In this episode, we discuss current news about all things uterus, how to search for trustworthy information, and we have an incredible conversation with Monae (aka @Endobabee on Instagram) about the supportive #Endowarrior community and her experience living with Endometriosis! Thanks for listening, Uterinekind!
When the government, your doctor, and trusted medical resources spread information that isn't accurate, it impacts your ability to take care of your health. Whether intentional or not, this misinformation may leave you feeling overwhelmed and unable to tell the good from the bad. Fear not uterinekind, Hello Uterus to the rescue! We bring you the most up-to-date and accurate information possible so you don’t have to add any more stress to your wellness journey. Along with a few tips to help you read between the lines when surfing for help with your symptoms.
When 1 in 10 uterinekind have Endometriosis, there is little known about the disease, and with only 100-150 excision surgeons in the US, the likelihood of experiencing a lack of proper care and medical gaslighting is almost guaranteed. It's a universal problem for those living with endo. If you are wondering what to do when you’re suffering, meet Monae, also known as Endobabee on Instagram. She joins us to talk about her life with Endo and infertility, what she wishes she knew after getting a quick diagnosis, the wonderful community she found on social media, and how to handle the unbelievably stressful life that endo can bring.
Lastly, we end on a high note that’s high in the sky! Ever gone paragliding? You’re gonna want to add this version to your bucket list!
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol: It's no wonder so many people are in limbo while living with chronic conditions. How are you supposed to get the proper diagnosis and treatment if the information you and your care team relies upon is out of date or just flat out wrong? When the Cleveland clinic gets it wrong, you know we have big issues. I'm Carol Johnson, and this is Hello Uterus
Today we're joined by Monae, known on instagram as Endobabe. Living with Endometriosis. Having to balance which conditions she addresses, endo or infertility monae's story is brutal, and we're so grateful she's sharing her experience with us, because otherwise, Endo remains unseen. So stay tuned for lessons learned while diving into Endosurgery and more. But first, uterus in the news.
A lot of abortion news this week. Healthcare providers who perform them can go to prison for life. As of last week, doctors in Tennessee can face felony charges for performing an abortion unless they can prove the mother's life is at stake. We'll talk about that more in a second. And in Texas, health care providers who perform abortions face fines up to $100,000, as well as life in prison. A Texas MD on Twitter confirmed what many of us thought was happening. They are, in fact, having to meet with their health system's legal teams to be advised as to the course of care in order to avoid going to prison for life, even if it means the pregnant person dies. A law in Idaho that would have made it illegal for doctors to perform abortions even to preserve the mother's health was stayed on Thursday by a federal judge while a lawsuit by the US. Department of justice proceeds, which is amazing news. And a North Dakota judge also temporarily blocked the state's abortion ban, which was slated to go into effect on August 26. The North Dakota law would make performing an abortion a felony, except in cases of rape, incest, or risk to the life of the mother, conditions that would have to be proven in a court of law. So what these legal teams are saying is that you're going to have to be able to prove that the mother's going to die. For instance, the pregnant person is going to die. Well, how do you do that when the pregnant person is actually there dying in the Er. How is a doctor supposed to get a court date on a moment's notice while a person is bleeding out? What a perverted situation. Physicians who swore an oath to do no harm must now stand on the sidelines while a patient fights alone. They have to essentially send them home or tell them to stay in the hospital until there's no heartbeat. So the person who is pregnant has to wait there and either get sick and die, or the fetus's heart ceases to beat. And there's no good reason for this. There is not a single good reason for this. There's no reason. I respect people's right to practice their religion. I do not accept that someone else's religion is being forced upon people and will result in people dying. And I am supremely, full, pun intended, pissed off that a handful of lawyers who nested as judges proactively tore apart women's health care as if it's not already in a problematic state. And the horror stories are going to mount like, we're just a few months into this. So no matter your party, people's lives are on the line this November in the United States. Vote accordingly. And if abortion is against your religion, I fully respect that. And I fully respect your choice not to get an abortion. I fully respect anyone's choice not to get an abortion. I also believe that common sense uterine health care should be offered in the year 2022 and beyond to people who are in the hospital dying from a pregnancy that is not viable. So we've got some decent progress there in the sense that some judges are putting their gavels in hand and smashing them down. And then we have a few states that are just yikes. In Rwanda, cervical cancer is the most common cancer affecting uterine kind. It killed 940 women in 2019. But the country is rapidly expanding cervical cancer testing and has deployed tens of thousands of community health workers to raise awareness of cervical cancer. They've been vaccinating twelve year old girls for HPV, and their progress there has surpassed other countries, including the UK, in terms of its overall coverage, leaving officials in Rwanda to believe that they're on track to become the first country in Africa and possibly the world to eliminate cervical cancer. Dr. Francois Unkindee describes Rwanda as a front runner. He's a manager of non communicable diseases at Rwanda Biomedical Center, part of the Ministry of Health, and he says, I quote australia is probably