Gush.
May 6, 2015 8:15 AM   Subscribe

It is not polite to say that I have no uterus. People react as though I’ve bullied them, stepped over a line. But they are the ones who pushed themselves into my body to begin with, assessing its suitability as habitation for an embryo. I’m only pointing out that, no matter how nice the curtains, how lovely the paint scheme, there’s no actual house there at all. No place to put a potential human.
--Positive I Don’t Have a Uterus
posted by almostmanda (67 comments total) 51 users marked this as a favorite
 
Great piece. Thanks for sharing.
posted by ThePinkSuperhero at 8:21 AM on May 6, 2015


I had a roommate, when I was in college, whose mother died of a vaginal hemorrhage. His father had refused to take her to a doctor, although she pleaded with him. Please, she said, please. My roommate showed me her diary, the breakdown of her handwriting as she grew weaker. The last entry was a single word, barely legible: Gush.

He was only a kid when she died.


Oh my God....
posted by magstheaxe at 8:24 AM on May 6, 2015 [11 favorites]


And politicians want to shove their religiosity all up in there too.

Powerful piece, powerful peace. Thank you.
posted by tilde at 8:28 AM on May 6, 2015 [3 favorites]


Now that I've recovered....

A friend of mine recently (like, within the last four months) had a hysterectomy precisely because of the kind of ceaseless bleeding that the author went through. She told me that she started gushing at work, drove home, got out of the car, and an enormous blood clot fell out of her pants leg.

I've heard similar horror stories from other women. Blood everywhere, endless, interminable, like a vampire's fantasy. Clots the size of D cell batteries. Passing out at work, at church, even in the car.

Why does this happen? Does anyone know? What does the research say?
posted by magstheaxe at 8:33 AM on May 6, 2015 [1 favorite]


Why does this happen? Does anyone know? What does the research say?

Things break down.

We don't have more research and information because (note, I am a layman, not a scientist) I believe it's long-game misogyny.
posted by tilde at 8:46 AM on May 6, 2015 [27 favorites]


the author's other work, including "everything a woman should have" (tw/cw: rape)
posted by and they trembled before her fury at 8:48 AM on May 6, 2015


My sister's bleeding and hysterectomy were due to fibroids; can't speak for what other causes there might be, but they can be the culprit. My mom had similar problems and got one too, so I'm more than a little scared it will be my turn someday.

I was shocked at how long the recovery period is for a hysterectomy (I don't know why), it was months before my sister was back to close to normal. Without a baby in it a uterus is a small thing, but taking it out apparently wreaks some havoc on you.
posted by emjaybee at 8:48 AM on May 6, 2015 [1 favorite]


There are days when I can’t look at parents with their children, when I fear the grief will spill over and poison everyone. And there are days when moments of beauty are scattered everywhere, only waiting for me to see and know them.

I am going to put this quote on my phone and bring it up whenever I need to remind myself that things are going to be ok.
posted by Melismata at 8:49 AM on May 6, 2015 [15 favorites]


I am infertile. I am also rude to these people because they don't know better than to say something so stupid. Beautiful, honest, painful piece.
posted by Sophie1 at 8:53 AM on May 6, 2015 [20 favorites]


Not every woman feels such a devastating loss.

I was quite happy to have my uterus and one ovary removed after years of heavy bleeding. I started my periods at 9 years, 10 months. A hysterectomy for my tenth birthday would have been a great gift. I already knew I was gay and never, ever would want to have children. I was diagnosed with endometriosis and was fortunate enough to have a gyn who didn't try to talk me into having a baby to possibly lessen my monthly agony. Six weeks recovery was all I needed.
posted by Carol Anne at 8:57 AM on May 6, 2015 [8 favorites]


Why does this happen? Does anyone know?

The endometrium is an organ, like your liver. During normal menstruation, it breaks down evenly so that it passes out as what looks like blood. Under other circumstances, it can break down unevenly, so that parts of it pass out intact. I dunno whether that's what's going on in the author's case, or if there are other explanations, but that's how I had it explained to me.
posted by KathrynT at 8:58 AM on May 6, 2015 [2 favorites]


I am infertile (for a different reason, though related, as I guess all causes of infertility would be), and also a young woman in a demanding, traditionally male dominated profession. We've advanced far enough that the men who consider themselves liberal and forward thinking seem genuinely excited to have a woman around, but they also see it as part of their progressiveness to constantly offer me advice about how to "have it all," tell me unsolicited anecdotes about female surgeons who have kids, suggest specialties that are more accommodating of a childrearing schedule, etc etc.

I know I could probably stop them in their tracks by revealing my health status, but it feels like cheating; my childrearing shouldn't be an acceptable topic at work and school, whether my body can do it or not.
posted by telegraph at 9:08 AM on May 6, 2015 [31 favorites]


Why does this happen? Does anyone know? What does the research say?

I started to have a (not quite that bad) version last March and then again in May - I only got a period about twice a year before that, with little bleeding, but suddenly I could barely leave the house.

Had a curettage, they found the first stages of cancer in there, so off I went to have my uterus and ovaries taken out. Thanks to the bad bleeding, the cancer was caught so early that this was it, no other measures necessary.

(I also only took about 6 weeks to recover, but they only went in via laproscopy and got everything out via the vagina, so there was no surgery scar. I could have gone back to work one or two weeks earlier if I had to, but... well, I didn't have to)

I was 41, and never wanted children, so I am ok with it - not having to deal with menstruation ever again is a plus, and I skipped all the hot flashes and other things you can get with menopause.

I only got very few "oh no, you can't have children anymore" comments, and those were all from coworkers who recently had their children themselves (and all seemed to think I was barely over 30).
posted by ari_ at 9:09 AM on May 6, 2015 [2 favorites]


Reminds me of elizardbits' tale of the heinous sarlaac pit.

