From Silence to Strength: Endometriosis Advocacy Beyond Gaslighting with Heather Guidone

It can take 7-12 years (on average) to get an accurate endometriosis diagnosis. Which means an outrageously large number of women are struggling to get real solutions to their complicated and varied symptoms which are negatively impacting the quality of their lives on a daily basis.

Heather Guidone is one of the women who struggled to get the answers she needed, but after getting the help she was seeking, she took a different path. She has taken it upon herself to do whatever it takes to make it better for the next generation. 

Her knowledge and motivation is inspiring and her passion is tangible in this interview.

If you are looking for something hopeful and optimistic in the often devastating world of endometriosis, this is the perfect interview to jump into.

Transcript

Dr. Ginger Garner PT, DPT (00:02)

Hello and welcome back everyone to the Living Well podcast. This is Ginger Garner and today I have an amazing guest to kick off our season, Heather Guidone and y 'all.

If you do happen to hear any dog barking, it's just a sign that we're all real human beings here. And my elderly Labrador Retriever loves to get involved. She can't hear anything until there's a storm. So let me introduce Heather to you guys because she's an amazing individual and she is the program director of the Center for Endometriosis Care. She's also a board certified professional healthcare advocate.

She has focused on bench to beltway to bedside efforts in endometriosis research, facilitation, legislation and policy reform, education, advocacy, activism, patient centric care, and more for over 30 years. And more importantly, she's someone who personally struggled with the disease. Her lived experience brings a unique perspective to her work.

It fuels, absolutely fuels her passion to impact change in the way endometriosis is researched, treated, and publicly perceived. And that's a huge point that I want to come back to when we start chatting. She is a reviewer for all kinds of programs for federal medical research grant programs. She is active in Representative Gilchrist's Endometriosis Legislative Working Group, the Society for Women's Health Research, National Endometriosis Working Group, among others, and serves as a member of the Bon Secours Hospital System Patient Advisory Committee. 

She's also an editorial board member and reviewer for various patient -centered journals and has contributed to countless books, documentaries, and other publications on endo. my goodness. Sorry, I've got something on my eye for those of you who are watching. She's a member of various public health associations. The International Society for the Study of Women's Sexual Health, Society for Menstrual Cycle Research, and other relevant organizations, and is a founding member of the PACB Justice, Equity, Diversity, and Inclusion Task Force. 

Her priority focus remains on ensuring representation and creating space for patient, advocate, and stakeholder voices in all places where decisions about health care is being made. Welcome, Heather.

Heather Guidone, BCPA (02:44)

Thank you, Dr. Garner. It's so great to be here. You know, I am a huge fan. So this is a real honor. So thank you so, so much for having me.

Dr. Ginger Garner PT, DPT (02:53)

It's actually, it's going this way,

Heather Guidone

Mutual Love Fest

Ginger Garner

All the things. Because of all the work that you do is really truly unbelievable. And I have stories and maybe we'll get into them. 

Heather Guidone:

We can get into it all [laughter]

Dr. Ginger Garner:

But you can find, y'all, you've got to look her up. You can find her running the ship at centerforendo.com, Center for Intermediate, Center for Intermediate. my goodness, y 'all.

Dr. Ginger Garner PT, DPT (03:22)

I'm just so excited and I'm also concerned about the dog barking in the background, quite frankly, at the same time that I cannot get my words out. Center for Endometriosis Care in Atlanta, Georgia, the center that gave me my life back.

Gosh. this is, it's a public thing we're talking about that has been embodied personally. It's painful, it's sensitive, it requires loads of empathy and you have taken that personal fight public to create awareness for everyone. And that's what's amazing and just beyond honorable. And I'm just wondering because I am very curious about your whole story. Those of us with endometriosis don't often get to sit down around a coffee table and share stories, swap stories, right?

Heather Guidone, BCPA (04:21)

No, that's true. That's absolutely true. You know, and I am a big fan. You will hear me say this a million times. If not us, then who? If not now, then when? And that is something that I have always carried with me as sort of a driving force because you're right. This is a very, very public disease, but it's not talked about enough publicly. It is a priority public health crisis, but we don't treat it that way.

And so there are so many gaps and so many shortfalls with the way that the public perceives the disease, even how patients are led to understand their disease or just believed outright. How it is treated, the differences in treatments, the efficacy of treatments, research, research funding. You know, it's got so many intersectional layers just really embroiled throughout. 

I mean, you have gender bias, economics, you have all sorts of things that factor into how people are diagnosed, when they're diagnosed, if they're diagnosed, when they are believed, if they are believed, how they're treated, how they can access care. So we have a lot of work to do in endometriosis. I've been at this 30 years. We've made some progress. We have a lot more to go. So we can't give up.

Dr. Ginger Garner PT, DPT (05:38)

Yeah, yeah, you're right. So when you started this journey, I mean, how long did it take? I've heard part of the story, but how long did it take for you to receive your diagnosis of endometriosis?

Heather Guidone, BCPA (05:50)

Mine was super quick, only about seven years.

