Navigated to Introducing: CRAMPED - Transcript

Introducing: CRAMPED

Episode Transcript

Speaker 1

Hi Taboo Science listeners.

This show is still on Hiatus.

I'm brewing up some ideas for a new season as we speak, but for now, I wanted to turn you on to another show you might like.

It's called Cramped.

It's an investigative podcast that answers the question why are so many people with uteruses in unexplained and untreated pain.

It's hosted by Kate Helen Downeye, who experiences this pain herself.

It's something called severe dysminerihea, which sounds very official until you find out it just means really painful periods.

Throughout the season, Kate interviews experts and other uterus has to get to the bottom of what causes this debilitating pain and how she and others might find relief.

Spoiler alert, she does get a diagnosis, so look forward to that.

I absolutely love this podcast and I think you will too, So without further ado, here's the first episode.

Speaker 2

Enjoy.

Speaker 3

When I say I get really bad cramps.

What does that look like to you?

Maybe you get a picture in your head from a TV show or a movie.

Oh, my period, You're all fired.

Maybe you think of the stock image that pops up if you google image search period cramps.

A young, thin, white woman sitting bent over on a couch and wincing, wearing jeans.

For some reason, maybe you're like me, and you know this twisting, horrific pain that comes in waves and just doesn't stop.

Maybe you know what it's like to spend a day or two dead to the world outside the bathroom floor.

Unless you personally have experienced this pain, or you are very close to someone who does experience it, like close enough to actually see with your eyes what it does to them, you're probably thinking this is not a big deal.

This is cramps.

Everybody gets cramps.

Respectfully, buckle up.

I want to tell you about just one of the times my cramps really fucked up my life.

And this probably goes without saying since this is a podcast explicitly about period cramps.

But this episode has graphic descriptions of menstruation, blood, and other bodily functions.

So if that doesn't work for you, that's fine, just this is not the podcast for you.

It's the Lunch Rush at Upstairs on the Square in Harvard Square and Cambridge.

It's kind of a manic Pixie dream restaurant.

It's got pink walls and zebra striped banquettes, but also old school wood.

The waiters wear black pants and crisp white button downs and fun ties.

I'm twenty two, and this is by far the fanciest and best paying waitressing job I'd ever had in my short career.

I barely absorbed any of the wine training, and I still don't remember which fork goes where in the place settings.

We are slammed, and I am at the pos system, putting in entree orders for my big table, sweating and desperately trying to remember if the guy with a mustache wanted a Caesar or a Vinaigret dressing.

When I realized something that makes my heart stop.

I have cramps.

I have been focusing on getting all the details right on lunch service so I can have one day where the chef doesn't yell at me, and I missed the crucial early signs that dull backache and upset stomach chills.

And these aren't just regular cramps.

The pain in my belly that I just felt means I'm about to have what I call death cramps, and there's nothing I can do about it.

It's too late for ibuprofen.

I realize that the layer of sweat over my whole body right now isn't because I've been hustling between my tables.

It's because I'm starting to have a full body reaction to whatever my uterus is doing.

The pressure in my gut isn't because I chugged an entire pint of diet coke during service prep.

It's because I'm going to start throwing up any second now.

The weakness I'm feeling in my legs isn't because these dance coat clogs are so bad for climbing the stairs to the second floor dining room.

It's because I'm going to pass out from the pain shortly after I throw up.

And I have four tables at varying stages of fancy multi course lunches, drinks up at the bar, and special requests to verbalize to the kitchen that they are probably not going to appreciate, and four seasoned waiters who already treat me like an annoying little sister.

But unless I want to throw up on the quirky polka dot rug, I don't have a choice.

I find the waiter who has been the nicest to me, even though I know it's because he's going to try to sleep with me, and I say very quickly, I'm sick.

I'm so sorry.

Can you please cover my tables?

A fourteen wants no dairy any taliatel?

Can you tell the kitchen.

I'm so sorry, it's an emergency, and I lock myself in the employee bathroom.

I take off my stupid white button down and my black dress pants and I hang them up on the coat hook so they won't get drenched in sweat, and I kneel in front of the toilet just as the heaving starts, knowing I'm in for between one and six hours of hell.

I come back to consciousness on the floor of the employee bathroom because someone is pounding on the door and yelling my name.

I'm groggy, but the cramps have stopped, as have the alternating waves of vomiting and diarrhea.

I say, I'm okay, sorry, coming out in a second, just so they'll stop making noise.

I sit up and behind me on the bathroom floor, there's a perfect outline of my body in sweat.