the first country that might be able to eliminate cervical cancer. I mean, just think about that. Eliminate cervical cancer. But Rwanda could get there first. So we're cheering both of you on, and we're cheering all countries on. And it would be really, really cool if the United States could get right up in there in those front runners, because eliminating cervical cancer would be fantastic news for uterine kind, right? Fantastic news. Before we speak to Monae, I'd like to bring your attention to the perils of researching uterine health conditions online. In our interview, Monae talks about the challenges of getting accurate information. And after we had recorded the interview a few days ago, I was doing some research on PCOS for an upcoming episode, and I turned to a trusted resource that I've relied upon often over the last decade in my career creating Content for Healthcare. That resource is the Cleveland Clinic. So I would always go to the Cleveland Clinic. If I needed to tackle something about a disease that I wasn't familiar with, I would go to the Cleveland Clinic and I'd get my bearings there. My basic information. And then from there, I usually go into studies and review a whole bunch of other stuff. But it was always a great place to go that in the Mayo Clinic to get that first plate of information that you're going to digest to kind of get your bearings. Now, what we're about to talk about isn't meant to shame the Cleveland Clinic. The Cleveland Clinic is a world class healthcare system. What it's designed to do is to call attention to the challenges of healthcare today and the challenges faced by health systems, which are massive and so are their websites. So much to produce and control and so much at stake if it's not done right. And these organizations don't spin on a dime. These aren't startups. So to get things changed on a website takes a ton of time and it's super challenging to get everybody together to make it happen. So I definitely empathize with the challenges, but this isn't acceptable. So let's just take a quick look at what they have for polycystic ovarian syndrome. And I'm going to point out a few things to look for when you're out there venturing online, trying to understand your symptoms. Or perhaps your physician has said that you may be suffering from a condition and you want to go research it. So this is on the clevelandclinic.org website. It's the overview for polycystic ovarian syndrome. And it starts out pretty good. It's a common cause of female infertility. Increases your risk for their health conditions. They talk about who can get PCOS. They talk about how common it is. Really common. Up to 15% of women of reproductive age have it. Remember that 15% of women. And they talk about the main causes of PCOS. And the very first sentence that they say is the exact cause of PCOS is unknown. There is evidence that genetics plays a role, which really doesn't tell you much of anything, right? Several other factors play a role in causing PCOS. So they play a role, meaning that we know these things are kind of involved, but we don't know how, we don't know what the cause is. And then they talk about symptoms and the symptoms. These are horrible things. Cysts infertility, irregular periods, heavy periods, abnormal hair growth, acne, obesity, thinning hair, really troubling symptoms. Symptoms that suggest that the body is suffering from something. And they do say it is possible to have PCOS without any symptoms. So they point out the symptoms and then they let you know, don't let that fool you if you don't have any of these because it's possible that you still might have them. And then they talk a little bit about how it's treated. First thing is hormonal birth control. Then insulin, sensitizing medicine, medicines to block androgens lifestyle changes. And then they talk about becoming pregnant. Then they mention they pose the question, does PCOS put me at risk for other health conditions? And it does. It puts a person at a higher risk for health conditions like diabetes, high blood pressure, cardiovascular disease, endometrial hyperplasia, endometrial cancer, sleep disorders such as sleep apnea, depression and anxiety. 15% of uterine kind is likely to have PCOS. And all of those additional health risks are possible for this person because of the PCOS. But we don't know what causes it. We don't know what causes it because the money to fund research is not diverted to women's health care. I'm going to continue, but just those additional health conditions that would really raise a lot of alarms for me. And it would make me think like we should really get to the bottom of this, right? When they talk about coping with the symptoms of PCOS and the very first thing they say to do is to lose weight, I want to say the very first thing that needs to happen is that we need to get to the bottom of what causes PCOS. Because maybe the weight is a symptom of PCOS. And so to tell me to lose weight isn't really helpful, right? Because my body is not operating in a balanced way. And in order for this system to operate in its optimal state, it has to be in perfect balance. Something like PCOS suggests something's out of balance, right? What causes PCOS? Something is out of balance. So let's go ahead and fund research to figure out what's out of balance so that we can develop actual treatments for the root cause of PCOS, not just treating the symptoms. So then they talk about if you can get pregnant and what hormones affect it, but all of this stuff. Like when they talk about the hormones that affect it, there's always this thing in the back of my mind that's like, well, you don't really know what causes it. So when I see them say things like the hormones play a role, play a role, that phrase always stands out to me. Because play a role means like you don't know, you know, that does something but you're just not really sure what it is. It plays a role. We don't know if it's the butler, the king, whoever, we just know that somehow it's involved. And then the thing that really made my jaw drop was near the end when it says what's the difference between PCOS and endometriosis? And I'm going to read this to you because it's because it has to be read. PCOS and endometriosis are different conditions but both