It's weird, I didn't even know this was a thing that happened to other women -- I've spent the first two days of my cycle curled up in the bathtub vomiting and bleeding torrents for a couple of decades now, because "dbr's period" has always been materially equivalent to "regularly passing clots the size of a silver dollar or larger and just having to suck it up and deal with it because I'm in a meeting or at the grocery store or whatever" since day one, age twelve. The fact that I don't want children has been the only constant in my life for its duration, but people have never stopped telling me I'd change my mind anyway. I've worked with the same small team of folks for the past 13 years, and am fairly certain they know me better than anyone, but goddamn, the looks on their faces when I told them I was never having children... It stings. It makes you feel like they consider you less of a human being.

So sometimes I start to feel like trying to get a full-on hysterectomy (Because Health, i.e. my periods are insanely heavy and NINE DAYS LONG) might be easier than trying to get my tubes tied (because there's no reason to do that unless you're -- gasp! -- willfully ceding your status as a would-be child-bearer). Still, I've definitely already gotten the message loud and clear that most of the people in the world consider my purpose on this earth to be 100% uterus-related regardless: be fruitful and multiply, woman, whether you want to or not.
posted by divined by radio at 9:19 AM on May 6, 2015 [22 favorites]


it is actually the 1 year anniversary today, and i'm gonna have cake.
posted by poffin boffin at 9:21 AM on May 6, 2015 [75 favorites]


People react as though I’ve bullied them, stepped over a line. But they are the ones who pushed themselves into my body to begin with

I end up in a very similar conversational place pretty often, when people ask if my wife and I are going to have another kid (the undertone being that time's a-wastin').

The great majority of the time, I have the patience and equanimity to keep things light. They're being nosy, but they're not being actively nosy; probably they even think they're being polite.

On worse days, or if the person is stepping over some invisible line that I can't even really define, I give them both barrels. "Nah. We tried that once, but the body count was too high." Then I flash a smile with just a little too much teeth.

It's an odd thing, sitting on top of something invisible that's so volatile. Like walking around with a bomb that anybody can detonate, accidentally.
posted by gurple at 9:25 AM on May 6, 2015 [21 favorites]


it is actually the 1 year anniversary today, and i'm gonna have cake.

Yeah!!!

BEST WISHES CONGRATULATIONS ON YOUR NEUTERING [ANNIVERSARY]!
posted by divined by radio at 9:28 AM on May 6, 2015 [11 favorites]


My uterus is still intact though I got my tubes tied for medical reasons almost 15 years ago. This piece spoke to me deeply even though I'm happily child-free. Thanks for posting it.
posted by immlass at 9:32 AM on May 6, 2015 [2 favorites]


Recovery varies for hysterectomy. I had one (grapefruit-sized fibroid cysts, bleeding to my knees, yadda yadda) when I was 37(?) the bikini-line incision kind. I have a physical job but was back at work (very tired and doing half-days) in four weeks, back doing all the things for a full day in six weeks. I heal up rapidly from injuries, and this was no exception.

I never had kids, never wanted kids, and didn't feel an overwhelming loss on the removal of my uterus. I mean honestly, I wasn't planning on using it for babies anyway. My period-having life was mostly a time of annoyance and I would have opted out of the system far earlier than I did if I could have found anyone willing to remove the ability to have periods from a "perfectly good" uterus. (I tried. More than once, I tried. You Will Want Children Later, they said. No, I won't. I feel like I said that a lot of times, but nobody ever listened.)

My experience is my own, though, and another woman's might be far different. It doesn't make me wrong or her right or the other way 'round. People can have a variety of different responses to the same situation and that's OK.
posted by which_chick at 9:36 AM on May 6, 2015


There are two main categorizations of dysmenorrhea. Secondary, which is what I had and got my hysterectomy for, is caused by a condition such as fibroids or endometriosis; and primary is pretty much idiopathic, I guess. Which I strongly suspect, based on my experiences with medicine, is "We can't be fucked to find out."

Every now and again, I'll find some thing on the internet where medical professionals are telling stories about annoying patients and people clogging up the ER and stuff, and there is almost always someone claiming that it is a regular, everyday thing for adult women to show up in the ER and be diagnosed with normal menstruation. And I'm positive--no doubt in my mind--that those people are sending sick women home to suffer and possibly die.

Adult women do not regularly get confused or frightened by normal menstruation, not in those kind of numbers. Dismissive medical personnel just don't believe them when they tell the truth. I had such severe hemorrhaging that I had heart palpitations and sometimes couldn't walk all the way across my house. It was so severe and prolonged that sometimes for months at a time (I think my record was six months of constant heavy bleeding), I couldn't sleep for more than two hours at a time because I'd have to get up and replace everything. And even then, I'd still wake up looking like a crime scene all the time. But I got blown off too and sent home sick by people who didn't believe me.

When I got to the point that I couldn't even commute to work anymore, much less work, I was probably just lazy and attention seeking.

And it wasn't until someone at Planned Parenthood said to me, "This is not menstruation. You are hemorrhaging, and your son could come home from school some day and find your body" that I fully understood that this wasn't just something I could tough out.

I have a theory that, because we treat normal menstruation like a pathology, we don't have the context to recognize when it is truly pathological. We don't really know what's normal and what isn't. It wasn't until I got a cup and was able to objectively measure the volume that I realized just how bad off I was. And that was the number that finally got a (non-PP) doctor's attention, and then, after something like seven or eight years of trying to find help, I was fast tracked for an "emergency" hysterectomy.

We need to stop pathologizing normal menstruation. Stop prescribing iron supplements to adolescent girls as a prophylactic, stop telling them that periods are anything but normal and healthy, and clamp the hell down on anyone who acts like there's anything gross or embarrassing about it, like those whiny manbabies who are always so put out by any mention of tampons or pads or whatever. Because when we act like it's all pathological and weird and gross, we lose the ability to recognize when it really is.

I am positive--not 99% but 100%--that women die from this sort of ignorance all the damned time. Their own, their doctors and nurses, their families and friends. Normal periods are not debilitating. If your period is debilitating, it is not normal.