My hair is soaked, my muscles are rubbery as I stand up, my abs and my back are sore from all the puking, and my forearms are sore, and I know i'll have bruises tomorrow from where I leaned too hard on the edge of the toilet.

But I feel the kind of amazing that you only feel when intense pain has finally gone away.

I am so relieved to not be in that nightmare of pain anymore.

I don't have my phone on me, and there's no window, so I have no idea how long I've been locked in the only employee bathroom.

My first feeling is guilt that a bunch of waiters picked up my slack while holding their pee, and then embarrassment that so many people know I was locked in the bathroom for hours.

I wonder if they all think I was doing drugs in here, and if that will make me cooler or less cool in their eyes.

I put my pants and my white button down back on, which is hard because I'm so sweaty.

It's like trying to put your clothes back on after getting out of the ocean.

I come out and the manager, who's a woman, is standing there.

She's definitely concerned, but I can also see a look of annoyance and impatience, like right behind the concern, I am immediately in smooth it over mode.

I'm so sorry I was having an emergency.

Uh no, I don't need you to call an ambulance.

Everything's okay now.

I'm so sorry it happened at work.

I really appreciate everyone covering for me.

I'm okay now.

I said whatever I needed to say in order to keep my job.

Take two buses back to my apartment, and sleep for the next twelve hours.

Since I was fourteen, I've never known why I am in so much pain when I get my period.

I've never had a diagnosis, and I've never really found a treatment that helps.

This podcast is my search for answers to some of the most basic questions about my body.

Speaker 4

Morning sickness and the materiosis, menopause, migraines, b CEO, that's happening to your body?

Speaker 2

We don't know because we've.

Speaker 4

Never really studied the female body, so it's all in my head when the research is quite sunny.

No, we never really studied the female.

Speaker 2

Buddy, I go to the doctor to get dismissed.

Speaker 5

Try to losing weight.

Speaker 6

You're just anxious.

Speaker 2

That's my medical I'm not pissed.

Speaker 4

Just wait ten years for a diagnosis.

Psychosomatic you're so dramatic, hysterical, emotional, hormonal, eerotic, heart disease, chronic fatigue, depression, and anxiety.

Speaker 2

Do you have pain?

Speaker 4

No, you don't.

Speaker 2

You've never really studied the female fund.

Speaker 3

Hi.

I'm Kate, and that's what it's like when I have death cramps.

At least that's what I've always called them, because really bad cramps didn't quite do them justice.

Now I know that the medical term for really bad cramps is dismnareea.

It's happened to me since I was fourteen, right after getting my period, but it's not what I experience every single month.

Sometimes I just have your basic run of the mill cramps, which also suck, by the way, but they don't ruin my life.

Sometimes it escalates into death cramps, and sometimes it doesn't, with no pattern or trigger that I have ever been able to identify, which is just a super fun game of chicken to play with your uterus twelve times a year for twenty plus years.

So I just said that the medical term for my death cramps is dysmenoriea, but that's not exactly accurate.

The term dismenoreea comes from Greek dis meaning difficult, painful or abnormal meno meaning month and rhea meaning flow, so literally painful monthly flow.

So dos menarea can mean any pain you have related to your period, like quote unquote normal cramps, and then sometimes people will use it to describe severe or abnormal amounts of pain related to your period, like my death cramps, and sometimes doctors will use the term severe dismnerya for a death cramps kind of pain.

How someone uses the term mostly comes down to what they consider a normal amount of period pain, and there's no real consensus for that because we just don't talk about it enough to have a sense of normal.

Now, aside from this mysterious period pain, I am pretty much healthy across the board, and not to brag.

And my mother never experienced this level of pain with her period, so obviously, after the first time I experienced this insane pain, we went to a doctor.

I expected some answers that would make this pain make sense, like I had appendicitis or some kind of horrible infection.

It's kind of rooting for horrible infection, you know that, doctor, I am not kidding.

You told me.

Yeah, some women get painful, but they usually go away when you have your first baby, which is such an unhelpful thing to say to a fourteen year old.

Over the last twenty two years, in many different cities, with many different insurances, after many ultrasounds and tests to rule out the obvious potential causes, I have never gotten answers or a diagnosis.

For a long time, I didn't talk to people about my death cramps.

The reactions I got from my parents, the school nurses, and my doctors early on all communicated to me that this was just some freak thing my weird body was doing, that they didn't know anything about this, that they had never heard of this happening to someone.

I didn't talk about it because I was afraid of it, and I was embarrassed about it, and I was ashamed that my body didn't work right.

It was so scary to be in the worst pain I'd ever been in in my life but not know why, and have doctors not know why that I just tried to forget about it every time it happen.