are linked to ovarian cysts and infertility weirdly written it's more like both cause ovarian cysts and lead to infertility. Not like the infertility in the cysts cause the PCOS and endometriosis. Then they go on to say endometriosis is a condition where the lining of your uterus endometrium grows in other places like your ovaries vagina or fallopian tubes. Nope, that's not accurate at all. Not at all. The lining of your uterus is not growing in other areas in your body. The way that it is accurately described is that cells that operate in a similar fashion to the endometrium are located in other areas of your body. They can be found anywhere in your body. It's not your endometrium. There's no real name for it because they haven't been able to determine what the cause is. So it's described as cells that are similar to those that make up the endometrium or the lining of your uterus, which is what you shed each month during your menstrual cycle. I'll finish out the last three sentences. It typically causes pelvic pain or severe menstrual cramps. It causes more than that. What? That makes it sound like a bad period. We're trying to not have that kind of language anymore around any of these conditions. Women with PCOS have irregular periods, unpredictable ovulation, and other physical side effects due to excess male hormones. So the real problem is in the middle of that paragraph when it talks about what endometriosis is and what it causes pelvic pain or severe menstrual cramps, I would have added fusing together of all your organs in your pelvic region. It can cause your kidneys to malfunction. It can cause you to have bowel obstructions. It just goes on and on. It can affect any and every organ in your body. So when you're reading this stuff, no matter where you're getting this information, you really got to look with a discerning eye and just be on guard. And I think one of the things that you'll hear in our conversation with Monae coming up now is that the community on social media for as much garbage as gets tossed at social media. For all the missing disinformation that's out there when it comes to conditions like endometriosis and fibroids and abnormal uterine bleeding and PCOS, the communities that are online are phenomenal. They are comprised of some of the coolest people you will ever come to know. They are so supportive. They offer their time to strangers who are living with the same conditions that they have to help and support them. It's really fantastic. So make sure that you balance the information that you get at places like the Cleveland Clinic or the Mayo Clinic or other places online with talking to people who are living with the condition and with the physicians that are online on social media who are specialists. We say this all the time on the show, specialists. It really matters. You got to find specialists. And if you can't physically get to one, they generally have a presence online, and we will spotlight them routinely on this show. So that's how to spot some misinformation. And I feel for the Cleveland Clinic. I feel for every health system in the United States of America today. It is really difficult to provide health care under these conditions. I'm not here to be like, oh, you guys are so bad at your job. No, you're killing it. It's just that there's too much for everyone to do and we got to work more closely together and not discount someone because they're on social media giving information. Let's really just try to work close together and help each other out because that's fun and helpful and healing. All right, we're going to take a quick break and when we return, The Endo Babe will join us.
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Carol: If you've spent any time on Instagram and you're living with Endometriosis or you've come across Endometriosis content, you have likely seen Endobabe. Endobabe is a gift to people who are living with Endometriosis and are in the process of trying to learn about the condition or are experiencing issues with accessing care and gas lighting. And she's a great support for people on Instagram who are experiencing this. And we want to just thank her for taking time out of her day to join us on Hello Uterus to share with you all what her experience has been and the things that she has learned. And hopefully you'll take away some inspiration to fight through to get a definitive diagnosis and proper care and also maybe miss some of the pitfalls that you experienced Monae during your experience so far. So thank you for joining us. I'm really appreciative of having you here and thank you so much. I am so happy to be here and just talk about my journey and share my experiences with you. Anytime that I get to advocate for Endo and raise conversation, I'm here for it. So thank you guys for having me. Excellent. And if it wasn't for people like you, we would still be thinking that endometriosis is a uterine condition and that, for instance, if you got a hysterectomy, you'd be curative endometriosis. And some of us know that that's not the case, but all of us need to know that's not the case. So let's start off with the definition that you were given of endometriosis when you were first diagnosed and what endometriosis really is. Can you take us back in time to when someone first mentioned you might have endometriosis?
Monae: Yeah. So I was diagnosed about four years ago. I went to my Gynecologist and told her of my symptoms and what I was going through. I actually got diagnosed pretty quickly. I know that averages could be up to ten years of getting a diagnosis, but I was lucky enough to get diagnosed fairly quickly, and I'm grateful for that. But when I was first diagnosed, I shared my symptoms, and they were like, oh, you know, it sounds like you have something called endometriosis, and at the time, didn't know what it was. And so basically what they told me was it was endometrial tissue that goes rogue outside of our uterus and basically inhabits the outside of our uterus muscle lining and just causes a lot of pain and can be cured, basically, is what they told me in so many words, which we know is far from the truth. That's not the definition of endometriosis. So, yeah, that's kind of where I started and what they shared with me in the beginning.
