ovulation), I would have 10 or 15.  It really looked more like an EKG than a BBT!  (By the way, that is the classic pattern of an anovulatory cycle, but at the time nobody I talked to seemed to know that, and no books I read ever mentioned it!)

By the time I was in graduate school, the memory problems had turned into complete "brain fog."  I was in these graduate Math classes, doing all this hard work and learning all this hard stuff, and yet at the end of a week couldn't really remember anything of what I had learned during that week.  My longest concentration span was about 20 minutes.  Then I'd have to zone out for at least a minute or two before I could tune back in.  Every time I had a test, I had to cram not only for it, but also for anything that we had covered before that was likely to be used to do the new stuff, because I honestly didn't remember it.  I felt stupid.  Literally stupid.  Completely stupid.  Honestly, I could sit here and type "I felt really stupid!" a hundred times and still not convey to you how incredibly stupid I felt.  There I was, I had graduated from a high school for gifted students, gotten out of college in 3 years with double major AND a 3.69 GPA, and yet I felt completely, utterly, indescribably stupid.  I thought I was an intellectual fake and a fraud, and couldn't for the life of me figure out how I'd gone 22 years without anybody - including me - ever realizing it.  It wasn't really that I was stupid - I could learn the stuff, I just couldn't remember it.  But I didn't realize this at the time; I just felt...(you know)

Meanwhile my face was breaking out full force, worse than ever, even though I was on Retin-A and Erythromycin.  Every day I woke up and wished I could either stay in bed, or wear a paper bag over my head so I wouldn't have to subject the world to my disgusting face.  

And I was still gaining weight.  

Once I went to the doctor to get help for a period that had lasted almost 4 weeks.  He gave me Provera to stop it, and then proceeded to tell me that I was just fat and lazy and I ate too much, and if I lost weight that my periods would go back to normal.  He couldn't seem to get it through his thick skull that I had never, ever had normal periods, even when I hadn't been overweight.  (You remember, back in high school when I wieghed 120 and thought I was SOOO fat!)  

He was right that I was fat.  That much anybody could see.  But he was wrong about me being lazy and eating too much.  It wasn't that I was lazy - it was that I never had any energy.  Some days I didn't have the energy to walk from my office at school to the student union, which was THE NEXT BUILDING OVER!  I remember several times, after I had walked over there and had a fat-free fruit smoothie or some "naturally fat-free" pasta (Ha! There is NOTHING natural about pasta!) with some almost-fat-free marinara sauce for lunch, I literally had to lie down and take a nap when I got back to the office.  (Hint: notice what I'd had for lunch!)  I probably ate less than 1800 calories a day.  If I was hungry all the time - how could I possibly be eating TOO MUCH?!?!?

I also had the dilemma of "Wear make-up to cover the hideous face, and make the problem worse, or not wear it at all and look even more hideous?"  I probably had over 50 new breakouts each day.  Sometimes I'd get 2 or 3 right next to each other, which had the effect of looking like a big quarter-sized, Rudolph's-nose-looking zit.  Nothing I did seemed to help, although eventually I figured out what things made it even worse, and tried to stay away from them. Things like trying to wash my makeup sponge and use it again. Or sweating.  Or touching my face.  Or resting on Jeff's shoulder, which was sadly one of my few comforts left in life.  

And the hair! Ugh!  I had sideburns over an inch wide, all the way down to my chin, long and curly, and so thick you couldn't see any skin underneath them.  I wore my hair long and down, and prayed every 5 minutes that a wind wouldn't blow my hair and give away my disgusting secret.  And I had so many chin hairs I think it officially qualified as a goatee.  It would take me over half an hour every day to pluck enough hairs out of it so that it didn't look like one.  And that was barely getting just over half of them.  It would have taken me over an hour every day to get all of them, and I honestly could not stand to look at myself in the mirror that long.

By this time I weighed 185 lbs.  And I thought I was SOOO fat!

And you know what?  I really was!