And when I finally started talking to more people about my death cramps, I was shocked at how many times someone would say, oh my god, yeah, I get those two.

Oh my god.

I thought I was the only one men who would say.

I had a girlfriend who had that.

She never knew what it was, but it was scary.

I couldn't believe all these people had somehow also been experiencing the same thing and we just never talked about it.

How could it be true that so many people experience this and yet doctors just shrug at me when I ask them about this, like they never heard of it.

How can all these people be dealing with this intense pain but there isn't a real treatment for it.

Looking back, I understand how naive this thought was.

To be shocked and confused about why a system doesn't help you means that up until that moment, the system did help you.

I know now that as a generally healthy, CIS white woman, I have enormous privilege within a system like our healthcare system in a country like the US.

This disbelief and confusion I felt when I realized there were other people experiencing this pain but it was ignored and dismissed by doctors.

That confusion was a privileged person encountering discrimination for the first time and having a lot of cognitive dissonance about it.

I know more now about the experiences of others who have less privileged than me, and the experiences of people who have more privilege than me in the medical system, but I still don't understand exactly why I haven't been able to get a diagnosis.

I'm doing this podcast because I want answers, and if I'm being honest, I want an excuse to sit some doctors down and not let them leave until they tell me something real.

I don't want other people who experienced his Manaea to feel isolated like I did, to feel like their bodies are wrong or weird, to feel like they just have to find a way to tolerate it, that there's no help for them.

I want to get these answers for myself, and then I want to share them with anyone else looking for answers, or at the very least, I want to understand why I can have these answers and what would have to change for me to get them.

My first and most obvious question is what even are cramps.

I know that the uterus has muscles, and when it needs to squeeze the blood out because a fertilized egg has not shown up to grow into a baby, the muscles contract, But what makes the muscles contract and why does it hurt so much?

After reading a bunch of medical papers and googling a lot of medical definitions, here's how it works.

Hormones run the show when it comes to periods duh.

After an egg is released from an ovary ovulation, the ovary makes a hormone called progesterone.

Progesterone signals to the lining of the uterus that it has to thicken up and prepare to house of fetus.

If a fertilized egg doesn't show up, the ovary stops making progesterone, basically saying never mind.

This drop in progesterone signals a new player to show up on the scene.

Prostaglandins.

I had never heard of prostaglandins before I started doing my recent but they are huge players in the period paying games.

Prostaglandins aren't officially a hormone, but they also do a lot of signaling.

Their job across the whole body is to show up when there's an injury or damage bind to the prostaglandin receptors and trigger reactions.

So we've got progesterone dipping, prostaglandin's getting released into the bloodstream.

Those prostaglandins then hurry over to the uterus.

They bind with the prostaglandin receptors in the muscle, and they tell the muscle to contract or squeeze.

That squeezing is what pushes out the blood and tissue that's been building up in the uterus ever since ovulation.

Without that muscle contracting, there wouldn't be a way to clear out the uterus.

So it can try again next month.

So there's nothing wrong with prostaglandins making the uterus contract.

That's everything going according to plan.

And because that muscle is contracting and working hard, some mild aching and soreness can happen, just like if any muscle is working hard.

But sometimes for some people things start to go off the rails.

Too many prostaglandins might get released, and they're all screaming at the muscle of the uterus to cramp, cramp, cramp, and so instead of squeezing and releasing like normal, the muscle just squeezes and squeezes and squeezes until the muscle is so constricted that the blood vessels can't get fresh oxygenated blood to parts of the muscle.

Muscle cells will die if they can't get oxygen, so they really want to bring attention to this problem by causing pain.

This is called ischemia, and it hurts like a motherfucker no matter where it happens in your body.

When it happens in other muscles, it's called a Charlie horse.

This is actually a useful pain, or what medicine calls adaptive pain.

If you can shift positions to increase blood flow or like shake out the cramp, that helps get more oxygen to the spot that needs it.

But when it's happening in your uterus, you can't do much about that.

Prostaglandins are also responsible for period poops because when they flood into the bloodstream at super high levels, they don't stop at the uterus.

They also bind with receptors in the colon, and they make the muscles in your colon contract too.

Same deal for vomiting.

For those lucky individuals who sometimes throw up when we get cramps, those prostaglandins are binding with receptors in our stomach muscles and causing a vomiting reaction.

Fun staff.

One more thing about prostaglandins, the reason ibuprofen and other n sids or non steroidal anti inflammatory medications can be so helpful for period cramps is that they can lower the amount of prostaglandins you produce.

They also bind with the proseaclanin receptors, blocking the prostaglandins from signaling to the muscles to cramp.

