Endo Battery

Unheard No More: Dana Bowling's Crusade for Endometriosis Awareness and Legislative Change

• Alanna • Episode 71

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When Dana Bowling bravely stepped forward to recount her arduous journey with endometriosis, she brought to light the resilience required to navigate a world where medical professionals often dismiss women's pain. Our heartfelt discussion takes you through Dana's early struggles, the grueling road to diagnosis, and the relief that comes with validation from a compassionate gynecologist. Her candid narrative delves into the challenges of treatment options, including her experiences with medication like Lupron and the complexities surrounding fertility and excision surgeries.

Turning the page to advocacy, we tackle the intricate dance of healthcare legislation and the vital role personal stories play in influencing change. With Dana's insights, we dissect the frustrating experience of amending bills rife with misinformation and how this affects everyone from prepubescent girls to post-menopausal women. The conversation invites you to the front lines, emphasizing the necessity of engagement with lawmakers and the strategies to make your voice resonate within the halls of power.

Rounding out our session, we celebrate the strength found in community and the importance of solidarity in advocacy. Dana illustrates the progress being made in New Jersey as she works to reintroduce bills that accurately address endometriosis, highlighting the successful changes and the impact of community support. Our exchange culminates in a moment of gratitude for the platform this podcast provides, enabling stories like Dana's to inspire and unite those on similar paths, underscoring the message that you are not alone in this fight.

NJ Petition
https://www.change.org/p/support-endometriosis-legislation-in-new-jersey

Website endobattery.com

Speaker 1:

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us. Welcome back to Indobattery, grab your cup of coffee or your cup of tea and join my guest, dana Bolling, and I at the table. Dana is an endowyer that's taken her passion, due to lived experience and skill set, to continue advocating for those affected by endometriosis, and specifically in New Jersey. Thank you, dana, so much for joining me today and taking your time, and I'm excited for our conversation.

Speaker 2:

Thank you so much for having me. It's an honor to be asked.

Speaker 1:

Yes, the reason I'm excited to have you on today is because you've been doing a lot of advocacy work outside of what we typically see in advocacy. You are working on a state level, within the legislature, to advocate for those of us with endometriosis. But before we get to that, you didn't get there overnight. You have a story that led you to this point, that led you to really become more passionate about making sure that those of us with endometriosis, specifically in New Jersey, which is where you're located, have better care and access in the legislative arena. So can you enlighten us a little bit on your story and what drove you to this point?

Speaker 2:

Yeah, absolutely, and you're so right you don't have to do that kind of work, especially on a volunteer basis, out of nowhere. So for me I started having symptoms like a lot of us do in the middle school age range going to the nurse once a month for headaches and belly aches, and a million and one trips to the ER to rule out appendicitis and all of those things. And you kind of get labeled as the dramatic child or you're trying to get out of class and I didn't think that those things were true. But after a while you really start to believe them and it starts to kind of affect your own thoughts about yourself. And it was many, many years of that. So that was sort of the status quo for me for middle school, high school, college, I went into law school and I kind of started to really believe that maybe I was weak and all women really do have this kind of pain, and it really changed my own perceptions about myself. And then I was not diagnosed until my late twenties.

Speaker 2:

I started having things really got bad in the early to mid twenties and I was missing work, which you know for a full time practicing attorney is not a good thing. Yeah, the firm I worked for was not impressed. I was the only female attorney in the firm and so it didn't really do anything to bolster their opinion of female attorneys, and so I tried to just get it out. That was sort of my method of just, you know, grin and bear it, gut it out, get through, but it was exhausting. It took a toll, yeah, and so you know again, a bunch of different ER trips it was just this constantly out of appendicitis, but nobody really had any other idea of what it could be.

Speaker 2:

I went to my primary care physician it was one of you know gosh, who knows how many visits to him and he said you know, I wonder, there's this thing called endometriosis. I wonder if maybe that's what you've got. And I'd never heard the word before. I didn't know what it meant, and so I looked it up and it sounded like it was spot on. So he recommended that I contact a specific gynecologist, someone he knew about his in the area, to see what he thought. And my own gynecologist had really um at the University of Pennsylvania gynecologist I'd gone to through many doctors. At that point I think in my mind it had to be related to the period in some way, because symptoms were worse than, especially when I was younger, and you know she very much reinforced the narrative that you know all, when I go through this, all women feel pain. You're okay, we'll put you on birth control, you'll be all right. Just you know toughen up.

Speaker 2:

You're okay, um, kind of a buck up on her cup sort of a philosophy. And so I did. It was my first experience with a male gynecologist. I was a little bit nervous, but he was the first one who listened to me and he said you, I think you absolutely have endometriosis. Um, you know, I can't prove it without surgery and I don't know that we want to cut you open. You know, he, he was not an excision specialist by any stretch, um, but he did at least validate what I was experiencing, which went a long way.

Speaker 2:

And at that point he very much pushed Lupron. Lupron was his answer to everything. And I was checking out of the office that day and the nurse, um, you know, stopped me to make my appointment for my first Lupron injection and she said whatever you do, do not Google it, just don't do it. You don't want to read it, you're going to be scared. People lie, they make up stories, do not be quick. And that was a little bit alarming. Yeah, it was. That was odd. So I made the appointment, you know, with a skeptical feeling about it, and I went and helped one.

Speaker 1:

Of course I'd Google it immediately to see what she was trying to stop me from seeing, it's like telling the kid not to put their hand on the stove, and then you put their hand on the stove, it's going to burn you. You know, it's kind of that same concept.