Dr. Ginger Garner PT, DPT (05:53)

Funny not funny.

Heather Guidone, BCPA (05:55)

When you compare that to the average 12 year delay in diagnosis, I was a neophyte. And much like everybody else, I mean I actually think it was probably easier for me. And I say that with a caveat. We're talking diagnosis in the eighties, right? So there was no social media. The way that we researched things was literally going to a building and pulling out books.

The way we got doctor referrals was the yellow pages. Some folks won't know what that is. 

You know, there was no networking. There was one organization at the time. We had pen pals, literally pen pals. So there was not really a support infrastructure in place. There was not a very patient centric or patient oriented infrastructure in place. But it was still probably easier because I wasn't told you, you know, stay off Google, stay out of those groups. I wasn't discounted in that way. 

I was told, of course, leading up to the time of my diagnosis, that it was normal, that it was nothing to be concerned about. I was very young, so I was told I would grow out of it. All of those things still did happen, but when I got to the right doctor who did take me seriously, he didn't discount the diagnosis. And I know that so many individuals with the disease are going through that right now. 

As we tape this, someone is being told it's not endo and in fact it is. So was probably easier for me then without all sort of the, you know, the noise in the background because they couldn't tell me to stay off the internet. They couldn't tell me to stay off that Facebook group or stay off the web. You know, there was, there was none of that going on. 

But I was, I was still told it was the way it was supposed to be. This is just how it is. Suck it up. All of those things have persisted for eons. They pre-date me. They will come long after I'm gone, unfortunately, and we need to work on changing that.

Dr. Ginger Garner PT, DPT (08:01).

Yeah, absolutely. And it's a big driver and catalyst for why I'm spending an entire season of the podcast just on endometriosis alone. 

Heather Guidone, BCPA (08:02)

And we're so glad that you are. Yay.

Dr. Ginger Garner PT, DPT (08:05))

Yeah, I'm so excited about it. You know, my journey started without me even being aware of anything. I was a kid when my mom was diagnosed. And given the, here's the first myth we can bust and giving the cure of a hysterectomy. 

Heather Guidone, BCPA (08:26)

Yikes. Yeah. Not surprised. Not surprised.

Dr. Ginger Garner PT, DPT (08:28)

Yeah. Yeah. And that was in the 80s also. So, and so I'd love to contrast those experiences because for my familial experience, I lived in a very rural area. I ended up actually with exploratory surgery when I was very, very young because they didn't know what was wrong

and didn't even guess that it would be appendicitis in a two or three year old. So, I mean, my experience started way, way, way early, but that was alongside my own mom being gaslit with her experience. 

What symptoms were you experiencing that drove you to be on this path? Because they are so broad and I think the general public has no idea. In fact, I can say with confidence because I've heard it out of the mouths of many OBGYNs who said to say, and has said to me actually personally, all those gastrointestinal, that has nothing to do with pelvic health whatsoever. So what happened with you?

Heather Guidone, BCPA (09:28)

No, that's true. know, mine was probably the classic increasing and worsening menstrual pain that was not on par with that of my friends or peer group. GI symptoms have always been a major, major part and parcel of my endo. And they were dismissed way after diagnosis and into many years of treatment.

As it turned out, I had pretty significant bowel endometriosis when I finally got to a specialist. So that was really heavily discredited and discounted. And it turned out to be a major, major part of my symptom experience. 

But you know, there was other things too. There was, you know, later in life, painful intercourse, then infertility, a lot of urinary issues, pain, dysfunction, things like that. The bowel and the GI were off the charts, debilitating, disabling.

And you know, sort of the, maybe the less classic or maybe just the under recognized, the lower back pain, not during menstruation, but all the time. Really sciatic type pain, very, you know, predominantly on my left side, but kind of referring out. Fatigue, exhaustion, all of those things. 

And then, you know, people will tell you. Well, I mean, you you're working so hard or you're going to school or you're doing these things. Of course you're going to be tired. You know, you're high strung. Of course you're going to have bowel issues. you know, all of that, notwithstanding, I still had a very organic advanced severe disease. So yeah, a lot of those symptoms I myself didn't recognize as endometriosis.

And my specialist was like, yeah, no, that's all endo. And it's all still there despite having had so many surgeries, undergone so many medical suppressive treatments, all still persisted until I was very fortunate, very privileged enough to get my excision surgery.

Dr. Ginger Garner PT, DPT (11:35)

Yeah, let's talk about that for a second. Talk about the surgeries leading up to that because in my practice on a weekly basis, I still get patients coming in, women coming in who have been told that the ablation that they just did was fine and covering it. And somehow they end up in my office and I'm like, okay, here's what's gonna happen. Yeah. 

What happened in your situation? Because I'm sure the same thing happened moving up, you know, to that point before you got excision, how many surgeries did you endure? How many providers did you have to bounce around to?

Heather Guidone, BCPA (12:09)

21 surgeries, one excision surgery, one hysterectomy. Those initial surgeries, my very first was a laparotomy, because it was the days of horse and buggy so long ago. And I don't have any kind of ill will towards my diagnosing surgeon. He did the very, very best he could with the knowledge that they had at the time.

