This Is Perimenopause

How Tinder Saved My Life with Cervical Cancer Survivor Rachel Bartholomew

Bespoke Productions Hub Season 2 Episode 10

Are you dealing with endometriosis, chronic pelvic pain or painful sex? Then tune into this candid, inspiring conversation with Rachel Bartholomew. Diagnosed with cervical cancer at just 28, Rachel's world was turned upside down. But she turned her experience into a company that is revolutionizing pelvic health care.

In this episode, you’ll discover:

  • The shock of a cervical cancer diagnosis at 28 and the importance of regular check-ups
  • Navigating the complexities of surgical menopause and its far-reaching effects
  • How a glass Pyrex tube became the catalyst for innovation in pelvic health
  • The birth of Hyivy and its game-changing device for pelvic health therapy
  • Why quality of life should be at the forefront of healthcare decisions
  • The power of self-advocacy in getting the care you deserve

Plus, Rachel offers hope and practical advice for women struggling with these conditions.

Links for this episode

Hyivy Health
Femtech Canada
Hyivy Health on Instagram
Femtech Canada on Instagram


What did you think of today's episode? We want to hear from you!

Thank you so much for listening to the show. Here is how you can connect with us at This Is Perimenopause.

Sign Up for our Newsletter
Instagram
Facebook
TikTok

Want more resources? We've got a ton! Visit our website

Rachael:

Okay, this is going to be a story. I will make it a very quick one. I was on a dating spree. I had connected with someone on Tinder. I had decided that I haven't been sexually active in a year and I need to be sexually active. I am good for you and next thing, you know, it was a blood bath. And so when I showed up to my doctor, I'm like I'm sitting on this table and you were looking in my vagina.

Mikelle:

Welcome to. This is Perimenopause, the podcast where we delve into the transformative journey of perimenopause and beyond. I'm one of your hosts.

Michelle:

Michelle, and I'm your other host, michelle, and we know firsthand how confusing, overwhelming and downright lonely this one of your hosts, michele, and I'm your other host, michelle, and we know firsthand how confusing, overwhelming and downright lonely this phase of life can be.

Mikelle:

Join us as we share real-life stories and expert advice to help you navigate this journey and advocate for your best health.

Michelle:

Today's guest turned a Tinder date and a terrifying diagnosis into a mission to revolutionize women's healthcare. Welcome Rachel Bartholomew, who, at 28, faced cervical cancer, surgical menopause and a host of pelvic health issues that opened her eyes to a major problem Women's health needs are not being met. If you're dealing with endometriosis, chronic pelvic pain or painful intercourse, then you'll want to hear what Rachel has to say. She's the creator of High IV Health, an innovative vaginal dilator designed to treat, track and support women suffering with vaginal and pelvic pain. Her story is as inspiring as it is informative, with practical tips for advocating for your best health. She also reminds us why putting women's health first is so important, and Rachel's impact goes far beyond vaginas. She's also the founder of Femtech Canada and Femtech Across Borders that connects innovators worldwide to address the gaps in women's health care.

Michelle:

This is a powerful conversation about resilience, innovation and empowerment. Let's get started. Welcome to the show, rachel. We're so happy to have you with us. Yeah, thanks for having me. We were talking a little bit before the show about your journey and your crazy surgical menopause story, wondering if you could share that with our listeners.

Rachael:

To start, yeah for sure. So I was working in the innovation ecosystem a bunch of different roles, kind of coming out of the entrepreneurship world with my first company not wanting to create another company, and I really failed miserably at that. But I was running an incubator at the time. You know, my term had come up and I was like, Okay, what's next? And it was interesting. Next thing, you know, I was experiencing some symptoms and you know just was like, okay, go to the doctor, check it out, see what's going on. Next thing, you know, I was diagnosed with cervical cancer and I was diagnosed at 28 years old, fully staged cancer. Wow, it was pretty shocking.

