[image quote]: "It was confusing and scary, and I didn't really talk to anyone about it because I couldn't explain it at all...How was it possible that every months for YEARS I could go through the same exact thing to varying degrees and not realize?" - Cara, Episode 15; Host, talking about PMDD

[image quote]: "It was confusing and scary, and I didn't really talk to anyone about it because I couldn't explain it at all...How was it possible that every months for YEARS I could go through the same exact thing to varying degrees and not realize?" - Cara, Episode 15; Host, talking about PMDD

15 Am I Dying or Just Getting My Period? (episode page)
Description: This week’s episode is a solo show; Cara talks about her period problems, but don’t let that discourage you from listening to this one, she doesn’t even get too graphic about it! She talks about the stigma surrounding menstrual health, and why we need to talk about this stuff more. Cara also explains the difference between PMS and PMDD, and what living with PMDD has been like for her. So grab your snacks and your heating pad, and curl up and take a listen.

Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is almost never not annoying.

This episode is a little different than any of the others I’ve put out so far. There’s no interview today, just me and my ovaries and my uterus and my snacks. I considered skipping this week’s episode altogether like I did at this time last month because I’ve spent the better part of the last two weeks curled up in the fetal position, battling cramps, nausea, and intense anxiety and depression. I didn’t get to interview anyone, or even think about what I might do a show about until a couple of days ago, when I realized I could just talk about the reason why producing an episode for this week has been so hard. I already mentioned in the last few that I’ve been titrating up on a new medication that I’m really not used to yet, which set the stage for my already terrible periods to be even worse. So in the run up to this round of menstruation madness, I’ve pretty much totally dropped out of life because I just cannot deal.

Many people find period talk off-putting, and I see so many women feel so ashamed and squeamish about something that is totally natural. Most men know almost nothing about menstruation, and would really prefer to keep it that way. If you’re put off by these topics, I encourage you to keep listening, because this is yet another health issue that not talking about can lead to disastrous consequences. Without normalizing this VERY NORMAL bodily function, it is impossible for women to know when something comes up that isn’t quite normal. I, of course, am using the term “normal” rather loosely because people are all so different, there isn’t really such a thing as normal, so when I say “normal,” I mean more like normal-ish. We’re told that cramping, bleeding, and moodiness is normal, but never to what extent. For many women who experience the extremes of these symptoms, they often assume it is normal, or dismissed as overreacting, which can make it impossible for them to get help to improve these symptoms and make their lives more livable.

There are a number of conditions that can complicate the menstrual cycle. There’s endometriosis and uterine fibroids which can cause severe pelvic pain and heavy bleeding. There’s ovarian cysts and PCOS, which can cause irregular periods among an array other symptoms. Other conditions affecting the pelvic organs like Interstitial Cystitis and Inflammatory Bowel Disease can flare with hormones and make periods worse. I hope we’ll get to all of them on the show at some point, because these issues are so stigmatized and and considered icky. People prefer not to think or talk about it, but I’m going to, because icky things are right in my wheelhouse, and because they are all very important.

Across many cultures, and it seems for much of human history, menstruation has been heavily stigmatized. Given how ghettoized women’s health issues are in general, this is sadly no surprise. To this day, in many areas of the world, women and girls are still literally banished from their communities while menstruating. Worldwide, menstruation is the number one reason girls miss school. Severe cramping and other symptoms, the lack of sanitary resources available to young girls in developing countries, combined with the lack of essential education regarding menstruation can make it very difficult for girls to attend school before or during their period.

Here in the US there is no educational standard for sexual and reproductive health. Some girls get a stack of books and a “good luck” from their parent, or they get the talk from someone who was never very well educated on these issues themselves, some girls get nothing. In schools, classes are often divided by gender and shown inadequate, gender-specific videos about the changes their bodies will go through—or in many cases have already started. When I was in fifth grade, they split up my class into boys and girls, and showed us girls a video where a woman diagrams the female reproductive system with pancake batter for her daughter and her friends at a sleepover. I don’t remember what else the video actually taught us, but I do know I was put off of eating pancakes until very recently. I have no idea what the boys learned, something about body odor and boners probably, but definitely nothing about menstruation. Some schools don’t teach it at all. As an adult, I have been repeatedly shocked by the lack of knowledge among many of my peers, and even as someone who considers myself well-educated on these topics, I have continued to learn new and surprising things about periods well into my adulthood, more than 15 years into getting my period every month. That’s more than 200 periods, upwards of 800 days worth of blood, if I do the math. This is a very rough calculation because I don’t even remember when I had my first period, and they were pretty uneven and lasted much longer when I was younger.

