Childfreedom, subfertility, and womanhood

Polycystic Ovary

Left: What my ovaries look like.
Source: women-health-info.com

I am a woman with two wonky ovaries and no desire to make babies.

No part of that sentence renders the first four words untrue.

I have childfree friends and friends who have polycystic ovarian syndrome (PCOS). To my knowledge, I’m the only person I know of whom both can be said. But there’s one thing my childfree lady friends and my cyster friends sometimes say: “I feel broken.” Because society binds womanhood to maternity so strongly as to conflate the two. To be a woman is to be a mother, we’re told. You are the contents of your uterus. To fail to replicate your DNA is to fail as a woman.

Happily, I am free of that notion. I don’t feel broken at all, and I’ve never felt broken for not wanting children. I know plenty of older women who have led fulfilling lives without taking care of children, so I’ve always seen that as a valid option.

You get questions, though.

“So you want to adopt?” I used to skirt the babies question by mentioning my subfertility (NOTE: while PCOS is one of the leading causes of infertility in women, it is not a reproductive death sentence. Many women with PCOS can get pregnant through medical interventions). This strategy backfired for a big reason: my ovaries aren’t the reason I don’t want kids. I don’t want kids because I’ve never been interested in having them.

But wanting kids is assumed to be the default, so people ask me if I’m ever going to adopt. Nope. I think adoption is a beautiful choice for those who have the resources and the emotional fortitude to navigate the system, but it’s not my choice. I don’t want to be responsible for a helpless human being. That crosses off both adoption and reproduction.

But there’s something interesting about being both childfree and subfertile, and to move between both communities. There’s a conclusion I’ve come to from being involved in these spaces:

The assumption that all women will have children hurts people.

It hurts the subfertile and the infertile because many of them want nothing more than to have children, but are being held back by their own bodies. It often makes them feel physically broken, inadequate, undesirable. I encounter these confessions on a frequent basis, being part of the PCOS community, and it’s heartbreaking.

It hurts the childfree because it invalidates our choices, making many women feel like they are socially “broken” or somehow flawed, inadequate. Many people, when they find out a person is childfree, will respond by saying, “But you would make a great parent,” and the implication behind that is that the childfree choice is one derived by inadequacy at parenthood. Maybe that’s the case — one of the many reasons I don’t want to parent is that my high anxiety would likely inflict damage not only upon my potential progeny, but upon myself — but childfreedom is a choice based on preferences, not an obligation based on inadequacy.

Here’s my Advanced Etiquette takeaway: don’t inquire about someone’s family plans unless they bring it up. It can be a painful topic for the subfertile, the infertile, and the childfree.

Of course, men are hurt by the expectation that they must reproduce, as well, but I’m writing from the lived experience of a woman with less-than-functional womanparts. I welcome any childfree or subfertile person — of any gender — to share their experiences in the comments!

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Weight loss does NOT cure PCOS

Cat with glowing eyes

Weight loss won’t make my cat’s eyes stop glowing, either.

I really believe that if doctors stopped believing that weight loss cured PCOS, we’d have better treatment options.

I was inspired to write this post by a woman in a forum who was frustrated that she wasn’t losing enough weight to alleviate her PCOS symptoms. But even by the bullshit measure that is the BMI, she is not overweight.

Any time you look up “PCOS treatment,” “weight loss” is listed as a primary objective. This is problematic for two reasons: one, PCOS is a metabolic disorder, so weight loss is extremely difficult with PCOS, and two, weight loss does not cure PCOS.

If it did, I wouldn’t be complaining about exploding cysts, or horrible mood swings, or hot flashes. I lost 70 lbs. My weight is considered “normal” now. Where is my cure? Where do I cash in?

I ovulate now and my triglycerides are low. That is not due to weight loss. These things happened mere weeks after I started eating a certain way, while I was still obese. But my hair continues to thin. I still have symptoms. I still whine about my symptoms on this blog!

I feel like researchers are less concerned with making cysters’ lives better and more concerned with making us look more pleasing to them. Does that sound cynical? I don’t care. There is a lot of fat bigotry out there, and it would be naive to think that that’s not influencing research. Ever since I lost weight, I’ve been met with incredulity when I tell new doctors that I have PCOS. “You don’t look like you have PCOS!” they say, because obviously they can see right through my pelvis and into my ovaries.

No, I don’t “look” like I have PCOS. I’m thin. My hair is only in the beginning stages of thinning. I groom my facial hair. I nuked my acne with Accutane. My shirts cover my stomach hair. A lot of people can’t seem to get it through their thick skulls that PCOS is more than an aesthetic condition. As a matter of fact, it’s a leading cause of infertility in women. It’s a risk factor for non-alcoholic fatty liver disease, endometrial cancer, ovarian cancer, and type II diabetes. And for many women, like me, PCOS is very physically painful.

