PCOS and Me

* The following is a narrative about what PCOS is, and my experience of having it. If you don’t care, or think it’s TMI,  you should skip this post. You’ve been warned!*

I’m sure most women of childbearing age of heard of PCOS. There are sections on it in nearly all books relating to fertility, cycles, female reproductive lives, nfp, etc. If you have normal cycles, you skip over it because, frankly, it doesn’t apply to you. If however, you are like the 5 – 10% of all women of childbearing age who have it, you voraciously read the section, looking for new ideas, strategies for overcoming this “syndrome” which feels like a curse.

So what is it? PCOS stands for Poly-Cystic Ovarian Syndrome. It is the leading cause of sub and in-fertility in women. It’s cause is unknown. There is probably a genetic component; most women who have PCOS have a mother or sister with PCOS. It is related to insulin resistance; but no one is sure if that is the cause. Insulin resistance means that a person’s body cannot effectively use insulin, which leads to the over production of it. Insulin over production leads to the over production of both estrogen and testosterone in women who are affected. It blocks LH and FSH from being effectively used, and this, in turn, leads to infrequent and often unpredictable ovulation (if ovulation occurs at all). It affects one in ten women of child-bearing age. It certainly affects me.

Some of the symptoms include:

missed or wildly irregular periods

severe acne

male-pattern baldness

insulin resistance and type 2 diabetes

excess facial hair

obesity combined with a difficulty losing weight (the PCOS body stores fat exceptionally well, and metabolizes calories poorly, how considerate of it)

mood swings, anxiety, depression

Sound like your worst nightmare? It is.  Or maybe just the bearded-lady at the freak show? Yeah, she probably had PCOS.

Now, to be fair, this is a syndrome which varies greatly by woman, and many women have PCOS and the only symptom they have is irregular periods. Many women never know they have PCOS until they go off of birth control pills to get pregnant.  And don’t.

This is my main beef with women taking the pill, having no idea what their body is even doing. How can it be normal for a woman to go 10 or 15 years without ovulating regularly, and it escapes her attention? Because the manipulated hormones in the HBC pill make her think everything is fine. If this woman was not on the pill, she’d realize she’d gone four months without ovulating, and that’s bad.

The way it works is like this: In women with PCOS, the ovary doesn’t make all of the hormones it needs for any of the eggs to fully mature. Follicles may start to grow and build up fluid. But no one follicle becomes large enough. Instead, some follicles may remain as cysts. Since no follicle becomes large enough and no egg matures or is released, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman’s menstrual cycle is irregular or absent. Plus, the cysts make male hormones, which also prevent ovulation.

Simple enough right? Hormone imbalance = no ovulation = no pregnancy.

I was diagnosed with PCOS ten years ago, when I was 16 and had only had a handful of periods. I was immediately put on the pill, which I dutifully took from that day until I turned 21.

I’ve taken Metphormin, a medication intended to increase insulin sensitivity, off an on for most of the ten years. I started taking it since September 2008, just shortly after going 8 months without a period. That’s the longest I have ever gone without one.

Many women with PCOS will go years without a period, if they are not given doses of progesterone to induce one. I have been lucky. I ovulate often, if not at regular intervals. Of the above mentioned list of horrors, I have only suffered with a few, the most severe of which are the irregular periods and severe insulin resistance. Despite never being more than 20 pounds overweight in my adult life, I was diagnosed with type 2 diabetes at 24. Most women who are diagnosed with type 2 in their mid-20’s are severely obese.

Losing 15 pounds and taking metphormin returned my periods on a somewhat regular basis. Then I got pregnant. Accidentally. This is really a feat for someone with PCOS. And I’m sure that if I had not been taking metphormin I would not have become pregnant.

Though I miscarried, that experience provided me with the knowledge that I can get pregnant. This is huge.

When my period returned after the D&C, I was pleasantly surprised to learn that I would then enjoy regular 35 day cycles for the next six months. Then came October 2009. I got my period on the 27th. I’m still waiting for the next one. Yeah. I am on cycle day 120-121 (I have been charting, but lost focus, surprise, surprise around day 90).

Because of this lack of a period for four months, after being semi-regular for so long, I am  so frustrated, stuck, and sick of it. I have tried everything short of standing on my head to try and get my period. You can’t force something like that. The thing that is so frustrating is that we can’t even try to conceive. Lame. Squared.

I have been feeling really down. Really down. Because, oh yeah, PCOS also has anxiety and depression as side effects. Awesome.

BUT, given all that, I’ve also seen some signs of hope. Thanks to the wonderful ladies of my ENDOW group at Holy Rosary, I discovered the possible positive of using a fertility monitor to pinpoint more accurately my ovulation time. I also found out about not one, but two NFP-only doctors in Indianapolis, one of which works directly with couples struggling with fertility problems.

I am calling Dr. Mattingly tomorrow to (hopefully!) make an appointment. I also discovered a doctor here who is board certified in both OB-GYN and reproductive endocrinology. This is a good thing.

I also found out about a conference at Notre Dame in March; it’s the Diocese of South Bend-Fort Wayne Marriage and Family Conference. Bishop Rhodes and Janet Smith (of Contraception Why Not? fame) will be keynote speakers, and there will be two different sessions on (1) dealing with fertility issues and (2) NaPro technology. So excited!

And most positively, I seem to have *finally* ovulated. I’ve had elevated temps. for the last few days, so I *should* get my period sometime this week.

All in all, I am still feeling frustrated and sick of it all, but I also feel that it will only be a matter of time and timing until I get pregnant. I’ve just got to hold on until then.

I might have PCOS, but I can’t let it have me. That’s all.