Carol:So we know that endometriosis. We'll set it straight here together for anyone listening. Endometriosis. It doesn't involve endometrial tissue. It involves tissue that people have observed, operates like endometrial tissue. Okay. And I think it's important to say like observed, because we all know that we don't know what causes endometriosis. We don't know what exacerbates it. We don't know what its mechanism of action is, how it operates. We have a few pieces of information about it that it makes its own estrogen receptors. So it's hormonally triggered. Is triggered the right word there? Hormonally? I don't know. Responsive, I guess.
Monae: Yeah. It creates its own estrogen receptors. So it's not a reproductive issue. It's a whole body disease. It's been found on every major organ in the body. It creates these lesions that basically infiltrate your body and wreak havoc and cause these horrible lesions that can bleed and cause adhesions and scar tissue inflammation. There's tons of theories out there, but I think the most important thing is understanding that it is not a reproductive issue. It is not a uterine disease. It is endometrial like tissue that is found outside of the body or outside of the uterus.
Carol: Outside? Yeah. I wish it was outside the body. Wouldn't that be great if it was just only outside the body? Exactly. If only we can make that happen just to drive that point home. Men have been diagnosed with endometriosis. It's an edge case situation. It's super, super rare. But the fact that men have been diagnosed with it kind of makes me think of that this is something, and again, we don't know. So anybody is talking in theories whether you have an MD after your name or not. We're all still. In theory. Stage that as the embryo is developing. That something goes haywire because we start with the ability to go either way. To go male or female. And then one is dominant based on your chromosomes. And the other sort of beginning. I don't know. Sells of that other sex that's not going to be the resulting dominant sex dissipates or goes away in some fashion. And so maybe something happens there, who knows? But one thing that we will say is that if you hear a doctor tell you that endometriosis is caused by retrograde blood flow or menstrual blood that flows the opposite way that it's supposed to, and then out the fallopian tubes and into your pelvic cavity, please thank them for their time and get up, leave the office, go home and find a referral and run away. Yeah, run away quickly because that's not real, right? Huge red flag. Yeah. So after you were told that you might have endometriosis, what was there? So a quick potential diagnosis, what was the next step then?
Monae: I shared my symptoms. They told me what you might have endometriosis. They even brought up adenomyosis at the time, just kind of based off what my symptoms were. And they wanted to put me on birth control. They basically painted this picture for me. Go on birth control. Stop your period. Your end is going to go away, your pain is going to go down, and you're going to be good to go. And so I went on birth control, and I took birth control for about a couple of months and came back into the office, and nothing had changed. My symptoms had not changed at all. And so the next step was, okay, you know what? Let's go do a diagnostic surgery. And at the time, my doctor, my gynecologist, performed ablation surgery, which I didn't know at that time was another huge red flag and had ablation surgery. She came out of surgery or came out of surgery, and she was just like, okay, we got the endometriosis out. You should be good to go, heal up, and all is good. So I went home, healed, and not even two, three months later, I was back in her office, and my symptoms had progressively gotten worse. My pain was worse, my nausea, all of my symptoms that they just got really bad. And so I was back in her office. And I distinctly remember this appointment. I will never forget it. It was probably my first time experiencing medical gas, lighting one in her office and told her I was worse. Nothing was changing. I was living in pain every single day that I needed to be on some type of pain management. And I remember her looking at me in the eyes, and she basically was trying to push lupron on me, which is a hormonal drug, and I didn't want to take it. And she basically said, okay, you can leave my office because you're refusing treatment. And I will never forget that because I felt so deflated. I felt so broken. Here I'm going to this doctor who I think is supposed to be helping me, and she's kicking me out of her office because I don't want to take a hormonal drug. And it was horrible. It was just the worst feeling in the world. I'll never forget it.
Carol:So you had mentioned ablation. For those listening who aren't familiar with it, it's the burning off of the lesions. But the lesions are like icebergs, as Dr. Bendra described on our most recent episode of the podcast, last week's episode, but they're like icebergs. You have to go in and cut them out, which is, by the way, a ridiculously delicate surgery that's on par with neurosurgery and cancer surgery. This isn't something that any gynecologist can do. So I really want to make sure that people know that, because it just can't do that. And ablation, because of the way endo operates. Ablation is really just searing the top end and hoping for the best. And so your pain increased from that, and then you get gas lit.
Monae: Yeah. Horrible. And I'm thinking, okay, this has got to be the worst of the worst. I've been diagnosed now four years now, and I will say that I have experienced medical gas lighting on numerous occasions since being diagnosed with endometriosis. And, yeah, I mean, she did ablation surgery. And like you mentioned, ablation is a no no in the endometriosis community. Ablation essentially just burns the surface of the lesions, leaving the root of the disease still in your body. And this allows reoccurrence, this allows progression of endometriosis. And so she did more harm than she did good. And, I mean, it's a no wonder that I was back in her office not even a couple of months later crying in pain because I had ablation surgery. So that was my first experience.