(And I know not one but two people whose moms died when they were very young from some sort of bleeding thing that was never explained to them.)
posted by ernielundquist at 9:43 AM on May 6, 2015 [133 favorites]


Why does this happen? Does anyone know? What does the research say?

Endometriosis is another culprit. It's also another medical condition that is not very well-researched at all. Which I know because I have it. It almost killed me; I've told the story here before. TL;DR, large ovarian cyst twisted around, burst, caused hemmorhaging. I'd had hemmorhaging-type periods since age 12, debilitating cramps, they'd last anywhere from 7-10 days. Bleeding all-out for the whole time, not that well-behaved curve, oh no, blood and clots ahoy for at least seven days.

People would regularly call me "irresponsible" because of it. They told me this while I was coming to school early and leaving late for several extra-curriculars, taking multiple AP (translation for non-US people: college-level) courses, and pulling a 3.98 GPA (translation: top of my class). But put on the maxi-est of maxi pads and have it overflowing before my 45-minute class was up, well, that made me irresponsible.

I'd have died from hemorrhaging at age 22 had it not been for living in Finland, i.e. socialized healthcare and far from family influence. I walked from my place to the Helsinki women's hospital, which, thank deity, was a few hundred metres from my apartment. They operated ASAP, didn't even wait for my recently-eaten dinner to digest (see also: anesthesia) because if they had, as they explained to me, "I would be dead from the bleeding." In the States? Oh, family told everyone I was exaggerating, and told me it was punishment for being satanic, sinful, what have you. Passed out from the pain a few times and they never took me to see a doctor. So yeah, I'd have been that roommate in a parallel life.

After that, the Pill saved me. I can live now. I'm one of the lucky women for whom hormones manage cysts. It's not the case for everyone. We need to learn why, because being stabbed in the gut repeatedly once every month or so is not acceptable. (That's how it feels. Seriously like being stabbed in the gut. I've torn open and burned various areas of my body in accidents, been knocked out by baseball pitches, punched by various unkind weirdos, cut my fingers open accidentally, etc., and all of it is nothing compared to the cramps I get when I'm not taking the Pill. NOTHING. Women with endo who are able to have children say that even birthing cramps aren't all that bad in comparison.)
posted by fraula at 9:46 AM on May 6, 2015 [38 favorites]


On worse days, or if the person is stepping over some invisible line that I can't even really define, I give them both barrels. "Nah. We tried that once, but the body count was too high." Then I flash a smile with just a little too much teeth.

People need to just shut the hell up about bugging others about having children. We have a 3.5 year old little boy now, but he was our last-ditch hail mary pass. Before we had him, when people would ask why we have no children, I'd just bluntly tell them "Because my wife has had 3 miscarriages" and stare them in the eye. They'd stammer and lamely utter a weak apology.

If someone has no children, there's probably good reason why, even if that reason is simple choice, and people need to butt out.
posted by Fleebnork at 9:47 AM on May 6, 2015 [50 favorites]


Man, I wish I could be as eloquent as Caitlin Myer about the whole experience. I was generally pretty certain I was never going to have children anyway before my surgery became necessary, but it was nice to still have the "oh, maybe someday" card to fall back on during those awkward social moments.

The moment it sank in that I had maybe been playing the "oh, maybe someday card" on myself, too, was when they took me for the pre-op ultrasound. All four walls of the GYN ultrasound room were lined from floor to ceiling with stills of fetal ultrasounds matched up with photos of the preternaturally adorable babies they had eventually turned out to become. I don't care HOW sure you are that you're not having a baby, that is just plain cruel.
posted by The Underpants Monster at 9:48 AM on May 6, 2015 [13 favorites]


It makes you feel like they consider you less of a human being.

They might, even if subconsciously. When people go on and on about how having children is the best and most challenging thing you can do, blah blah blah, it becomes a very short line to draw that those who don't have children are missing out on the full experience of being human, and those who can't are incapable of that full experience.

probably they even think they're being polite

Nonexistent god save me from "good people" who are incapable of imagining that their "goodness" might be unwelcome.

people need to butt out

Fuckin' A.
posted by Steely-eyed Missile Man at 9:52 AM on May 6, 2015 [16 favorites]


my mom got her hysterectomy (endometriosis) when she was in her early 20s - after having 3 kids. my periods have always been awful (started early, bleeding through everything the first 2-4 days, sometimes twice in a month, sometimes 10 days long, cramps that no pain killer can even touch, etc etc). every single time i've tried to talk with my gyn about it (different doctors, states, ages) they all laugh at me, brush it off, try to get me on birth control, and when i refuse they drop the topic entirely. i'm sure i could push for a hysterectomy at this point, but my periods are just not bad enough so my anxiety makes me shut up and deal with it. i'm trying to work up the eggs (haha) to get them to at least do more than just a pap smear.

and they always ask me, on their way to ignoring me, if i want kids and when i say no it's like there's no urgency to fix whatever is wrong with me - it's not getting in the way of fertility so it must not be a real concern.
posted by nadawi at 10:02 AM on May 6, 2015 [2 favorites]


My aunt had to bleed for over 3 years, in her late 50s, before she could get her GYN to agree to a hysterectomy.

My mother bled heavily, non-stop for a year before she got anything more than casual treatment for it. And that only because I refused to drive 4 hours to go to Thanksgiving dinner when she couldn't stand up long enough to get ready to leave. The ER gave her 2 units of packed red blood cells. She had surgery a month later and the doctor found a fibroid the size of a satsuma that they couldn't see on ultrasound.

I figure it is just a matter of time for me. Right now I take birth control pills, and they work, but I'd happily have my uterus removed because I'm not using it for anything and I don't want to suffer what my mom went though, but it isn't going to be that simple.
posted by monopas at 10:07 AM on May 6, 2015 [2 favorites]


This post really hit me even though I still have all of my parts. The same sorts of things and comments happen regardless. I'm tired of this feeling that I somehow owe an explanation about why I don't and won't be having kids. With some people it just seems to be a default that this is what you do in life.

