In this episode, we journey into the uterus and shine a spotlight on adenomyosis, another beast of a condition that can be debilitating. And its diagnosis often overlooked.
As endometriosis awareness month closes, adenomyosis awareness month kicks off! Both conditions are underfunded, misunderstood, and can come with debilitating symptoms.
Adenomyosis deserves more awareness, so today we’re putting a spotlight on it. We take a journey into the uterus and break down what adenomyosis is, the difference between endo and adeno, what it may feel like, and signs to look out for.
So who or what do we turn to in times of need when living with such a condition? Surely the health industry is on our side, right? Well, kind of!
When the financial health industry benefits from our pain with chronic conditions, their concern is not with us healing. Insurance profits are doing extremely well, which is extremely bad for us. Carol gives us an oversight of this insane cycle that is harming us and putting money into the pocket of those who benefit from sickness.
And as usual, we end on a high note that will blow. you. away. 🌬
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol: As endometriosis awareness month closes, adenomyosis awareness month kicks off. Both are underfunded, undiagnosed diseases that destroy the quality of life of those who live with them. And the industries we look to for help largely ignore them because, well, I don't know, female and corporate financial health is more important than our quality of life.
Uh uh. I don't wanna believe that. You know when you look at what's happening, I'm Carol Johnson, and this is Hello Uterus.
In this week's episode of Hello Uterus, we're shining a spotlight on adenomyosis, but first uterus in the news. I felt this maternal urge to check in on the insurance companies. You know, we're concerned here at Hello Uterus, but we shouldn't be because in 2022 revenue of 1.25 trillion and profits for insurance companies soared to 69.3 billion.
Meanwhile, hospitals are in the. Maybe it's hard to tell because we lack transparency, but we do know that clinicians spend more of their time begging insurance companies to cover treatments, especially in female healthcare today, more than ever before, the prevalence of chronic illness continues to escalate accounting for 75% of US healthcare costs, according to the CDC d c.
And 30% of claims are either denied, lost, or ignored. According to the Center for Medicare and Medicaid Services, I have a solution given that chronic diseases are common and impact more people younger in life, and these chronic diseases are largely not genetic, I immediately think of petrochemicals. How about you?
Let's check in on their financial. Well, big oil more than doubled its profits in 2022 to 219 billion smashing previous records. Yeah, so they're doing fine while poisoning all living beings and the planet herself. This leads me to three things that must. Balance funding for health research to equal amounts for conditions that primarily or exclusively impact the female body.
Female health research now gets a whopping 1% of the 220 billion worldwide for research for non-cancerous conditions. If you factor in cancer, that goes up to another whopping five. We need to balance funding for health research. The second thing that must happen is we have to hold petrochemical companies accountable for the impact of chemicals on our health kill, generally regarded as safe.
A loophole which is harming humans and the planet and force the petrochemical companies to pay for care of chronic diseases, pull products that harm humans and the planet and in general, find their moral compass. And the third thing that must happen is remove the must be medically necessary veil of protection from insurance companies that refuse to cover treatments.
When it comes to female health, the only thing that seems to be medically necessary is birthing, especially if you live in. Idaho, Idaho. You say, what's up in Idaho? Well, before we head there, if you're enjoying this podcast, please subscribe and we would be so grateful if you would write a review so that those who would benefit from this information can find Hello Uterus, where they get their podcasts.
Your support helps us get found. So thank you for subscribing wherever you get your podcasts and for writing a review. So now back to Idaho. Currently rapists cannot sue people who take a pregnant minor across state lines to get an abortion ca for a pregnancy caused by their choice to rape that person.
But an Idaho Senate amendment to the so-called trafficking bill would delete that part of the code and allow rapists to bring a civil case, and that is the wildest shit I have ever heard. Angel, can you just do the beep on shit? That's what you get in Idaho. More rights for rapists and dehumanizing females who in Idaho apparently are primarily in existence for the purpose of forced birth.
If the market is aiming to support rapists there in luck, rape is on the rise in Idaho. The Idaho State Police Bureau of Criminal Identifications Crime in Idaho annual report showed 728 cases of rape or attempted rape reported to law enforcement statewide last year. That's nearly a 12%. From the previous year when 651 cases were reported, when considering that number 728 cases of rape reported factor in this stat, more than 90% of women who are sexually assaulted on campus choose to not report according to the National Sexual Violence Resource Center.
If you live in Sandpoint, Idaho, that forced birth better be in your house because Bonner General Health, the only hospital in Sandpoint, Idaho, announced that it will no longer provide obstetrical services to the city of more than 9,000 people. That means patients will have to drive 46 miles for labor and delivery care moving forward.
