Welcome back to the seventh episode of Hello Uterus! Today's episode discusses AUB, abnormal uterine bleeding, fibroids and birth control, and emerging medications that will impact the future of treatments!
Gimme an A! In today’s episode, we break down AUB, AKA: abnormal uterine bleeding. This condition comes for your sleep, your care free days at the beach, your sanity while at work…your everything. It’s a period run amok. It’s not normal. And 1 in 3 people experience AUB. We bring you the symptoms, things to watch out for and what causes AUB. (Next week we’ll get into treatments.)
In this week's Hear Me! Hear Me! Q & A segment, we talk about the relationship between birth control pills and fibroids. Is birth control the solution? And wait till you hear about this emerging medicine to treat fibroids! Is it a treatment if it doesn’t actually treat the fibroids? Thanks, big pharma!
We end on a HUGE high note this week! A breakthrough in cancer treatment, one we’ve been waiting years for, all packed into a…single pill?! High fives to Dr. Ratna Vadlamudi and the scientists at the University of Texas. We can’t thank and cheer y’all on enough.
Thanks for listening, learning and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol:
Let's start with the letter A, as in abnormal uterine bleeding or AUB common and far more horrible than most doctors would lead you to believe. If your doctor won't take your experience seriously, we absolutely, absolutely will. Also, in this week's episode, our Hear Me, Hear Me takes a look at a fairly new medication for fibroids. And we end on a really big, high note. Really big, high note. Cancer is getting a gut punch. This could be the answer. We've waited years to hear a pill that won't piss me off. I'm Carol Johnson, and this is Hello Uterus.
Your terrible period, your horrible, no good, gross, disgusting, long, heavy, painful period may actually be a common condition called AUB. Abnormal Uterine bleeding. One in three menstruators are living with AUP. I'm just wondering about other conditions that one in three people experience that are this unknown. Like, it just strikes me as that doesn't strike me. It makes me mad. It makes me mad that more people who menstruate don't know about something that one in three people will experience. Why isn't Au be more widely understood? I think that's actually something to keep in mind as we continue to talk about this condition, because it seems like the fact that nobody knows about it, but so many people have it would suggest that it's not being taken seriously. That's what I'm going to conclude, that people aren't taking it seriously. The people who experience it are taking it seriously. They're working overtime to try to just live life while experiencing this condition. But it goes undiagnosed for so long. It's pretty shocking when you take into consideration some of the symptoms of AUB and also what those symptoms say about what a normal period is like. For instance, a symptom of a UB could be heavy or prolonged menstrual bleeding. So bleeding through a pad or tampon in an hour or periods lasting longer than seven days, passing clots that are larger than a quarter. Now, I know that a lot of you listening have experienced this. I experienced AUB for over two decades. So I definitely understand in this particular case, I understand what I'm talking about from a first person perspective. I passed clots that were the size of lemons, for sure. There were times where I thought I was actually giving birth. This is before I gave birth. And then I realized what that actually feels like. But seriously, it's painful. People have described having AUV and the type of heavy bleeding that comes with a UV as having a miscarriage. So this doesn't strike me as a chronic common condition that most people shouldn't know about, the fact that an experience could be described as having a miscarriage. Yet these very people that I've interviewed, I've interviewed people who have described to me their periods are like that, that they feel like they're miscarrying. That person went to their doctor and expressed what these symptoms were like. And none of the people that I've interviewed, and I'm talking specifically about AUB. Over 100 people. Not one of them knew the condition or the term abnormal uterine bleeding or AUB. You need to know this and write it down. Some people say it's not a disease, that it's actually a symptom. It's not really a symptom. What it is is a collection of symptoms, one of which is the heavy and prolonged menstrual bleeding. But the list goes on. Painful periods, pressure and pain in the abdomen and lower back, bloated, swollen abdomen, frequent urination, constipation pain during sex. This is happening every month. This isn't like, oh, remember back in 1973 when you had AUB? No, this is like you remember two weeks ago when I had Aug? Yeah, I've got it again. Now. Next month is going to be the same. As a matter of fact, there are some times during the year where I have AUP all year long. Oh, really? What is your doctor doing about