I was always fairly ambivalent about having them. If I was in the life position where it made sense I might and if not, that's okay. I've just never had the drive like my sister has had. She has wanted kids so badly, tried for years and now, just this morning actually I found out that they have been matched with a young child for adoption. I am absolutely overjoyed for her! I'm not experiencing any pangs at the news so I figure I'm okay with the non kid status.

In my early 40's I'd be pushing the fertility window even if I decided to have one now. You would think my age would be enough to stop the inquiries from people who know how old I am. Saying I'm too old doesn't always work. "Oh lots of people have kids in their 40's" It's made worse by the fact that I regularly get mistaken for 10-15 years younger, so right in the middle of 'having kids age'. I've already been getting the questions since I was actually that age and am just tired of it.

Now I just smile nicely and respond bluntly, "I can't have em", and indicate with tone and expression that any more conversation about isn't going to happen. Even this seems to make people feel uncomfortable and I get apologies. I ignore it and move on. If they want to stand there and wonder what "I can't means" and be all sad and feel sorry for me, so be it.
posted by Jalliah at 10:15 AM on May 6, 2015 [3 favorites]


I can't help connecting this to abortion; nobody thinks we own our uteruses, or can be trusted to know what to do with them, because we're women, and obviously women can't possibly understand the ramifications of such a profound decision as getting a hysterectomy. Also, they get excited over silly things and just want attention for their silly little cramps and bleeding! Silly women. Doctors know what's best for you! Also random dudes on Fox News, your legislators, your husband/boyfriend/father/any male anywhere. They all feel entitled to tell you what you can do with that uterus, but mostly, what you can't do.
posted by emjaybee at 10:15 AM on May 6, 2015 [36 favorites]


Next week is my wife's four-year follow-up appointment.

(Full hysterectomy following bleeding, fibroid removal ... and the discovery of stage 1a endometrial cancer (caught so early the 5 year survival rate is over 95% after surgery without chemo). Unfortunately it required fairly brutal abdominal surgery -- the phrase "a fibroid the size of a grapefruit" was used -- and followed by 3-4 years of the menopause from hell.)

As her partner, I figured it was my job to support her through it: end of story. The only nudging I gave was when she got depressed and spoke about possibly declining treatment. That was depression speaking, and I'd rather she was mad at me than dying painfully. And now she's neither angry with me nor dead, so I'll call it a conditional win.

Note: her GP, gynecologist, and clinical oncology consultant were/are all female.
posted by cstross at 10:41 AM on May 6, 2015 [14 favorites]


This piece makes me feel guilty for the shit I've taken for choosing a tubal ligation. Some is similar, but at least my decision was actually based on not wanting children and it never is painful, really, because I'm rather proud of taking charge of the decision. It irks me that when I say I can't have children, people now assume I mean because of menopause, even though that has only VERY RECENTLY been true.

I'm going for a consult with a new medical provider this week and in her new patient questionnaire she asks what form of birth control I use. My answer: "Primary: tubal ligation. Secondary: menopause." See? Way too proud of my spay.
posted by janey47 at 10:48 AM on May 6, 2015 [2 favorites]


It makes you feel like they consider you less of a human being.

They might, even if subconsciously. When people go on and on about how having children is the best and most challenging thing you can do, blah blah blah, it becomes a very short line to draw that those who don't have children are missing out on the full experience of being human, and those who can't are incapable of that full experience.


This is the thing that bothers me most of what people say to my being childfree. Just because it took having a kid for you to understand what deep selfless love is, doesn't mean I can't also understand that without having had a kid.
posted by fiercecupcake at 10:52 AM on May 6, 2015 [16 favorites]


I am having a particularly brutal period right now but reading this reminds me that I need to get my bits checked. I am due for that. There was a brief time in my 20s when I was having insanely heavy periods and after running all these tests, my gyno couldn't figure out why it was so bad for me. I have asked repeatedly and to various doctors over the years that I would really like the option to have my tubes tied because I do not plan to have and do not desire kids. I think you know how that's gone.
posted by Kitteh at 11:03 AM on May 6, 2015 [3 favorites]


Just because it took having a kid for you to understand what deep selfless love is, doesn't mean I can't also understand that without having had a kid.

Just go to AskMe and hang out and you can see how having a child did not in any way lead to unselfishness or enlightenment for lots of parents--which is why their grown kids are on AskMe trying to deal. I think it's safe to call BS on this trope. Having a kid can give you insights and make you stretch yourself. So can joining the Peace Corps, or having pets, or taking care of an elderly relative, or being an advocate for social justice, etc. etc.

Or you can do all that and still be an asshole. People have!
posted by emjaybee at 11:11 AM on May 6, 2015 [27 favorites]


God, the fact that it's possible that our only solution is hysterectomy because we don't understand what's happening to women's bodies because hahahah we're not important or anything, right?

Fuuuuuuuuuuuck.
posted by corb at 11:25 AM on May 6, 2015 [2 favorites]


emjaybee: I can't help connecting this to abortion; nobody thinks we own our uteruses, or can be trusted to know what to do with them, because we're women, and obviously women can't possibly understand the ramifications of such a profound decision as getting a hysterectomy.

I've always heard that obgyns/urologists would turn away patients seeking hysterectomies/tubal ligations/vasectomies on younger people due to fear of lawsuits if the patient comes knocking later with a change of heart. Is there really a precedent for a patient suing over an irreversible sterilizing procedure or is this paternalism/defensive medicine run amok?
posted by dr_dank at 11:42 AM on May 6, 2015


There was a pretty extensive thread about seeking permanent birth control in January. I know that's not an answer to your question, but many people here have already told their stories if you're interested.
posted by almostmanda at 11:48 AM on May 6, 2015 [3 favorites]


"But what if she changes her mind, like a crazy person?"
posted by mikurski at 11:52 AM on May 6, 2015 [4 favorites]


IANAL but I take a side-eye to "oh no you'll sue me if I let you get one" because a whole lot of medical malpractice suits, even where there's actual malpractice, still end up favoring the doctor. If you sign a release, the doctor has a lot of legal cover, unless you can prove he or she coerced you, which would be difficult to fake. Also, doctors do lots of irreversible things to patients as part of practicing medicine, why should this be any different? Heck, plastic surgeons could make an even stronger argument about patient regret, but you don't see them refusing much in the way of procedures.
posted by emjaybee at 11:55 AM on May 6, 2015 [7 favorites]


Fantastic.
posted by odinsdream at 12:01 PM on May 6, 2015


Great article, thanks for posting.