He did not delay surgery after having met me and going over my profile and my symptoms. He immediately scheduled me for laparotomy. He did the very best he could when he went in there. Again, old school. So it was really about, you know, cut and remove, not excision, but cutting out, not burning and ablating. But again, he left so much disease behind that. And because it was such, I don't want to say a butchery because it wasn't, but because it was such a rudimentary surgery, there was a lot of scar tissue, a lot of fibrosis going on at subsequent surgeries. 

But then it really became, you know, I would say, dare I say, bordering on negligent thereafter. Because then it was a constant two to three times a year. By the time I had recovered from the last surgery, I was going in for the next surgery and it was the same story every time. I had a couple of the same surgeons, so that would be why they were doing the same things, going in and burning it off, burning it off, burning it off, burning it off. 

And I would say every time, I don't feel better. This is not working. I actually feel worse. And each time they would go in, there was more carbon deposit, more scar tissue, tons of adhesions, you know, and all of those things are pain generators, right? I don't need to tell you, you're, you know, one of the best PT's we have, you know this. And they would just continue to do it. 

And then in between that they would do GnRH suppression. And it was like, well, at what point am I going to get better? And I just didn't, I just got sicker and sicker and sicker. And I know that there's a lot of bandwidth out there that sort of has a tug of war. Ablation is fine, excision isn't necessary, surgery isn't necessary. I know that that's the main conversation being held out there.

I am a person, I am a living, breathing being, and I can tell you, I have surgical reports and surgical photos that show you the results of ablation and the results of excision, but I'm also a lived experience. And I can tell you that I am here because I had excision and because I had multidisciplinary care and I had pain management and I did all of the things that had never been offered to me before in an integrative approach. 

So, kind of anybody that discounts or discredits that and says, it's not necessary, all you need is imaging and drugs. You are invalidating my experience because I had the imaging, I had the drugs, I had the subpar surgeries. Somewhere in there lies is the truth. And I've always been a big believer of early intervention, correct and timely integrative multidisciplinary care, 

followed by lifestyle and other management adjuncts. 

I don't think that one thing is the answer. I know the way that I went was not the answer. And if I can help anybody avoid that, even one person save them from that kind of pain and isolation and just distress and all of the things, I think it's worth it to talk about our stories.

Dr. Ginger Garner PT, DPT (15:54)

Yeah, absolutely.

Heather Guidone, BCPA (15:57)

I get really fired up about that because I'm like, you can publish all the papers you want. And that's great because I'm a paper person, right? I love publish. What I don't love is discredit lived experience. And I am a walking, breathing, talking, lived experience of someone who has had both sides of the coin. And I think, like I said, somewhere in the middle lies the right approach. And that's timely intervention and the correct intervention.

Dr. Ginger Garner PT, DPT (15:59)

Yeah. And I can speak to all of the women that have come through my practice who have had the same experience, the same lived experience, multiple surgeries, all ablation or extremely conservative. Wasn't comfortable, couldn't get it all, you know, not really excision, you know, at that point for them to have to go on and have the, you know, the actual surgery and then come out of that.

I have multiple women coming actually out of CEC right now or out of other well -known excision surgeons and saying, when I woke up, I had no pain for the first time in so long. And then, you and then when you spoke of the integrative care, when you get into the integrated multidisciplinary impact, then they end up back, you know, in my office and we go, okay, let's deal with all of the post-op things that are still there because your tissues still, they didn't get the memo, you know, and you might have a psoas still overacting or the back muscles, you know, still firing or the pelvic floor, definitely, or the bladder. 

Heather Guidone, BCPA (17:29)

Right.

Absolutely.

So much dysfunction, so much dysfunction we see in our patients.

Dr. Ginger Garner PT, DPT 

Yeah. Yeah, that's just kind of left. And then we go and we start to piece by piece, you know, calm everything down. I describe it to patients as kind of pressing the reset button to let everything know, hey, it's okay now, you know.

Everybody can, you know, kind of take a breath and calm down. But for a second, let's not calm down. Let's stay fired up because I have a good question for you. Is can you describe a time, because I think a lot of women don't know because we are culturally and socially conditioned to follow and not lead, to not speak up, to endure and to just suffer through, right? I mean, on all levels. 

So can you describe, there's a tipping point. I remember when I first start to, I remember when I felt it the first time, where I thought, know, head sideways, know, your eye twitches a little like, was I just dismissed? You know, did they just completely not take me seriously? And they were gonna sign me up for a battery of regular tests. 

Like the first time I went to a gastroenterologist and they wanted to of course sign me up for something that would not have gone well based on where I know my endo was. Thank goodness, you know, I said, no, I really, that's not the issue, you know. So can you describe that experience when you felt dismissed or not taken seriously by a provider?

Heather Guidone, BCPA (19:02)

I think collectively that was the experience for two decades. I don't think there was ever an improvement upon that until I got to someone who really gave a damn. I can remember so callously being told, well, you're never gonna have kids and you're just gonna have to deal with it. Now that's fine because we are not baby making machines and that is not our role on the planet. 