that? What you mean something can be done about it? Yeah, something can be done about it. That long list of symptoms. I personally feel like it takes the sting out of AUB. It kind of clinicalizes. It makes it seem all clinically because we know what it's like to bleed out on your boyfriend's parents couch. We know what it's like to get out of the car and feel what feels like a small baby emerging from your vagina and sliding down your leg. And I'm going to be gross, because if we don't say it like it is, we don't snap people out of their stupor. And by people, I mean physicians. I've spoken with people who for years in their prime of their life, which is essentially what, 20 to like, 20 to menopause. Right. Primarily, who have described themselves as being gross, dirty, broken, on edge all the time, not able to do the things that they love to do. I mean, I've interviewed girls who have had to give up athletic pursuits because of their period and women whose marriages crumbled because of their period or more specifically, because of abnormal uterine bleeding, because, again, a normal period does not cause this. A normal period is not something that upends your life in any way, shape or form. That is not normal. A normal period is a little bit of discomfort. What's? A little bit what you comfortably can tolerate a day or two of. Yeah, not bad. I might have had to take Motorin or an ibuprofen, but that was pretty much it. But you and I know that there are millions of women who have nothing close to that kind of a period experience, but they're treated as if their periods are normal. It's not normal. We've all been conditioned to believe that a period is a period is a period. There's a big space between a period and cancer. And it seems like we think about like, okay, my period is what it is. As long as it's not cancer, I'll deal with it. But no, there is a huge area in between the normal period and cancer where a lot of conditions can happen that end up creating ripple effects that could impact things like infertility all sorts of stuff or the place to start. Maybe if your period is something that in any way negatively impacts your life is to start with AUB. Start with the letter A, abnormal uterine bleeding. This is not something that you want to let continue. This could be happening to your daughter. Imagine being in high school and worrying about getting changed to gym or playing basketball in front of the school. There are millions of girls and women who deal with this condition every year. And from my perspective, having worked specifically with AUB for the last five years, it is largely ignored. It's minimized. And maybe it's because we've been shamed into not talking about our periods or we've turned them into this hidden horror. That must mean that we are a horror, too, because it's our period. And so we just get small and we want to be not seen and hopefully not smelled and not embarrassed in public and all of those things. And then we show up at our annual exam and the doctor says, how are your periods the same? And then maybe they look at the chart or maybe you gave a little more detail and you said they're really bad. And the doctor says that's normal. And so you think, oh, okay. Well, I guess I can't complain about that anymore. Well, it's not normal. That's why it's called abnormal uterine bleeding. Only they don't tell you that, oh, your period is normal. It happens all the time. If you want, we can talk to you about some birth control pills, and if that ends up improving your symptoms, then you're good to go. So do you want to take a hormonal pill for this? You're like, Whoa, I don't even know what the heck it is. Or your response might be like, oh, I'm trying to get pregnant. So no, I don't want to go on birth control pills because I'm trying to get pregnant and the doctor doesn't connect the dots. They're like really bad periods and trying to get pregnant. Maybe we should take a closer look. So we're going to do a little bit of a deep dive here into the causes of AUB and hopefully help you connect the dots between what you're experiencing, what you're feeling with your period every month, and what may be the cause of it, and how you can get it diagnosed. So causes of AUB. There are two categories of causes of AUB. Think of it like an overarching term that describes a variety of things that could be going on in and around your uterus, your ovaries, what they call reproductive organs. They're more than that. So I don't like to use that term exclusively anyway. Structural. Non structural. We'll talk structural first, fibroids. Hollyps, those are structural causes of AUB. Also adenomyosis. When the endometrial tissue, the lining of your uterus is within the walls of the uterus. So it's not just lining it, but it is found within the walls of the uterus. And malignancy, which I'm happy to tell you is super rare. So if your periods are really bad and you're tweaked by the potential for some scary diagnosis, it's possible, but it's ludicrously rare. Nonstructural causes, they don't involve an