Rachael:

I've had so many different ailments in the past and have dealt with many medical mysteries and fun experiences and I say that with sarcasm, but I always felt like I was proactive with my health and I've done my pap smears and I've done everything right. And how can I go from, you know, a clean, clear pop smear to, like a year later, fully staged cancer? So it was an interesting journey. That was May of 2019. And all through May was fertility and all of these different discussions that kind of get thrown at you while you're also being told that you're dying, which was a very interesting journey probably for a different podcast or a different time, but essentially went through all of the scans, everything figured out where I was in the process and was on the operating table in June oh my God had an open abdominal radical hysterectomy with lymphadectomy and they transposed my ovaries.

Rachael:

Come to find out that your ovaries don't like to be moved, which fair and unfortunately found out that my pathology came back not so great and I had four of the five major risk factors for potential reoccurrence. And so you know, I was on a journey of starting subsequent treatment, which was 28 external beam radiation treatments in September. Radiation is the devil. I would never, ever want that upon anybody. I would have taken chemo 10 times over radiation, unfortunately, because it just wreaked havoc on my body and got thrown into menopause at still 28. At the time, I remember flying to New York to pitch my company's idea for the first time ever and I remember sitting on the plane and I didn't know what was happening. I thought it was like the cabin pressure or something was going on with the plane, but I just felt the like hot lava.

Michelle:

Your first hot flash. Oh, my God.

Rachael:

Yes, my first hot flash and I was like what's happening? Oh my God, Like I'm dying. The like plane pressurization could blow me up Like I don't know what's happening. I've never experienced it before and it was shocking, to say the least. And yeah, I think my body was in shock from October to December and then it was like, oh, here you go, here's surgical menopause. And so I started on my journey of going through surgical menopause, dealing with that for a couple years and now rebounding out of it slowly, which is also very strange, Knowing that my one ovary has completely disappeared into the ether. We call it like the rogue ovary. We have no idea where she went. The other one got partial radiation, so I call it my zombie ovary, but has somehow reinstated itself into working again and getting hormone production back up and running again. So she's kicking back up. She's had an oil change and we're going through it. So surgical menopause is very confusing and very interesting.

Michelle:

I've got so many questions I don't even know where to begin.

Mikelle:

Okay, I do too. Maybe you regroup a little bit Michelle Wow, rachel, that's a lot, holy shit.

Rachael:

I'm sorry.

Mikelle:

No, no, don't apologize. Fascinating.

Michelle:

Thank you for sharing Okay.

Mikelle:

First, your ovary disappeared Like literally. No one knows where the ovary went. Yes, like it exploded, it died. It moved to another part of your body, shriveled up All of the above, it is yeah.

Rachael:

So essentially, when you're, you transpose your ovaries which they do in cancer cases because, a they don't want your, they want to preserve the ovary if it hasn't been affected by cancer. A for fertility, which is a complete cop out because it doesn't actually work but, like in very, very few cases, it works. B to help prevent menopause and all these fun things that come along with early menopause and to prevent it if you do need to have subsequent treatments from getting affected. So they transpose it up into, like almost your hip bone area, which isn't fun because also what happens is they're clipping it up there and then you're potentially going through further treatment. It's getting exposed to that and what happens is it gets really angry. So I get ovarian cysts regularly because also those are painful. Yes, and it's an area where there's not a lot of room, so I can actually feel the cyst like through my skin.

Rachael:

But essentially what happened was they went to go do radiation and they say transposition normally doesn't like work the greatest. So my left one fell out of the clip, disappeared into the ether. They don't see it on scans. They say either it's like shriveled up, it's definitely got radiation. Your body probably either absorbed it or it's like it tucked into your bowel somewhere. Oh, I'm double G. Sometimes I get like a weird pain. I'm like oh my God, it's my ovary, my neck, we're just like. You have to joke about it, right, because it's just chaos.

Michelle:

That's insane and is 28,.