People I meet now are often surprised to know that I wanted kids. It doesn’t fit with the picture I make. I love my solitude, my independence. No obvious maternal qualities. But this is who I’ve made myself. I chose a part that was always there, and amplified it.

My husband and I are infertile for different (possibly fixable for lots of money we don't have) reasons, and very few people know this about us. Certain parts of this article have described my coping strategies with this so, so perfectly.

It doesn’t always hurt when I see a mother with a baby.

I've had to cultivate my Facebook feed to hide all of the pregnancy and baby posts; while I'm very happy for my friends and love their children, the sheer quantity of that on social media can sometimes bury me in grief.
posted by rhapsodie at 12:08 PM on May 6, 2015 [5 favorites]


@ rhapsodie, I think some of the kids and family posts are serious over-compensation for difficult lives.

Some of the biggest 'kids and family and sweet puppy/kitten' posters that I personally know have massively difficult life situations. Job loss, illness, etc.

They're comforting themselves with the only beauty there is in their lives.
Of course ymmv. :)

I had a tough time with my girl parts, and frankly, although I love my children and grand-children, I might have been better off with neither children nor periods.
posted by Katjusa Roquette at 12:36 PM on May 6, 2015 [2 favorites]


ernielundquist: I couldn't sleep for more than two hours at a time because I'd have to get up and replace everything. And even then, I'd still wake up looking like a crime scene all the time. But I got blown off too and sent home sick by people who didn't believe me.
The problem for me was that after multiple male and female doctors and gynecologists (I didn't just get ONE second opinion on this issue) told me that my periods were normal, I accepted it and assumed that level of bleeding (and pain) was just something I had to live with. It wasn't until I went for treatment for infertility that a (new) gyno suspected fibroids, did surgery and found my uterus was nearly 75% full of them. Multiple ultrasounds had not picked up on them and no one before this guy thought to ask just exactly how heavy my bleeding was every month.

After the surgery, the post-op recovery nurse told me if I had excessive bleeding I needed to come back to the hospital. I looked her in the eye and said, "You are going to have to tell me exactly what 'excessive' means, because I honestly do not have a metric anymore for what 'normal' bleeding is." It turned out that the amount of bleeding that warranted a trip to the ER was basically what had been my "normal" periods for the last several years.
rhapsodie: "People I meet now are often surprised to know that I wanted kids. It doesn’t fit with the picture I make. I love my solitude, my independence. No obvious maternal qualities. But this is who I’ve made myself. I chose a part that was always there, and amplified it."

My husband and I are infertile for different (possibly fixable for lots of money we don't have) reasons, and very few people know this about us. Certain parts of this article have described my coping strategies with this so, so perfectly.
I'm glad that we have told more people now about our struggles and losses, because the sympathy and support is something I really appreciate, but I do have a secret horror of being pitied.

The last few years have been hard--infertility, surgery, pregnancy loss. Most days I feel OK, but right now I'm trying to think of ways to cope with Mother's Day this Sunday. This is the one where I was supposed to be a mom, and frankly, Sunday will be one big reminder that it didn't happen after all.
posted by hurdy gurdy girl at 12:40 PM on May 6, 2015 [14 favorites]


Not pity, hurdy gurdy girl, empathy. Knowing. I'm so sorry for your losses and I hope you find a way to treat yourself well this Sunday.
posted by Sophie1 at 1:14 PM on May 6, 2015 [1 favorite]


The Underpants Monster - I was generally pretty certain I was never going to have children anyway before my surgery became necessary, but it was nice to still have the "oh, maybe someday"

I was pretty sure I was never going to have kids, but I found having a hysterectomy at age 32 meant that it was one less decision in my life - suddenly, there was no awkwardness around the question... "Sorry, I can't have kids." Cancer makes it a bit less awkward than "uncontrolled bleeding with giant chunks" (although I had that, too: weird bleeding, ceaseless spotting, and chunks - oh god, the gelatinous chunks). Cancer is nonnegotiable, at least after actual diagnosis, though. I didn't know it going into the surgery, which we thought was to remove a precancerous organ, but after it was determined to be past the point of calling it cancer, then you can pull out the "C" word and then some kind of waffling from others like "oh, but it was just uncomfortable for you, if you really wanted maybe ..." gets shut down and fuck you very much for pushing me on the question.
posted by rmd1023 at 1:20 PM on May 6, 2015 [2 favorites]


Also, this: "My roommate showed me her diary, the breakdown of her handwriting as she grew weaker. The last entry was a single word, barely legible: Gush."

That's the most chilling and horrifying thing I've read in a very long time. It's like "The Yellow Wallpaper" writ large with a grinning Death in shades of dark crimson-tinged coffee grounds and bright arterial red.
posted by rmd1023 at 1:23 PM on May 6, 2015 [8 favorites]


This was an incredibly moving piece that hit a little close to home for me. And though I don't relate to the sense of loss the author feels for not being able to have children, or how it seems to impact her identity as a woman -- I can certainly relate to the callous and flippant nature that most medical professionals, and people in general, tend to treat women suffering from menstruation/uterine-related illness and childlessness.

