The Dark Side of PCOS

I was diagnosed with Stein-Leventhal Syndrome in 1966. My own mother called me a freak. Eventually a lot of other people did too. Until 9 years ago even doctors didn't fully "get it" and blamed the patient. Some still do that .

I thought I was alone with it.

Now called PCOS I realize how this scourge has ruled my life as a woman, and still does today.

I could have written this article below, almost word for word.

Thank you for taking the time to read this and pass this on to a woman you think will benefit from reading it. If you need to know more about PCOS visit the PCOS Association. Or you can write to me (link on right)

by Pam

The purpose of this is not a public pity party. After dealing with the emotions involved with PCOS firsthand, I think it's important for people to know what can go on in a woman's head. If you have PCOS, you know exactly what I'm talking about. If you know someone or are the partner to someone who has it, this may explain a few things.

Since I've been diagnosed, I've learned more about hormones than I ever thought I was meant to learn. After almost 20 years of having a menstrual cycle, I was familiar with PMS. For me it meant some cramping, a little bloating and that demonical urge to consume vast quantities of chocolate. I didn't experience the severe mood swings from depression to anger - until I was diagnosed and being treated for Stein-Leventhal Syndrome or PCOS (polycystic ovarian syndrome).

When I took my first prescription for Cycrin (medroxyprogesterone) to the drugstore, I had no idea what I was in for. It was supposed to be the magic pill to make my periods appear on time every month, taken on the 16th day of my cycle for ten days. Maybe it was psychological, but on those ten days, I felt great. I had more energy, I felt more positive. But on day 11, I felt strange. My nerves felt electric and I felt like I was on edge.

Now, I had already taken myself off caffeine a few months previous but it felt like I drank too much coffee. Headaches, they felt like those "one side of the head" migraines, swirled around my head a lot. Just the smell of certain foods sent me running into the bathroom to vomit and sometimes my stomach needed no provocation, it just wanted to empty.

The worst side-effect was the mood swings. I felt myself succumbing to a sort of depression for no apparent reason. On the weekend, I just wanted to lay in bed. Why wash dishes or laundry, it's only going to get dirty again and nobody appreciates it anyway. Why should I bother to cook dinner from scratch when at times nobody seemed very hungry after late afternoon snacking before I got home? I took it as a personal insult. There were quite a few nights where I just said, "Fend for yourselves." More and more I went to the liquor store on the way home. I figured it would help my mood, but it only made it worse. But I figured if I was face down in bed at 7:00 p.m., at least I wasn't yelling at anyone.

Yes, I had become more verbal when things ticked me off. It didn't take much to get my blood pressure on the rise. What, no toilet paper in the bathroom? Why can't you ingrates at least refill the toilet paper!!! I became totally intolerant of everything and everyone around me. As if I wasn't before, I became the Mistress of the Dirty Look. I became paranoid. Too many times if my husband was relating a funny story from work that involved or revolved around a female co-worker, I would inwardly go into a jealous fury. How DARE he talk about her! More than I had fingers or toes, I inwardly accused him of having an affair.

At the time we had a male dog named Ziggy, a black rat terrier that resembled a five pound four-legged bat. Because my medication had me bleeding everyday for over a month, it agitated the dog. (If you were raised on a farm or around animals, you'll know what I mean.) Ziggy and I became enemies and battle lines were drawn. All I had to do was walk into the room and his ears would stand straight up along with the hair on his back. I'd whip my head in his direction, throwing one of my famous looks, and he'd give a low growl. The dog went out of his way to leave "presents" for me on my side of the bedroom and on my side of the computer room. I'd go into a fury as I cleaned these up as others in the house thought it was amusing. I wasn't laughing.

It all came to a head one day when I came home sick from work. I spent most of the morning throwing up in the bathroom and asked to go home. I felt lousy. I hated my medication. I hated both Stein and Leventhal. I hated my doctor, I hated everyone. I walked in the door and the dog eyed me suspiciously already growling. I went to pick up his water dish to refill it and he wrapped his tiny jaws around my hand. He just barely scratched the surface of the skin but it made me livid. I held him up at eye-level with one hand and told him that his days were numbered under ten and I didn't have to put up with his crap (both figuratively and literally). I think he knew I meant business, his ears dropped and he whined in defense. I put him down and immediately thought of a few cruel things and went to bed after emptying my stomach for the sixth time that day.

Needing to talk to someone, I called my sister and voiced my hatred for the animal. She offered to take him off my hands to spare his life and insure his safety. At that point it seemed perfect, I didn't trust myself. Without consulting my family I agreed. The next day after work I walked into the house laughing like a madwoman and started collecting the dog's things. My husband was in a daze. What was I doing? "Ziggy has a new home and I'm helping him move," I stated quite proudly. I won over the dog, but I lost over my family. Even though Ziggy was officially my dog, my husband developed quite a bond with the animal. I grew up on a farm. Animals were either food or served a purpose and to me at the time, this animal had no purpose living here. For days my husband didn't talk to me. My pride wouldn't be swallowed and I didn't want to listen to sob stories when he did talk to me. I won, damn it, and I was going to revel in it. It resulted in a deep seated grudge for months.

Everyday I had to suppress feelings of rage at the most stupid of situations. Customers on the phone at work infuriated me for the simplest of reasons. Family members didn't understand and I was told I had a problem when I wasn't overjoyed about various pregnancies in and outside of the family.