actual thing present in your uterus. It's something more like a coagulation disorder. So your blood is not able to coagulate and you have heavy bleeding or you have a thicker than typical endometrium. So the lining of your uterus is thicker than normal. And in some cases it can get really thick. And that can cause really bad periods, a lot of clotting. And again, normal period is if you have clots, they're smaller than a quarter. Another cause of non structural AUB is iatrogenic, meaning that it's caused by a medical treatment itself. So maybe there's an issue with an IUD, or there was some sort of an injury during an exam and that caused your abnormal uterine bleeding. But generally speaking, the most common causes of AUB, the things that come out more often than anything else fibroids, polyps, and a thick endometrium. And as we talked about a few episodes back, definitely check out the blog@helloyutors.com. On the episode on fibroids, we talked about the different types of fibroids and where they can be. Fibroids that are most commonly causing AUM are ones that are within the uterine cavity. You can see them in the small, narrow space between the two walls of the uterus. Polyps can become cancerous. Fibroids rarely, if ever, become cancerous. Super rare polyps definitely can become cancerous. So you want to know if you have polyps and if you have them, you want them removed. It's kind of like getting a mole removed. If you see a mole changing, you want that mole looked at and there's a chance that it could be cancerous. And so they will take that mole out and the tissue that surrounds the mole so that they get all of the cells that are in that mold and they'll take it out. Same with the polyps. They'll remove the polyp. You also want to know if you have fibroids because both fibroids and polyps can contribute to infertility, which is infertility is another symptom of AUB. You've got your super bad bleeding and you're also trying to get pregnant and you're not able to get pregnant. So you want to know if you have fibroids or polyps polyps because they can become cancerous. Fibroids because they can complicate getting pregnant or complicate your ability to maintain a pregnancy. So within the structural and nonstructural causes of AUB, what are the most common? Ovulatory dysfunction is the most common cause of AUB. Among the nonstructural causes, endometrial polypse, the most common among the structural causes, followed by fibroids and then adenomyosis. If you're experiencing symptoms of AUB, I just want to tell you that you have all the permission in the world to demand a definitive diagnosis. This is how I would handle it if it was myself, if I went into a consultation and I explained my periods are really bad. I'm bleeding through my tampon and my pad within half hour an hour. I'm bleeding for 1015 days at a time. And your doctor says, this is normal. You say, no, it's not normal. I understand what you're saying. What you're telling me is it's common, but it's not normal. So I just want to correct you there. And then your doctor says, what we can do is we can try birth control pills and see if that helps with any of your symptoms. You can demand a preference for a definitive diagnosis by saying, I understand that medical management is the first line of treatment here, but I want a definitive diagnosis. I'm concerned that I might have polyps, which can become cancerous. Therefore, I don't want to just have my symptoms relieved. I want to understand if polyps are, in fact, causing my really bad periods. And you don't have to take birth control pills or hormonal pills if it's not something you want. And I say that having had to decline, that because it took me about ten years to get pregnant. I didn't get pregnant until I was 40. And of course, I really wonder, Gee, could it have been that I have fibroids and polyps that whole time? No one ever suggested that I should go through some sort of a diagnostic experience to figure out why my periods are so bad. This was the extent of the advice that I received. I'd be super curious to know if yours was different. When I called the doctor because I'm experiencing really bad symptoms, the staff would say, Go to the emergency room if you feel like you're going to pass out, if you feel dizzy or like you're going to lose consciousness. That was the extent of advice and guidance that I received, which is really bad because we women minimize stuff. Anyway, so when I hear emergency room, I think that's for emergencies and this is my period and I get it every month. So it can't really be an emergency and you're not acting like it's an emergency. So why should I go into the emergency room and pretend that it's an emergency when it's not an emergency? What I need actually, is a diagnosis. I don't need a 1500 or a $2,500 bill from the Er room. So how is it diagnosed? Well, there's the feeling around method, which is not my ideal method, but if you have big fibroids, it works. That's where the doctor places two fingers up towards your uterus and pushes down your uterus