My PMS is really bad. Is it PMDD?

My PMS is really bad Is it PMDD

What’s the difference between PMS and PMDD? How does our mindset affect our periods and our health at large? Why is digestion so key? What can you do to improve your period? Our founder, Kirsten Karchmer (KK), and Know Your Endo founder, Jessica Murnane (JM), break it down on Episode 145 of the One Part Podcast.

You can read an excerpt from their conversation about PMDD below, but we highly recommend you listen to the whole episode.

JM: There's so much about your book that I want to talk about but [for now I want to discuss] the mindset component of PMS and PMDD. Let’s define what they are and the difference because I think a lot of people have never even heard of PMDD.

KK: I have talked to so many women who so clearly have PMDD, and no one has even mentioned it to them.

What's funny is when we were launching Brazen, we were just interviewing women like crazy. And I would say, "Do you have PMS?" And they would say, "No, I just have really bad cramps." 80% of women have significant life interrupting PMS and cramping, so I was like you don't have any PMS? It's so rare. And they're like, "No." And I was like, "So you don't have breast tenderness, bloating, bowel changes, fatigue, cravings, insomnia, anxiety, mood change?" And they’d [say], "Oh no, I have all of that." They're like, "Oh that's PMS? I thought PMS was just being bitchy."

JM: Mm-hmm. Oh my gosh.

KK: Right. So, I think it changes in every article you will see but there are between 40 and 47 symptoms that are associated with the hormonal shift that happens after ovulation. They are symptoms that are predominantly present from ovulation, anywhere between ovulation and menstruation and typically are relieved by the onset of menstruation.

JM: And we're talking PMS and I know you just gave the timeframe, but just to put it in a more you-can-view-it-on-your-calendar context, we're talking usually seven to 10 days before your period?

KK: 14.

JM: 14, wow.

KK: Yeah. So, ovulation typically should be 14 days before your period and then PMS can start as soon as ovulation.

So women with PMDD, let's define PMDD. PMDD is like PMS on crack. (I actually don't like to say “PMS on crack” because it’s not the accurate way to describe it, but I think it's a way to help people to relate.)

PMDD is a DSM-3 four clinical diagnosis of pretty significant changes, especially immune changes, that occur after ovulation and again in that same timeframe. This is a very, very serious condition that it can incapacitate a person from living a normal life. It's so severe. In fact, that 15% of the people who are diagnosed with PMDD will have at least one suicide attempt in their life. It's really, really significant.

I talk about this is the book and after my book release one woman called me and she said, "I don't know why but my friend told me that I should talk to you. I was just looking at your website, I don't know why she wants me to talk to you but she told me to tell you what's going on with my daughter."

And she said, "My daughter has been diagnosed as bipolar and we've tried to run all these different drugs and she's been having a really hard time. Nothing is really working. She's cutting herself, every day for part of the month."

When she said “part of the month” my ears perked up. The mother told me she had to give her daughter another drug last month and she had a near fatal reaction to it. And then she starts crying and she's like, "I just don't know what to do, we just don't know what's wrong with her I'm so scared. We had to take the door off her bedroom because we were just worried that she's going to kill herself.”

I said, "You mentioned that she's cutting herself during certain times of the month." And this is really... you'll cry for this-

JM: I'm already crying by the way.

KK: She says, "I don't want to sound like a whiner but I swear to God this is related to her period but nobody believes me."

I started crying and I was like, "Well, what do you mean?" And she said, "Well, it seems like half of the month she's pretty normal and half of the month she seems like she's crazy." And she says, "And then it seems like when her period comes she gets so much better." And my eyes were all filled with tears and I said, "Has your doctor, or psychiatrist, or anyone mentioned PMDD?" And she says, "I've never heard of that."

And I said, "Look, I'm not a psychiatrist or a gynecologist. I can't tell you what to do from a pharmacologic perspective. I'm going to just send you the Brazen formula for PMS and I want you just to put her on it for one month in conjunction to whatever she's already taking. Let's just see if there's any change in her behavior."

I told her if there's any change in her behavior when she's taking the formula, we'll know we have a hormonal problem versus a psychiatric problem.