Speaker 2:

That's it, but I'm thrilled that she did, because I never well, I don't know if I would have realized just how awful an approach that was, had I not been so alarmed by her trying to keep me from seeing it.

Speaker 1:

And so.

Speaker 2:

I called back and said no, no, we're going to cancel that appointment. So I canceled it and went back in three months. It was the typical come back in three months, we'll see how you're doing. And he, you know, wasn't really thrilled that I had declined the injection and I just said, you know, I told him that I was just scared, I didn't like the idea of it. You know I'd been on birth control and so many different kinds of birth control that the idea of having such a substantial like January, january, january, january, january, it just it was scary to me. So he very reluctantly agreed to do surgery. He was not eager to do it, said you know, you're kind of leaving us no choice, but this way we'll at least be able to to tell what you have and we'll know for sure, and then then we can do. Lou Prun and I said okay, sure whatever you say.

Speaker 2:

So he scheduled the surgery and lo and behold, of course it was extensive, you know, stage four, endometriosis, and back then this was so. I was maybe 15, 20 years ago now, probably 15 years ago, and he did ablation. You know, excision wasn't well but it didn't exist. It was a thing, but not, you know, it wasn't commonly available. It still isn't now, but it was more hard to come by then. Yeah.

Speaker 2:

So I had surgery after surgery, after surgery after surgery, with him doing ablation, and my mom and I have lost count. We went back you know, she was kind of my, my buddy, who got me through all of that. She was my you know, my care person and we can't figure out exactly how many there were. We kind of lost count. But there were many ablations and of course things got worse as they do, because ablation is not the approach you need to take. I regret having not done further research into it back then because it made my situation a lot worse and otherwise it would have been the scarring and just some of the other damage. You know, the insides of my body. Yeah, but I did it.

Speaker 1:

I didn't know any better. I don't think any of us do, and that's like I want to just highlight. That is, that we do the best with what we know at the time, and 15, 20 years ago, the information wasn't as readily out there. You can't just you know, I sat and Googled the same thing about endometriosis and, to be fair, there just wasn't a lot out there.

Speaker 2:

It wasn't accessible, mary Lou Ballweg and her organization, the Endosu, the Busundo Association, and I think it's changed names. Don't quote me on that, but her organization was the only one that really existed back then and I didn't even find that until a few years into having all of these ablation surgeries and I realized, my God, this is insane. I can't keep missing work to have surgery every year. This is just like they're going to fire me and they weren't thrilled, but again they had to deal with it. It was a womanly thing that they felt like they had to deal with and so they kept me but and I had the insurance to cover it, which was great. But I finally I found Mary Lou Ballweg and learned a little bit more about Endosu for her organization no-transcript, it was the timeline is a little foggy Many years after that I learned about excision and there were the little diagrams that you see, like the little cartoon images with you digging out the weed versus like bloat forging the weed.

Speaker 2:

So I found my way to Timer Sutchkin in New York City. It was one of the co-founders of EFA and Demetriosis Foundation of America and I saved my pennies so that I could go and have a consult with him, and I took the train to New York. It was a super exciting day and at the appointment did not go well for me and I did not permit him to operate. It was a negative experience and it didn't go well. So I made my way home completely defeated at that point because I had no idea what to do. So I decided that I just wasn't. I knew enough at that point based on what I'd learned from Mary Lou, and even the Timer Sutchkin's website at that point did explain the difference between excision and ablation. I at least learned that. So I knew that going back for more ablation surgeries was only going to make a bad situation worse. And I also, because of that experience, learned that for me excision specialists were not a good choice. It was an awful experience and I decided foolishly, but I decided that no care was better than that care, than bad care.

Speaker 2:

So I refused to see a gynecologist for years. I refused to have any sort of Demetriosis care or surgery or anything. And I thought well, you know, grinn and Barrett got it out his work for me this long. I'll just do that forever, it's fine. And at that point the belief was once you hit menopause, you're A-okay, all you have to do is get pregnant not all by some time and then hit menopause and you'll be okay, which, of course, now that was completely ridiculous, but at the time that's what I thought. So I did seek out the option of freezing eggs, and they told me I was too young and freezing eggs would not be successful. They needed to be fertilized embryos. And I went back a few years later and they're like oh well, now you're too old and I'm too young. Now I'm too old, oh gosh. I just wanted to preserve that option, yeah.

Speaker 2:

So yeah, I went without care for a long time and then it just got to a point. Of course, as you can imagine, the endo just proceeded to grow and grow and I was on a combined birth control pill with a pretty hefty amount of estrogen, which I don't know that it was ideal, again looking back, but it made life tolerable. It was the Junnell 1.530. So it was a hefty dose of estrogen in the pill, which likely didn't help the actual progression of my disease, but it managed the symptoms enough that I could get through. And then I totally couldn't anymore, and it was in 2020, things were really bad. I was really sick and realized that I was gonna have to figure something out. So I went, got to social media, got on the computer, did some more research to try to figure out who in the world I was gonna see. Right.

Speaker 2:

And I found a doctor here in South Jersey who was kind of a self-proclaimed endometriosis specialist. Spoiler alert, he was not, he fancied himself to be. So I made an appointment with him and he said all of the right things. He did excision, it would be a thorough excision. He agreed to look around the abdomen, not just in the pelvis, because we knew historically my disease had gone above the pelvic brim, you're up into the upper abdomen.