Carol: Yeah, it's terrible because the scar tissue from that alone and imagine if you have endometriosis and you've got it on your bowel and your bladder and your uterus and your intestines and the outside of your stomach, and someone is choosing to burn that off. So it's not solving the problem, but now you're going to create scar tissue and other problems in all of those areas and potentially sort of ruin the integrity of those organs that you're ablating. It's just terrible that this is going on. And we're not talking about something that happened 20 years ago. Right. We're talking about something that happened four years ago. Yeah. About four years ago now. Yeah. Intense. Very intense. I'm really sorry that that happened to you.
Monae: Well, I mean, as I've been on this journey with endometriosis and advocating and hearing people's stories, that's kind of the norm that I hear often is the first course or the first line of treatment is hormones. And then if you don't do hormones, you have surgery and you have ablation surgery. And that is just something that we have been fighting against for so long. Endometriosis deserves a specialty care. It is not a reproductive issue. It's essentially not a gynecological issue. It's a whole body disease that deserves a multidisciplinary approach when treating Endometriosis. And so I've had three surgeries. My first surgery was ablation, and then I had two excision surgeries from another physician, and that's been in the course of about four years now.
Carol: So when you left that horrifying experience, did you know where to go next?
Monae: No, I really left that appointment, and that's really what started my advocating for Endometriosis, because I left that appointment like, okay, if these doctors aren't going to fight for me, I have to fight for myself. And I remember going home and researching Endometriosis and researching adenomyosis, and I remember jumping on social media and typing in Endometriosis. A bunch of accounts came up, and I started reaching out to people and asking their opinions, and I really found support in the Endometriosis community. That's really where I was educated and where I was able to really understand what was going on with my body. And I had no idea that there were so many others that were going through the exact same things that I was going through. And so I will say that the Endometriosis community and has really been my foundation and just going through this journey yeah.
Carol: Being able to figure out where to go next and to know that you're not alone and that you're not broken, you're not bad at this. You are a human being who's dealing with a condition and that the medical community hasn't prioritized. Right. And so how else are you going to do it?
Monae: Yeah, I mean, you really have to become your own advocate. I get messages a lot from people just asking, what do I do now? How do I talk to my doctor? And it's intimidating because you are in these appointments and you think these physicians are going to be, like I said, fighting for you and your health. And a lot of the times that's not the case. I have seen over a handful of gynecologists, and it's always the same thing. Hormones will cure you, lupron or Alyssa, that's the way to go. It's always that same narrative. And that's not the care that we deserve at all.
Carol: No. Yeah, not at all. You had said that endometriosis needs to be its own specialty, and it always makes me think about how kind of the opposite has happened in other areas of health care. They're all specialists. I mean, for goodness sake, you don't go to your knee doctor for your feet. We even have foot doctors, right? We have foot doctors, knee doctors, ear, nose, and throat doctors. And then you have gynecologists, which are responsible for delivering babies. They're responsible for being your primary care doctor. Your gynecologist doing PAP, smears. They see 40 patients a day. They do everything right. Well, it kind of makes sense to me. Because for decades, if not well over a century, women's health has been reduced to they make babies, and every month they bleed. And pretty much other than that, we can just leave them alone. And now what we're realizing is that, no, actually, the uterus is not a dormant organ. That's just a baby bag. It actually communicates with the heart and the brain, and you can't just rip it out whenever you want to. You need to actually be engaged in the health of this human body. And by this human body, I mean one that is with a uterus or had a uterus at some point. It can't be a kitchen sink kind of mentality. And when it is a kitchen sink mentality, we have situations like this where doctors aren't up to date on the latest research and the latest protocols, and they're doing real harm. They're doing harm. So how did you find your excision doctor? What was the leap between the leave my office if you're not going to take loop on and how you ended up finally finding what is a unicorn in this country? An excision specialist.
Monae: So she's not necessarily a unicorn. Let's kind of backtrack here. So I had my ablation surgery, and essentially what happened was I changed insurances because insurance that I had at the time wouldn't allow me to see other doctors. And so I changed insurances, and I was doing research, and I found this doctor who said she knew endometriosis, went into my first appointment. And at this time, I was at the point where my knowledge of endo was better than my first appointment, right? So I kind of went in there asking these questions, and she gave me all the right answers. She performed excuse surgery, and it came back that I had severe endometriosis. I had stage four endo. I had endo on my bowel, around my bladder. I had endometriosis on my appendix. And so she essentially performed excision surgery and said that she got what she could and removed endometrioma, which is a chocolate cyst ovarian endometriosis. And it was about five to six months later from that that I came back. Still, my symptoms were worsening again. And at that point, I did even more research to understand that, well, okay, even though she's saying she knows endometriosis and she's in a surgeon, is she really an excision surgeon? I started researching other doctors, doctors at the center of Endocare and Dr. Podoli and Dr. Shanti in Oregon and these actual physicians and doctor surgeons who truly understand endometriosis. And there was a huge gap there. And I think what happens is we go to these gynecologists who think they understand endometriosis and perform surgery, and they're actually not performing the correct excision surgery. Excision surgery is a very detailed surgery. There's superficial endo. There's deep infiltrating endo, there's ovarian endometriosis. And that takes a surgeon that truly knows what they're doing. Are they just looking for black lesions? Or endometriosis comes in multicolored lesions. Are they being able to see those in surgery? So it came down to that, and I realized, okay, maybe this doctor wasn't the doctor that I needed just because my symptoms were still there. And here I am four years later. I've had three surgeries, and I'm kind of in the same place where nothing's really changed for me. Yeah. And that's kind of where I'm at right now.