That is gonna be a whole lot of fun in the.
Banner General Health is counting on other hospitals and clinics to take up the slack, and there's gonna be a lot of slack with essentially a revenue stream tied to rape. But those facilities have indicated they aren't accepting new patients. OBGYNs are leaving practice. And in some cases leaving the state to practice elsewhere.
So if there's some great strategy here, it seems that Idaho wants lots of babies born to adolescences, and that tracks with the whole get 'em pregnant, young for the best offspring, nonsense. The cruelty, as many people say accurately is the point. It's also obscene as is the level of stupidity.
Lastly, picking up on not so subtle clues in the Idaho statute, it's interesting that physicians are referred to as him throughout the statute, and when referring to the person who is pregnant, they use woman, though many will be children, children, There is no place for government in the uterus. There's no place for insurance companies to determine that something is not medically necessary. When clinicians say that something, a treatment, a procedure is medically necessary,
and for goodness sake, we really need to be calling out petrochemical companies for poisoning our water. Our environment for creating products that we pay money to acquire that then in turn poison us, man. Often the information in this podcast feels brutal. Sounds brutal, is brutal, but we have to be clear about the state of the uterus together while being informed.
We can then push back harder. So thank you for paying attention and thank you for listening to Hello Uterus. We'll be right back to kick off Adenomyosis Awareness month.
April is adenomyosis awareness month, and there's a lot to learn about this underdiagnosed and under-researched condition, which is something that we can say for virtually every single condition that impacts the female body. So what is adenomyosis? Adenomyosis occurs when the endometrial tissue, the tissue that lines the uterine.
Is found in the muscular walls of the uterus, which is called the my endometrium layer of the uterus. This tissue, unlike endometriosis, is the endometrium in endometriosis tissue that is similar in some degree. Two endometrial tissue is found outside of the uterus growing on organs like kidneys and ovaries, and the bowel and the bladder.
It can be found anywhere in the body. That's endometriosis. Adenomyosis is endometrial tissue located within the walls of the uterus. And it's very common. In fact, it's more common than endometriosis. Approximately 20% of females have adenomyosis, and that may be a low ball number because it's very difficult to diagnose, and most diagnoses of endometriosis occur after a hysterectomy when the uterus can be observed, so it could be more than 20%.
So this tissue that is located within the walls of the uterus responds to hormonal fluctuations during the menstrual cycle and swells and sheds blood, which has no place to go. This leads to an enlarged uterus. It is a cause of abnormal uterine bleeding, contributes to pelvic pain and infertility. As I said at the top, we know very little about this condition from what I found.
Researching the N I H database, they devoted this much money to adeno research in 2022. One giant pained, swollen, bleeding, goose egg, as in nothing. I found one grant for one and a half million dollars that was specific to studying endometriosis, adenomyosis, and fibroids. One and a half million. That's gonna get you not far at all, so it is.
Common. It causes debilitating heavy menstrual bleeding and pain, and it can lead to infertility, it can impact other organs if the uterus is swollen and we know very little about it. So this is a condition. That we've gotta start shining a spotlight on because so many people are impacted by it. And, and out of all of the conditions like endometriosis and fibroids, adenomyosis, P C O S, adenomyosis is the one that, that seems to be the trickiest.
It impacts a lot of people, but it's really, really hard to diagnose unless you have a hysterectomy. And that's something that people want to avoid if they can. So they're not gonna be like, yeah, sure, pull my uterus out so I can figure out a A via anom. Myosis. It's a bit of a, a giant leap to make.
So hopefully with. Just a little bit of funding, we can start to get at what causes adenomyosis and create some treatments that are beneficial and hopefully non-hormonal and lack the side effects that we're seeing in treatments that are, are being looked at today. So let's start with what causes Ayo.
Again, we have no known definitive cause, but the theories are in the multiples microtrauma of the endometrial, my endometrial interface. So that's the area within the uterus where the endometrium, the endometrial layer, which is the layer that. Is inside the cavity. So if you go into the uterus, travel with me right now as we go into the uterus.
You go into the uterus, the first layer that you're gonna see is the endometrium. That's what is shed each month during the menstrual cycle, if you have one every month, it's shed during the menstrual cycle. And then the next layer after the endometrial layer is the my endometrium, and that's the, the middle layer of the uterus, which is essentially a muscle, not unlike a calf muscle or a bicep muscle.
The third layer of the uterus is the outer layer of the uter. The Ciero side, so microtrauma of the endometrial, my endometrial interface, so kind of punching a hole. It could be tiny in between the endometrial layer and the my endometrial layer, which would then enable endometrial cells to progress into the my endometrial layer, and then take root and respond to the hormonal fluctuations during a period.