Speaker 2:

And I thought great like oh, thank God I found someone he's a very nice, sweet little man and he couldn't be any nicer. And so I had that excision surgery and by the time I waited for the appointments in the surgery date it was July of 2021. So it ended up being a pretty extensive surgery. I developed frozen pelvis at that time, so it ended up being a more complicated surgery than I think he thought it would be when he went in. So I was in the hospital for a day or two and I think that, while he was definitely a decent excision surgeon, I don't think he was equipped with the knowledge and expertise and skills to address a frozen pelvis situation. You know, I think a stage one, stage two excision they had been within his scope, I think you know anything more extensive than that likely? It was not, and so I very quickly got a whole lot worse.

Speaker 2:

But they lost my photos so they had to dig those back up. Oh my gosh. Yeah, we took like six of them and then probably lost them. Oh my gosh. But thankfully he had asked if he could use it. He was a teaching. He teaches through one of the local programs and he asked if he could use my photos as examples in his class and I said sure, and so he had downloaded a separate copy of my photos to use for teaching and that was how we were able to recreate them. I kind of had to really nag him a little bit to copy those photos for me and he finally agreed to after arguing for a little bit, so I was able to get them and I realized that I was so much worse after the surgery, I think, being they didn't do a whole heck of a lot to prevent adhesions and I think again, without clean skill, without clean technique you know they didn't use tools like the CO2 laser. You know staff size they use kind of different techniques that cause more scarring and adhesions. So I decided I needed to kind of up the ante a little bit and I did a free records review with Dr Cenerbel at CEC and that was within three or four weeks of I wanna say it was in August, so within a couple of weeks. And Dr Cenerbel, you know bless him. He read my story and, you know, went through the files and called and agreed to do surgery. So I ended up having another surgery in October of 2021.

Speaker 2:

So three months later, wow, but I was grateful for the opportunity to be able to do that, which I know is a huge privilege to be able to get that care, yeah, and so we went there and that's. We had a really frank conversation. You know, do you want this, as best we can, to try to be your last surgery? And I just said, absolutely I want you to do whatever you can do. Yeah, there's something to take out, take it out If there's you know anything, be aggressive. I don't want to be conservative anymore. I've had it done with this.

Speaker 2:

So we agreed for a wide excision. We agreed for the hysterectomy to take place Again, keeping ovaries, with the idea that that would hopefully stave off, and I'll pause a little bit. So we planned to remove uterus, the tubes, the cervix, wide excision everywhere. There was some bowel involvement that we knew about but likely wouldn't eat a full resection, and it didn't. He was able to shave in several spots, which was great.

Speaker 2:

And then I also had a VATS procedure with Dr Goldman down there. So they looked on the right side of the chest, up into the lung, the diaphragm, all that stuff on the right side, and then they brought in a general surgeon to remove my gallbladder at the same time. So it was a big surgery, yeah, but it helped a whole lot. You know I'm certainly not pain free. I think that the degree of damage that was done before that surgery was so extensive that you're only going to get so much better after that. So I wish I had known 20 years ago to seek that level of care, but I didn't, and it has helped tremendously. It's since then. It's been a hormonal journey.

Speaker 1:

I'm trying to figure out how in the world to balance things after the obstructive end man, the hormones we were talking about that a little bit ago and this is kind of you know, something that I felt maybe a phrase that I've used is it feels like the secondary effects of a neutriosis, because you're having to have this surgery right. For me, I had both my ovaries and my uterus removed and it just felt like because I had to have that, now I have to deal with these hormones and it's so frustrating and it's not well known and it's not well researched, and so that becomes even more frustrated and so it's kind of you know, the endometriosis we have. The one side of this is the disease right, and this is what you dealt with for years of trying to navigate the best care you could for your disease and having setback after setback and not just setback but roadblocks and trauma and all the things that kind of come with a less known disease, even though they think they know it right.

Speaker 1:

So it's kind of a frustrating point to get to that point of getting good care and proper treatment and then, on the other side of it, need more care and more treatment. That is not well understood. I mean not to get people false hope, but this is the reality that we need to talk more about. Is it's like yes, excision first step, finding a great excision specialist is ideal, but that's not the case for most of us that have been dealing with it for years. And, like you said, you know you didn't know what you didn't know because there wasn't a lot out there. And then you get the help you need and we're still gonna struggle some. We've had this for years.

Speaker 2:

This has been our constant companion for many many years and I feel like there's so many stages to the journey. There's the first stage, which is just from symptom onset to diagnosis right. And that takes far too long for the vast majority of us. And then you move forward from diagnosis to actual appropriate excision treatment which again, may or may not be accessible for everyone. And then we move on from excision for the rest of your life, which is managing that cascade of dominoes. Right.

Speaker 2:

That is the result of both endo and the treatment, whether that's. We know hysterectomy doesn't treat endometriosis, but I also had adenomyosis, which many Right they tend to run together in a lot of us and so, whether it's hysterectomy or whether it's the fallout from having endo on the bladder, on the bowel, wherever it is, it can cause so many other issues. Public floor rehabilitation there's so much, so much.

Speaker 1:

Well, and it's not just even the physical, it's the mental, because the fallout mentally is so hard. And I don't know if you experienced this, but I certainly have had my share of regrets and there's things that I couldn't have changed. But in my mind I'm replaying. Well, I wish I would have done this better. I wish I would have done this better, and really sometimes that's almost more traumatizing than what happened, because you're beating yourself up constantly about your own care. But the reality of that is is we can't be expected to know more than the doctors all the time.

Speaker 2:

Exactly. You do the best you can with what you know and your resources at the time. And you can't criticize yourself because you didn't know better before you knew better. Once you do better, then you try to do better. But it's a constant climbing the mountain and you find one little peak where you can look out and you're like okay, great, I finally have a diagnosis.