They are the heroes of this story.

But this is the first of many times in my research my mind got blown.

I've been taking hyboprofen wrong my whole life.

I've always taken it when I feel my cramps starting.

It hurts, so you take the medicine to make it stop hurting.

Right In the case of cramps and iberprofen wrong.

If you take hyberprofin after your cramps have already started, you're kind of too late.

The prostaglandins are already swimming around in your bloodstream and binding with receptors.

The key is to take the hyberprofen before your period is even supposed to start.

And yeah, that means tracking your period and starting to pop a few iboprofen forty eight hours before you expect to get your period.

That way, the iberprofen is already binding to those receptors and reducing prostaglanin production before it even starts.

And sure, if the cramps aren't too bad, you can probably just deal with the discomfort until the hyperprofen kicks in aka catches up to the prostaglandins and the receptors.

But if you're like me, taking the hyberprofen after cramps have already started might be too late.

There might already be enough prostaglandins in your bloodstream binding to receptors to cause vomiting, which means you can't keep any more meds down.

So for me, taking iyberprofin prophylactically or before I need it is a huge life stay.

And just a quick disclaimer here, I am not a doctor.

I'm just a research nerd with a microphone and a uterus telling you things I learned.

This is not medical advice.

So prostaglandins cause cramps and Iberprofen blocks prostaglandins.

Oh my god, I think we did it, you guys.

Medical mystery solved.

Yeah, that'd be great.

If the answer for all severe period pain was just take iberprofen, it'd be a pretty short podcast series.

Unfortunately, as helpful as Iberprofen can be, it doesn't work for everybody all the time.

For some people like me, it might help sometimes and then other times do nothing at all.

So how do you find out what's going on?

Why do some of us produce so many prostaglandins.

Why would cramps be normal some months and completely debilitating other months?

These are questions I could not find the answers to in my research, so I brought in an expert.

We're going to take a quick break and when we come back.

I talked to doctor Karen Tang, gynecologist, author, and TikToker about what severe period pain like mine could mean.

Speaker 2

Because we've never really started a female.

Speaker 3

Fund adding welcome back to Krampt.

After doing all the research I could do on my own into what's actually happening inside my body when I have death cramps, I went to an expert with my unanswered questions.

Speaker 2

I'm doctor Karen Tang, I'm a Bortzer gynecologist.

I do a lot of talking and social media, and I have a book called It's Not Hysteria.

Everything you Need to Know about your reproductive health.

But we're never.

Speaker 3

Told when we get into the kind of severe dismentaria that I experience, where it is debilitating pain.

I am throwing up every ten minutes, even though there's nothing left in my stomach, I'm having diarrhea, I'm passing out.

Is that just the regular pain turned up or is something physiologically different happening inside my body?

Speaker 2

So whenever somebody's having that degree of pain, we always start to think what else could be going on?

That's obviously not normal.

So anytime something is affecting your ability to function, you're throwing up, you're missing work or school, we start to think, is it not just run of the mill cramps anymore?

Could it be something like enemy triosis, which is probably the most common cause of really bad, painful cramps, or fibroids, add innomiosis.

Speaker 3

There's lots of underlying conditions that could cause period pain to be excruciating.

Let's lay them out real quick, and just for fun, I'm going to list them in order of how easy they are to identify and get treatment for.

Ovarian cysts.

Ovarian cysts are little fluid filled sacs that form on your ovaries.

These can be a totally normal part of ovulation, and little cysts can just go away by themselves, but if they become a problem, if they get too big or there's too many of them.

It can cause ovarian torsion, which means the ovary twists, and it can rupture a fallopian tube.

Ovarian cysts can also burns.

It can cause fever, sharp pain, nausea.

Many people mistake the feeling of an ovarian cyst rupturing for an appendix bursting.

That's how much it can hurt.

Cysts can usually be found on a pelvic ultrasound, so that makes it pretty easy to spot.

Fibroids.

Fibroids are non cancerous tumors that grow inside the uterus.

They can be teeny tiny, like the size of a seed, or as big as a watermelon, which is terrifying.

Some people have fibroids that don't cause any symptoms at all, and some people have fibroids that cause enormous pain.

Fibroids most often cause heavy, painful periods and pelvic pain in general, but it can also cause pain in your stomach and your low back, or pain during sex.

Fibroids are incredibly common.

Up to seventy seven percent of people with uteruses will develop fibroids before menopause, and yet despite how common they are, we still don't know what causes them.

Fibroids usually show up on a pelvic ultrasound, but you can also get an MRI or something called a hysteroscopy, which is a little camera that goes up into the uterus.