I experienced incredibly painful menses from the start (around age 14). I could count on spending at least 10 days (usually more) a month holed-up indoors, writhing in pain and discomfort and alternating between moving as little as possible on my bedroom floor (flow was heavy and even the thickest pads would 'leak'; I was paralyzed by fear and shame) and living in the bathtub. Food was unappetizing thanks to painful bloating -- my stomach was always bubbles and knots. Nausea would come and go, and often times I felt light-headed and dizzy. These symptoms would exacerbate other ailments I had to deal with (such as seizures). I had no quality of life during my periods -- absolutely none. I was nearly 15 when I first saw a doctor (military; cis het man) -- who immediately dismissed my concerns, informed me that 'heavy menstruation and PMS is normal' and prescribed me Motrin. This didn't placate me as he probably hoped -- I knew something wasn't right and he seemed willfully ignorant of (despite being privvy to) my family history (my mother had awful endometriosis and a hysto at a young age). So I continued to regularly return to the doctor -- they were usually different each time, but always military doctors (per insurance) and always cis het men who, even if sympathetic to my pain and loss of quality of life, didn't seem inclined to do anything about it except throw Motrin, weight loss advice, or anti-depressants at me. They simply did not seem to relate or understand. No tests (including blood tests) were ever ordered until, at age 16, my mother eventually sat in on one of my appointments and advocated on my behalf because of previous experiences with misdiagnosis/incompetence by military doctors.**

That was enough to motivate that particular doctor, who finally agreed to a test: a pap smear. When the pap couldn't be performed because my hymen was intact, the doctor insisted all of the problems with my menses over the years were because of that reason -- and he could just 'break' or 'cut' my hymen to solve the problem. Being a young, asexual virgin, his suggestion terrified me -- and angered my mother, who refused to leave the office until an actual test was performed that didn't involve my being 'cut'. This resulted in a wand-assisted ultrasound -- also performed by a cis het man (who thought my 'tightness' was hilarious). The results were inconclusive. Symptoms just seemed to get worse and eventually I started inquiring about a hysterectomy. That was immediately dismissed with patronizing reasons such as:

You're too young to make that decision
You're still a virgin
You'll want children (if you say no/never, it's followed by 'You'll change your mind')
What if you meet a nice guy that wants kids?
What about your parents and grandchildren?

It didn't matter that I had been adamant and unwavering about not having children for over a decade (yup, still hasn't changed either). It didn't matter that I was in excruciating pain for nearly 2 weeks every month. It didn't matter that my quality of life and emotional health was drastically affected. It didn't matter that my mother tried to advocate on my behalf -- knowing I was walking the same line she had in her fight for treatment. It didn't matter that I was a transman and preparing to live the male experience. But mostly it clearly didn't matter what I wanted --- all that mattered was that I had female reproductive parts and some day I could have babies. The military doctors I encountered (all cis het or bi/gay men) were dismissive right up until the very end of my insurance coverage with them.

Despite their efforts, I did eventually get a full hysterectomy. I found a sliding-scale, trans-friendly women's health clinic in a more liberal city 2 hours away and had a very pleasant, eye-opening first appointment with the doctor (a cis bi/gay woman). I told her everything and she agreed to do a full hysterectomy after my 2nd appointment with her, where she delicately performed a pap (without having to cut my hymen). The surgery went well and recovery time was about 3 months; I found the spotting distressing (as I was living the male experience by that time) but otherwise I felt insanely better.

What's infuriating to me is that I dealt with all this patronizing, misogynistic garbage over a decade ago, and despite our supposed advances in equality women are still dealing with this behavior from professional adults overseeing their care. That's ridiculous. Women shouldn't have to endure being shamed, ridiculed, guilted or bullied by others (including doctors) just for wanting to exercise agency over their own bodies. Or for choosing NOT to have children. But it seems the notion that a woman = uterus = baby maker is still alive and well and it really sucks.

** Military doctors' incorrect diagnosis, in just my family alone, has resulted in my father having to get a bone graft in his jaw (after an infection went misdiagnosed/left untreated), my mother having to get additional surgery to remove part of an ovary (left behind after her full hysterectomy), my mother having to get her toe amputated (after a post-surgery infection was dismissed/left untreated), my sister having to wear casts on her fingers for months (after her very broken fingers were misdiagnosed as a 'sprain'), my having to have emergency gall-bladder removal surgery (after a year of military doctors insisting I 'pulled a chest muscle' and was too young to have gall bladder problems), and my having to spend over a week in the hospital post gall-bladder surgery (because the misdiagnosed, infected gall bladder ruptured inside of me right before the surgery was performed, spilling an infection into my chest cavity; yes, I almost died). IME, military doctors are dismissive to the point of negligence -- especially towards women.
posted by stubbehtail at 1:45 PM on May 6, 2015 [15 favorites]


Not every woman feels such a devastating loss.

I've told the "I had ovarian torsion" story on MeFi before, but there's a detail I don't always tell -

By the time the ER doctors had a theory that that was what had been going on, I'd been in excruciating abdominal pain for about 5 hours. But when the doctor came to tell me what was going on, and that I may have to have that ovary removed, you could tell he had prepared a carefully-rehearsed speech: "So, we think you may have ovarian torsion, and we need to do some emergency exploratory surgery to see how bad it is - and if it's bad enough, we may have to take it out. But don't worry, you have two ovaries and the other one will still be good, and you'll still be able to become pregnant some day, so it's fine..."

But I was in so much pain that he only got as far as "....we may have to take it out, but don't worry, you still have two ovar-" before I was interrupting him to say "WHATEVER I DON'T CARE DO WHATEVER YOU'VE GOTTA DO JUST STOP THIS PLEASE BECAUSE IT MOTHERFUCKING HURTS!"

And after the surgery, when they confirmed that it was ovarian torsion, my mother and I asked the doctor "but....how does that happen??" And he just shrugged and said, "sometimes it just...does." Neither mom nor I was very happy with that answer ("there has got to be a REASON one of your body parts will spontaneously just DO THAT"), but - nope. We don't know. I even ran into that when I finally got to talk to my own doctor; he had to look the thing up in her desk reference, and while there was a list of symptoms that i matched, there was nothing about the cause of ovarian torsion. It simply was a big ol' weird thing.