I don't remember exactly when these pictures were taken, but I think
it was some time in between Oct. 1998 & Feb. 1999.  These are honestly 
two of the three worst pictures I have ever taken in my life.  I want 
to *vomit* when I look at them.  Because I was mirror-phobic by this point, 
I had no IDEA I looked so bad.  But at least I can use them for inspiration, when I 
think I want to have that piece of chocolate or that bowl of Multi-Grain Cheerios.

This is me with my Granny.  I never noticed until just now that 
I have her nose. Except hers doesn't break out like mine does.

Here I am with Jeff on the same day.  In my size 18 shorts 
and Simeon's way-too-big-for him Thibodaux t-shirt.

I was fat, I was ugly, and I wanted to die.  I really, truly, utterly wished I had never been born.  In fact, there were only 3 things that really stopped me, once an eternal optimist, from killing myself: 1) I couldn't figure out how to leave Jeff and Leah and a couple of other people behind without really hurting them, 2) Although I can't imagine Hell being worse than being fat and hairy and zitty and ugly and stupid, in all reality it probably is, and 3) I am the biggest wimp when it comes to pain that you will ever meet!

Of course, I really wasn't living at all. I was so depressed and sorry for myself that I couldn't see the good in anything.  I just existed, miserable, from day to day, going to work or school or whatever I was doing at the time.  About the only thing I enjoyed doing was playing the drums or hanging out with my friends from church.  Everything else seemed like too much effort, and not worth the trouble.  I only did things because I had to do them.  And sometimes not even then!

During this time, after I got my Master's, I applied for some cool Math jobs, like working for the Census Bureau in DC.  But nobody ever seemed to want to hire me.  I decided that people were finally starting to figure out how stupid I really was.  You can imagine how this utterly decimated any shred of self-esteem I might have had left at this point.

I'd also begun to notice that when I got hungry, I would turn into a real monster if I didn't get food immediately. Cranky, mean, snappy... excuse my language here but the only phrase that really describes how I was when I got hungry is Grade-A, No. 2, sharpened bitch!!!

In November of 1998 I decided to pursue fertility treatments.  The impetus that got me in the doctor's office in the first place was that I was in the midst of a very heavy and painful period that had started 3 weeks before.  So when I got in there, I told the doctor that I needed it stopped, and that I wanted to get pregnant. I mentioned that I had been on Retin-A, but had stopped taking it because I though maybe that was interfering with me getting pregnant.  I also told him about the hunger-monster thing, and asked him to check me for diabetes, hypoglycemia, and anything else he could think of that might give me the same symptoms.  He asked me if I'd ever heard of "Polycystic Ovaries."  I said, "No," wondering what in the world having cysts on your ovaries had to do with turning into a monster when you're hungry, but I didn't ask.  He wrote a referral to OB-GYN for an infertility consult, and he said that they would address my lengthy period, as well as the infertility issue.  He also ordered some fasting bloodwork, which he said was to test for diabetes, and told me to discuss these results with OB-GYN as well.

OB-GYN didn't have an appointment open for over a month.  Meanwhile I just kept bleeding and bleeding.  

It finally came the day for my appointment.  Of course I had to take off of work for it.  I get there, and they tell me they are going to have reschedule me for another day, because the doctor had to do an emergency C-section.  I pitched a fit.  I was literally in tears, yelling at the nurse, "You mean I have been bleeding for over two freakin' months, and you're just gonna send me home and let me bleed another week!"  I mean, not that I didn't want this woman to have her C-section, but HELLO!!!  I'd been bleeding for over nine weeks at that point.  I could have kept Always and Tampax in business BY MYSELF!  They looked through my chart and said to me (and you really need to imagine me saying this to you in my Scooby Dumb voice to get the right effect here!) "Uh... we didn't know you were bleeding.  We just thought you were here for an infertility consult."