They might need to do different kinds of imaging to get a good picture of it.

EC topic pregnancy Okay, this one usually doesn't cause painful period cramps because you don't get your period because you're pregnant, but it does cause pain that you might mistake for period pain.

An Ectopic pregnancy is when a fertilized egg implants somewhere outside the uterus, usually in the philopian tube, and starts growing.

These pregnancies are non viable.

The fetus cannot survive and as it grows, it will burst the filopian tube around six to eight weeks.

That causes internal bleeding and that can be fatal.

Weirdly, one of the things to look out for is shoulder pain because of the nerves in that area referring to the shoulder, so watch out for that.

You can see an ectopic pregnancy on an ultrasound, and usually they'll also do a blood test to confirm the pregnancy.

IUD issues if you have an IUD and you have unusually bad pain, either during your period or not, get to a doctor.

It's very rare, but it is possible for an IUD to pierce the wall of your uterus.

It's called perforation, and it's really bad.

If a doctor suspects an IUD perforation, they will first do a manual exam and check for the IUD strings.

If they can't find them, then they'll do an ultrasound to locate the IUD.

Uterine abnormalities Okay, I didn't know this until today, but uteruses can be lots of different shapes.

There's quote unquote normal uteruses, but then there's also dysmorphic, which is T shaped, bi corporeal, and septate, heart shaped or hemi sort of one sided.

Usually these different shapes of the uterus don't cause problems or pain, although some shapes may make it harder to conceive, so most people with uterine abnormalities don't find out about it until they're investigating a fertility issue.

But there are some abnormalities that cause period blood to be trapped inside one part of the uterus with no way to get out, and that can cause severe pain.

See a uterine abnormality through an ultrasound, an MRI, or a histeroscopy, or a combination of all three PCOS or polycystic ovary syndrome.

This is a condition where hormones are way out of whack.

Small cysts can grow on the ovaries and produce androgens or male hormones, which cause a ton of symptoms and can either make your periods much lighter or much heavier.

Hormones are fun that way, so desmenteria can be a symptom of PCOS, though it's usually paired with a lot of other symptoms like excess body hair, acne, thinning hair, dark patches of skin.

PCOS is usually diagnosed with an ultrasound to look at your ovaries and check for cysts, plus a blood test to check your hormone levels.

Endometriosis Endometriosis is when your endometrial tissue, which is the stuff that makes up the lining of your uterus, the thing that thickens and then comes out during your period, when that tissue grows anywhere else in your body outside your uterus.

Most often it's in the pelvic cavity, like near your ovaries, or your bladder or your bowels, but there are documented cases of people having endometrial tissue in their nose, in their brain, in their lungs.

Because endometrial tissue responds to hormone signals, no matter where it is or how inconvenient it would be for you to bleed there, it thickens and bleeds despite the fact that it's not inside your uterus but on your ovary or in your nose.

This causes a lot of problems when it happens once a month for years and years and years.

These problems are caused by inflammation, scar tissue, and something called adhesions that basically glue your organs together so they can't function normally.

Endometriosi's symptoms can vary a ton from person to person because the endometrial tissue can be anywhere and the symptoms will be different depending on where the tissue is.

But for obvious reasons, folks with endometriosis tend to be in the most pain around their period.

A super fun fact is that endometriosis is one of the most common causes of dysmenorrhea, but it still takes a woman in the US an average of seven to ten years to be diagnosed, and that's partly because getting diagnosed requires laparoscopic surgery to look inside the abdominal cavity and visually confirm the presence of scarring or adhesions.

If endometriosis is really advanced or has caused a lot of scar tissue, it might show up in an ultrasound or MRI, but just because it doesn't show up on one doesn't mean you don't have it.

Adenomiosis.

Adenomiosis is like endometriosis in that there is endometrial tissue that is somewhere it is not supposed to be, But with adenomiosis, the endometrial tissue is inside the muscle of the uterus rather than outside on your ovaries or bladder.

A big symptom is very heavy, painful periods.

Adenomiosis usually happens to people between thirty five and fifty, often people who have already given birth, especially if they've had a C section.

Adenomiosis is diagnosed first with a pelvic exam, where they feel for a quote spongy enlarged uterus.

Nice they might do an ultrasound to rule out fibroids, and then they might do an MRI to get a more detailed picture of how much endometrial tissue has grown into the uterine muscle.

Okay, that's a lot of things that could be causing severe dysmenory ea.

So how do you figure out which one it is?

I asked doctor Tang what this process of getting to a diagnosis with your doctors should look like.

Speaker 2

So, in general, if someone is having really painful periods, typically what a kind of collas will do is, depending on how old they are, they might order a pelvic ultrasound.