Doctors, researchers: stop focusing solely on how women with PCOS look, and start caring about how we feel. Weight loss will not and did not cure me. Weight loss will not cure anyone. Give us better options.

Tips for getting through bad ovary days, or mittelschmerz

Polycystic Ovary

What my ovaries look like. Source: women-health-info.com

Well, I’m having yet another bad ovary day. It’s not as bad as my last bad ovary day, but it’s still bad enough to force me to think critically about my pain management strategy and/or will to live.

So here we go! How to get through mittelschmerz, or pain during ovulation:

  1. Make sure it’s the weekend. You can’t just have cyst pain on a weekday — what, are you nuts? Do whatever you have to do — incantations, seances, calling up Russell T. Davies and asking him to write one more Doctor Who episode, just for old time’s sake — to make sure you have no obligations while your ovary is tethering you to the ground like a swollen, bloody anchor of human tissue.
  2. Take whatever you have that’s strongest. My doctor (like, my primary care physician, not David Tennant) gave me Tramadol for my bad ovary days. Maybe you’re more about NSAIDs — go for the Aleve. Maximum strength. And maybe a shot of whiskey. I don’t even like whiskey, but I’m considering it now — and it’s 8:56AM.
  3. Don’t move. Not even a little. Don’t walk. Don’t lean. Don’t even turn your head too far to look out the window (oh look, a pretty bird, I think it’s a cardinAGHH!). Consider investing in a bedpan, but a better move is just not to drink anything, because pissing hurts on bad ovary days. Have a caring soul blast your furnace so that you sweat all your fluids out. Which brings me to my next point:
  4. Don’t be around anyone. You’re sweating, and it’s inadvisable to walk to get your deodorant, so stay put, because every step feels like a medium-sized dog with lockjaw is hanging from your hip with its teeth. You’re going to smell. You’re going to be ornery. You’re going to want to spit poison from under your tongue at anyone who looks at you funny (this is actually a little-known adaptive ability of PCOS cysters. Try it on your friends!).
  5. Let it out. Wail. Gnash your teeth. Wear nothing but sackcloth, rub ashes all over your skin, and make sacrifices to the fertility gods. Now is not the time to be proud, cyster. Let the tears flow. Between this and the sweating, allow your body to become a dry, desiccated husk, emptying yourself of precious life force to show the cruel forces of the Universe that you are humble enough to do their bidding if it means ending this pain. PROTIP: If you must sell your soul to the devil at the crossroads, don’t just settle for a clean pair of ovaries. Make sure you at least hook yourself up with some sweet bluesy guitar skills. Do some peyote, sell your new eggs for some one-of-a-kind six-string, and do a tripped-out cover of Robin Trower’s “Bridge of Sighs.” I’ll listen to that shit all day long, cyster.

Well, there you have it — Natty’s short, simple to-do list for bad ovary days. Now, if you don’t mind, I’m going to go cry a little.

Fatigue is the most frustrating symptom

Lazy cat

This is how I feel most of the time.

Fatigue is one of my least favorite PCOS symptoms.

My polycystic ovaries are like crappy conductors of some amateur hormonal orchestra, and it’s trying to play Rite of Spring. Hormones affect emotions, stress levels, and sleep. I read someone once describe PCOS as being “like PMS 24/7,” and I kind of agree — you never know what the hormonal boogieman will bring.

My fatigue this week has been awful.

I hate fatigue. It’s not the most dramatic symptom ever, and it’s certainly nicer to deal with than, say, exploding cysts, but that’s part of what makes it so frustrating — drama can buy you attention from doctors. No periods? Dramatic as hell, I mean, ladies are supposed to get those every month, and you don’t want endometrial hyperplasia/cancer! But you’re a little run down all day? Uh, so?

Here’s how it goes when I tell my doctors about my fatigue.

They run blood tests. They run a Lyme titer because I spend a lot of time in the woods and grew up in Deerticklandia; it always comes back negative. They check my thyroid levels. My thyroid levels are normal. They check a couple of vitamins to see if I have any deficiencies. I don’t. (Friendly reminder, cysters — we tend to be low in vitamin D, so it never hurts to supplement and/or get some sunshine!) Also, I’m not anemic.

Then, they shrug. Once, my doctor gave me a vitamin B shot. It did jack shit, because my vitamin B levels are fine.

Fatigue is a symptom of PCOS. I have PCOS. Can’t that be the end of the diagnostic exploration? Can’t we figure out what to do from here? Hormonal birth control hasn’t helped me. I don’t want to take anti-androgens because my androgen levels are quite tolerable, and I’m wary of the side effects. Every PCOS treatment feels to me like dropping a nuke to remove an anthill.

Just make me less tired — can you do that?