with the other hand from outside your body, and they feel around in there for the size of the uterus, the three X two X one. Is the uterus a normal size? Remember, three X two X one, three inches tall, two inches wide, one inch thick. And in that little organ, they may be able to feel fibroids. The chances of them feeling a polyp is not likely because polyps are very soft. They're the endometrial tissue. Fibroids can be very hard because they're made from the cells that make up the uterus. They're like hard muscles, a hardest ball. Not necessarily as hard as a golf ball, although some can be if they're calcified, but definitely not fluffy. So if they're big, your doctor might be able to feel them. But what if they're not big? They're still problematic. The other thing I want to mention is, in this diagnostic process, turn on your intuition. Pay attention to your gut feeling. If you don't like the way you feel about what's being said to you or the way a diagnosis is being handled, trust that feeling. So the feeling around method. And then there's abdominal or transvaginal ultrasound, which if you had ultrasound, if you've been pregnant, you've had it. It's the wand that they place on your abdomen. And using sound waves, it's able to visualize what they're sort of hovering over. So in the case of a uterus, it can visualize the uterus. It can visualize structural abnormalities in and around the uterus by essentially sending in sound waves. It bounces off, comes back and is red. And then, voila, you have a picture. A hysteroscopy is the interior examination of the uterus with a camera. And then there's something called a sauna historagraphy. This is something that we will put in the blog post, and you should check it out and become familiar with this word and actually with all of the methods to diagnose AUB, because the more familiar you are with them, the more comfortable you will be in a consultation, asking your doctor, what diagnostic method are you using and why are you choosing to use that one? And these are the kinds of questions we need to start asking. So the Sono historography saline is used to fill up the uterus. So it helps move the two walls of the uterus, which are pushed against each other in its non pregnant state. It helps move them apart so that you can see better. That's simple. The interior of the uterus is more visible. It's easier to distinguish between fibroids and polyps, and you can even measure the thickness of your endometrium. That's a really good method. It's easier than a hysteroscopy. According to a cog, the American College of Obstetricians and Gynecologists Asano. Historiography totally butchering. That I'm sure is superior to transfaginal ultrasound in detecting intercalvatory lesions. That's what they call polyps or submucosal fibroids, which are the fibroids that you are able to see in the uterus. Then there's also the MRI, which is the big machine. It's super expensive. They inject a contrasting material into an IV that enables it goes, how does this work? We'd need to have somebody come on and explain it, but it ends up going to where it needs to go. And then the MRI can take this super clear picture of your pelvic area. Awesome. But you don't have to go to those lengths right out of the gate. At the same time, you also shouldn't necessarily rely only upon the feeling around method, because that's not always accurate. And not only that, but with the feeling around method, you don't get to put your eyeballs on anything. You're really trusting that what they're feeling and what they're communicating to you that they're feeling is what is actually there. And I'm a cynical old lady at this stage in the game, and I'm not going to buy that. If it was me, I want to put eyeballs on an image. Might I get a sonohistography out of the gate? I'm going to press for it. I'm definitely going to ask the doctor qualifying questions to determine which is the best route. I am focused on understanding the best modern treatments for the diagnosis that I have. So that is what AUM is and how to diagnose it. And next week, we're going to get into treatments for AUB, including a deep dive into minimally invasive treatment options, which are the options that sit between birth control pills and hysterectomy. And as we've said before, not all doctors offer all options. So it's most important that you know what all the options are so that you can pick the doctor who offers the option that you prefer based on what your needs are. Okay, we're going to take a quick break, and when we come back, we'll have our Hear me, hear me
Help bring an end to endometriosis by participating in the Rose Study. The study of menstrual blood may hold the key to the why of Indo. From there, treatments are born. Participate in the Roast study today. Visit Heliotrous.com and click on the Rose study blog for more information. Or simply Google Rose Study for Endometriosis. It's the first link. Please participate if you can, you could hold the key to the future for all uterine kind. Thank you. Now let's get back to the show.