However, for those who want to, you know, build a family extend a family have children naturally do whatever if they want to bring a child into their life somehow and they want to be pregnant for someone dealing with fertility issues There's a way to approach that and there's a way to couch your remarks and there's a way to not be so dismissive and Just blow it off and be like, okay, That'll be six hundred dollars and you know I'm gonna go write my next book and be on the Oprah show because those were the doctors I was seeing I want to make that very clear

Heather Guidone, BCPA (20:13)

I had a level of privilege that gave me access to the best of the best, right? So you would expect that these scions of gynecology would be compassionate and would be skilled. They were the worst doctors I ever had in my life, male and female. You know, it was the non -famous working Joe, working Bob as it was, specialist who had dedicated his life to helping people with endometriosis that made the most difference. 

So I always tell people, I don't care if they're TikTok famous or Insta -doc, I don't care. You need to really look at their volume. You need to look at their outcomes. You need to look at their approach. You need to look at what patients are saying most importantly, because I thought that, you know, because I could get access to them because of who I knew and whatnot, that somehow I would be on the right track. 

And all I was on the track of is pulling money out of my wallet and throwing it away so that I could be told that this is normal. Why are you complaining? I remember a female physician telling me, well, it can't hurt that much. You can't be having trouble breathing because you're talking. I just like comments like that are so unproductive and so unhelpful. And I'm talking decades ago and it sticks with me. So that's something that that stays with you. 

You start to doubt yourself. You start to question every decision you've made about your care. You start to think no one will ever help you. How could you be helped? You are beyond help. Your case is not manageable. And in my case, that just wasn't true. There was help. I just needed to find it. So that makes me very angry because I know that there are people still being told, again, as we tape this right now,

Dr. Ginger Garner PT, DPT (21:44)

Mm

Yes.

Heather Guidone, BCPA (22:04)

someone is being told, pregnant, will treat your disease. Someone is told, get a hysterectomy, oophorectomy, it will treat your disease. Someone is being told, just suck it up, this is what your lot in life is. And that's so unacceptable. We don't do that to cancer. We don't do that to diabetes. We don't do that to someone who, you know, depends on a wheelchair. We don't say, get up and walk, or you're not supposed to. I hope nobody's doing that. So I don't understand why endometriosis is treated publicly in such a cavalier manner. 

It's one of the most debilitating diseases out there and it receives the least acknowledgement for the ruination that it can bring. And it really does impact every aspect of life from sex and intimacy, fertility, your ability to work, your ability to go to school, your ability to go out with your friends, your self-worth, your self-esteem, all of these things.

And people are like, well, you know, it's just a bad period. I guarantee you it's not. I guarantee you it's not. So there's a lot of that gas lighting still going on, unfortunately, and we need to put an end to it. You know, I always say what we allow is what continues. So people see me out there, you know, in the world yelling and screaming about, no, you're wrong. that's why.

Dr. Ginger Garner PT, DPT (23:08)

That's right. That's right. I'm even like wearing, I don't even know if you can see it through the wires, but I'm wearing my, you know, one in 10. Yeah. But the, you know, the other thing about the shirt is, because it receives so little attention and because it's not taken seriously and because it's not, we don't have the money that we need for research for it. Is it more than that? You know, more than one in 10.

Heather Guidone, BCPA (23:29)

I would hedge a bet that it's probably closer to one in six. I just think that we don't even know because realistically we can do all the epidemiological studies we want, but they're not capturing the experiences of the voices of the unheard. They are not catching, someone maybe who doesn't look like me or love like me. And so their experience is discarded and they're not captured in the stats or you know, an adolescent who is just being told they're histrionic and imagining things and seeking attention, they're not being captured. 

So it's very important to me that all stakeholders are represented in the literature, in the meetings, at the table where decisions about their health are being made. Because that's the only way we're going to be able to measure it and what gets measured gets done. So it's very, very important that we go outside that, you know, typical sort of affluent, rich white women patient that has persisted since 1902 and start realizing that all bodies can have endometriosis. You don't need a uterus, you don't need ovaries, you don't need to menstruate. Endometriosis doesn't care if you have been to school or who you love or if you're a good person or a bad person, what color your skin is, what village you hail from. It can affect every body, figuratively and literally. 

And I think until we start expanding the literature more, there's been some contributions, but till we start expanding more outside that mistaken mindset, we really won't know. We really won't know.

Dr. Ginger Garner PT, DPT (25:27)

Yeah. You mentioned a population that I think gets gaslit a lot, and I have seen this again and again, and it's the population of women that are told, you can't possibly have endometriosis. You're like menopausal, right? Right, right.

Heather Guidone, BCPA (25:44)

Yeah. It'll go away when you, when you hit menopause.

Dr. Ginger Garner PT, DPT (25:48)

What a crock of…

Heather Guidone, BCPA (25:50)

We have pathology reports showing otherwise. I mean, it doesn't get much more concrete evidence than that. I don't know what else they need. If you're not going to believe the patient, believe their pathology and histology reports because we see it. We see it. Our guys are operating on it every day.