Speaker 2:

And then you keep climbing that mountain until you get to the excision plateau and you look out and see the view and it looks rosy. And then you keep climbing again to deal with all of the other hurdles. And the mental struggle with that is not to be dismissed. It gets hard, it takes a toll, it's taxing.

Speaker 1:

And then you add finances on top of that for a lot of us, right, that's it, and that's the first thing, the stuff from the spreadsheet none of it.

Speaker 1:

No, and you're like when am I ever going to be done? When am I going to be done searching for something? Or when am I going to be done just trying to find a new normal or whatever that looks like in your life. It's stressful when you put that into play with the finances and trying to get a better quality of life, and that's challenging. Was this journey through working in a professional field that's typically male dominated? Probably Was that kind of a catalyst to then being an advocate within the legislative arena in New Jersey. Was that kind of the catalyst for you? What was that catalyst and what are you doing? I guess that's a better question. What are you doing because of that catalyst?

Speaker 2:

Absolutely. That's a great question. So because of my history working as an attorney for many years, I'm familiar with the process and how it works, and I saw it was a social media announcement was that a New Nature's Foundation had announced that they were working with a New Jersey Assemblywoman, assemblywoman Spate, to pass a package of bills related to menstrual health, and so there are some great bills in that package that relate to period poverty issues, allowing food banks to utilize their funding to purchase period supplies and a lot of other related bills that are fantastic, and I think that the Assemblywoman has the world's best intentions. I really think that she's well intended, but I think that she has confirmed that she's received all of her education and information from EFA and they are primarily a retrograde menstruation-based organization. I don't agree with promoting that theory At this point, based on research of Dr David Redline, you and others in the field. I'm not a personal proponent of that theory at all.

Speaker 2:

And so it was concerning to me when I learned that retrograde menstruation theory was going to form the basis of endometriosis-related legislation in New Jersey. So I started digging. There are package of bills again, there are several, but then they're split up into lots of little teeny tiny parts, but the gist is that they were trying to create a program, an awareness program and also a screening program for folks who are likely to suffer from endometriosis, and I think that those are really laudable goals and I want to be sure I'm super clear about that. I think they're great goals, but there are some issues with the wording. A lot of the issues that we see with misinformation and endometriosis are present in those bills and so, because of my history as an attorney, I was familiar enough with the process to be able to actually try to engage in it.

Speaker 2:

And I have the time to be able to do it now. So it's kind of where that started.

Speaker 1:

Are these bills that you are seeing, bills that are primarily for menstruation and we talk about it being their view of menstrual disorder? And we know that this is not, and I'm sure that and I don't want to put words into your mouth, but I'm sure, because of your experience, it even fired you up more to say this is why I can't agree with this theory. Your experience led to that point. But what kind of legislation are they proposing? Because if they have this, it's a menstrual disorder and we know that it's not. Are they focusing primarily on fertility or just period product? What is it that they are primarily trying to achieve?

Speaker 2:

So the two primary bills that I focus my efforts on are related to, again, an awareness campaign in a screening program and they are couched as being menstrual health bills that is sort of the phrase they're using overall menstrual health screening program or awareness program. So they've lumped PCOS and endometriosis in together on those bills and I understand that primarily women's issues. The bills had a lot of language that excluded folks who suffer from extra pelvic endo, which is something I've had it on the bladder, the bowels, the gallbladder, the appendix, you know, all over the place. I also sit on the board of extra pelvic not rare out on the West Coast when you bang up this organization and so I'm intimately familiar with a lot of the extra pelvic endometriosis issues that arise a lot of our folks. And none of that was recognized in the legislation. They were targeting women of reproductive age and I'm drawing a blank right now I don't have the brain fog.

Speaker 2:

I'm drawing a blank in the language that you use, because it's different in each bill, the little phrases are just a tiny bit different, but essentially women of reproductive age, 15 to 44. So it completely ignored pre-peabescent girls or folks who don't identify as female post-menopausal women. You know, a lot of us fall outside of that range, we're not menstruating individuals between 15 and 44. And so huge categories of endometriosis sufferers were going to be missed by these pieces of legislation, and that was concerning to me. They also specifically explained endometriosis essentially, as you know, again, being a menstrual disease, retrograde menstruation being the cause, and that the cause, the reason we all feel pain is because these lesions bleed every month and cause pain. So it's just full of chock, full of misinformation, and so I went to work trying to change it and we've been successful in getting some small changes made. The big changes have yet to be completed and I don't know if they will be at this point, unfortunately.

Speaker 1:

The reason this matters so much and the reason the verbiage matters so much is because when we're looking at the doctors who are caring for us and they're looking at the legislative piece of it because that ultimately can govern a lot of other avenues right, it's important to get it right, because they're basing a lot of their information and their ideas off of these things. So it's it kind of is like a perpetuating issue. Right, it's a chain effect issue. It's not just a separate piece of the endometriosis advocacy, it's a whole thing, if you will. You know, probably not explaining that well, but I think it is. It's a chain reaction of our care and when we're pushing, you know we want better care for those with endometriosis it really starts everywhere. It starts in the laws that are governed that are supposed to help us, but don't because they're not getting it right. So it matters, that's exactly right.

Speaker 2:

And these pieces of legislation specifically delegated authority for implementing this awareness campaign and the screening program to our state department of health, and one of them actually contained an instruction to obtain information from the EFA and the Metriosis Foundation of America in order to create those programs. And while I applaud the concept of seeking help from nonprofits in the community, I don't think we need to be having retrograde administration folks writing our legislation, because that's what's going to our doctors in the state, that's what's determining who's going to be identified by that awareness campaign and screening program, and so when you've got a 12 year old who's having issues and bell aches, she's not going to be captured by that program.