Rachael:

I'm sorry, I should know this, but is 28,? Is that young for cervical cancer or yeah, unfortunately it is. Yeah, usually it's around 50s that this happens. I did, unfortunately have a relapse with vulva cancer and lesions caused by the same thing cancer and lesions caused by the same thing different cancer. It's HPV related. It's a terrible, terrible virus. Get your vaccinations and get tested for HPV and try to do everything you can. It's still something it can be eradicated, but it's still something that's present today because of lack of know, lack of vaccine, participation, you know, access to care, all of these different things.

Michelle:

Can I ask you one more question about this? What were some of the symptoms? You said I was experiencing symptoms. I went to the doctor and I got diagnosed. What were some of these symptoms?

Rachael:

Okay, this is going to be a story. I will make it a very quick one. I was on a dating spree, quick one. I was on a dating spree. I had connected with someone on Tinder. I had decided that I haven't been sexually active in a year and I need to be sexually active. I am good for you. And next thing, you know, it was a bloodbath and it was like okay, I know, this isn't my period, it's also very fresh looking. I know how my period is. Um, this doesn't seem normal. Uh, it continued on for quite a while and kind of shocked me a little bit, but like I didn't really have pain, I didn't have, you know, I had fatigue when I was dealing with my own other, you know things. So I just kind of thought it was normal. But it was this constant, constant bleeding. And so when I showed up to my doctor and I've had some ins and outs with my doctor that have been a challenge I'm like I'm sitting on this table and you were looking in my vagina.

Rachael:

Good for you, girl, my vagina. Good for you, girl. Yeah, I'm not leaving until you look. And it was crazy because I had a tumor that was visibly you were visibly able to see it from, I believe it was, I think they said three o'clock to 12 o'clock, so it was almost my whole cervix that had been completely encased with this tumor and TMI. But when cancer or a tumor is touched or interacted with in any capacity, they're angry, so they shed and shed and shed and that's what the bleeding was. So if you do have any abnormal bleeding outside of your period, it's not normal.

Michelle:

Like go and see your doctor. You know, it's interesting when I went to start HRT one of the things I mentioned like I'm bleeding all the time and he's like whoa, whoa, wait what? And like immediate ultrasounds and internal ultrasounds and biopsies and things like that. But he was like very freaked out. Now I understand why. I didn't quite. I didn't quite get that then. Thank you.

Rachael:

Yeah, a hundred percent it's. It's a route to a lot of other things too. Like your cervix, is that gateway to your uterus, to your fallopian tubes, to your ovaries? And there's so much it can tell us right.

Mikelle:

So, rachel, you've that's a whole lot of lemons, and you've decided to make lemonade. Tell us how you're using this experience to revolutionize pelvic health, for sure.

Rachael:

So part of the process of going through radiation is you are told all these different things that you have to do. So I mean HRT is one of them, uh, intervaginal HRT and and elsewhere, um suppositories all of these fun things that help with the dryness and irritation, all the stuff that happens, uh, post radiation changes, and one of the changes is vaginal stenosis. So radiation is really great at producing a lot of scar tissue, and scar tissue unfortunately develops everywhere, including your vaginal vault, and so what ends up actually happening is that vault can essentially collapse in on itself and almost stricture to itself. It's scar tissue. That's like gluing, uh, the walls of your together, and so this is super painful, obviously, but makes it really complex when you think about you're going in for cervical cancer. You need to be, you need to check the end. I mean, I don't have a cervix anymore, I have a vaginal cuff, but you got to check that cuff for you know potential lesions and all these things. So if you have stenosis and these things developing, it essentially closes right up and you can't even do a pelvic exam.

Rachael:

So you know, my doctors go, you're going to get this lovely device. I'm like, ooh, device, what is it and they say go to the pharmacy and go grab it, Come to find out. It's a device I've used in the past. I've had some other issues around tight pelvic floor that I had to deal with when I was younger and come to find out I'm going to have to brush my dice dust off of that puppy and bring out this vaginal dilator. And this is something that they give at all of the pharmacies. But the baseline at these pharmacies is actually a glass Pyrex test tube that you would have to use intervaginally for five years as a post-cancer patient, every other day to essentially prevent the stenosis from developing.