So essentially the endometrium is migrating into the, my endometrium, not as a result of a micro. Which could be something like the insertion of an I U D, which punctures the endometrial layer and moves into the my endometrial layer and it carries with its cells. In this case, it's the endometrium on its own migrating or invading into the my endometrium.
Another cause is stem cells located in the My endometrium that then begin to act like endometrial cells. Fourth cause may be infiltration of endometrial cells in re retrograde menstrual effluent into the uterine wall from the ciero side. So that means essentially that menstrual effluent flows out of the fallopian tube rather than out through the cervix and vagina, and then implants itself into the ciero cell layer of the uterus, the exterior.
Covering of the uterine organ
And once in the myometrium it continues to grow and respond to hormonal fluctuations.
Another potential cause is abnormal uterine development in response to genetic and epigenetic modifications. So we have a handful of potential causes, but we don't know exactly what causes it. And within that information, when finding what is actually at the root of. Adenomyosis when you understand the root cause that makes it possible to develop diagnostics that don't require a hysterectomy and also treatments.
That's why this research is so important. The, the basic ground floor level research is so crucial to finding what the biomarkers are for the condition and developing diagnostics off of that information, and then leading to treat. Adenomyosis is one of the leading causes of abnormal uterine bleeding, and it, it is part of the Palm coin diagnostic criteria for a u b.
So if you are experiencing heavy menstrual bleeding, bleeding that is in excess of 5.41 tablespoons per cycle, not per hour or per. That is an indicator that you may be experiencing. Adenomyosis,
Anom. Myosis is a brutal condition. It significantly reduces the quality of life for people. Makes it very difficult to work. While experiencing adenomyosis flares, which can lead to again, heavy, heavy menstrual bleeding and pelvic pain, that makes it difficult to not just work, but just to be able to enjoy and engage with life.
And unfortunately, it can coexist with endometriosis,
the cost associated. Endometriosis Adenomyosis treatment in referral centers is similar to that of other chronic diseases such as diabetes, Crohn's disease, and rheumatoid arthi arthritis. Yet in contrast to those disorders, endometriosis and adenomyosis are not recognized as high impact disorders by general practitioners society.
Any funding organizations and the pharmaceutical industry do in no small part to the lack of awareness of these two diseases and the lack of basic research of the female body. And because women pain ick, period, they're probably faking it. Suck it up buttercup. We, we, we know all that. Right?
Just to restate it in as in as plain language as possible. These conditions, because they impact the female body, get relegated to the end of the line when it comes to handing out money to conduct research conditions that impact half the population conditions that we do not underst. That destroy quality of life, that lead to significant economic impact indirectly.
Indirectly. And there's very little that's being done. To support those living with these conditions and to help them get diagnoses faster and develop better treatments for them. You know, so it's just, it is yet another example of how females do not have equal rights in the United States. If we did, then we would be able to demand equal research and equal emphasis in terms of attention.
And care on these conditions and on the people who suffer from them. So both endometriosis and adenomyosis are at estrogen dependent. They're both chronic and they both are considered inflammatory disorders. They differ in key areas, though as we discussed that the, the adeno tissue is within the uterus and the endo tissue exists outside the uterus.
So while hormonal drugs are the, basically all we have right now in terms of current therapeutics, we all know that these drugs. Have side effects that are not well tolerated by people. And I think for, for a long period of time, those side effects were completely and totally dismissed by the vast majority of healthcare providers.
People were told that birth control pills couldn't possibly be causing these side effects. That you know, no data exists that shows that these side effects can be attributed to birth control pills. Whenever no data exists is said, it can often mean studies haven't been performed. Not that the studies were conducted, and the results indicated that there's no connection.
It's just that the connection hasn't been studied.
There was a recent survey of 1,420 patients with endometriosis in Austria, Germany, and Switzerland, and they found that an overwhelming proportion of them hold a negative attitude toward hormonal drugs, and the majority of them disliked the side effects of these drugs, especially among the young, remarkably.
95.3% of the survey is expressed preference for plant-based products, preferably in oral form. I'm not sure how the pharmaceutical industry is gonna react to that, and I don't know what potential therapeutics are being derived in that area, but we're gonna do some research on it.
But the fact remains that hormonal medications. Are basically all we have to turn to. And by and large, they're not sufficient. They suppress some symptoms while the conditions progress. They cause side effects in some cases, very difficult to tolerate side effects, and people want other options, and those other options will only be found through research.