Carol: So two excision surgeries, and so I'm assuming on the second one, they found other areas that they missed the first time.
Monae: Yeah. So when she went back in there, I had gotten multiple cysts again that were endometriomas, and there was just tons of scar tissue adhesions that were also contributing to the pain. And something that needs to be talked about, too, is that under meteorus, lesions don't just cause pain. You can get pain from scar tissue, inflammation, adhesion. And sometimes surgery needs to be separate for just those things to remove that out of the body. It's quite inevitable to not get scar tissue and inflammation after surgery, like endometriosis, because you are cutting out tissue that's going to cause some damage around those organs. Went back into the second surgery, and everything was kind of the same. And she showed me my imaging, and I was just like, well, it kind of looks like the first time. And that's when the red flag went off where I was like, okay, you know what? Maybe she doesn't know what she's doing. I have been on this journey of trying to find the right doctor. Unfortunately, where I live, I'm in California, I don't have access to true excision surgeons for endometriosis. And so that's kind of been the battle for me so far. It's just finding that, right?
Carol: Yeah. So you brought up a really interesting point that Dr. Bindra brought up in our last podcast. Which is the difference between someone who goes and does continuing education. Training and endometrial excision surgery. And it might be three days or a five day type training. Or the people who have chosen to only do endometriosis excision surgery. Like neurosurgeons don't swab your throat or give you a flu shot. Right. They operate on brains. That's all they do. It's all they can do. Because it's really hard if you're thinking, if you love your doctor and gosh, it's been my doctor since I was a kid, and they're just so great. And I shudder when I hear people say, like, oh, but he's almost retiring, and I just really want, oh, my God, can I come over and get you out of that doctor's chair and put you in someone else's? Because that's the worst place to be. So we need actually to draw attention to the fact that endometriosis excision surgeons are highly specialized, and it requires a tremendous amount of continual time in a surgery suite to be able to perfect this surgery. And so finding that person in the United States, we have essentially 100 to 150 of them, and I'm going to say it's closer to 100. And that's not a lot, considering that one in ten people have endometriosis. Is that where you are now, is looking for that person?
Monae: Yeah. So I have found some doctors, there are a few doctors that are just amazing surgeons that I know that I want to go see. But the issue with me, and the battle so far with me, is my insurance doesn't cover these doctors. And so it comes down to finances for me. Can I afford a surgery even though I need it? My insurance isn't going to cover it. So I've kind of been in this battle of having to wait and essentially manage my symptoms myself, because I just don't have access to those doctors yet. And from what I'm finding and talking to people, that's often the situation that a lot of people are in is that we simply can't afford these surgeons or they're not covered by our insurance, and it's an outofpocket payment and it's hard. And some people just don't even have medical insurance, so the access to these doctors aren't even available going that route. So that's kind of where I've been in my journey. And not only that, but I've really been trying to tackle my infertility and kind of putting my endometriosis on the back end of care, because I do struggle with infertility and that's a big thing for me. So I've really been focusing on that journey for myself.
Carol: Right. How much more can you juggle, trying to conceive, trying to deal with endo? I'm sure you have other things to do as well. And also you strike me as someone who leads with the positive that you're really trying to lift yourself up in all areas, to shine a light on the good things, to just be present every day as you can. And that's brutal to do when you're dealing with this. So I want a real honest answer, not the Monae, I'm going to be an excellent person today. I want the real answer. How would you describe your quality of life from a mental, physical and emotional perspective as a result of endo?
Monae: Yeah, to be very honest, my mental health has been a struggle. I've always been very honest about that, especially on my social media. Mental health is a big thing for me and I really didn't pay no mind to it until I got diagnosed. I didn't really understand having moments of pain and hurt mentally, not just physically. And so having endometriosis is so much more than physical. And I think people, a lot of us call it the invisible disease, because from the outside, I have no markings or anything to show that I'm struggling. But endometriosis is wreaked havoc on my mental health as well. Living in constant pain, going through medical trauma and gaslighting, going through these daily symptoms every single day, has affected my mental health in a tremendous way. I have always been one to look at the positive and look at the brighter days, but sometimes that's just not my reality. I think we need to talk about that more, is that having a diagnosis like endometriosis does affect your mental health. And I think mental health sometimes can be such like a taboo topic where people don't really want to show the reality of what we're going through mentally. But yeah, every day is different for me. Every day is different. I try to be positive, but that's just not my reality all the time.