Rachael:

I thought glass intervaginally was pretty inhumane. Scary, yes, and scary. Come to find out. It was created in 1938. Jesus. But this was the standard of care that's been adopted and the most innovation that we've done on this standard of care. And you know, not just cancer, I mean, I found it was post-surgery, it's endometriosis, it's anybody who deals with chronic pelvic pain, tight pelvic floor and tissue issues. In this area it hasn't changed. And so I said, okay, I'm an innovator, I can do some work on this and I just use my cancer treatments and my time in the community cancer communities gathering feedback from patients on what their experience has been with dilators. What the doctors are saying are a huge issue and that really unearthed. You know what now is high IV? Today, which is essentially a replacement for that vaginal dilator Amazing, Do you have one? Yes, which is essentially a replacement for that vaginal dilator.

Mikelle:

Amazing. Do you have one? Yes, oh, wow, okay, yeah, can you?

Rachael:

explain this. So high IV is essentially a system. It's the device is one piece of a larger system. Essentially, what it is is a device that conducts multiple therapies, but we also have a number of biosensors integrated into this. So what we're able to do is baseline you and track your progress through the therapeutics. That data gets sent to a mobile app. We then collect self-reported data and then we package all that data up and send that to your doctor.

Rachael:

So I like to say, think of it as a seat, like a CPAP machine, but for gynecology and pelvic floor. So we do hot and cold therapy, dilation with multiple dilation points using inflation. So it's very, very gentle. And we're integrating in drug delivery for things like HRT Cool. That then is monitored with an intervaginal temperature sensor. We have pressure sensors and we're working on a moisture sensor, and really it's really interesting because so much of our chronic you know, pain and chronic pelvic health condition populations haven't been researched. We're finding all sorts of crazy data. I mean, the therapeutics is one piece, but this biosensor piece is showing us so much cool data that's telling us and unlocking this kind of story for each patient on what's going on with their body, from their nervous system, to their hormones, to their cortisol, to you know what their muscles and their tissues are doing. So we're on this like 15 year journey of unlocking the data that is and what it's telling us in each of these patient populations.

Mikelle:

Well, thank God you are, because there's so little information about women's health, midlife health in particular so amazing For our listeners. We will post some video clips in so that you can see what this thing looks like. So if you're not already following us on Instagram or Facebook, please make sure you go check us out, follow us and check out these images, because this is something to behold. It's a little terrifying, I got to say, but I can't even way better than glass. Oh my God, yeah.

Michelle:

Can we, can we go back? I mean, I can imagine how this works, I think. Do you want me to walk you?

Rachael:

through it. Yeah, I would, please, please Sounds good. Yeah, so I mean everybody goes, what end goes in, and I always go. You can fit this end in Godspeed. You probably don't need this to fit in, right? Yeah, I mean it is unique and I think, think part of it and you can see I mean behind me some of the other.

Rachael:

You know shapes and forms and functions we've used over, you know the time, but essentially this is what's inserted in uh, this is about 98 percentile in terms of vaginal depth. When we apply heat, which is often the first therapy that we apply, think of it like a penis. Our vaginas expand and elongate, right, and so we wanted to make sure that therapy and the sensors can be covered throughout the entire vaginal vault as these therapies are applied. This is essentially facing you, so think of it like you're probably sitting here. It's inserted in the vagina. We've tapered this, so this actually is where your legs kind of wrap around and hold it and what's happening is this control panel is actually facing you. So if any of you have used sex toys before, god love them, but half the time you have no idea what buttons you're pressing because you can't see it right. You got legs, you got tummy, you got all sorts of things in the way. So we wanted to make sure that you could actually see what's going on, what stage you're at in the therapy, be able to control it, be able to emergency stop and do all of these different things.