As the lady with the pancake batter probably told us, the female reproductive system is made up of an arrangement of organs that each month prepare itself for the possibility of making a baby happen. It’s made up of two sets of ovaries and fallopian tubes, the uterus, and the vagina, all of which play a part in the menstrual cycle. The cycle lasts an average of 28 days, but a normal range is anywhere from 21 to 35 days. During this time, an egg will develop in the ovary and once it reaches maturity travels down the fallopian tube during ovulation. If the egg is fertilized by sperm either through sexual intercourse or another form of insemination, it will then attach to the uterine lining, which has thickened due to hormones produced by the ovaries, and the cells will begin to divide and turn into a fetus. If the egg does not get fertilized, or does not attach to the uterine lining, it will begin to break down and so will that lining. The combination of blood, tissue and mucus are then shed from the body through the vagina during menstruation. This is the part that we colloquially refer to as getting your period.

Along the way there’s a lot of hormonal activity, which for some of us, can really be a nightmare. I’ve read estimates that range from 50 to up to 80% of menstruating people experience PMS—or premenstrual syndrome. This can include mood symptoms, bloating, fatigue, cramping, food cravings, irritability, and an array of other symptoms. It can be very unpleasant and lasts for a few days leading up to, and generally resolves once you get your period. An estimated 5-10% of menstruating people experience what is called PMDD—or Premenstrual Dysphoric Disorder—which is like PMS symptoms turned up all the way to 11. Symptoms occur with significantly increased intensity, and interfere with work, school, social activities, and/or relationships. It generally starts as much as two weeks before, and continues into the first couple days of your period.

PMS and PMDD have been controversial over the years for a number of reasons. Some feel they pathologize the female experience, while others believe they do not exist. But let me tell you, and this is no fucking joke, the struggle is real. About four years ago, I was diagnosed with PMDD after an initial misdiagnosis of Bipolar II. I’d spend 10-14 days (and sometimes more) out of the month severely depressed, often to the point of being suicidal, extremely anxious, and in terrible pain and discomfort. Then, it would disappear rather suddenly and I’d feel almost totally okay and calm and happy again, and wonder what the hell my problem was. Then the next month would come and it would happen all over again, and I’d feel like a miserable failure and want to die, and then my period would come and I would be fine again. It was confusing and scary, and I didn’t really talk to anyone about it because I couldn’t explain it at all. Because the symptoms appeared so far in advance of getting my period, and not the 2-5 days I knew was common with PMS, it did not occur to me that these symptoms were related to my menstrual cycle. But when I compared records I’d kept in tracking my periods and when those symptoms would appear and subside, there was a perfect overlap. I wondered how on earth it could be possible that I never noticed the correlation before. How was it possible that every month for YEARS I could go through the same exact thing to varying degrees and not realize? I have since heard this exact sentiment echoed by many other women in regard to both PMS and PMDD, but the symptoms I experienced were often dismissed by others, misdiagnosed, and complicated by my underlying and still-undiagnosed other health issues.

I have since made several attempts to get my PMDD under control, some of which have been more successful than others. It’s been challenging because of my other health issues, and has on multiple occasions, been pushed down the list of priorities to address more urgent symptoms. Finding the right antidepressant made a big difference for me, and it was actually prescribed to help treat something else entirely. Treating some of my underlying health issues has helped as well. Under the guidance of my gynecologist, I’ve experimented with multiple forms of hormonal birth control to help my body better regulate my own hormones. Because there is no medically known reason to even have a period each month, I first tried to use continuous birth control to eliminate my periods altogether. This was promising, and works for many women, but my menstrual cycle is very stubborn and though my symptoms were reduced, I continued to experience them with a new symptom of almost constant spotting. Then we tried the every three month method, and that hasn’t really worked out either, so for the last couple months, I’m back on a monthly cycle, and am reminded of what a nightmare getting this every month is. I’ll probably change this again soon.

Don’t get me wrong, it’s WAYYYY better than it was before. The depression and anxiety usually aren’t as bad, but in the last year or so, the cramping has gotten significantly worse and we're beginning to suspect it may actually be a separate issue like endometriosis. Isn’t that fun? It’s totally possible to have more than one poorly understood and difficult to diagnose gynecological disorder at once! But frankly, just being able to say to myself, “this is just a reaction to your hormones, you’re not losing your mind, you just gotta ride it out and it will be over soon,” has made a big difference in the very darkest of moments. So that’s what I’ve been doing, just trying to ride it out. My period came today, FINALLY, so I’m hoping to feel more like myself in the next couple days.

It’s hard enough to even talk about PMS without it being turned into a joke, or being dismissed as being a hormonal and “crazy” person. Like I’ve mentioned, my PMDD was misdiagnosed as anxiety disorders and Bipolar disorder—and it’s totally possible to have those AND PMDD. But that’s why we need to talk about this more. I was so afraid of seeking help for this problem because I was afraid of being dismissed, and it’s not like I didn’t have good reasons for feeling that way. Both in cultural history, and my own personal history, women’s legitimate health concerns have been dismissed as hysteria, and even though we no longer use that term, the sentiment persists. But the more openly we share about our experiences, we can help people better understand and believe them, the less alone we can feel, and help others to realize that they are not alone in their suffering. I didn’t even know PMDD existed until four years ago, and many people still don’t, or doubt its legitimacy. But I’ll say it again: PMDD is absolutely for real.

