I’ve mentioned before that I have polycystic ovarian syndrome. For most people, this just means that cysts form on my ovaries. That’s a part of it, a small part of it. There is so much more that most people will never understand.
So, for the millions of women out there who deal with this every day, let me explain a little more. Let me also mention, I am a member of an online support group for PCOS, because there is a lot of mental aspects that go along with it; the biggest one being self-loathing. Warning, this is going to get a little graphic, but I think men need to know about it just as much as women… Because more than 10% of the female population in the world has PCOS – so you probably know someone with it – and it isn’t just a female disorder.
I was lucky, I never wanted kids. PCOS is the leading cause of female infertility in the western world. I have seen women struggle with this for over a decade. I have seen the pain because they can’t have a child or a second child. Feelings that they are somehow less of a woman because they can’t give their husbands the kids they always wanted. I’ve even seen a few marriages fail over this. The most heartbreaking instance, the husband left the wife after the doctors told them they wouldn’t do any more fertility treatments and they should either make plans to adopt or make their peace with not having children. Because fertility treatments are problematic with PCOS. In Vitro fertilization is the only sure fire way to make it happen, but sometimes, it’s hard to harvest the eggs of a woman with PCOS. Unlike “normal” ovaries, PCOS has tissue around the ovaries, and it has to be cut into. That’s why we get cysts. When we ovulate, the eggs embed in that tissue and can cause irritation, which leads to cysts, which are incredibly painful. It also leaves scar tissue on that tissue and that can make it thicker and denser, making it even harder to get to it. One woman I know did do In Vitro. They had to remove one of her ovaries to get the eggs and then it didn’t work. But the surgery damaged the ovary so badly, they couldn’t leave it in.
If that was the end of symptoms, I think most women with PCOS would do a jig. It’s not, because the name is a complete misnomer. Ovarian cysts are a symptom, not the source of the problem. It is in fact an endocrinology disorder. Endocrinology is the fancy term for hormones and it is not limited to a lady’s estrogen and androgen.
Women with PCOS are ten times more likely to get Type 2 Diabetes, regardless of their diet. For the majority of women with PCOS, diabetes is a when, not an if. I know more than a dozen women with PCOS who have maintained strict paleo or carb-free/sugar-free diets and still ended up with Type 2 diabetes. I even had a nutritionist who was all about preventing diabetes in women with PCOS. She had this very strict meal plan that she had been following for a few decades and swore by it. Last year, I heard her foot had been amputated, because you guessed it, eventually, even she got diabetes. When she got it, she quit her job as a nutritionist because she couldn’t stave it off even in herself, how could she help others with her condition? The truth is, she couldn’t. The risk of getting diabetes if you have PCOS is over 90%.
As is heart disease. I got into a little bit of a spat with my bestie this year because I was put on high cholesterol meds. I didn’t think about it at the time, I just kept wondering why I had high cholesterol. What did I need to cut out? Then I was talking with my primary care physician about it, because liver problems run in my family and he reminded me; PCOS causes the liver to mass produce cholesterol. It might not be my diet at all. It might be the PCOS that has created high cholesterol, because the production and removal of cholesterol is a hormone thing. My bad is 189, my good is 153. But since my migraine meds cause chest pains, getting my cholesterol down would be a good thing. However, as my primary care doctor was reminding me that PCOS might be playing a significant role in my cholesterol levels, he also told me the meds might not help as much as they would if I didn’t have PCOS. Well damn.
Migraines are a side effect of PCOS… back to that endocrinology. Not just PMS migraines, but all types of migraines are more common in women with PCOS. That one has never fully been explained, since hormones do not seem to play a role in them. I get headaches when I’m close to my depo shot, but they aren’t migraines. They are just headaches caused by hormone deficiencies, so why do so many of us have actual migraines? No one is quite sure.
Kidney problems, liver problems, pancreas problems – these are all things women with PCOS have to watch out for, because they happen at an alarmingly high rate. Hormones affect the function of all these, because insulin is a hormone. While it is mostly produced by the pancreas, it does impact the function of your liver and kidneys. There are other hormones that affect their function too and guess what, all our hormones are a mess.
Certain types of IBD and IBS can be caused by hormone problems. I think every women I know with PCOS, except one, has been diagnosed with Irritable Bowels. That’s exciting, in the worst possible way! We all search for trigger foods, but the truth is, we all have days where the trigger is anything we eat. On those days, you just have to hope for the best.