That's the easiest thing.

It's a test that doesn't have radiation, there's no real harm to it.

It's very easily accessible, and it gets a great look at your uterus and your ovaras just to make sure that structurally they look okay.

So, fibroids do show up on imaging, so you can find those on ultrasounds very easily.

Enemytross and atinmiosis are actually a lot harder to see and in fact don't typically show up on image studies until they're really fairly severe.

It's not uncommon for someone who is going through an evaluation for painful periods to be told, oh, everything looks normal.

Your ultrasound is completely normal.

There's nothing wrong with your uterus, but you're like, but I'm still like in devastating pain and throwing up all the time.

Speaker 3

To address this pain, Doctor Tang says birth control is usually where doctors start.

Speaker 2

A lot of times, and those of you listening to this have probably been told we try birth control.

The reason that we do that is that the progesterone in birth control thins the tissue that comes out like period blood, So the endimutrial tissue that's what actually comes out when you're actually bleeding.

It's this tissue mixed with the blood from inside the eaters.

It thins that so there's not as much to come out.

In general, the more your uterus is working to try and push out blood clots, the stronger the cramps are.

As well.

I say, it's like you're used to trying to birth the clots.

So the less bleeding, the less clots, the less usually the cramping in general.

And then also you're preventing ovulation.

Sometimes you can even use birth control to totally skip your periods.

Nor the signal to your body to have a period is controlled by ovulation, and so if you don't release an egg, you don't start that timer.

And so sometimes people can actually go.

And there's different ways that we will purposely skip the periods using birth control in this way.

So if we're like, you're not in pain when you're not having periods, can we take away your periods or make them much lighter to see if that helps.

So that's the reason why people are usually given a birth control method as like the first line, and also because it's very common if people need contraception to prevent pregnancy anyway, they're like two birds with.

Speaker 3

Lovestone birth control that makes you not have your period.

When I was growing up, which again was twenty years ago, I was told maybe not by medical professionals, but like my mother, oh, that it was dangerous, yeah, that it's unnatural to skip your period, And so I never tried that.

Is there anything to that or is it fine now?

Speaker 2

It's a good question.

And the reason that myth exists is because on your own, it is dangerous to not have a period if you have functioning over east.

And the reason is for conditions like PCOS polycystic ovarian syndrome, they don't ovulate regularly.

People with PCOS don't tend to have periods regularly.

They may skip many months or even a year with no periods.

The danger of that is that the tissue in your uters can build up over time, and that is actually a risk for uterine pre cancer or cancer.

You can get build up of abnormal cells.

And also if you skip a bunch of periods on your own, when you finally bleed, it is a nightmare.

It's six months worth of periods coming out all at once.

So people with pcos will sometimes bleed for weeks and weeks just like pouring out blood because there's so much stuff in the uterus that hasn't been shit.

The difference when we use a per control with progesterone is that the progesterone is controlling the growth and keeping it from growing so you don't get that build up inside.

So we say when we take over and we are preventing the periods or doing it in a way that you don't actually medically need to shed the tissue to clean it out, so to speak.

It's keeping it from growing so it doesn't build up.

So it is different, and that's where the moms and people are like, oh, it's unhealthy not have your period.

That's where they get that from, is that it is unhealthy on your own, but under these circumstances, we can skip the periods safely, and that's what we do actually, or first line for people who are like the periods are miserable, they bleed so much and so much pain.

If we can get rid of the periods, then that's helpful.

We do that also for not just pain, but for things like crementional dysporic disorder, for severe mood symptoms right before your period, or menstrual migraines.

If you get horrible migraines right before your period, it's the same idea.

It's to keep those ups and downs of the hormone fluctuations from happening.

Speaker 3

Yeah, that makes total sense, and it makes me wish I had considered that more because that could have saved me years of pain.

Every time I go to a doctor for my cramps, they order an ultrasound, it comes back normal and they say, well, nothing's wrong, it's just bad cramps, and they write primary dysmenorrhea in my chart.

And that seems like the end of the road.

At what point do you start trying to figure out is this pain being caused by something else or is this just pain caused by your period that doesn't have an underlying cause.

Speaker 2

When we say primary and secondary in gynecology, there's usually a couple things that we could mean.

So primary meaning right off the bat, like this is something that you've always had.

So primary dys memory, like you've always right from the second that you've had periods is just how your uters functions.

That's how you experience it, as opposed to secondary meaning like time past, you were doing okay, then you started developing this later.

Sometimes we'll use that expression as primary being it's just based on the uterus itself versus secondary it came from something else.