Speaker 2:

And when you've got the 45 year old you know who had a hysterectomy years ago but is still having problems, she's not going to be captured by those programs, she's not included. Or if you have transgendered individuals, they're not going to be captured by those programs. So we're leaving out huge categories of folks and completely ignoring a lot of the just the fact that many of us are identified because we present with other symptoms first, not necessarily period symptoms, but you know, irritable bowel. We've all gotten like an irritable bowel diagnosis, right the UTI.

Speaker 2:

Yes, exactly so many other things, having legislation just perpetuate those stereotypes, those myths, the misinformation. My bad, I don't want to see it here on the state.

Speaker 2:

And so I my first attempt was to try to work with the assembly woman, to try to work with her office to better educate them, to hopefully get the wording in these bills tweaked, and they originally were receptive to that. And then I think that, you know, as time went on they were a little less receptive, and I understand why they are. You know, I think they're receiving information from an organization they believe to be reputable right across the river in New York City, and so I think that they they believe they're doing their due diligence and it's hard to explain why that's not sufficient. It's tough, you know, and you kind of walking on thin ice a little bit. But I provided them with citations for research. Of course, heather Godone and Kate Boyce had been incredibly helpful in providing me with the information I need to be able to kind of pass that along in a way that might be palatable for our legislators here. And then, once I realized that I wasn't really going to get anywhere working behind the scenes with the assembly woman, I started going to committee meetings to testify.

Speaker 2:

So the way our legislation works, so we have a bifurcated legislative system here in New Jersey. We have an assembly and a state house and every state's government system is going to work a little bit differently. But that's a pretty common arrangement to have two houses of your government, just like we have at the side of our level, and every time a bill is introduced in New Jersey it's introduced in one of those houses. So either the assembly or the state house ours were introduced in. These bills were introduced in the assembly first and then they're assigned two numbers, so the bill will be introduced in one house and it'll get a fancy-shancy number.

Speaker 2:

And then a companion identical version of the bill will be introduced by a friend of that legislator in the other house.

Speaker 2:

So it'll go through committee hearings in both houses and essentially the committee meetings are opportunities for the committee, the legislators who serve on those committees, to review the bills as they come through. There are opportunities for public comment and that's what I decided to start participating in. So they started tracking the bills and showing up just showing up at committee meetings, and it's a little uncomfortable, I will say, to be the only woman in the room showing up to oppose women's health legislation, which is how all of these bills have been categorized. So you kind of sit there by yourself with a big red target on your rack. Nobody really likes you when you do that, but I tried to make sure that they understood. I absolutely supported the bills and I think that she's got great intentions in trying to push these pieces of legislation through. But I think there are unintended consequences that they're not considering and so my kind of push has been to hopefully get them to consider those consequences.

Speaker 1:

Yeah, absolutely. I think that it's important to highlight the value of understanding your local government and the bills that are being passed. Why is this important? Why is it important for us to understand this at a local level, not just at a federal level? I think it's really easy for us to look at the federal piece of this because it's a bigger umbrella, if you will, but the local really holds a lot of power within your care and understanding. It is important. Why, though?

Speaker 2:

Absolutely so. Your local physicians those are the folks who most of us interact with our local gynecologists or primary care physicians, maybe urologists or gastroenterologists. They're receiving all sorts of guidelines and directives and information from your State Department of Health. And if your State Department of Health is being directed to do things by your legislature, it's important to know what's going on in your legislature because it all circles right back to you. The legislature directs the Department of Health. The Department of Health issues guidelines and directives for physicians and those are the folks who take care of you. So it absolutely affects your care, your children's care, your loved ones' care, and you start by figuring out what's going on. What is the lay of the land in your state? So most state legislatures have a great website In New Jersey it's just njledgelegcom and so every state will have a similar website and there are bill search functionalities on those websites so you can go to the bill search page and start searching for keywords. And again, every state's website is going to look a little bit different. But search for things like menstrual health, women's health period, even search for endometriosis, search for PCOS they're all going to have different wording so there isn't one piece of language that would be consistent. But pick keywords like that and just start searching to see what's already out there, see what already exists in your state and whether there's something that's pending and in New Jersey.

Speaker 2:

One of the great things that our legislature offers on the website is the ability to track bills. So once you've identified these bills, there's a little button you can click to track the bill and anytime a committee vote is scheduled, you'll get a little email. Anytime any action is taken on the bill, you'll get a little email. So you know when those committee meetings are going to be held, you know when you can show up, you know whose office is to call, because you can see whose names are assigned to these bills. And those are things that anyone can do.

Speaker 2:

And I understand it's really scary to go in front of a legislative committee and testify. It's intimidating, it's scary. They don't make it friendly and warm and welcoming. You know it isn't a warm fuzzy thing to do and I understand a lot of folks aren't going to want to do that. But something we can all do is write to the legislators, send them emails, make phone calls to their offices, so if there's something pending in your state, you can let them know how you'd like them to vote. You can specifically ask them please vote no on this. Please vote yes on this, and that's important, and that's something you can do. Your friends and family members can do for you, and that's easy to do.