The other thing hormones are really good at; controlling weight. Or in the case of women with PCOS, not controlling it. My weight problem is self-induced, I love soda and I have Sjogren’s, so I drink a ton of it. However, I know plenty of women who eat healthy and exercise four or five times a week and are still considered obese. In a radical case of a woman who developed a serious case of self-loathing, she began taking fertility treatments, not so she could get pregnant, but because it was the only way for her to maintain a healthy weight. When she’d go off of them, her weight would skyrocket, despite eating less than 1,200 calories a day and living a sugar-free, carb-free lifestyle.
Which brings us to androgen and estrogen… Androgen is responsible for a lot of things in both men and women, the biggest being hair growth. A man who can grow a full beard, is a man with a healthy level of androgen. However, women with PCOS, have abnormally high levels of androgen. It can vary from elevated for a woman to elevated for a man. I have a heaping dose of it; I have enough androgen for a man and myself. I’m not the only woman I know with that problem either. You get a group of women with PCOS together and at some point, we’re going to start swapping ideas for how to get rid of our hair. Because in our 20s, it’s like three little chin hairs, maybe a light moustache, and some peach fuzz where most men have sideburns, but by the time we’re in our thirties, most of us are combating a full moustache, some serious growth on our chin, praying that our sideburns don’t get any more noticeable, and wait, you have hair where? Most people think women get hair on their legs, underarms, and maybe a few stray hairs on the chin. Not women with PCOS. We can get it on our backs, chests, butts, and nipples. I pluck two small hairs I get on my chest, dead center and if I don’t pluck them and wear a low cut shirt, they are visible. Yay! As a matter of fact, I spent my teens and most of my twenties being ashamed of my body because of nipple hair. I’m not now because I know plenty of women that have it (one is a porn star of all things) or who have it so much worse than me. However, realizing that I wasn’t an abnormal freak, did so much for my self-esteem, which is why I now admit I have it. Maybe some young lady, somewhere, who is feeling like I did when I was younger will read this and realize she’s not alone.
And androgen does a few other things for guys. High levels increase aggression, hostility, and crankiness. I have all those. It’s why I’m cranky most of the time. As I get older, it gets worse, because most women have a balance of androgen and estrogen and I don’t. My estrogen is low even for a pre-pubescent girl. Birth control helps because it gives me estrogen, which is why I get so amazingly irritated when I am close to getting my Depo shot. My estrogen just bottoms out while my androgen keeps flooding my body and I just want to crawl in a cave and avoid people until it evens out, because I don’t think I’d survive in prison.
It also impacts sex drive in men and women. For women, progesterone is supposed to be the big libido driver. For women with PCOS, progesterone plays only a small role or none at all because we all have to be on birth control all the time, not to prevent pregnancies, but to prevent all the nasty things that happen when you have PCOS and menstruate. Since our progesterone never gets very high because of our birth control, androgen controls our libido, the majority of us have high sex drives. Oh the irony is not lost on me there… Due to body hair, infertility, diabetes, high cholesterol, weight problems, and irritable bowels, we get to have a very high sex drive while feeling like an ugly chud (thanks Kevin Smith for bringing that into my vocabulary). That’s great, we wouldn’t have sex with us, but we want others to have sex with us. That’s a vicious cycle that leads to self-loathing, disgust, and self esteem issues.
Oh and androgen is the leading cause of adult acne. There’s no way to scrub the hormones off our faces, backs, and chests or legs, or behinds, or anywhere else someone might get a pimple. We live with acne and there is very little we can do about it because the antibiotics don’t fix the hormone problem any more than acne treatments. Of course, that doesn’t stop people from telling us how we need to wash our faces better or try product X because we should be done with acne by now and yet, we aren’t.
Now for the estrogen part of the equation. Most people think low estrogen means you behave more like a guy. You don’t. It’s like you are constantly in PMS. I cry over just about everything happy or sad. Heaven forbid I watch a movie with a sad ending or hear a song that makes me sad. My SO and I watched Sully the other night, I cried through half the damn movie. It was touching, but it wasn’t worthy of a good cry. Let me be around someone else who’s crying and holy shit… I have Sjogren’s, which means my mucus membranes are dry from constantly being attacked by my immune system, yet you let someone I know start crying and I will bawl my head off and I might not have a clue why. And happy endings just kill me. I try to hide the fact that I’m crying, but it’s hard because most people are not pretty when they cry, myself including. And that’s the other thing that is always discussed in my support group; we had a discussion about the silliest things that have ever made us cry once. The winner was a squirrel running around a tree gathering peanuts that had been set out for it. However, by the time the person telling the story finished, we were all crying with her.