So in terms of when we start to think about other issues in general, we do think about other things.

If it came out of nowhere, you're like I was actually doing okay and then things started getting worse.

Infections can cause that, like worsening pelvic pain that develops suddenly, including with your period, or fibers can grow later.

Abnomiosis develops usually later in people in their thirties and forties.

It's not usually something that's there when you're in your teens.

Fibrises don't ually show up in your teens.

It helps a little bit in terms of guessing what could be going on, but in general, like we do go through the same motions of the work up, the evaluation, the treatment options almost regardless, but it does in our mind where we're thinking through.

We call it the differential diagnosis, which is just our list of what we think could be happening, and we go through we rule it in or rule it out.

We use those distinctions a little bit.

Speaker 3

We learned earlier why n sets like fiberprofen can help with cramps for some people that they reduce the amount of prostaglandins and they block the receptors.

But what if fiberprofin doesn't work for you, does that help doctors narrow down what could be causing the pain?

Speaker 2

The people with things like enemetriosis are typically the ones who are, you know, like, maybe it worked for a little bit or a tiny bit of an edge off, but it really didn't take away all the pain.

It's another signal to us maybe there's something different going on.

Maybe it's not just regular cramps.

If you're taking max doses of ibupres and it's barely touching it, it should make us wonder if there's something different going on.

Unfortunately, and this is sadly just the fact of women's health.

In general, pain is so normalized.

People are told, oh, it's just periods.

Everyone has bad periods, just deal with it, or just take some breath control, just take some mightbprofen and those who are doing it and saying, I'm still in a ton of pain.

This really isn't working.

The problem is sometimes people get stuck at that phase and then the doctor doesn't think about other things like what else could be going on?

Is it nimetrios?

Should we talk about a laparoscopy to look for endo, could it be fibor should we get an ultrasound?

They get stuck in the you just have periods like everyone else.

Just deal with it and don't get that next step of evaluation and treatment.

So in general, I tell people, if you're trying something, and we all just try these same first steps, but you shouldn't have person getting stuck in the none of this is working.

I'm just trying like pale after pill.

Clearly there's something amiss.

Those are the situations I tell people to really advocate for yourselves, say this really isn't working for me.

Should we be thinking about something else?

Could it be an a metriosis?

Should we get some imaging what's next, and then if the doctor isn't offering that next step, that's where you get second opinions.

See a specialist, see a pelvic pain or enemytriosis specialist, and look elsewhere if the doctor's not helping you with that evaluation process.

Speaker 3

Yeah, which is a lot to ask for.

Like fourteen fifteen year old going through horrible pain and I really scared of it.

Speaker 2

So they really need a parent, an adult, a pediatrician like someone to help advocate for them to be like, yeah, that's not normal.

We should figure this out.

And pediatricians sometimes are really great.

Enemeytriosis groups are actually reaching out to school nurses now to educate them.

If you have a girl who's just constantly, you know, coming out of class, has to go home throwing up in the bathroom, that's not normal.

Speaker 3

That was me.

Speaker 2

Yeah, talk to the parents and say ask your pediatricians, see a pediatric gynecologist, think about edmetriosis, because that's not normal.

And like a strong percentage of people who have very bad period pain will end up having enemetriosis, the most common cause of abnormally painful periods.

So it is something that any of you who are listening who are in that phase of suffering.

Now you're just like, no one's listening.

I don't know what to do.

That's what you do is you try and find a specialist to focus on this.

Because enemeytriosis is typically diagnosed and managed surgically, some obedns don't do those surgery, so they might be like, well, why would I send you for surgery?

I don't really do them.

Let's just keep on doing medications.

That's where you say we maybe reached the end of what this doctor can offer.

Let's look for someone else.

And it may just be a matter of the doctor themselves are not super experienced with management of enemeutriosis, pelvic pain and some of these surgical issues.

So in general, you should never be stuck in that phase of I don't know what to do.

Now, I've tried these couple of things and they seem to think that was the only option.

Clearly it's not working.

Then you should look elsewhere for specialists and ask.

You're within your rights to be like, what do you think we should do now?

What could be going on?

What's next?

Speaker 3

It's so frustrating that it feels like we're doing the doctor's job a little bit of Hey, isn't this a question you should be asking?

Speaker 2

Yeah, if you feel like your spidy sense is there's something wrong, this cannot be just normal, then you definitely should go get a second opinion, because again there's limitations, like I don't know everything about everything.

Clearly, I've offerred people all the time.

I'm like, I'm a little mystified.

I don't know what's going on.

You.

Let me send you to a specialist, a hormone specialist, pelvic floor specialist.