Carol:
Hear me, hear me. This week is from my periods have a name and then what followed? That is a whole series of symbols which typically come together to create a string of swear words. I'm not going to try to decipher the string of characters from my periods have a name like those characters are their characters to decipher. It is not for me to decipher them. I'm just going to assume that they are swearing loudly. The question is, do birth control pills make fibroids go away? Sadly, no, they don't. They don't make fibroids go away, which is why it's so important that you get a diagnosis. Because if you go in to your physician and you say, My parents are bad. I'm bleeding through everything. I can't do anything. It's really bad. And you're going to really have to be specific with them. And they say, okay, well, what we're going to do, I see this all the time. It's so normal and blah. We're going to start with birth control pills. Well, the bad news there is you start on birth control pills and they have no effect on the fibroids. There might be some relief in some of your symptoms, but the actual fibroid is not going to go away and may continue to grow. We know that they grow slowly based on our expert interview with Dr. Elizabeth Greg that they grow slowly. However, they also can ramp up really quickly if they're growing slowly. And you're taking birth control pills or a depot shot or some kind of treatment to help you with these symptoms, you're not actually treating the fibroids. You're just bandaging. Bandaid over fibroid. The treatment for fibroids generally involves the removal of fibroids. Some doctors will remove the uterus to remove the fibroids. We've talked about that. We'll continue to talk about that as not the direction you want to go in, right out of the gate. And then they're minimally invasive treatments for fibroids. These are treatments that doctors will have to learn how to perform, and they have to perfect performing them because they're surgery. But now there's a drug marketed as a treatment for fibroids. It's called My Fembri. It's like the worst name ever. But most drug names are really bad. I mean, even I could come up with a better name was like 15 free minutes of time than My Fembri. That's what it is. We'll link to the FDA labeling. Remember the trick last week? If you want to find out what a drug is all about, Google the name and FDA labeling. And what will come up first will be the FDA labeling for that drug, which is where you should go to get information on that drug. My February comes from My Event Sciences and Pfizer. It was approved by the FDA in 2021. So let's unpack this puppy. You can't take it with birth control, and it isn't birth control. If you're taking birth control, you can't take it. And if you need birth control, you can't take it. I guess you could take it. And then you would need to rely on condoms for birth control. It is hormonal, and it can only be used for 24 months because if you use it for longer than that, it's bad. What? Yeah, that's exactly what it says. You need to discontinue use after 24 months because at that point in time, the loss of bone density that you experience could be really bad and you could start fracturing bones. This loss of bone density, it's not something that you can cure or reverse. So this particular pill is three different medications in one. Two of the medications are present in order to modify the negative impact of the first medication. The indication for this is heavy bleeding due to fibroids. So in order for that to happen, pay attention here, because heavy bleeding due to fibroids, that means that you must be diagnosed with fibroids and have heavy bleeding. So my question is, why aren't we removing the fibroids? Why are we treating the root cause, the fibroid? This strikes cynical me as a way to prolong surgery. It doesn't say that it shrinks the fibroid, so they're still growing. And I'm left thinking in my judgy brain that this is for the physician who doesn't want to master fibroid removal. I'm sure there are edge cases of patients who can't undergo surgery for fibroids. Not sure what the reasons would be there, but I'm sure there are edge cases like that or for patients whose fibroids have grown so large that my fembri may shrink them to enable removal. Right. So you have fibroids, but they're really big. And your physician says, we're going to try this medication to shrink them in advance of surgery. But if a physician is like, you have fibroids and we have this miraculous new drug, my fembri, it's going to help with your bleeding. And it does 70% to 80% of people have improved bleeding. Their bleeding has been lessened during the trials of this drug. It's like a weird situation because if you know that you have a structural issue in your uterus fibroids, then why not remove the fibroids in a minimally invasive fashion? I don't even think this is one of those drugs that you can celebrate because to me, this feels like a pharmaceutical company wanting to have a place at the table when the conversation is about fibroids. And they figured out, oh, this compound over here did this. Let's see if it does something for fibroids. Oh, hey, look, it does something for fibroids. Maybe we can market this and make a billion dollars. But the problem for the patient is that the fibroid is still there. And so is anybody talking to them about the fact that the fibroid, by still being there, is still potentially growing and also can complicate other issues. The bleeding is not the only issue. So if you are trying to get pregnant and you have fibroids and they're not being removed, maybe that's part of the reason why you're having difficulty getting pregnant. Or if you're suffering a lot of miscarriages, could there be fibroids there that are making it difficult for the uterus to maintain that pregnancy? New drug alert. But Yikes. So it's interesting. It's interesting that word has many definitions that instead of plowing money into technology that removes fibroids, pharmaceutical companies are coming up with drugs that keep the medical management drawer full because that's what Pharma does. And we're not totally mad at that because we are going to end on a high note and it's all because of Pharma. We're coming for cancer.