Dr. Ginger Garner PT, DPT (26:03)

Yeah. So given that, women are experiencing this, you know, the gaslighting and the treatment that you received before you found help is much the same as, you know, 30 years ago. Unfortunately, we've not made much progress in that way. And there is a term coined called institutional betrayal.

And it's when you go and you seek care in the very, you know, an asylum in the very place that should be a sanctuary and taking care of you. And then they betray you by saying, it's all in your head. It's just anxiety. Here's a pill. Take this. It will be fine. It'll go away. So let's talk for a second about, you know, how that affected, I know how it affected my trust in the medical system. How did it impact your trust in the medical system ultimately?

Heather Guidone, BCPA (26:58)

Well, I have none. I have none. know, they, they, there's that running joke that, you know, we always make the worst patients, right? And that's true. I do. I will neglect my personal health. I will not go to the doctor. You know, unfortunately I will like look to Dr. Sinervo, like, Hey, what do you think about this bump on my finger? Because I trust him, even though it's not his expertise, because I know that.

But because his heart is the size of the moon and he's genuine and compassionate and caring. Whereas my experience with little exception has been very different. Now, I definitely don't want to lump, not all doctors. I have an incredible GP and I want to preface that by saying, I am not sitting here today as someone who is incredibly healthy out running marathons. I have a great number of different and overlapping conditions that I still deal with. I will always deal with. 

Some are the result of endo, some are not. So I am very much immersed still in the medical circle. I have a cardiologist who I go into and I feel like I'm bothering him. I don't want to even go to the gynecologist. I'm just gonna be straight up with you. I don't go. But I have other specialists. I have a nephrologist that I deal with and you know,

I already go to my appointments on the defensive. And that's terrible because I already think you're gonna fail me. So inevitably I'm gonna manifest that, right? I mean, they have been very helpful. They're very good at what they do, but they don't meet my bar. They don't measure up. And so I carry that with me. I carry those stripes with me everywhere. I expect you to fail me before I even set foot in your office. So I'm not disappointed, right?

Dr. Ginger Garner PT, DPT (28:24)

Yeah.

Yeah.

Heather Guidone, BCPA (28:48)

And that's, that's a problem because like me, others will defer care seeking for things that they really need medical attention for. Or they've been told so many times that's just your endo or that's the way it should be. And that's a huge problem because it impacts the direct care of patients, whether they're seeking the care they obtain, how they can access that care. So it's, it's a major problem.

Dr. Ginger Garner PT, DPT (28:49)

Yeah.

Heather Guidone, BCPA (29:18)

It's a major problem. It's not just about my doctor is mean. We're talking real health outcomes.

Dr. Ginger Garner PT, DPT (29:19)

Yeah. Right, yeah, we're talking live or die, know, keep part of your bowel or have an obstruction and need a resection and it changed the rest of your life. You bring up a really important point and I think a lot of this is going to be unfortunately manifest and born out of discarding women in general and not taking them seriously. So now we're talking about healthcare justice and sexism in, and also racism, because if you're a woman of color, whoa, you're, unfortunately you have a double whammy. You're a woman of color, you know, and female. 

Heather Guidone, BCPA (29:48)

Absolutely.

Absolutely. Terrifying. Terrifyingly so.

Dr. Ginger Garner PT, DPT (29:50)

Yeah, it truly is. And I have stories from colleagues who are OB -GYNs who go in with this issue and they are ignored until they found out who they were. Why? Why does it take that?

Heather Guidone, BCPA (30:02)

Yeah, no, that's true. And you know, and then on the other side, I do see that too. A lot of times, you know, I'll hear from patients and they're like, well, so and so, doctor, blah, blah, or nurse, blah, blah, blah, or, you know, an academic colleague, blah, blah, blah, said, I should come to you. Like, you don't have to name drop, we believe you. But I understand why they do, because that's how they've been treated all along. It's hugely problematic.

Heather Guidone, BCPA (30:40)

And again, and there's so many intersectional layers there to peel away, but really it comes down to not believing women, right? And those born female, just, we don't believe you because you don't fit in the box and we're not going to fund the research because I would rather learn about men's testicles. So I'm going to fund that. We're not going to, we're not going to do anything for women. And in fact, we're going to poach women's research to take the money from them and put it over here to male dominant diseases. So we see it every day and it plays out in real life. I mean, it's not just this ethereal concept. It's playing out in real life outcomes on the daily.

Dr. Ginger Garner PT, DPT (31:07)

Absolutely, because if you look at what insurance is willing to cover or not, it plays out in healthcare, medical bankruptcies and accumulating massive amounts of debt just from the incorrect surgeries. I know how many surgeries I had and how much money would that be in my pocket, years saved, not losing work? That is an Oh my God, just like a full out what the hell, really.