We have a long way to go. We have a long way to go, but we don't have any time to wait.
People have given up a decade or two of their lives. To living with these conditions. They have lost jobs, lost money, they've lost their fertility. I'm not sure what else needs to happen in order to sort of shake leaders in organizations that can, can positively impact the experience of people living with adenomyosis to sort of shake them awake to the fact that we need funding.
Being repetitive, but seriously it is. It is the the thing that needs to happen in order for all the other things to happen.
83 clinical trials on adenomyosis have been registered@clinicaltrials.gov as of June of last year, with only two exceptions. All trial drugs are hormonal since just it's just new flavors of birth control. And on the ones that aren't hormonal, it's kind of sketch. One trial is on the use of a vaginal ring containing a co a a chemical. Gonna do it one more time. One trial is on the use of a vaginal ring containing Bromo Krypton. A pilot study found that this therapy is effective in improving heavy menstrual bleeding and pain during the menstrual cycle in women with Adenomyosis. A recent study on 18 patients with diffuse anom, myosis meaning anom myosis that is spread throughout the uterus rather than isolated in one or a few key areas. These patients complained to he heavy menstrual bleeding, and also reported that treatment with vaginal broo crypt for six months resulted in a significant decrease in some key factors that indicate the the progression of adenomyosis.
Another trial on the use of vaginal ring containing Quin Goli. To treat adenomyosis has been completed, but they have not published the results yet. The trial was completed last year, 2022. So we're still awaiting that. The side effects here, especially with Broo, Krypton, are not for the faint of heart.
In fact, you might actually faint, but that's one of the least problematic side effects. The list of side effects for this drug with oral use are one of the longest lists, is one of the longest lists I have seen. For drug side effects. Now, the trial that I just mentioned is for vaginal delivery of this drug, so the side effects because of the local nature of the delivery could be less one would hope.
I also read something recently about failed clinical trials and how they are often not published or do not indicate why they failed, but only how they fail. Maybe the why isn't fully understood, but by making these failed trials public, the learnings would benefit all future trials. So I, I really hope that there is a sort of a movement to share data amongst the various organizations publicly and privately funded that are conducting trials.
I mean, we have enough battles to fight, just to fund research to begin with. So if we could just all work together so that everyone can learn from failed trials, that would be really great. You know, when getting a company or the n i h anyone to fund a clinical trial, they look at, they look for reasons why not to fund it.
You know, they, they look for things like, well, is there any. Science that suggests that this trial would work. Um, do we have data that indicates that this might be a successful trial? And unfortunately, when it comes to female healthcare, we don't have that data because that research has not been funded.
So it's just this, this circuitous. Bananas experience where people can hide behind things that are red herrings. Right? Well, we don't, we lack science that indicates that that would be a, a positive path to take. It's okay. Let's take the path so that we can actually conduct the sci, the research to get the science.
You know, it really, it is. It is just so clear. It's so clear that, you know, why are we in this position because female, so hopefully we can get individual organizations to start sharing more broadly because we know we don't have a lot of time to be doing things the way we've done them in the past. We actually need to be making great changes with how we've done stuff in the past in order to To accelerate research so we can accelerate learnings. It always comes back to research. We really need to stop shafting female health. When and when you factor in. One of our hot topics here on Hello Uterus, the disruption of the endocrine system and the reproductive organs in the female body due to the toxic chemical soup we swim in every day on a system we know almost nothing about, and the rise in chronic conditions with no known causes.
When you factor all that in, Well, I can actually, I can suggest a few causes. They, they are all chemicals. But anyway, when you factor all that in, we are in a problematic state and only coming together will help balance the scales. So we need to be bringing every stakeholder in female health to the same.
We need insurance companies there so that we can essentially shame them into being more compassionate and supportive of the female system. Given all of the stuff that I've just stated, we have little research people are really suffering. These conditions might be called benign, but their impact is certainly not benign.
We need you to stop dismissing claims. We need you to provide. Better coverage for these conditions. We need manufacturers at the table so that they can understand that we are counting on them to go above and beyond hormonal treatments for the myriad of conditions that affect the female body and that we, we will support them.
We will support them as they embark on research as they. In a collaborative fashion with other manufacturers and other research organizations to get all of their learnings out on the table so that we can all benefit from them. We need an accelerated pace of discovery when it comes to female healthcare and in order for that to happen, everybody's gotta work together.
And I don't, other than prophets, I don't see any reason why everyone shouldn't show up to that. But I, I just wanna point out that the economic impact as a result of females living with debilitating, costly, common chronic conditions, is it, it is, it is not that, that economic impact is not isolated only on the patient.