Carol: Yeah, and it can be stressful to try to be positive, and we don't give people a pass at all from the get go. It's being couched as a bad period, so it's already out of the gate. It's already a disaster because it's being misrepresented. And so then the people who are dealing with that are thinking, oh, well, then I must really suck at this because it's just a bad period. So it's almost as if before the endo really gets ripping, the mental hits are already happening, even when you're just thinking, I have a bad period and my doctor says it's fine, so something must be wrong with me. There begins the process of self doubt, self hatred. It just goes on and on. Did you find any support within the medical community for mental health, or have you been tackling it on your own in the medical community?
Monae: No, I've really been tackling it on my own, and I'm grateful that I have a supportive family. My husband has been like my partner in crime through all of this. He has been there since the beginning of my diagnosis. And if it wasn't for my family and my husband and my close friends being able to lean on them in those days where I'm just like, hey, I'm really struggling today. If it wasn't for them, I think I would be struggling so much more. And it's amazing that they have, because a lot of times people just simply don't understand what you're going through. And it's hard to communicate that with somebody. But they've been so amazing to have that open dialogue with me and really try to understand what endometriosis is and why I'm feeling certain ways or what I'm going through. And so they've really been able to have been my backbone through all of this. They've really been my support.
Carol: What would you say to someone who maybe hasn't really paid attention to the mental toll that it's taking to kind of help them discover that as a pathway to getting ahead of it and getting some help before potentially becomes worse?
Monae: I think the biggest thing for me, and my biggest advice, would be having an open dialogue with somebody. And I know that sometimes you don't have that support. And so I think always being transparent and just kind of talking what you're going through is a huge thing. In the matter of getting ahead of it, it's not really something that I would say you can get ahead of because with endometriosis, every day is different, right? So it's like you can have a wonderful day with no pain, and then the pain can hit you and those doubts can just flood over you immediately. And something that's really, really helped me through my journey is journaling. Journaling my symptoms, journaling how I'm feeling. Really just giving those words of affirmation to myself through my journaling was something that really, really helped me to just be like, hey, it's okay to not be okay. You have support and you're going to be fine. I think that's a big thing for me. And what's truly helped me in my journey is that and like I said, just having an open dialogue with someone, having that support of just picking up the phone and talking to someone or talking to your spouse or your partner and your family and just kind of sharing what you're going through.
Carol: Did you find that when you made the choice to pause on dealing with the endometriosis in order to try to get pregnant? Right? That's your fertility goal right now. Did you discover anything from the fertility doctors that you're seeing? Did they have any insight for you or any suggestions that you found were different than what you had learned in the Gynecology community?
Monae: Not really. Their opinions on endometriosis have kind of been the same. It's a bad period. It could be inflammation or scar tissue, adhesion ovarian endometriosis that's inhabiting, preventing you from getting pregnant in the natural way. And so I really haven't found any differences there. It's kind of been the same, the same narrative, the same conversation around endo.
Carol: We have a lot of work to do. Yeah, we talked about things that are super frustrating and all legitimately super frustrating. Were there any AHA moments, any positive breakthroughs that somebody could look toward and might just be knowing yourself better? It could be things that where you didn't really anticipate that there might have been a silver lining in some way here.
Monae: I don't know if I've ever had an AHA moment with my journey. A lot of my journey has been advocating for myself and a lot of my journey has been really researching for myself. I've never been to a point in my endometriosis journey where I guess the right word would be like a positive thing. I haven't experienced that yet because I've only run into obstacles in my journey and that's just because of the care that I've received. I mean, not only from just your average Gynecologist, but care that I've received in the emergency room when I've had to go to the Er for a horrible flare. And I think that's what drives me to advocate and have this conversation around endometriosis and change that narrative is because of the care that I've continued to get in the four years that I've been diagnosed with Endometriosis, it's been that average care, it's been that medical gaslighting over and over and over again. And the moments that I felt most supported and most positive has been through the Endo community, has been chatting with somebody who has Endometriosis confiding in them and talking different things with them. That's been where, I guess you can say, I've had my most support and positivity out of this journey. Unfortunately, that's just the sad truth. And that's why I advocate so hard for Endometriosis.
Carol: Yeah, you'll be someone else's silver lining, and I truly hope that someone becomes yours. That a physician out there hears of this and steps up to help out or something happens. Because we're in this it's like the birth canal experience where we were out of the dark. We know what we're dealing with as patients, right? We are able to access the knowledge. We get it. We understand more about what this condition is, yet the delivery of care hasn't kept up with where we're at. And so that creates a really painful situation because you know what you deserve and you're being told you can't get it. We didn't even get into the insurance angle of this, which makes my hair catch on fire, that a company can tell you, oh, I'm sorry, there's a doctor that's 500 miles away, but we're not going to pay for that for you.