Speaker 1:

Well, I think it's important too, because these people don't necessarily have to live with this disease, so they're not seeing it from a personal standpoint. So if you are able and you're able to communicate that to them from a personal standpoint, it could potentially help change things that maybe are red flags for the future. What are those things, though? What are the things that we should be aware of? What is some wording? What are some petitions potentially, that we need to be aware of, whether it's good or whether it's not so good? What can we look at for those of us who are completely oblivious to the legal system and some of the jargon that they do use, that we aren't familiar with, how can we differentiate the good from the bad?

Speaker 2:

So, again, I'm looking for the disease to be miscategorized, so looking for menstrual health or menstrual disorders that to me is a red flag. Anything that limit the identity of folks who can be identified as patients. So we know that endometriosis has been present in folks, young and old, with and without uteruses a wide variety of folks, and so legislation that limits and excludes large groups of categories of patients is a red flag for me.

Speaker 2:

Misinformation, so misidentifying the disease and correctly defining it, incorrectly explaining its histopathology, so how it works. And something that stood out to me in the New Jersey legislation also is the fact that they really seemed to almost over dramatize the risk of cancer with endometriosis, which is a very scary thing for many folks, and there's a whole separate paragraph in a couple of these bills that talks about increased cancer risk. And that's the last thing on my mind from endometriosis. There's a lot of other stuff that we're going to suffer with that's much more likely to affect more of us than any sort of increased cancer, and so it's knowing what information is correct. So looking at sources like Endowgirls blog, the CEC website, extrapelig Not Rare, all of these great sources, your podcast, even if you've so many wonderful people, and so you actually have a good grasp on correct, good knowledge, so you can identify things that contradict it.

Speaker 1:

Yeah, absolutely, and we see that all the time, even in research and in studies that are done to prove a point or a narrative. But it doesn't come with accuracy, and I think that's true even in the government branches of this disease right, any legislature done, you have to understand the discrepancies on both sides of that right, and it's not. This is not something that's like everyone gets excited to do, right. This is not easy work.

Speaker 1:

It's not fun, but I think the more equipped we are, the better we change the narrative around endometriosis for generations, and that is to me what is so important, as someone who has girls who could potentially have endometriosis. When we're looking at future generations, how can we insight change? How can we insight better care for them? How can we make sure that doctors don't fall prey to these legislative initiatives that they really don't know anything about? And I think that's why, for me, looking at what you're doing is imperative. We can't just stop at talking about it online. We have to really go forth into these government agencies and then in our senators or whoever it is that you can get to be passionate with you.

Speaker 2:

That's it and it's. You know you have to give a lot of thought as to how you're going to do that, because they deal with so many pieces of legislation on a daily basis. You know, one of the most important things you can do is convince them why they should care. Right.

Speaker 2:

And so I always start off, every every time I've testified in front of a committee, I start off by telling them why they should care, and what I generally do is get a head count, as we're sitting in the room, of the number of women, and even though it's not necessarily just a female disease I don't like using those gender terms but for the sake of argument, in that context it is helpful. And if there are 30 women in the room, well we know then roughly three, probably more, are going to suffer from endometriosis. And so I have them look around the room, I have them think about their daughters, their granddaughters, I have them think about nieces and nephews, or that little girl in their life who they know of, who always has that persistent belly ache, you know, and she always says she doesn't feel good. Well, maybe she has endometriosis. And you can see the wheel start to turn because they start thinking about the people in their lives, and so they pay attention a little more closely, and we've been able to gain the support of a couple of different legislators because of that, and they've indicated, you know what you made me think about my kids, or my grandkids, or nieces and nephews, or whoever it is in their life and they've been willing to make a call.

Speaker 2:

The main sponsoring assembly woman. I've only been able to convince a few to vote against it and most of them don't want to be on record as voting against women's health legislation. Air quotes yeah, and I understand they want to protect their voting record. But a few of them have been willing to vote against it and several more have been willing to kind of lend their support to the changes we're seeking and again they have not completely come to fruition. They've added little tweaks here and there that have been helpful, but I still think there's a long way to go. Yeah.

Speaker 2:

But it's convincing them why they should care. I think that's got to be stepped on and letting them know I let them know the toll that it's taken on my life.

Speaker 2:

You know a full-time practicing attorney and that's something that I don't think I can do at this point. You know the stress and toll of that job is just not something I can sustain with the issues that I've dealt with and continue to deal with. It's just not a possibility. And when they start to realize the damage that it takes to a body, so I will detail for them on the record which is a little humbling, Right, but I will detail for them on the record all of the organs I've had to have removed, all of the other organ systems that have been affected negatively, the toll it's taken on relationships.

Speaker 2:

You know we know that this isn't easy on romantic relationships or families. Yeah, you know, it absolutely takes a toll, and so when you start listing for them all of these impacts, all of that cascade of dominoes from endometriosis, it gets their attention a little bit. So I think that's something I would absolutely encourage folks to do. If you're going to try to talk to your legislators, remind them why they should care.

Speaker 1:

Yeah, absolutely, and I think that to further that conversation too, as we talk about the care and treatment, but what we haven't really touched a lot on and I think that as an endometriosis community we should highlight more and push for more is the disability portion of this right, because a lot of us have been inoperable, like we can't work, we can't contribute as much as we'd like to society because we are in so much pain, but there's not a whole lot that protects us from that and it's not of our own doing right. There's other disabilities that get disability pay and there's other disabilities that get recognized as an actual disability, but endometriosis does not necessarily get that recognition because it is categorized as a menstrual disorder in a lot of these things, so diseases or illnesses or conditions that automatically qualify you for disability payments.