It impacts every aspect of our society. So, Your profits will grow. The more we can get females healed from these conditions, treated for these conditions, and have their quality of life improved so that they can participate in a productive fashion in society and use less healthcare resources, profits will.
Everybody will be cool. I I, I have no doubt and I did not go to Wharton, but you know what, you don't need to go to Wharton to use common sense that if half the population is female and somewhere between. 25 and 80% of those females are living with a common, chronic debilitating condition, get treatment for that condition, experience relief from that treatment, then they can go back out into society as they all want to do, and become productive, responsible economic engines and everyone will do.
So it it in, this is just my personal opinion to wrap this up. I feel like it is exclusively because we are females and forever we, we held a second class position when it come to the. Medical research and sort of catering to the body to keep the body hel healthy. All of that attention forever was placed exclusively on the male body.
As a result, we are at an extreme disadvantage because in order to argue for research, you have to show science that indicates that it's a, it's a productive path to go down, but we lack that basic foundational science. So we know these things, right? And when we talk about them and when we say, Hey, we realize this, we understand this, that.
One person saying, we can't fund that research because the science isn't there. That can be countered by all of us saying, the science isn't there because you're not funding the research. And then we pressure them and, and shame them into funding research because females and males deserve equal attention when it comes to healthcare and for so long.
That equality has been missing. It's not just in healthcare research. It's in, in so many aspects of our society, but health is of primary importance. Your wealth is in your health, right? If you are sick, then you can. Not contribute to society in the way that you could if you were well, and to turn a blind eye to hundreds of millions of people who were living with one or more chronic diseases through no fault of their own.
When you turn a blind eye to them, you, you're basically stating. That they don't have value and that is absolute bs. So, so it's gotta get cleaned up. You know, either come out and say boldly, hey, we just wanna let you know, sorry to have to deliver this news to you, but we just don't think that you're worthy of research.
We just don't think that you warrant it. Okay. If you would just stay pregnant, you know, all of those conditions will be cured, which PS is not true.
Just come out and say it. Just be straight up cuz the double speak isn't gonna work anymore. The red herrings, they're not distracting us. We know exactly what's going on. The date is there and people are. And social media allows people to talk and impact millions. So change it now and receive the, the kudos and the slaps on the back for finally coming to your senses and, and do the things that I stated need to happen at the top of this podcast.
Balance funding for health research, make it. Hold petrochemical companies accountable for the impact of their chemicals on our health. Eliminate the generally regarded as safe nonsense and force them to take a portion of their ridiculous profits and devote them to research of chronic diseases.
And remove the must be medically necessary veil of protection from insurance companies that refuse to cover treatments that doctors say are medically necessary. I mean, these are such common sense things. So let's get, let's come together and let's go after this. We have nothing to lose in everything to.
We're committed at Uterine kind to doing this. It's, it's all we're gonna talk about, just research female health and putting pressure on entities that have money to make them fund research. That's what we need and that's what we're gonna get and that's what we're gonna deliver for you. We'll be right back with ending on a.
Power generated from renewable resources, mostly solar and wind power surpassed coal-fired generation for the first time in 2022, and nuclear energy for the second year in a row.
According to the US Energy Information Administration deal works. If we put our attention on. Things that are good for society and the planet, all the beings that occupy it. When we put our attention there, good things happen. Progress happens. That's a big deal that for the first time in 2022, we reach the tipping point.
We're solar and wind outpace coal. We can do the same thing in female health research. We just need to apply the pressure. We just need to make it happen, so we're gonna make it happen. But congratulations to the planet for this, positive step forward. And we hope that companies will continue to support less toxic and agendas and initiatives because we're all living on this one planet.
And. We all wanna have a good quality of life and, and we need both health in the human body and health in the planet in order to have that quality of life.
Thank you for listening to this episode of Hello Uterus and thank you Angel for producing this podcast and for your support. And thank you Maryelle for being out there on our social channels and making sure that we're answering all the questions that we're getting on Instagram and TikTok about the things that we're covering, like new research and data and patient stories and the ins and outs of nailing your doctor's appointments.
Thank you to the team at Uterine Kind for keeping the app polished and running perfectly. We are so excited to be in the Google store. We should be in the Apple Store this week, and we have a very exciting announcement when that happens. So please follow us. On Instagram and TikTok at Hello Uterus and go to go to uterine kind.com to check out the Uterine Kind app, which enables quick, safe, and secure collection of your symptoms data so that you can be in control of your health and that you can work with your care teams to solve the mystery of your symptoms.
We'll be back next week with another episode of Hello Uterus. Till then Be well, be cool. Be kind.