Some people may be listening and thinking, how am I supposed to know if what I experience is PMS or PMDD? Generally the difference lies in the severity and degree to which it affects your daily life. I’ve provided some links to further reading in the show notes, so I would recommend first educating yourself on these issues. This is a medical issue, and its something you will need to discuss with your doctor. That could be your PCP, gynecologist, psychiatrist or all of the above. There are other medical and psychiatric conditions that can mimic these symptoms, or occur in tandem with PMDD, and so it is important that you be screened for those as well. And I’m not going to lie to you, there is a good chance that if you’ve done your homework, you might know more about this than the doctors you see, but if you can find a doctor who is willing to work with you to figure this out, you’re on a good track. If you’re not sure where to start, Planned Parenthood is my go-to recommendation for all things reproductive health related. As I’ve talked about on the show before, they get a lot of bad press, but if you talk to many of the millions of women who have actually utilized their services, they’ll often tell you it’s among the best healthcare experiences they’ve ever had. Even if they can’t help you directly in their clinic, they can often point you in the right direction with care and compassion.

There aren’t a lot of treatment options for PMDD, but there IS help available. There are the general health recommendations like exercise, eating right, and practicing good sleep hygiene, blah blah blah, but I know those are not things I’m able to adhere to when my body is so topsy-turvy with hormones. These things can help put your body in a better place to respond to treatment, but you cannot eat or exercise your way out of it, as is so often suggested. There are pharmaceutical interventions like antidepressants and hormonal birth control that may make a huge difference for people. As always, every body is different, and there are tons of different options in each of those categories, but these things can really help. So can therapy, and my personal favorite: chocolate covered pretzels. Okay, so the snack part of it isn’t really a treatment, but it is a nice distraction.

Like a lot of women’s health issues, PMDD is poorly understood, and gets almost no research funding. However, one study found that 15% of PMDD sufferers have attempted suicide. Based on my own experience, and in talking to others who live with PMDD, I wouldn’t be surprised if that number is actually much higher. Suicidal ideation is one of the PMDD symptoms that doesn’t get much of the already very little attention paid to the condition, but it’s one of the worst and the scariest to talk about. I cannot describe the feeling, but it’s like my brain gets hijacked by these thoughts. It’s a very bizarre experience, but when you spend half the month wondering why you feel so overwhelmed and incompetent and curled up in a ball wanting to die, it’s hard to feel like you’re living much of a life to begin with. In that dark place it’s also almost impossible to imagine ever not feeling that way again.

The first step in dealing with PMDD is figuring out what it is, and recognizing it when it happens. Like I said, being able to remind myself that this is temporary, and I just need to ride it out, has been a huge help. Reaching out to others and being more open about experiencing PMDD, especially with the people you’re closest with, can really help as well.

This is where self-care comes in, although many times with PMDD it can feel almost impossible to muster the will to do something nice for yourself, or anything at all for that matter. Sometimes just curling up with a heating pad and netflix, and staying catatonic for hours at a time is the closest you can get to self care, and that’s totally okay. Beating yourself up for not being better at self care will not get you anywhere, I know because I've done it. Sometimes you do just have to ride it out, and lean in to what your body needs, which for me is usually some combination of sleeping, crying, eating salty things and chocolate--bonus points for things that are both at the same time--and watching cartoons. If this is something you deal with too, I hope you’re able to find a good low energy combination of things to help you ride it out as well. And if you need a laugh, I’ve linked to a related Key & Peele sketch in the show notes that gave me a good chortle while I was researching this episode.

We’ll be talking more about PMDD, as well as endometriosis, on next week’s episode, and I hope to cover many other kinds of pelvic pain and related issues in the future. I’ve gotten several requests to cover issues like vulvodynia and interstitial cystitis on the show, and I plan to do so, but it’s hard to find guests willing to talk about it for obvious reasons. If you’re a listener who might be interested in talking to me about your pelvic pain whether it falls into those categories or not, please email me at insicknesspod@gmail.com. You can do the show anonymously, and it would really help others to hear about your experience. We all need to be talking about this more so we’re not suffering alone and in silence.

As always, you can find links in the show notes to learn more about the menstrual cycle, menstrual disorders, and PMDD. If you’re feeling generous, consider giving to one of the organizations that provide menstrual management supplies to girls in developing nationsso they can continue to attend school. Through the ZahnaAfrica Foundation you can provide a full year of supplies for one girl for just $10. If you don’t already, talk to your girlfriends and the women in your life about your periods, talk to them about their periods. The more we talk about it, the more we fight the stigma, and the better off we all are.

Thank you for listening to In Sickness + In Health, me and my uterus will be back with a full episode next week, if I manage to climb out of this black hole of hormones. In the meantime you can find us at insicknesspod.com and on social media @insicknesspod. If you can take a few moments to rate and review us on iTunes, it will help out the show. And don’t forget to be excellent to yourselves and each other.