But that also kind of gave me a huge dose of freedom. In that same visit, my doctor told me that my fertility would be affected a bit; with only one ovary, I would most likely only be fertile every other month. She reassuringly told me about how I could track my fertility with a lot of ways, but I remember thinking, "well, hell, I can also just adopt because that sounds way easier." And "I can always just adopt" has pretty much permanently silenced the ringer on my biological clock - I didn't have to tie being a mother to my body's fertility any more, I could wait to do it when I was ready and when the time was right.

I'm 45 and in the early stages of perimenopause now, and adoption will most likely now be the only option open to me, and I am totally fine with that.
posted by EmpressCallipygos at 1:53 PM on May 6, 2015 [6 favorites]


Footnote to my comment - I'm aware now, of course, that adoption isn't always that easy either. "I can always just adopt" was the thinking of a 26-year-old me, but I've since synthesized that into "I have the freedom to only choose to have children if I decide I really seriously want them, and I can leave the functioning of my own body out of the equation entirely." Which is more like how my mind is now.
posted by EmpressCallipygos at 1:57 PM on May 6, 2015 [7 favorites]


I'm live-and-let-live, meaning if your bodily reproductive organs are at odds with your health (mental and physical - hormone emissions do more than inform fertility BTW) or life plan - there is no pressure from me. I do have the occasional thought for people that I deeply respect that they are working with the next generation to pass on, and further develop their legacy - biological children have more freedom, so this can be a more inclusive path.

The Octavia-Butler-influenced side of me wonders if the misogyny is really a coded way for the 1% to maintain easier control over the people-production-process because we need abundant laborers to keep wages low, and if Ebola or some othe plague knocked out x% of the workforce, surgical female sterilization, or even effective long-term female birth control that is easily available regardless of SES, can be an equalizing force for the responsibility for population volume.

Bill Nye answered a question last night on the Larry Wilmore show about why men have nipples. He should have mentioned that the default setting for an embryo is female, and if men were truly interested in alternate pregnancy options that involve men as carriers, even if it means 9 months of bed rest. This is an area where scientists interested in transgender issues can help infertile couples who don't have viable plumbing, but want a child, find options that rebalance what women have carried throughout time. Women would no longer feel so targeted for procreative expectations, which fuels so much of the well-stated FPP.
posted by childofTethys at 2:44 PM on May 6, 2015 [2 favorites]


Too many interruptions, so I missed the edit window. My sentiment for people I respect is there are so many ways to pass on legacies, such as mentoring, that the whole pass-it-on-to-your-biokids is limited thinking.
posted by childofTethys at 3:00 PM on May 6, 2015


"regularly passing clots the size of a silver dollar or larger and just having to suck it up and deal with it because I'm in a meeting or at the grocery store or whatever"

Wait, are there people who don't pass clots - because I've passed ones I'd swear were a miscarriage if I didn't know I was celibate. My ovaries seem to alternate - one is nice and gives short periods, and the other is like "fuck you, bleed" The worst was when my period went on for a month. I didn't go to anyone about it, and when I told my doctor she dismissed it as "stress" which may or may not be "fat bodies do the wrong thing"; jury's still out.

A friend had bad cramps but had never tried Advil - now that I know some people don't know, Advil can help a lot with mild cramps and in my experience also increases flow. Also, in the spirit of dealing with heavy periods, adult diapers are killer awesome for dealing with overnights if you're tired of waking up in an abattoir.
posted by Deoridhe at 5:10 PM on May 6, 2015


It's disgusting how some people feel entitled to an opinion on perfect stranger's bodies, lives, on whether or not they should have children. Fuck 'em.
posted by signal at 5:50 PM on May 6, 2015


i advise this in pretty much all period-related askmes but will reiterate here: do not be embarrassed or afraid or whatever to EXPLICITLY AND GRAPHICALLY describe your periods to your doctors. talk about huge clots, talk about cramps that give you diarrhea, talk about pms that exhausts you more than a bad bout of flu. talk about how a single sneeze will cause a horrible spurt that gushes past your fully saturated super plus tampax after just an hour or so of wear. talk about how the only underwear you own anymore is "period underwear" and the only non-ruined pants you own are black.

if your doctors don't listen to you, or handwave away your wholly valid concerns, or make you feel foolish and like an imposition for insisting on a better standard of care, then go to another doctor and don't stop until you find someone who will actually provide you with the medical care you need and the respect you fucking deserve. we are indoctrinated at a horrifically young age to believe that our pains are exaggerated and that we shouldn't make a fuss and that someone always has it worse so therefore it's not as bad as it seems, and it's some godawful insidious fucking bullshit that we desperately need to overcome both as individuals and as a society.
posted by poffin boffin at 5:54 PM on May 6, 2015 [44 favorites]


talk about how a single sneeze will cause a horrible spurt that gushes past your fully saturated super plus tampax after just an hour or so of wear.

and this is where i started to cry. thank you for speaking about this stuff, poffin boffin.
posted by nadawi at 6:14 PM on May 6, 2015 [8 favorites]


I'm a uterine cancer survivor and I wholeheartedly endorse everything poffin boffin says in the comment above. If I hadn't actually told my doctor in detail about what was going on and just figured "hey, yeah, big gelatinous chunks are normal for me now, I guess", I wouldn't have a story about how my 'preventative' hysterectomy caught a just-turning-cancerous uterus and surgery fixed things, but instead would probably a much longer sadder story that involved chemo or radiation or other un-fun things.
posted by rmd1023 at 6:15 PM on May 6, 2015 [5 favorites]


well, surgery fixed things except for the fact that my ovarian cancer may have started at the same time, but happily I got out of that one with just surgery, too, a little over five years later when I had strange back pain that turned out to be torsion from a big-assed tumor and its friends, and still I had no chemo or radiation because I had the least ambitious cancer known to medical science. It was like the "sit around and get high and watch tv" of cancers, which is to say, very slow growing tumors and not "ambitious aggressive wall street banker 'greed is good' type A personality" cancers.
posted by rmd1023 at 6:20 PM on May 6, 2015 [19 favorites]


...those tumor classifications need to get into medical journals.
posted by Deoridhe at 6:40 PM on May 6, 2015 [11 favorites]


fat bodies do the wrong thing

Oh yeah. I get a lot of that handwavy fat shaming too.
posted by tilde at 7:41 PM on May 6, 2015 [4 favorites]


if your doctors don't listen to you, or handwave away your wholly valid concerns, or make you feel foolish and like an imposition for insisting on a better standard of care, then go to another doctor and don't stop until you find someone who will actually provide you with the medical care you need and the respect you fucking deserve..