I’m 25. I frequently experience orthostatic hypotension, and my blood pressure drops to silly low levels when I get up too quickly and after I eat. So I’m dizzy and worn out just from doing normal activities. On top of that, by about 4PM every day I find myself wishing I could turn in for the night. I don’t know how my peers actually go out and have social lives after work; this seems impossible to me. When I get home, I have barely enough energy to eat, shower, and bum around Reddit until I pass out. This sucks because this is the time I spend with my fiance. I feel like I’m a zombie when I’m around him. A zombie in love.

Not the most dramatic symptom. Probably not going to kill me. But it’s taking a decent bite out of my quality of life, so can we talk seriously about it, doctors? What do I do about this?

I drink a half-caff coffee in the morning, and that seems to get me through the early parts of the day; I am a morning person. I can work out lightly, but anything strenuous makes me want to keel over. Not because of poor cardiovascular endurance; nope, I can run for an hour without wearing out my heart or lungs. Maybe it is poor muscle endurance, but I’m actually naturally pretty strong (I mean, I can do a bunch of push-ups, at least). But my low energy levels, I suspect, are behind the fact that working out makes me feel like I have the flu. So can we fix that, doctors?

Do you experience fatigue? If so, what do you do about it? Sometimes a quick walk can give me a little more pep.  I also make sure I get lots of sleep, because clearly my body is telling me it needs it!

Medical sexism: Is PMS/PMDD real?

Two bloggers CONQUERING THE INTERNETS

Me with the lovely Lisa!

Last Saturday, I got to see one of my favorite people in the world: Lisa Sargese, Professor of Religion, social activist, healer, and blogger over at Lisa Loves Life Lessons. (Read her! She’s amazing!)

She brought up a conversation we started, but never finished, a few months ago: sexism in women’s health. We talked about the lack of good options facing women with reproductive disorders, including PCOS and endometriosis, and the dismissal of pelvic pain as being either an exaggeration or just something women have to live with.

She is brilliant, hilarious, and empathetic, and had a lot of good advice!

The conversation around medical sexism originally began when I posted a Facebook status about PMS, and another of my favorite professors commented that PMS is unheard of in some other cultures, and is theorized by some to be a condition invented for sexist reasons.

It’s an interesting thought!

I subscribe to a newsletter called Hormone Horoscope. It’s cute and kind of silly, but it sends you information about how your mood might be doing depending on where you are in your cycle, given varying levels of estrogen, progestin, etc. I take it with a grain of salt, but as someone with an endocrine disorder, I know well that hormonal changes cause big issues.

On one hand, I can totally see the point that PMS and PMDD are vague conditions that seem to lack robust research. They could be methods of silencing women and dismissing real emotions by pointing to the “hysteria” of their uteri. PMS has been caricatured in our culture as just more evidence of how “crazy” women are, as one more reason not to listen to them and take them seriously. On the other hand…

Last week, my mood was so bad that I said, “This is it!” and scheduled a doctor’s appointment to talk about my fatigue and depression.

Now, I’m still not used to this whole regular period thing, so I didn’t draw a connection between being in the last week of my cycle, my depression, and possible PMS. I just knew I was miserable.

A few days later, I got my period.

It’s been a week, and my mood has improved a bunch — Hormone Horoscope says it’s due to my rising estrogen levels. Maybe!

My conclusion? We need way more research about women’s hormones and how they affect our lives. Including research about hormonal conditions women face, such as PCOS. We need to listen to women and their symptoms and develop a body of evidence so robust that we don’t have to ask whether sexism factored in to such-and-such diagnosis or treatment.

Essentially, researchers: put your money where your mouth is.

Until then, I’ll continue to eat lots of chocolate and deal with my mood wings on the fly. I mean, seriously, I’ll always eat lots of chocolate.

What do you think? How has sexism in women’s health affected you?

I was fat for a medical reason, but it doesn’t matter

Cat with a teddy bear

Chad and a giant teddy bear ponder the absurdity of the good fatty/ bad fatty paradigm.

Ragen Chastain over at Dances With Fat has written about the Good Fatty Bad Fatty paradigm — the idea that there are degrees of virtue a fat person, already sullied by their own fat, can strive for. Now, if you know the incredible work of Ragen Chastain (seriously, read her blog — nobody does this work better than she does!), you can already surmise that she thinks this paradigm is complete and utter bullshit.

She is right.

I was a “good fatty.”

Before my PCOS diagnosis, I knew something was wrong with my body. No matter how little I ate, I still managed to sock away fat as though I were preparing to hibernate. My skin did all sorts of strange things — there was acne, eczema, and my personal favorite, acanthosis nigricans, which made the skin in my armpits darken several shades and slough off painlessly, as though I’d healed a sunburn. I didn’t menstruate. This was the symptom that convinced some people that I might actually have had something medically wrong with me. I was very not pregnant, and very not menstruating.