She called me at the end of the month and she was crying and she said, "That was the first time in the last three years that she did not cut herself."

"She was still really bitchy," she said, ""But she's 16 years old."

The next month she called back and she said, “Oh my God, she was even less bitchy this month. And she had a few days even before ovulation that were pretty low so we put her on the formula for the whole month still in conjunction with her psychiatrist and psychiatric care and we're trying to see, could we get her any relief?” By the fourth month the mom was telling me, "Oh my God, she doesn't even have cramps anymore."

The people who are having PMDD are having a really, really rough life and no one believes them.

JM: So we talked about mood. What are the... and I know you said it's PMS to the extreme but PMDD what are the other symptoms that you could connect to it?

KK: Well, any of the symptoms that are associated with PMS, just significantly worse.

What's interesting is that most people associate PMS with just irritability because, you know, the whole bitchy thing, but actually we did a poll of 3200 women and we found that 66% of them reported anxiety around their periods. And that was news to me. I didn't realize that the incidence of anxiety associated with PMS was also very, very high.

In that same poll we asked people to rate their fatigue on a one to five scale, four meaning you need a couple of naps a day to have good energy and five being like “I feel half dead.” 88% rated their fatigue to be level four or five.

JM: Wow. So we're talking PMDD, you're taking all of the PMS symptoms. Like yes the irritability, but then we're also talking about fatigue and cramps and everything is just more elevated.

KK: Right. Bloating, and bowel changes too.

JM: Yeah. Okay so we know what it is and I guarantee there are people listening right now that are having an aha moment about themselves.

So, let's talk about how we can manage these things better. Because we can talk about it all day and we know that, no there's no cure for a lot of these things but I think that there are management tools that we can use.

KK: Absolutely. And I mean, I think before we talk about management the thing that's really important to talk about is that almost every single person that we have interviewed thought PMS and cramping were normal – just part of being a woman. And most would say you can't change it. For me, this was mind boggling.

Last year 80% of women reported life-interrupting PMS and cramping to their OBGYNs, and I thought, "How can we possibly be in a women's movement and not talking about this?"

How can women actually take back their place in society and have dignity and rights and advocate for themselves when part of the month they're incapacitated from their period?

So, the first thing is just identifying that it's not like something is wrong with you or you've done something wrong, it's that your body is desperately asking for support.

If you relate with looking at your menstrual cycle as a way to offer your body self love and self care, as opposed to like “you're broken and you need fixing,” you can look at your symptoms as your body sending you direct signals that something is not working.

Then you can change the mindset around how you approach it. It's not something that has to get fixed immediately because it's been going on your whole life it'll take a couple of months to start seeing dramatic changes. But you should start seeing changes the first month.

JM: I do think mindset [is so important] and I'm not just talking about being positive. It’s [the] mindset of, no, this is not totally normal because either your grandma, or your mom, or your aunt, or your sister have probably told you this is normal, or you've witnessed them in pain or [with] mood swings and said this is normal, or you don't have a woman figure in your life and you just live with a man and they're like, "Oh well, that's a woman thing." …We’re just being beat down to believe that this is normal and [told to] stop whining or people don't believe you. And doctors do the same thing.

KK: They do. I mean, just across the board, women are basically told to stop whining. If you go to the hospital for pain, you're much more likely to get a sedative than a pain reliever compared to a man. And so I think that that's the most important message that I hope people take away from our conversation –– that you don't have to suffer. It's not normal and actually I would say the majority of women CAN have periods without pain and PMS.

If you want to work on this and you're not already tracking your period, start tracking your period. You can do that on a piece of paper, you can do it in an app, but you need to track exactly what symptoms you're having and the severity of them. That's the first thing to do to really understand the lay of the land because once you start paying attention you'll start seeing oh my gosh actually a lot of things change after I ovulate.

Start paying attention to cycle day 14, around ovulation. When you see cervical discharge that's when you're ovulating. And so you have to ask yourself: what happens to my energy levels? What happens to my breasts? What happens to my abdomen? Do I get bloating? Do I have more gas? What happens to my cravings? Do I have mood changes, anxiety, insomnia? Do I have depression or irritability?