So much this.

For my partner it took not just firing multiple doctors but my going along as the authoritative male voice to actually get her a reasonable standard of care. That's not right in any way and it still makes me incandescently angry when I think about it. For me to be listened to while she was dismissed is so fantastically wrong and disgusting, and symbolic of so much that is wrong with medicine here.
posted by Dip Flash at 8:17 PM on May 6, 2015 [3 favorites]


When I was a teenager I thought it was normal to throw up once a month because of period pain.

A few years after first getting my period, I was working in the medical records department of the clinic where I was also a patient, and I decided to take a look at my chart. The description in my chart for my debilitating, vomit-inducing pain: "mild dysmenorrhea."

MILD. I'm still baffled that my kind-seeming gyn could have written such a thing.
posted by heisenberg at 9:33 PM on May 6, 2015 [2 favorites]


I've always gotten very light periods because of PCOS, but when my mother was pregnant of my little sister she complained about pain and was told that it was totally normal and not to worry. She got a hysterectomy a few days after delivering my sister because of a 2kg+ cyst that hadn't been diagnosed through the pregnancy.
posted by sukeban at 12:07 AM on May 7, 2015


As a teenager, I had the worst cramps. Truly awful. My mom took me to an OB-GYN, female, when I was 18 or 19 to see if maybe birth control would help.

The doctor, and I quote, said, "You're overweight. You should focus on exercise and cutting caffeine and seeing if that helps. You have free access to a gym in school, you should take advantage of that!"

I was so mad, so pissed that I was expected to PAY for this kind of ham-fisted advice that I didn't go back to an OB-GYN for years. I moved to a new city, and found out my insurance offers free OB-GYN physicals, so I sucked it up and took them up on it. At least I wouldn't have to pay to get scolded this time.

My current one isn't thrilled with my weight, but at least she gave me an IUD without any pressuring and actually encouraged me to get it, given my complicated family and personal health histories. She listened, and I'll recommend her to anyone who asks because of it.

I love having my IUD. It's changed my life. I don't have a period, I do get cramps sometimes, and spot sometimes, but far and away, it's better from the "curling up on my dad's desk and wanting to wilt away until the painkillers kicked in" feelings I had as a teen.

So, I'm still mad at you, first OB-GYN, who pissed off a scared teenager and didn't listen enough to give her the help she actually really needed.
posted by PearlRose at 7:15 AM on May 7, 2015 [2 favorites]


I was in year 8 and suffering the kind of period that a tampon and a maxi pad couldn't contain along with severe cramps and diarrhoea and headspins and I went to sickbay and the deputy principal at the time said to me, 'as a woman you just have to learn to deal with this kind of thing' and sent me back to class. Of course I bled all over the back of my uniform and had to wear my jumper (luckily I had one) tied around my waist for the rest of the day. I hated her then and I hate her now.

Due to pregnancies and then an IUD (now out of date but still in place) I hadn't had a period for about 10 years up until last week, when I kinda bragged to someone about not having to worry about that anymore. Of course the universe, which hates me when I brag about anything, not only gave me a period but also made it a big nasty one with cramps and severe mood swings. Fuck you, uterus and you too, universe.

My periods, from 10 onwards, were torture. More than once the only way to get through a night without waking up in a bloodbath was to use two tampons and a maxipad.

I love my children but I was never maternal up until my mid-30's and I would have gladly waved bye bye to my uterus if I'd been given the option.

This was an outstanding piece of writing; thanks for posting.
posted by h00py at 7:24 AM on May 7, 2015 [1 favorite]


Just a note for anyone who is reading, pretty much everytime someone mentions an 'IUD' to stop bleeding, they mean a Mirena IUD, not a copper IUD.
The Mirena is the one with a very small dose of hormones released almost directly to the uterus (which has never affected me like any pills I tried have), which works for a few years.
The old school copper IUD's actually usually cause heavier periods, if that is a consideration, but are still awesome for the comfort factor of "Yay, I'm really, really, probably not going to get pregnant with this in".
The Mirena has that, plus has eliminated my periods.

My periods were mostly fine, except when they weren't. No pain, no pms, then every couple of years, a super painful, can't go to work or uncurl from a ball, period, and finally, two closely spaced 'periods' of month long heavy bleeding before I got Mirena'd up.
I shudder to imagine having had experiences like that regularly would have been, and, share the experience of receiving very few answers as to what the hell caused it.
Shoutout for Family Planning though, they were better, even if they didn't necessarily know either.
posted by Elysum at 8:12 AM on May 7, 2015 [3 favorites]


Thank you all for sharing your tales of menstrual misery. Seriously. I just got through a really wretched one (a good quarter-cup a day of gore for the first three days) and while I wish to heaven that none of us had to go through this, it's great to know I'm not alone.
posted by palmcorder_yajna at 6:44 PM on May 7, 2015


Stop prescribing iron supplements to adolescent girls as a prophylactic

Whoa really?
posted by turbid dahlia at 3:24 PM on May 12, 2015


Oh, man. I didn't even notice that terrible word choice! A prophylactic for anemia, not pregnancy.
posted by ernielundquist at 4:17 PM on May 12, 2015 [1 favorite]


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