Monae: Yeah, I mean, again, that's because of the narrative that is constantly being preached, that it's a period issue, it's a uterine issue, and that's why we constantly get written off while you're overreacting. The pain can't be that bad. It's just a bad period. Take birth control. That is what's being shoved down our throats constantly. And we deserve so much better than that. And I think that's my biggest message to those out there who are just being diagnosed or going through this journey, is knowing your worth and knowing you deserve the best and that your pain is not normal. It's not just a bad period to just really fight for your care and never stop fighting. Don't ever stop fighting. That's my biggest message.
Carol: Absolutely don't stay on it. Because all of us that are taking steps to try to change the narrative, it will work eventually, and so it requires breaking a sweat now, but there are so many people out there who are doing it, you included, and I'm really grateful because you don't have to do what you're doing. I think people sometimes look at you're just on social media, on Instagram. Wait a second. No. You're talking about the most personal, most horrifying experiences in brutally honest fashion. It is a gift to the people who will ultimately have to get on the same path that you're on. And the fact that you point out that your greatest sense of support comes from social media. Social media gets trashed all the time. This is like an opportunity that I just want to take to say, like, yay, social media, because if it wasn't for social media, nobody would be able to talk about this and it would still be treated as if it's all in our head, as if it's hysteria. Right? And so we're making little bits of progress. And I'm really grateful. I'm so thankful that you spent the time to be here. And we will continue to follow your journey and root for you. Hardcore rooting for you.
Monae: Yes, I appreciate that. I really do. And I am on Instagram, and I always tell my followers and those who follow me that my inbox is always open. I'm always, always there to answer questions or just have someone to talk to. I think sometimes you just need to talk to somebody. And I'm always there, and I will continue to advocate for those who maybe just are a little bit quieter and don't want to speak up on endo. I will be there to advocate for that.
Carol: That's fantastic. And we thank you so much. So EndoBabe on Instagram. Monae. Thank you.
Monae: Yes, thank you so much for having me. Thank you.
Carol: Thank you for being here. All right, we'll be right back with Ending on a high note.
Add it to your bucket list. Para-vulturing is a thing. Para-vulturing. You're like, what the hell is that? Just think about it for a second. Para vulturing. What do you think it is? I'm going to tell you. I'm not going to keep you in suspense anymore. A man in Brazil was paragliding 100ft above the earth when vultures started circling him. If that was me, I would immediately curl up in the fetal position. I would start crying. I would probably just cut the lines on my paraglide and plunge to earth out of fear because it's just Alfred Hitchcock horror show in the air. I wouldn't be able to handle it. But then the unthinkable like the worst thing that could possibly happen. Although it could be the best thing, depending on your fear tolerance. The vulture lands on his lap. Lands on his lap. My heart is pounding just thinking about it and goes for a ride. This vulture is like, wow, this is so cool. Look at the view. It's amazing. He's hanging out. He's checking out, like, the straps that hold the guy's legs up and his sneakers, and he's looking back at him and the guy's petting him, which I thought was so cool. It was just the neatest thing. And to watch the bird, check out the view. It was kind of like me when someone else is driving and I'm blown away by what I'm seeing because me not driving is as rare as having a vulture land on your lap while hang gliding. So I get in the car and I'm a passenger driving over the Golden Gate Bridge, and I'm like, oh, my gosh. It's just amazing. And meanwhile, I've been over the Golden Gate Bridge like a hundred times or more. But when you're not driving, you get to really look around. And I think for a bird it must be the same thing. Even though they can glide and look around, it's totally different when you're just like, sitting on some dude's lap your claws, hanging onto his jeans and checking it out. I just thought it was like the coolest meetup of man and bird. So fun. Anyway, also the scenery is amazing, so you got to check it out. We'll post it on our Instagram at uterine Kind, and we'll also have it linked in the blog for this week's podcast at hello. Uterus.com. Don't forget to send us your questions to hello at hello Uterus dot com for our Hear me, hear Me segment. We'll get them answered by experts. A huge thanks to Angel producer extraordinaire and to Monae for taking the time to share her story with us. It was awesome to spend time with her, and we're so glad that we connected to the team at Uterine Kind. Thank you for burning the midnight oil. We are seven weeks to the launch of an app that will change your Uterine healthcare experience. It's very exciting. I also want to congratulate our winners. For the month of August 4, people will be spoiled with a Beauty Heroes beauty box because they deserve it. I'm not going to mention their names because privacy and stuff, but maybe they'll post something online on social and tag us at uterine Kind and tag at Beauty Heroes too. We will be back next week. Till then, be well, be cool. Be kind.
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.