PCOS is the leading cause of early menopause in women particularly under 40. Menopause that early increases your chances of breast cancer, ovarian cancer, and heart problems. That’s fun.
Speaking of breasts, low estrogen and high androgen levels create an interesting side effect with boobs. For a large number of women with PCOS, their breasts never finish puberty. Meaning that while all our friends are one cup size for the rest of their lives, we are slowly going up in size. About half the women I know with PCOS have this problem. They can lose weight and still go up in cup sizes and it’s not because the band size went down (see post about bras and how stupid they are). One of the women in my group has had three breast reductions and she’s 43. A number of them are like me; triple Ds, Es, Fs, Hs, or getting ready to go down several sizes because it’s getting to the point where they are going to fall over and not be able to get back up because of the weight in the front of their chests. Another one, who started in group shortly after me, was an H. She had surgery and went down to a C. She’s back up to a triple D, but the only place she has gained weight in those twelve years, has been her chest. Thankfully for most of us, the growth is slow. A few unlucky ones though are growing like they are still in puberty, which is super fast.
Now for the gross part; menstruation. Androgen, progesterone, and estrogen are part of the menstrual cycle. These hormones go up and down to create a regular cycle. In PCOS, the words “regular cycle” makes us all giggle because none of us know what it is. I can remember sitting in health class and listening to them drone on and on about the 28-day cycle women are supposed to have and thinking 28-days my ass. Try 6 days, or 46 days, or 18 days, or 39 days… Yeah, I really did say 6 days. That is the shortest time between periods I have ever heard of a woman with PCOS having. The longest was nearly a year at 291 days. She was positive she was pregnant, regardless of what the tests and ultrasounds kept telling her. Most girls in puberty have some irregularity. That’s normal, but for a woman with PCOS, it is rare for that irregularity to go away. Oh the number of pants and underwear we have ruined is tragic. Because you can only be prepared for that shit to a certain degree. This is the reason all of us end up on birth control at a very early age (I was 11). That and a majority seem to suffer from menorrhagia, which just means your period is so heavy, you become anemic from iron loss and I know a few people who have passed out from blood loss because of them. I once passed out going up a flight of steps in high school. I was sent to the nurse’s office while they called an ambulance, but I didn’t need an ambulance and I had to embarrassingly explain to my male principal, male vice principal, and male counselor that I really just needed juice and cookies and maybe some beef jerky because I was on my period. The nurse was kind enough to step in once I said the words PCOS and menstruation. I got my juice, cookies, and beef jerky as well as a finger prick to make sure my blood sugar wasn’t off and no ambulance, which would have just been that more embarrassing.
Almost every woman I know with PCOS has some form of depression or anxiety/panic disorder. This is not a hormone imbalance, at least, I don’t think it is. It’s a self-esteem/confidence imbalance. This is the other big thing that makes it into every discussion, because we don’t feel like normal women. We have body image issues because most of us are at least a little overweight, we have hair in places most women don’t, we have fertility issues, we have menstruation issues, we cry over everything, and we just don’t feel like we belong.
Finally, guys get it too. It’s an endocrine problem, not an ovary problem. Guys can get it and there are a couple in my support group. They have a lot of the same symptoms women have and the same risks. The difference is that most go undiagnosed. Those in my group, have mothers that had it and by the time they were in their mid-twenties, they were having some issues. And the guys have body issues too. And the low estrogen impacts their ability to perform during sex (hate to ruin your day gentlemen, but guys require estrogen too). And they have trouble with their weight and their body hair and their mental well being. They have an increased risk for high cholesterol, diabetes, kidney problems, liver problems, and pancreas problems. And tragically, most people with PCOS are apple-shaped, meaning they retain weight around their abdomen, making them look like an apple with legs.
Now, PCOS is inherited. I didn’t get it from my mother. She has zero symptoms of PCOS. My father is a diabetic with heart problems who happens to be apple shaped. He also has MTHFR-677t homozygous and in recent years, it’s been found that this genetic mutation is often found in women with PCOS (I have it). MTHFR-677t is pretty basic, you don’t create the enzymes to break down folic acid, but there does seem to be a correlation between MTHFR-677t homozygous and PCOS. If this genetic mutation does make PCOS more likely, imagine how many men are walking around without knowing they have an endocrine disorder that can be life altering and life threatening?