So they found the other doctor and talked to her, and she squeezed me in, although I  had to wait like 2 hours to see her.  She did an endometrial biopsy to make sure I wasn't growing anything bad.  Let me just say, OUCH!  If you ever have to have one, make sure you take lots of pain killers beforehand.  I, not expecting it and therefore not being drugged, almost passed out from the pain.  They only THOUGHT I was screaming when I was yelling at those nurses!  

I asked her about my bloodwork, and she said I didn't have diabetes, but my hormones were a little off.  Then she basically asked me all kinds of questions about my history, determined I wasn't ovulating and needed fertility drugs, but told me I had to do more blood work to be sure.  

So I did, and I came back, and she said, "Here's a prescription for 50 mg. of Clomid.  Take one per day on cycle days 5-9."  No "You can use an ovulation predictor kit to help you determine when you're going to ovulate."  No "Monitor your BBT this month to see if you ovulate."  No "Come in midcycle for an ultrasound so we can make sure we're not hyperstimulating your ovaries and making them rupture."  No "Come in for blood work on Day 21 so we can measure your progesterone and see if you ovulated or not."  Not even a "You will probably ovulate around day 14, so you need to have sex at least once every other day between days 9 & 15."  She told me NOTHING, except if I got a period in about a month, the medicine worked and I need to do it again, or if I didn't, then either it worked and we were done, or it didn't work and I'd need to up my dosage.  And unfortunately, I didn't know enough about unfertility treatments then to realize she didn't know what the hell she was doing.  Although I should have had a clue when, when I asked her for some literature on the drug she was prescribing, she told me to go look it up on the internet!  

Now, as asinine as this doctor seems to me now, and as WRONG as it was for her to do that, it turned out to be the only good advice she ever gave me.  Because while I was online looking for "Clomid," it seemed that every page I went to was some women telling a story about her infertility, and using clomid.  And a lot of these women kept mentioning "PCOS."  At first I ignored it, looking strictly for clomid.  But after seeing "PCOS" 10 or 15 times I got curious, and started reading.  One lady described symptoms of infertility, acne, and being very cranky when she got hungry.  And then all of a sudden I remembered the other doctor asking me if I'd heard of "Polycystic Ovaries," realized that might be the "PCO" in "PCOS," and I began to get an inkling in my mind that maybe that doctor did know what he was talking about after all.

So I did a search for "Polycystic Ovaries."  And I found tons of sites, and every one I read convinced me more that this was what had been wrong with me for the last 7 years.  I cried and cried and cried.  I cried with frustration that I'd had these symptoms all along but no doctor ever been bright enough to diagnose it.  I cried with relief that I was not a lone freak, but that other people were going through this, too and it wasn't all in my head.  And I cried with joy, that finally there was hope that I could actually DO SOMETHING about all these nuisances that had taken over my self-esteem and my will to live.

At that moment, for the first time in who knows how long, I felt like I wasn't alone anymore.  And the very sad thing is I never realized that I felt alone at all, much less how incredibly alone I felt, until I didn't feel it any more.

More coming soon.  I'm not even halfway done yet.  Write me and ask about it if you think I'm taking too long, as I'm generally pretty busy... But just so you know it's a story with a happy ending, here is a pic of me from Nov 2000.

Roomie # 2 & Roomie #1 Rendezvous in Round Rock!

 


Here are some PCOS basics.  Most of it is a repeat of what I wrote for the NM PCOSupport web page, with a little personal commentary thrown in.  You may also visit some other PCOS sites with the links on my "Links" page.   

PCOS affects somewhere between 5 & 10% of women, yet it is rarely diagnosed until the women complain of fertility problems. There is a broad range of symptoms (most of which I suffered from, and never had a CLUE they were all related!). These include:

         Abnormal hormone levels - Women with PCOS tend to have abnormally high levels of testosterone (Hyperandrogenism). Although it is normal for females to produce these hormones, women with PCOS have them in higher amounts. This manifests itself in some really annoying and embarrassing ways. You tend to lose hair in places you want to keep it (like on your head!) and grow hair in places you don't want it (like on your face, abdomen, chest, and other places where men usually grow hair and women usually don't). Acne is another common side-effect of the increased testosterone levels.  Women may also have an abnormally high LH (lutenizing hormone)/FSH (follicle stimulating hormone) ratio. 