Speaker 2:

And endometriosis is not one of them, and it's the soft-fell catch 22, where, if you are able to access appropriate excision early and young, before your body is destroyed, perhaps you can then continue to spend the rest of your life as a productive member of society. However, when you can't access that care to begin with because you can't afford it, but you can't function well or fully because of the endometriosis that you can't actually have treated, because the care isn't accessible, it's just this cascade of dominoes. So if we enable access to care earlier on, we change the economy essentially for endometriosis folks and their families and their employers by allowing people just to access care. But if we prevent that access to care so that their condition deteriorates so much that they're unable to earn, then they never access the care and then we've got folks who need disability who might not otherwise if we didn't, if you were able to give them the care they need sooner.

Speaker 1:

And it all goes full circle right. It's this hamster wheel effect of things and, to be honest, I think a big part of this is money talks. That's a big portion of some of what we're against is we need to have the funds to afford things, but we can't have the funds because there's things in place that are barriers for that. And how do we create change, to change that economy of endometriosis and I think what you're doing is key in that and the people like Heather Guadon and people like Shannon Cohen who are traveling everywhere pushing for better change, talking to the people and, like Dana said, you don't have to be the one even talking, but if you stand behind the people that are, that says a lot more than not doing anything either.

Speaker 2:

I think you're right and sometimes giving the folks who sit on those legislative committees of visual to latch on to is helpful, so folks are inclined to testify.

Speaker 2:

I've been fortunate to have a number of women join me and testify and they'll prepare something to say about the effects of endometriosis on them. But I've also been able to get some other folks to come with me to a few committee meetings not everyone, because they're often very inaccessible. Attending these actual legislative sessions can be hard. They're held during the day. A lot of people can't afford to miss a work day to go. You cannot participate virtually in New Jersey anymore and so it's hard. They're very inaccessible for folks to participate in. But I've been able to convince a few folks of drug my poor family and friends along with me.

Speaker 2:

And I put a big yellow ribbon on everyone and I make sure they're in the front row. So when I sit and testify with the yellow ribbon they can see a row of folks sitting behind me, all wearing the same ribbon.

Speaker 2:

And I reference it at some point. I reference the when we talk about people in the room, just so they understand. It's not just me speaking. I stand for a lot of folks and it gives them some sort of visual. You can tell them why to care, and then letting them see that it's not just some crazy woman who showed up that day, that it actually matters to other people too, it's helpful.

Speaker 1:

Yeah, I remember last year at the Inmitriosis Summit.

Speaker 1:

I remember you standing up and talking about that and you and I. This is why you have stuck out to me so much. I mean for many reasons, but this is one of the things that you said that really stuck out to me was the fact that you would take anyone with you just to show up, because then it gave you credibility and it didn't matter whether it was your mom, your dad, your cousin, whoever it is, to stand behind you. But if you show up alone, your credibility is just not as impactful because they are seeing one person as opposed to many people, and I think there's so many with the number you know, the one in 10 number. Clearly there are a lot of us affected by this and just showing up and maybe you don't really know how to show up or maybe you're not sure your place in the Inmitriosis community as far as advocacy, this could be one of them. It's standing behind those who are willing to talk about it and say I have your back you know and use the world.

Speaker 1:

Yeah and I. This is so funny cause I just I grew up on a near military base, but they they say you know, I have your six and it means that they have your back right, I got your six. And the reason they say that is because it is the one area that they can't see. It's the most vulnerable spot that you need someone. It's behind you, and so to step in and be someone's six is, it's huge.

Speaker 2:

And these people would give their life for that. Oh yeah, and it doesn't have to be. You know someone who's a lawyer. You know you don't have to be a lawyer to do any of this. You know everyone. Every citizen is entitled to be heard by their legislature. Everyone is entitled to go and speak. That's what public comment periods are for. And being, yeah, drag your mom, drag your dad, drag your sister or your best buddy. You know whoever in your life is going to lend support and they don't have to say a word, but just sitting there with some sort of visual, whether it's yellow ribbon or some folks don matching T-shirts.

Speaker 2:

You know depending on what they're there to support, just something, so that when you're speaking, or when whoever you know is going to be speaking is doing so, it gives them a visual. You know again, it's not just one person speaking. At that point it the weight of what you're saying becomes much more significant, because other people are there with you. You're not alone.

Speaker 1:

So it means a lot, absolutely. What are some of the things you're looking forward to continuing to advocate for in the, in the legislator for you? Yeah?

Speaker 2:

So at this point we just started a new legislative session here in New Jersey in January, and so we have two year legislative sessions. It's a little bit weird the way it works and again, it's going to be different in every state, but any bill that did not become law during the last legislative session, which expired in January, they die.

Speaker 2:

They die out and they have to be reintroduced and the whole process starts again in the new legislative session. So right now I'm watching these bills to see what's going to happen when they're going to be reintroduced, when the next round of committee hearings are going to be, because they, to my knowledge again, sometimes the websites are a little slow in getting updated. Sometimes they're very quick and sometimes they're slow. I've not yet been able to figure out. I think it's just a matter of human resources to input the information, I'm sure. So the bills that have not become law yet will be reintroduced and start the process all over again. So I'm waiting now to see what happens with them so we can start our next round of efforts to hopefully correct them and I hate to oppose them, I really do, gosh, we need this stuff so badly, but we need it to be correct. We'd rather have no legislation than harmful legislation. So I think right now, just watching to see what happens and seeing, kind of where our efforts are most needed.

Speaker 1:

Where have you seen the most change in the bills?