I always say one to five is the easiest way to track symptoms because if you're like “good”, good can be fluid and relative from one month to the next, but if you're ranking it like one is fine and five is misery then that makes a little bit easier for you to consistently track. Next Spring you can use the Brazen app to do that but it's not quite out yet.

JM: You know what's crazy is yesterday I was feeling so tired and two days before I was... I felt out of my mind. So yesterday I was like, "Oh my gosh, I'm starting my period." It's like I've had a period for over 20 years now and I forget that more than 20 years I've had it. So you know what I did? I remember that the last time I had my period is the night that I had gone out with my two friends. So I looked back at text messages to see when we had gone out to dinner to figure out and like no, I just need to get an actual app for this now.

So I finally signed up for one yesterday because I'm like this method takes so much time to figure out when I had my last period and there's a ton of trackers that will do this for me.

KK: Yes, it does make a difference to know what's going on and what the odds are. And so, when you plot out all of the symptoms then for each symptom you can understand... so if you think about PMS as the trigger or the report card for various systems. And so if we think about from a physiological perspective, good job, one of the jobs of the liver is to help take the hormones that are responsible for regulating your menstrual cycle, use them and eliminate them. And when the liver works really, really well, you don't have any PMS.

And when the liver is not able, this doesn't mean you have liver cancer you have liver disease, you need liver drugs or liver herbs, it means that the liver and what supports the liver need some attention. And so often when you have a lot of PMS symptoms you'll also see that there will be scanty bleeding or very hemorrhagic bleeding, meaning like too much blood. So ideally you're having four days of bleeding, soaking a tampon or pad every four hours with no cramping, no clotting, no spotting, fresh red blood.

And when you have clotting, it will make you bleed pathological amounts of blood. So women will often say, "Well, oh on day one and day two I actually bleed for enough to soak or fill a cup or whatever every four hours. But then on day three it goes down to almost nothing." And I would say, "Oh, I bet you have clotting on those first two days?" And they're like, "Yes, how did you know?" And I'm like 10,000 patients you can predict it.

And so if you what you have to do first is get rid of the clotting because clotting really contributes to the pain, but also when there's clotting it causes this pathological bleeding. When you get rid of the clotting you'll go from a lot of bleeding on those first three days to more days like what happens on day three and four and it allows you to see actually how much blood are you able to produce?

And if we go back to thinking about food, remember that the amount of menstrual blood that you can make if a feedback mechanism for how effectively you're able to take the food that you're eating, break it down, convert it into energy, use that for the building blocks for marrow, make blood and make a uterine lining.

And so it's a good way to understand, oh well, is the diet that I'm eating right for me? Am I getting enough nutrients that are blood building in it and am I able to take that and break it down and convert it ultimately into blood? And so, when you see that there's very scanty bleeding the liver needs a lot of blood to function optimally and when there's not enough blood you'll see increased symptoms of PMS but especially it will lean towards the anxiety side versus the irritability side.

JM: That is wild because I before I changed my diet and lifestyle I used to get clots that were like the size of a quarter.

KK: Oh yeah.

JM: And now that I don't get those anymore and I've never really fully understood why and now I do. Thank you so much for explaining that.

KK: Sure. I mean, that’s straight Chinese medicine, so if you're a physician you'll be like that's just not even true. But this is just straight Chinese medicine physiology. And you'll just see literally 90% of the time you get rid of the clotting and the volume of menstrual blood will typically go way down. But if you think about as you're trying to use your menstrual cycle as a tool to improve your health like a feedback tool, the first thing you'll see is really bad periods with lots of clotting. And that's the outside layer of the onion. And you get rid of the clotting and you peel it back and you're like, "Oh-oh not enough blood." Okay why isn't there enough blood? Is it because the quality of food is too low or the ability of digestion to break it down is incapacitated?

Or is it because there's so much stress, it's not being managed correctly that that's

impacting digestion? Is it because they're not sleeping enough and that's impacting digestion? And so you have to keep diagnosing back to figure out, oh what's the root of that? What's the root of that? What's the root of that?

Listen to the full podcast here: