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.

  • http://musingsofacatholiclady.blogspot.com/ Michelle

    I have known many women with PCOS. We thought I had it at one point…I had my blood drawn to check for insulin resistance. My body “tends toward” it…but I wasn’t over whatever number they needed to say I had it. I have to pluck facial hair, but I know a woman who literally has to wax most of her face.

    PCOS is so crazy…in some women, all the symptoms are very evident and the infertility unbearable. In other women, they hardly knew they had it because they conceived no problem..but they were women who didn’t chart…just left it all up to God…so they were always surprised.

    In our pop-a-pill-for-everything culture, it aggravates me to hear of a doctor putting a teen girl on the pill to regulate her periods. Unfortunately, with the kickbacks doctors get for prescribing…its unlikely we’ll see much of a change in that arena.

    That is exciting about the conference at Notre Dame…can’t wait to read all about it.

    And I know of women who have conceived even with PCOS…it may be difficult, but not impossible. I will keep you in my prayers.

  • http://Songofasunflower.blogspot.com Katie

    Love, love, love your attitude! Everyone should live by that claim: “I might have _____, but I can’t let it have me. That’s all.”

  • http://thatmarriedcouple.wordpress.com thatmarriedcouple

    Thanks for explaining PCOS – I’m one of those people who’s just heard of it but never really understood it. In fact, I mentioned it to my husband a few days ago and when he asked, I couldn’t even tell him what it stood for! I’ll have to share this with him.

    Ugh, I’m so sorry to hear about your super long cycle, and so happy to hear it might be ending! I’m glad to hear there are a couple good doctors near you though, and am jealous that you’re going to that conference! You’ll have to let us know how it goes!

    And I will continue praying for you two!

  • http://nowealthbutlife.com Rae

    It is great to read that you’re going to be getting help! I know that PCOS is not really something that can be controlled, but there is so much that can be done to make it more bearable. And I am always amazed at how little people who know NFP are taught about how to use monitors etc. to *achieve* pregnancy. Crazy.

    I am glad that it seems like you know what you’re dealing with and how best to deal with it. If your doctor gives you tips on exercise I hope that you’ll pass them along. I know that certain types can be hugely helpful for women with reproductive issues, but I don’t know any details (other than that some forms are better than others and both nothing and overdoing it is bad… as I said, not much!).

  • Marie

    I had severe endometriosis. Long story,but had much trouble getting pregnant. Now,my children are 18, 16, and 11.

    I will pray that you conceive a healthy beautiful child! (or 2,3,4,…)

    God Bless You.

  • http://graceandpressure.blogspot.com/ Grace

    Thoughts for you, and I heard Dr. Mattingly is good. For now, my Dr.’s have decided to leave me alone and see what happened, but strongly indicated that I would be in for a battery of tests.

    On the other side–the whole reason I did that crazy diet thing was because my family has a history of type II diabetes, and I was already leaning that way. The two months I’ve been doing it, my skin cleared up, I don’t have the sugar hangovers anymore, and the pain has lessened. Maybe it works?

  • http://catholicmutt.blogspot.com CM

    I hope everything goes well with the doctors!

  • Pingback: Endometriosis and Me – Part I()

  • Angela

    I also have PCOS and I am curious about your miscarriage. I have conceived 3 times and miscarried all three times and even though my doctor denies it, I am wondering if you have ever heard of a correlation between PCOS and a higher rate of miscarriage??? My layman’s theory is that the increased levels of estrogen and decreased levels of progesterone might be causing it. I have taken progesterone pills the last 2 pregnancies and miscarried anyway though.

    The way my PCOS manifests is very different from yours. I have never skipped a period (except for during the years I was on birth control) but instead I once bleed heavily for 4 months straight. Incidentally, that is how I got convinced that birth control was the right thing to do. Trust me, a 120 day cycle is MUCH better than bleeding for 120 straight days. Is anyone else reminded of the bleeding woman who touched the hem of Jesus’ robe? Yeah.

    • spilisz08

      Angela,

      Thanks for your comment. There is a higher incidence of miscarriage among women with PCOS, but that is mostly true when the PCOS is not controlled through Metphormin or other medications. I’m so sorry to hear about your miscarriages; it is a terrible experience that I wouldn’t wish anyone to have to go through. You have my prayers!

      My miscarriage was actually not related to PCOS (says my doctor) because PCOS miscarriages are usually caused by a lack of adequate progesterone (your theory is right!) for the pregnancy to implant in the uterus. My pregnancy implanted perfectly fine, but as a result of either a poor egg or sperm quality, the pregnancy ended at around 8 weeks when we saw no heartbeat on an ultrasound. I had to have a D&C because my body didn’t realize it wasn’t pregnant anymore.
      My PCOS has made it more difficult to get pregnant, because even though I ovulate pretty often, it’s generally not too predictable.

      Thanks for sharing your story; I hope that we will both be able to be mom’s again soon!

  • http://noheavylifting.blogspot.com Dawn Farias

    Or maybe just the bearded-lady at the freak show? Yeah, she probably had PCOS.

    Funny!

  • http://www.jamiesperfect10.blogspot.com jamie

    Hello Angela. I’ve been enjoying perusing your blog…what a beautiful testament to your faith as you share your stories.

    I’m sorry I did not reply to your comment regarding Dr. Mattingly sooner…somehow life gets in the way sometimes. I’m afraid I am not familiar with him personally, although a friend of mine (who helped to organize the day of information/prayer/support that I was sharing about in my radio program) talked very highly of him. She’s met him before not as a patient, but through other seminars he’s spoken at. I believe his practice is a bit of a family practice with his mom? or wife? as his nurse practitioner. I’m sorry I can’t share more info.

    I appreciated reading your story on PCOS. I was not familiar with that condition. Unfortunately (or fortunately?) we never really had a reason for our 4 1/2 years of infertility. We tried lots of procedures at the time…I’m not proud to admit we did not adhere to church teachings, willing to do anything at that time to conceive. Turned out to be all in God’s time anyways when we conceived without medical intervention….and then some. When I hear about all the advances in options that are in accord with Catholic teachings now, I try my best to promote them. Hindsight is 20/20. I do wish you and your husband the best. Will think of you in my prayers…

    jamie

  • Kathy

    After 10 years of secondary infertility and numerous supplements, diets and protocols….I did become pregnant again. Of course years of begging God was a big factor, but I have to give a big plug for this diet… http://www.healingnaturallybybee.com

    THe author is not out to make money, sell a book, or sell a line of supplements. I’m sure you get inundated with dietary suggestions (I sure did) but I’ve been there and done them all. THe diet will no doubt help your PCOS. God Bless! Kathy