Well, actually, ERX 41 is coming for cancer, ERX 41. It sounds like a protein supplement or maybe like a motorcycle, I don't know. But it's not. It's a protein that destroys hard to treat cancers. And it's been discovered by scientists at the University of Texas led by Professor Ratna Vadlamudi. This is the most exciting research that has come out in cancer research in a long time. So, like I said, protein that destroys hard to treat cancers. They're experimenting on mice and human tissue. And I'm going to read a quote from the professor about their discovery. We identified a critical vulnerability in multiple cancers, multiple cancers, and have validated our findings in multiple cancer cell types and animal models. The range of cell lines and xenographs in which the compound has been shown to work is compelling and indicates that it is targeting a fundamental vulnerability in cancer cells. So what he's saying there is that in these mouse models, they're growing tumors like breast tumors, pancreatic tumors, and they're also growing them in human tissue, in petri dishes. And then using this compound, ERX 41, they witness what happens to the tumors. And what they've discovered is that it leaves healthy tissue unscathed. It does not touch any healthy tissue. It only targets the cells that are misbehaving. And that's what cancer cells are. Cancer cells are cells that won't die, rogue cells that continue to grow and multiply, grow and multiply. And this protein is able to separate those cancer cells from any healthy cells and target only the cancer cells and kill them. That is where Pharma needs to be. All the money should be plowed into these types of treatments and this type of research, if you can figure out a treatment that can actually a pill that can make a fibroid die, dissipate. Awesome. But if the pill isn't going to do anything to the fibroids and only help the bleeding, that's not a not a cure. B also not necessarily a smart way to go about dealing with fibroids, but in this case, in the case of ERX 41, big cheers. This is so exciting. And we're talking about really aggressive and difficult to treat cancers like breast, pancreas, ovaries, and brain. So thank you to the team at University of Texas. Thank you, professor Ratna Vadlamudi. It is super exciting. And we will watch this research. They're going to be doing clinical trials in early 2023. And the Dallas based company that is running those clinical trials, and it's a biotechnology company, and they are the ones that are developing this treatment. And their name is Etira RX E-T-I-R-A RX. So keep your eye on that. I hope that by talking about research that's happening that you get excited about it and that you follow it, because by paying attention to it, you're more in the know about the things that you can take advantage of if you encounter any health issues and you'll just be ahead of the game. And that's kind of why we're here to keep you ahead of the game and out of limbo and healthy and happy. So thank you angel for producing this podcast. Thank you for getting rid of all of my brain fog in this podcast and others I'm sure thank you team at Uterine Kind. They're working behind the scenes to build a comprehensive platform that is going to help you manage your uterine wellness and it's really exciting. I get to see what's happening there. This is going to be a tool that you're going to want to have in your pocket for sure and thank you for being here. We're really appreciative that you make the time to listen to this podcast. We hope that it's really helping you feel more confident and sure of your uterine wellness. Don't forget to send your questions to hello at Hello Uterus.com along with your preferred stage name and we'll get them answered and visit Hello Uterus to sign up for updates on our progress and have an amazing week. More cheers please for ERX 41 a thrilling, thrilling discovery and we'll see you next week.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is to not be used to diagnose or treat any medical condition. Please speak with a physician about your health conditions and call 911 if it's an emergency and thank you Uterine Kind for listening.