Here's a short list of comments NOT to say to someone with PCOS:

"I don't know where you get this problem, I never had any problems getting pregnant, it can't be hereditary."

"Are you on or off your medication today?"

"Is it normal for you to act so whacko?"

"If God wants you to be pregnant, you'll get pregnant."

"Everything happens for a reason."

"It's just a test."

"Are you really sick or do you think it's in your head?"

"Can't you just snap out of it?"

"Maybe if you just don't think about it."

"Just lose weight."

I became erratic. I went out shopping, sometimes buying things I didn't really need. If I was going to be late coming home from work, I didn't call. Let them worry for once. I became tuned out from everything. I didn't even want to go out in public at times. Home was safe as long as everyone walked on eggshells. My phone calls were short to people who called me. "What's new," they'd ask. "Nothing," I'd say bitterly. Invitations to parties and events went unanswered. Christmas and holidays were just another day. I was never in the mood for anything.

The world was full of pregnant women and they were a reminder of what I couldn't do. I felt like they were shoving it in my face. If someone laughed about getting pregnant by "accident", I felt betrayed by God and them. The caustic off-the-cuff comment about "it wasn't planned, it just happened" was enough to make my veins harden into ice. A toss in the backseat and she's pregnant, what RIGHT did she have? I put in my dues, I thought. It was my turn. Secondary infertility is so hard to handle.

The fact that you did it before and not under the best of circumstances or relationship and now you're married to the best guy in the world and you can't conceive a child for him -- it's devastating.

I felt like a failure. I couldn't produce. I was a defective wife. I felt he was ashamed of me though he never said it. I felt like there was a big "B" tattooed on my forehead for "barren". Hey, I read my Bible, didn't guys like Abraham go out and get a concubine when the old lady couldn't spit out an egg? My self-esteem hit close to rock bottom and I had sworn years ago in a rotten relationship that it would never happen again. Well, it was happening. Arguments welled up in the home almost everyday. I was told I was turning into a monster. People were afraid to say anything to me. This would set me into crying jags late at night when I was sure my husband was asleep. Thoughts of suicide became common. I prayed to God that I wouldn't wake up so may nights. Some people proudly say that suicide is a sign of weakness and brag they would never even think of it. They've never been at the very bottom is all I can say. What use was I?

I was told to pray, but how can you pray when you think that even God is against you. I stopped reaching out because I felt that I was emotionally slapped everytime I did. Other women with no history or understanding of reproductive disorders can say very hurtful things unintentionally. I was emotionally vulnerable and I went further into myself.

I can't say what it was initially that started my climb back out. I received information in the mail about a book and newsletter by Dr. Christiane Northrup. Figuring I had nothing to lose except some cash, I sent for it. I read the book cover to cover and things were starting to click. I wasn't crazy and I wasn't alone. After changing my diet to vegan (no meat or dairy) and lots of soy products, I noticed a swift change in my mood swings. They went from less and less severe to almost gone in a couple weeks. There was a domino effect. Between the new diet and exercise that I was incorporating into my lifestyle, I was feeling better and better everyday. I knew one thing, the medroxyprogesterone was behind a lot of these feelings and I knew I'd better get off it. I felt an allegiance to my doctor and kept taking it and just started taking more control over my emotions. In December, 1996, I was going to give my doctor an ultimatum - do something else with my medication or I just wouldn't take it anymore. I walked in there armed for bear with information and related everything to him.

He switched my medication to Aygestin which is also known as Norethindrone. The demons subsided almost immediately. Although I had my days of feeling a little edgy right before my period, it wasn't nearly like it was. It was still hard to hear about the "oops" pregnancies without feeling a stab of jealousy. Part of it is that sometimes I felt the deck had been stacked against me without reason. Although they are not entirely sure, the research indicates this is 50% genetics and 50% environmental (stress, eating habits, weight, etc.)

Maybe you're born with it or predisposed to it, but it makes you feel like you're paying for a crime you didn't commit.

Although it's not a disability that lets me park in a special place at the grocery store,

it makes you feel less of a woman and more of a freak if you let it.

You find yourself rationalizing your infertility. You start coming up with lists of reasons why you don't need anymore children. Freedom to do what you want. Less money to spend. Less kids in the world population. Even with all the rationalizations, it still leaves you with that dead feeling in your gut. I could compare it in a simple way to if the radio in your car dies. You say at first, "Hey, it's not a big deal." You drive around not thinking about it for a while. Oh, you may reach for the dial but you smile and say, "Oh, yeah, I forgot." Then after a while it becomes annoying. You become agitated because you can't listen to the radio. Then you start thinking the whole car is a load of junk. The rest of the car seems to be running fine but the fact that you can't use the radio becomes the focus. Now if our reproductive systems were as replaceable as a car radio, would the world be just nifty?

If I were to offer one piece of advice to both newly diagnosed and long time sufferers of PCOS, it would be this: Don't let it well up in you silently, seek out other women who are experiencing the same thing. If you're reading this, then you have a load of resources at your fingertips. Throughout the Internet, there are various webpages and newsgroups dedicated to infertility, secondary infertility and even PCOS. Above all be proactive in your therapy. Although it's good to get into the chats with other women and bitch about it, remember that bitching doesn't accomplish much of anything.

Get out of the self-pity, brush yourself off and scream to be heard at your doctors' office! Take all the bad energy and put it to use.

Also as a side note to Ziggy sympathizers - he's now back home with us and is safe in my presence.

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