Still, prior to diagnosis, I felt like a “bad fatty.” Even though I worked out, even though I ate a healthy variety of foods, even though I considered something like a handful of carrots dipped in hummus a “meal” — I was told by society, and by some of the people I knew, that I had a self control problem that resulted in a wide ass.

So my diagnosis came with relief. “I’m a good fatty,” I thought. “It’s not my fault. I can throw this in their faces.”

But there is no such thing as a good fatty, or a bad fatty. (Unless the fat person is also a bad person, I guess, and kicks puppies or something.) Fat is not a measure of virtue. Fat is just a measure of fat tissue.

Period.

I was no less deserving of dignity and respect prior to my diagnosis. I was no less deserving of proper medical treatment prior to the hormone tests that showed that I had a metabolic disorder. I was no less deserving of self esteem prior to the ultrasounds that revealed I had Swiss cheese ovaries.

Everyone is worthy of dignity, respect, and access to comprehensive medical treatment. Period.

Some people are fat because of metabolic disorders. Some people are fat because of side effects of medications. Some people are fat because of illness or disability. Some people are fat because of depression. Some people are fat because of eating disorders. And some people are fat because they just happen to enjoy food in large quantities.*

All of them deserve to be respected, and to have their choices and livelihoods left alone.

Nobody deserves to be a bully. Nobody is entitled to judge another person’s lifestyle based on some observations of that person’s size or eating habits. I’m not saying I’m not judgmental. If you’re a jerk who displays jerk-like behavior, I will likely judge you. I’m not perfect, and still fight my own cultural programming and susceptibility to stereotypes.

But when I do get the impulse to judge for reasons other than mean behavior, I check that impulse. It’s a simple process. You feel the urge come on to judge, and then you question it.

All it takes is two simple questions: “Do I know enough to judge? Does this person not deserve respect?”

And you know the answer to that.


*EDIT: And, as my friend Ange pointed out, some people are fat for no discernible reason. Thanks, Ange! Whatever the reason or not-reason, all deserve dignity.

I’m ridiculously excited to have my period (you know you have PCOS when…)

Scumbag uterus: PCOS stops your periods? I'll just bleed for 20 days to make up for it.

How my life used to be.

Now, let’s not get too ahead of ourselves here. My period is still a long, heavy, painful nightmare. I don’t enjoy experiencing my period, but I’m excited as hell to have it.

I’ve had three monthly cycles in a row for the first time in seven years.

Let’s break that down a bit, shall we?

My period stopped being regular in 2006, my senior year of high school. The last time I had a regular period was before the iPhone, before Tumblr. Bush was in the White House.

One time in college, a bunch of sorority sisters knocked on the doors of my dorm suite. They were doing a scavenger hunt, and they needed menstrual pads (I don’t get it, either). Well, my room was kind of a jackpot.

“Here’s, like, 30 I won’t be using any time soon,” I said, and they pranced away gleefully with their Always booty.

When my periods stopped, some of my lady friends expressed envy. No periods, no cramps, no worries, right? Well, wrong. Because every month without a bleed was a reminder that my body wasn’t working correctly. Because when you don’t have your period for six months, you get six months’ worth of period all at once. And because I was still accruing endometrium, raising my risk of endometrial hyperplasia — and cancer.

For me, hormonal birth control (in this case, the pill) was a way to feign normality while preventing cancer. It wouldn’t give me a period, but it would at least help me shed the lining, and maybe alleviate some of my other symptoms — hirsutism, for example. So for seven years of my life, the only monthly bleeding I did was on the pill.

But the pill did more than just make me bleed. It made me bloat. It made me cry. And eventually, it made me irregular.

For over a year, the pill, far from giving me those short, manageable periods promised by those little blister packs, has made me bleed in excess of three weeks per month. In place of the twice-yearly periods I got when my PCOS went untreated, I got twice-monthly bleeds. I changed the pill several times, tried different formulations, and nothing worked. So I stopped taking the pill.

And something miraculous happened. My periods became normal.

I have reason to believe that my restored cycle has to do with dietary changes I’ve made — so the pill isn’t as useful to me at this point. But for the past few months, I’ve been experiencing a cycle. A predictable, manageable cycle. I ovulate. I can tell when I ovulate. I can tell when I have PMS. It’s incredible.

My period may be awful to deal with, but it’s still a reminder that a part of my body that didn’t work before is working now. It gives me a reason to grin through the cramps. It reminds me of a beloved Religion professor I had once, recounting how excited he was when he found out there was a Jewish prayer for going to the bathroom. He was excited because it was a reminder that even the littlest things, our basest functions are blessings, things to be grateful for.

I would never ask a woman to be grateful for the pain of menstruation, but I am grateful for mine.