Heather Guidone, BCPA (31:22)

100%. 100%. And it's true. If you had paid for one or two correct treatments and then some maintenance after care, how much money would you have saved Mr. Kaiser or Mrs. United Healthcare? I mean, it's ridiculous. My husband and I, it's not funny, but it's funny. My husband and I have a need for a similar drug. I'm just going to put it that way. He was written off that drug. Lickety split, lickety split. 

I, who has higher indications for it and more reasons and in whom it would be more effective, I am now in my fourth week of peer -to -peer reviews with my doctor, with my insurance company. I mean, that's just one example. That's just one tiny example. I mean, it's ridiculous. You know, I mean, and you know this and you've outed yourself as a patient. So you know that I have access to your care.

Dr. Ginger Garner PT, DPT (32:15)

Yeah.

Yep. Thank God. Yes.

Heather Guidone, BCPA (32:43)

But you know what we do in terms of peer to peers and the appeals we send out. I mean, I'm sending out 60 page appeals saying, I want to provide you with all of this evidence. I'm showing you what you could have saved if you will pay for this patient's care. Oh and by the way, if you're going to continue to deny it, I want a copy of your medical director's volume list case file. I want it all because you're not going to tell us what we can do for this patient when it is in their best and most economic interest. But it falls on deaf ears so often, as you know.

Dr. Ginger Garner PT, DPT (33:21)

Yeah, absolutely. It's why, you know, I ended up leaving the insurance system in 2004. Some listeners will know and many want, that's a long time ago, that's 20 years ago that I left the system because treating women in chronic pain was consistently rejected. And once they rejected me working with them inside the insurance system, I couldn't see them. I couldn't do anything to help them.

Heather Guidone, BCPA (33:46)

Couldn't do it. Couldn't do it.

Dr. Ginger Garner PT, DPT (33:49)

So I had to leave in order to access them and then start an integrative practice where, you know, I had this little blending of physical therapy, but also a yoga studio for the community. So people who couldn't afford it could get in, you know, for like a flat low rate for, but you just have to get creative. And in order to reach, you know, these people, these women, and you mentioned your husband too. And I think that's important for, cause some women are gonna have support and some women are gonna feel so isolated going through this. 

How did you navigate like feeling support with or getting support from family and friends? Because I've had patients whose own husbands were like, I don't see what your problem is. Like, A, you know, this, our person, our friend, she doesn't have a problem. Like, why do you have a problem with painful sex or whatever it is?

Heather Guidone, BCPA (34:34)

Yeah. no, absolutely. the first, will say that I married a saint that I don't know. I just lucked out. But beyond that immediate circle, you know, there's been folks in my life who didn't understand, still don't understand, don't want to understand, understand and don't give a shit. So I've run the gamut of all of that and again, that's something that manifests itself in various ways. I keep my circle so, so small and so, so tight as a form of self-defense because it's one thing to have a doctor dismiss you and say, this is normal. You're overreacting, blah, blah, blah. But to have a parent do it or a brother or a sister or a family member or someone you trust and you thought you respected and thought valued you.

Dr. Ginger Garner PT, DPT (35:13)

Yeah. That's devastating.

Heather Guidone, BCPA (35:35)

It's very hurtful. and I think, I mean, the stories I could tell you from the patients that I've, talking thousands of patients over the course of three decades. The stories I could tell you would rip your heart out. And I'm sure you hear them too, you know. Fathers leaving the family and not paying for the daughter's surgery or treatment or care.

Wives whose partners or spouses left them because they were damaged goods, which by the way. I was also told once by a former flame, you know, which is like, take it out of source with that one. But I mean, these things wound you deeply and they manifest in different ways, even if you don't realize it. And I think you'll find so many of us really become, you know. 

We really look for that loyalty and we really surround ourselves with people who we trust because anything beyond that is so harmful to our overall experience. And you know, it's, it's been a lesson a lot of times along the way. And I'm sure you've experienced this too. You know, I would almost rather the indifference than the vitriol. You know, well, my neighbor's, you know, lawnmower's man's wife doesn't have that or you know, this person at work has and no, and they're fine. 

Like it ain't a contest, you know, it, we're not, you know, we're, this is a relative experience. We're not, we're not in the running for the award of who is the sickest. Just hear me, just see me. so I'm always really super cautious about trying to see and hear others because I have not been seen or heard in many, many instances. and you don't forget that.

You don't forget that and you build your life around.

Dr. Ginger Garner PT, DPT (37:27)

Yeah, you do. And that also is an important... It's a moment that we can stop and say to the listener too, pain from endometriosis, again, can't be compared. But it is so widely variable. Painful breathing is one thing you mentioned. It was excruciating for me at some points. I'd be on the living room floor not able to take a breath. What is happening, right? Versus pain with digestion. You know, painful bowel and bladder emptying, the urgency of the bladder and that kind of thing, to back pain, to nerve pain, running down the back of your legs or even up into orofacial pain, migraines and all the things that can come with it. 

Yeah. So, you know, for providers not listening to that, taking all that in and considering this as a possibility, then it's time to find someone who listens.