Speaker 2:

So they were willing to add. It's a very small tweak. They added in the categories of patients who are identified by the bills they added language that stated specifically that it could include pre-menarchal girls or post-menopausal women. They still identified that women of reproductive age 15 to 44 and then kind of parenthetical after that, also including pre-menarchal adolescents and post-menopausal women. So that was a big change.

Speaker 2:

I've submitted sort of paragraph by paragraph suggestions to like for language changes. So I've rewritten the bills a couple of times in ways that I think are not so substantial that they're going to balk at the changes, but substantial enough that it addresses our concerns. And they've kind of picked and chosen, you know, a few little pieces here and there. So that was a big change. But I think there's again a long way to go. And they did add some symptoms, a list of symptoms that people suffer from. It is by no means an exhaustive list. It's very brief and leaves out some pretty significant symptoms that I've asked them to include, and so they haven't included them all, but they've included some, which I think is a step.

Speaker 2:

So I feel like that's where they've been willing to make changes, those two areas.

Speaker 1:

Yeah, and the reason I ask that is because that wouldn't happen if people like you wouldn't step into that place and say something.

Speaker 1:

And so just being aware of it is great, but making sure that if you have a passion for it, to fight for that, because not everyone will have the same passions, and I think that's what's so great about being in a community is that you have the ability to speak at this level and you understand it better than most would. But other people and, adversely, other people wouldn't want to do a podcast. Let me just tell you it's not that easy. I'm just better used than me. So just using your gifts and skills and abilities to advocate, but knowing to stand and have someone's sex on this, too, is just as imperative, and so I think it comes a full circle and there are great advocates doing great things and standing behind them and supporting them and encouraging them Because this is kind of daunting to do and it's discouraging and standing behind people and saying we have your back, keep on going, you're doing a great job. What can I help with? That matters too.

Speaker 2:

It does, and I'll tell you, our community has been great as far as folks sharing our efforts here in New Jersey on social media. It's been hugely helpful and that has directly led to several other folks from the Ando community coming out and meeting me at the state house to sit through these community meetings. And we also we do have a petition that was designed to convince the legislators again that folks care just to kind of correct the wording, and we've had hundreds and hundreds of signatures there. So that's been amazing. And, again, all due to people on social media having my sex and sharing all those things, which has been so, so helpful. Reports of that just came at the end or so.

Speaker 1:

Yeah, absolutely, and if people want to sign that petition, can they do it, even if they are not in New Jersey.

Speaker 2:

Absolutely, so. You don't have to have endometriosis, you don't have to be in New Jersey. Anyone in the world can sign that petition, so I'll make sure you get a link for that.

Speaker 1:

Yes, yeah, absolutely. And where do they find this? Just in case they're listening and they want to convert it to memory, which is something I'm not skilled at. But where would they find that petition?

Speaker 2:

Yes, it is changeorg NJEndometriosis. If you Google that, you'll see a picture. It's a yellow background of a woman clutching her belly, and that's our petition.

Speaker 1:

OK, so changeorg.

Speaker 2:

And then NJEndometriosis legislation. I believe is the rest of the link.

Speaker 1:

OK, perfect, so go ahead and sign that, be part of the team, even if it's in New Jersey and you're not in New Jersey. It takes sometimes only one state to start the chain effect of change, and so even though you're not in that state doesn't mean that it won't affect your state at some point or you at some point, so that's a really good place to start. Do you have anything to impart on all of us when it comes to this In closing?

Speaker 2:

We all have a responsibility to just share our knowledge and make sure that others are educated and empowered. The phrase Heather Godone always uses is each one, teach one. And.

Speaker 2:

I think that there's so much to be said for that I wouldn't know half of what I know if it wasn't for folks like her and Kate Boyce and other advocates sharing their knowledge, and I think that we all have a responsibility to do that, not just in our endo social media pages and all of that, but in our personal lives too, and I don't often share as much on my personal social media about these things for obvious reasons, but I've shared a little bit and it's actually directly led to a number of people reaching out privately who didn't know that this was a thing, and they've been diagnosed with endo and hadovlations or they're struggling to find a doctor who can give good care, and so we've been able to tap into the network, so folks who we all know through our community to get them good care.

Speaker 2:

And so I think, yeah, just do something. Whatever it is that falls within your skill set, whether it's again a podcast, whether it's showing up to the legislature, whether it's making really great social media graphics whatever it is, make an effort to do something.

Speaker 1:

Absolutely, that's so good. That's so good If you want to follow more of what Dana is doing and her journey and then also just to be connected with her. She is on Instagram and your Instagram is endoeatsnj.

Speaker 2:

That's it, yes, that's me, that's you. Yes, I started when I was making dietary changes and so it's full of chocolate recipes and that has slowed down quite a bit lately. But yeah, you will see a lot of food recipes.

Speaker 1:

I love that because food speaks. Yeah, right, people don't love food, Right? Yeah, the best place to gather is around the table, which is why I record this at a table, because I want people to feel like they're just having dinner with me and having a conversation, because that's the best time to have a conversation and the best conversations come from it. So I'm here for it. I'm here for it. Love that. Thank you so much, dana, for taking your time and for all the work that you're doing, and I'm excited to see what change you can elicit in the future. But, furthermore, I'm just excited to be able to be on this journey with you and have another person have my back. So, thank you.

Speaker 2:

Thank you so much for all that you're doing, for having me here today and all of the great work you're doing with your podcast. I am so impressed by your interviews and the folks who you're hosting again to teach others, to empower others and educate others.

Speaker 1:

So thank you for all that you're doing. Thank you. That means a lot to me. Thank you, and until next time, everyone continue advocating for you and for those that you love.