         Irregular or absent menstrual periods - Every cycle, a woman's body prepares an egg to be released for possible fertilization.  Often in women with PCOS, the egg is prepared but, due to the abnormal hormone levels, is not released.  A cycle in which ovulation does not occur is called an anovulatory cycle, and the bleeding (if any) that follows it is called anovulatory bleeding.  Different from normal menstrual bleeding, anovulatory bleeding occurs because the uterus can no longer sustain the endometrium.  In some women this may happen about the time a period is expected, giving the false appearance of a normal cycle.  Other women experience oligomenorrhea- rare and unpredictable periods, or amenorrhea- the absence of menstrual periods.  Disfunctional uterine bleeding - abnormally heavy and/or prolonged bleeding- is also sometimes seen in conjunction with anovulatory cycles.  And like I said before, a BBT that looks more like an EKG is almost always indicative of an anovulatory cycle.

         Polycystic Appearing Ovaries (PAO) - Ovaries which have many small cysts from repeated anovulatory cycles.  Each time an egg is prepared but not released, its follicle becomes a small cyst on the ovary.  Over time many cysts form.  These cysts are sometimes said to resemble a "string of pearls" wrapped around the ovary.  It is important to note that the name PCOS is actually somewhat misleading, because not all women with PCOS have PAO, and not all women with PAO have PCOS.

         Infertility or reduced fertility - if a mature egg is not released during the middle of a woman's menstrual cycle, she has no chance of becoming pregnant.  (I wish I had learned in the beginning that just because you are having periods doesn't mean you are ovulating!)

         Hirsutism - excessive hair growth in typically "male" places, such as the face, chest, stomach, and/or inner thighs.  This is caused by abnormally elevated testosterone levels.  

         Androgenic Alopecia - Thinning of hair on the head, and/or male-pattern-baldness type loss of hair.  This is also caused by elevated testosterone levels.

         Acne - Yet another culprit of high testosterone levels.

         Obesity - Many women with PCOS gain weight easily, and sometime unexplainably.  These women usually also find it very difficult to take the excess weight off.  A lot of times both of these problems are related to eating too many carbohydrates.

         Insulin Resistance - a condition where the body responds improperly to insuln, inhibiting the effective processing of carbohydrates. Basically, our bodies don't "listen to" insulin, and therefore don't process carbohydrates right. Instead of being used for energy, most carbohydrates ingested are stored as fat. This explains why I gained 60 lbs in 3 years on what the "experts" insisted was a healthy (i.e. low-fat) diet. If you have gained weight unexplainedly, or if you find it difficult to impossible to lose weight on a traditional diet, you might want to check into this. I sure wish someone had told me about it years ago. I spent 7 years wondering why I steadily gained weight after switching to a "healthier" diet. Luckily, since I modified my diet to reduce the quantity/improve the quality of my carbs, I have lost 2/3 of the 60 lbs (that's 40 lbs for you non-math types!:) that I gained in 3 years --- in NINE MONTHS!!! And, more importantly, I have felt better (from the second day I started eating this way) than I had since I graduated from high school (which was about the time things started going REALLY awry with my body). If you are interested in learning more about insulin resistance or low-carbohydrate diets, check out my links page.

         Acanthosis Nigicans - Dark, velvety patches of skin and/or small pieces of excess skin, usually located around the neck, armpits, groin, and abdomen areas.

         High Blood Pressure - (speaks for itself)

Which symptoms I have been affected by?  To varying degrees, all but the last one.  But I am very happy to say that following a low-carb eating plan has helped dramatically.  It didn't make most of them go away completely, but the improvement was noticeable all around.


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