Heather Guidone, BCPA (38:07)

.Absolutely. Absolutely. You know, you're not locked into anybody. I've had the same GP for 27 years because he too is a saint, but that's it. You know, I have gone through other specialists and other physicians like candy because I'm just not going to put up with it. I'm not going to put up with it. And I don't want anybody in my life to put up with it. 

But it's interesting while you were talking, I had a little thought, you know, in terms of, the difference in trust maybe based on gender, right? My husband would be the first person to say, do you need to go to the hospital? My God, no. Whereas to him, that's his gut reaction is sick, get help, go to the doctor, go to the hospital, go to the ER. And to me, that's like the worst place you could go. I mean, I would have to be carried out on a gurney for me to actually do that because there must be something very, very, very wrong.

Otherwise I'm just gonna suck it up because I know they're gonna hurt me worse. But for him, he can't conceive of that. Doctors are supposed to help you and that's been his experience. And that has not been my experience.

Dr. Ginger Garner PT, DPT (39:13)

Mm -hmm. Right. It is definitely a male privilege to be able to have not experienced that institutional betrayal. And I've had male patients who have it. They have experienced that in horrible ways, but it's usually an exception. Whereas, yeah, for us, you know, so, but for women, it is more of the norm. And yeah, when you said carried out in a gurney, I was like, well, yeah, that happened to me twice.

Heather Guidone, BCPA (39:38)

Yeah. Same. Same. Yeah. I was, I was in a car going home and then I was suddenly waking up in recovery without a gallbladder that I had told them multiple times is killing me, killing me, killing me. And it was killing me. And, by the way, you had endo on your gallbladder. And it's like, well, but I told you that six months ago. And now I don't even know where my purse is. I don't even know who you are. I'm in an emergency situation.

And for some people that's just inconceivable. For us it's like, okay, it's another day of the week. And that's so scary. It's so, so scary that we live that way.

Dr. Ginger Garner PT, DPT (40:26)

Yeah, I was gaslit for nearly two years telling them it was that the whole time to which they still didn't biopsy. So they took the gallbladder out, which was completely covered, paid no attention to that. It did not biopsy and then on I went to the next catastrophic thing that would put me in the hospital again.

Heather Guidone, BCPA (40:37)

Why? Why bother?

It's fine, right? It's normal. It's supposed to happen, right? Crazy. It's insane. Insane what we put up with.

Dr. Ginger Garner PT, DPT (40:55)

Yeah. So let's jump from, you know, what the reality is because I want the listener to appreciate that the symptoms can be wide and varied. There are providers out there to help. We will have the websites in the description and the show notes and the links there for you. So you don't have to worry because there's help out there. Heather, describe for me the moment that you, when you got that help and you got that diagnosis, what was the sense of like, was it relief? Was it like vindication? Like what was it?

Heather Guidone, BCPA (42:01)

D - All of the above. The first thing, nd I have to credit Dave Redwine, rest in peace with this. You know, he was one of the first people outside my regional circle to kind of say, yeah, hello. And who led me to Dave Redwine, was Nancy Peterson, so shout out to them both. And Redwine ultimately connected me to my surgeon, Dr. Alby. 

And just the contrast in, you know, I'm one of those people where it's like, well, I will oversell you on my symptoms so that you believe me, please believe me. And he was like, I believe you, it's fine. And that was like a foreign concept to me. And it was like, I have to get on a plane to get surgery? That was, you know, back then that was unheard of, but I did it. 

And just, you said something earlier, you know, just waking up, had horrible surgical pain, but I knew it was surgical pain. Whereas, you know, six hours earlier I had endopain and I could tell the difference for the first time in a long time, but being believed and the aftercare and seeing and living those results, it was really like a new lease on life. And that was kind of when I really recommitted myself to saying, okay, you know what? This is where I belong.

You know, I'm not going to dabble in endo support and advocacy. I'm going to do this all the time now. Because I just saw it from both sides and I see what's so very, very wrong on the other side and what could be, and, we need to shorten the time between the two. And so, you know, here I am growing old at my desk, still fighting, but I believe that there is a better way. And I believe that if we push enough, eventually we're gonna get that boulder up the hill and have it stay there.

Dr. Ginger Garner PT, DPT (43:31)

That is like the perfect segue, Heather, into what I was going to ask is, one, I think your response may be, my question is, you know, what advice would you give to others who are experiencing that gaslighting? I think we've kind of covered it, you know, in terms of check out the links in the show notes. You know, there is help. What changes would you like to see in the healthcare system to better support these women going through Endo?

Heather Guidone, BCPA (44:01)

We need so many changes. You know, and I don't want to be doom and gloom, right? I am a big proponent of praising publicly and criticizing privately, although I will criticize publicly if warranted. And I do want to say there's so many really good people working towards so many really good things. There's a lot of amazing organizations out there like the EndoCo, Endo Black, Endo Girls Blog, Endo Research Center. 

So many great ones, which I'm unfortunately forgetting to mention, but they're out there, amazing people working really hard, really selflessly to do things like develop employer friendly endometriosis plans. So in other words, you go to work and you don't have to explain yourself or lie about why you're calling in sick. It's a more supportive environment. They accommodate you. They provide services, things like that. 