But it should never be that you are just left to no recourse, no treatments, no answers.

That's not okay.

So you almost feel like it's like a public health crisis.

You know, there's just like this lack of basic information.

Speaker 3

So why didn't I know that my pain wasn't normal?

Why didn't I know that it was likely being caused by an underlying issue?

If at fourteen I had had more information about what a normal period was, maybe I would have been able to push back a little when doctors tried to tell me my horrible pain was normal.

And even though that was over twenty years ago, and one hopes things have got better since then, In twenty twenty four.

Just this past year, several studies found that teens in the US are not getting enough information on periods.

Our health education in the US generally sucks, and our healthcare for people with uteruses generally sucks.

It's kind of a chicken egg situation.

I don't know which to blame, but it ends up in a situation where we don't even know what we don't know.

We don't know when we're getting shitty care or when we have an uninformed doctor.

Our health depends on us advocating for ourselves, but the information we need can be really hard to get and do.

I think people with uteruses should have to become experts in gynecology just to be able to get the appropriate tests and diagnosis.

Of course, not any gynecologist should have this information, should believe that their patient is in an abnormal amount of pain.

If they say they are, should be able to get you to a diagnosis and treatment.

But that is not the world we currently live in.

So if a doctor is not helping you, you have to get your hands on the information yourself.

And after talking to doctor Tang, it seems like I should look into whether I have endometriosis or adenomiosis.

Based on the fact that my dysmenoria started up right away when I first started getting periods, the fact that ibuprofen sometimes helps and sometimes doesn't, and that my ultrasounds come back normal every time.

It seems like I've just constantly gotten stuck at that spot.

Doctor Tang was talking about that spot where my ultrasound comes back normal.

The doctor either doesn't know what to do next, or doesn't want to refer me to a specialist for some reason, or just doesn't think my painful periods are really a problem.

So it looks like I have to find a doctor who specializes in endometriosis.

This was episode one of Krampt.

They are nine more coming out.

Here's a little preview of what else we're getting into.

Speaker 2

They teach you a lot in medical school about the science, the biology, the pathology, but I do not remember to this day a class on how to talk to people.

Speaker 5

That's not what I was actually saying when I said my homeans were out of bells.

Speaker 3

What it is trying to say is I'm suffering.

Speaker 5

Those are all strategies that help reduce fear and that feeling of isolation which our brains don't like that feeling, and so they're going to signal more pain when we feel that way.

Speaker 2

They vilify physicians, but it's been insurance companies who are creating the biggest nightmare.

We put them in an MRI facill I mean they squeeze the bulb every time they have a cramp.

Speaker 6

If you keep on having painful periods, is that like getting cut over and over again by a surgeon, Like where eventually the are you keep going an opera and gets hyper sensitive.

Speaker 3

I'm like, yeah, this science is fake.

And also I'm taking the supplement every day.

Speaker 2

Mensi's itself has healing properties.

Can we make a wound repair model with what's in minster blood.

Speaker 3

That's the same ten thousand dollars for cramps.

Speaker 2

I am a full time journalist where my job is to ask questions, and I didn't know what to ask.

Speaker 1

I was embarrassed that I didn't even know what fibroids were.

Speaker 6

We weren't even able to advertise anything about menstruation until nineteen seventy two, and it wasn't until nineteen eighty five where Courtney Cox during a Tafex commercial actually used the word period.

Speaker 2

The existence of data, and particularly the existence of quality data on something is a direct representative of how much we as a society care about that thing.

Speaker 3

We'll be back next week.

Be sure to subscribe to the Cramped feed wherever you listen to podcasts and tell a fellow cramper about it.

We're an independent show, and the more people we can reach with this information, the fewer people will be in pain alone.

Cramped is hosted and created by me Kate Helen Downey.

Kelsey Delonzo is our editorial producer.

Sound design and mixing is by Kelly Kromeric at Maven Postmedia.

Our associate producer is Katelyn Sabatar.

Cramp's Incredible theme song is written and performed by Faraday.

Our podcast art was created by Nicholas Sheppard.

This podcast is supported by the Simons Foundations Science, Society and Culture Initiative.

Fiscal sponsorship for Cramped is provided by the Arkansas Podcast Collaborative.

You can find doctor Karen Tang on Instagram and TikTok at Karen Tang, MD, and her book is called It's Not Hysteria.

Everything you need to know about your reproductive health but We're never told.

Special thanks to Mia Lobel Event Modenau and Matthew Starr.

Speaker 4

What's happening to your body?

We know now because we've never really started fee more

Never lose your place, on any device

Create a free account to sync, back up, and get personal recommendations.