We need to see more endometriosis friendly employers. We need to see more, as I said earlier, more inclusion. When you're studying the disease, you have to study all the people with the disease. No matter how they present or what you think this disease looks like, I assure you, you're wrong. I assure you there is someone out there who doesn't meet your little box idea of endometriosis. So you really need to be inclusive. And we are seeing more of that.

I think there's been a lot more acknowledgement, not nearly enough of making an inclusive safe space for all bodies with the disease. We need to see more of that. But importantly, I think this really starts at the research, at the bench level, right? I mean, we've talked about bedside and the lack there of. You we've talked about things that were, well, you know, the things that we're doing at the beltway level in terms of policy change, and those are not mutually exclusive.

Dr. Ginger Garner PT, DPT (45:38)

Yeah.

Heather Guidone, BCPA (45:49)

They really are linked, you know, research leads to better knowledge, better knowledge leads to better policies. And we are really working very hard on a lot of those initiatives. So there's a lot of good things going on. We need to see more of it. We need to throw away way, way more money at it. You know, I would like to see, you know, that 50 million a year that we're asking for through the Endo Cares Act over the course of five years, that has to get done. We need that.

Dr. Ginger Garner PT, DPT (46:05)

Yes.

Mm -hmm.

Heather Guidone, BCPA (46:18)

But it's not enough just to throw money at the cause, right? And what I mean by that is you can't just say, we gave ex-researcher $3 million. Well, that researcher has already had $27 million and they are no closer to any answers. So let's fund the new people with the new fresh innovative ideas, make sure we're funding the right research towards translational benefit, things that are going to fix people's lives in the here and now.

I'm not that interested in funding the old guard, when I know that there are new up and coming researchers who are really thinking outside the box. If you have a very fresh perspective, those are the people we need to see more grant applications for because that's where the answers are. You know, stop showing me your mouse, stop showing me your endometrium on a slide. You haven't advanced the disease doing those things. Talk to me about your genomics.

Talk to me about your social science efforts. I wanna see all of those things come together. And there are so many great people working in that space right now. And I'm here for it. I'm gonna cheerlead them all the way to the finish line because that's what we need. But we also need better support right this instant, right now, immediately for people living with this disease. We have to stop telling them, if you get pregnant, if you get a hysterectomy, if you get a nephorectomy, if you hit menopause, you'll be fine. We have to stop telling people, that the earth is flat and this is a menstrual disease. 

It's not, menstrual pain is a part of endometriosis. It is not endometriosis. So, you we have to really acknowledge and respect that not everybody presents like you or I. Maybe somebody has great periods. Maybe they are the tampon commercial and they're dancing through the field. Maybe their issue is gastrointestinal. Maybe their issue is fertility.

Dr. Ginger Garner PT, DPT (47:45)

Mm-hm.

Maybe their issue is the inability to urinate properly because they have such dysfunction. Maybe their problem is leg pain. There are so many broad and wide and deep manifestations of the disease and they all deserve to be supported.

Dr. Ginger Garner PT, DPT (48:30)

Yeah, and that is, you know, I had a question for a final last question for you, but I already know the answer. It's like, what sustains your hope and resilience? That, the promise of research, the promise of support, the promise of care, and the manifestation of it, what we're seeing right now in those organizations and people out there doing the work. So all of y 'all listening, I want you to make sure you look at the show notes because we are going to include those links of where to get that support, find that help, rally, never be medically gaslit again. 

The moment that I woke up from my surgery was the end of the medical gaslighting and such a radical vindication of the decades of what I had suffered through. And for both Heather and I, know that I think I can speak for both of us.

We would like to see those decades and that 10 years, that seven years, all of that shrunk down so that no one, no woman has to wait for as long as you and I did.

Heather Guidone, BCPA (49:28)

Yes. Absolutely. You know, and the one thing that really inspires me time and again and again, because I've seen, how it has evolved the patients, they are not objects of change. They are the drivers of change. So when someone presents to you and tells you, have this, I experienced that, I feel like this, believe them and listen to them because they're the ones that are putting their bodies literally and figuratively on the line to make sure that the person behind them doesn't go through what they did. It is the credit of the patient community largely. So get in line behind them.

Dr. Ginger Garner PT, DPT (50:07)

Yeah, absolutely. We get to stand on the shoulders of everyone that came before to build something that's better. Thank you so much for joining me today. This is like a major highlight of my year actually. It is. It is and I can't wait to, I'm gonna do a Southern, can't wait to hug your neck when I see you next time.

Heather Guidone, BCPA (50:13)

Absolutely. Absolutely. Thank you.

No, no, I'm the bigger fan. I'm the bigger fan, trust me.

Absolutely, that's right. That's right. I'm a New Yorker at heart, but I'll take a hug a neck anytime.

Dr. Ginger Garner PT, DPT (50:41)

All right. All right. Thank you so much again.

Heather Guidone, BCPA (50:44)

Thank