Rachael:

So, yeah, that's the device in a nutshell and it's one size fits all. One size fits all. We allow customization for the therapies themselves. So you can see, there's kind of two spots where this dilation inflation happens. So from here to here and then from here to here For those who are shorter, have a vaginal cuff, have all these different conditions, you can only turn on one bladder. So it's actually very small. It's, maybe you know, the length of, maybe, my index finger, but yeah, it's essentially the smallest size of the dilation and dilators that are given to you, and we expand all the way up to the largest size.

Michelle:

Wow, and women are using this for five years. Well, I guess we're still going through FDA approval, but that's it depends.

Rachael:

So we have postpartum women who would use it actively for six months and maintenance afterwards. We have cancer patients that are, you know, five years of really active treatment. We've got menopause and endometriosis patients that are just use it as you need for a lifetime, right, it all really depends. And then we've got, you know, groups that we're working with, like gender affirmation surgery patients that have to use it every day for a lifetime to make sure that they can, you know, keep the structure of the surgery that they had in place.

Mikelle:

And it's important for them to understand that the genitourinary syndrome of menopause, used to be called vaginal atrophy, is very common and very real and you don't have to have had radiation or chemotherapy or surgical menopause to experience it. And in fact, I think the data says that approximately 80 to 85% of women will experience GSM, which is the acronym and it can lead to all kinds of things that, if left untreated, not just remain but will probably get worse and can even cause damage. So a tool like this will be innovative and life-changing for so many. I mean, I think isn't the stat? Three out of four women will experience pain during intercourse at some point in their lives? Like that's crazy, that's a lot of women.

Rachael:

Yeah, I mean it's. It's one in three women will deal with some sort of pelvic complication in her lifetime. And think about all the changes that we go through as women, from birth to death, right, like. We've got pre-menstruation and menstruation, learning about painful periods and all these different things. Early conditions like introducing endometriosis, vulvodynia, vaginismus Unfortunately, sexual trauma is a huge piece in that age range. Then we move into chronic conditions and managing fertility, and then pregnancy, post-pregnancy, and probably pregnancy and post-pregnancy a couple times right. Then we move into you get into your higher stakes chronic conditions and cancers and God forbid these things that happen later in life. And then the transition from perimenopause all the way to postmenopause, right. Those are a lot of changes. That's a lot of stuff going on and the effects that that wreaks on.

Rachael:

We're not just talking. You know our vagina. We're talking bone, we're talking tissue, we're talking fascia, we're talking muscle, we're talking in that area. We've also got two other organs on top of our gynecological infrastructure. We've got our bladder and our bowel right. These are all the things that make up this pelvic center, that a lot of changes and a lot of stuff's going on in. So, um, it's very complex in the medicine world. We're just starting to untap this. Um men, for any of the men listening, sorry, you're not off the hook either. You also have a pelvic floor, so you know. I think it's something that we're just starting to figure out.

Mikelle:

The complexities of it all. Well, and I think you know, medicine has also been very focused on anything in a woman's pelvis. They focus specifically on reproduction capability, and even that tweaked for me when you said they were preserving my ovaries from a fertility perspective. But that's just a cop-out, as you said I think those were the words you used and there's so much focus on making sure that a woman can have babies, but we don't consider all of the other things and important aspects of our makeup and why we have it and, probably most importantly, our quality of life.

Rachael:

Quality of life is one thing that I think is so overlooked. One thing that I think is so overlooked is so neglected in care and is not treated properly, and I think part of it has to do with how siloed our ecosystem is when it comes to healthcare. But the complexities of that, I mean even when you think about like surgical menopause or menopause in general, and we think about all the things that could happen in menopause, from osteoporosis to you know our gynecological conditions, to hot flashes, to our heart health, right, think about the practitioners that live in each of those buckets. They don't really talk to each other. They don't even live in the same universe, let's be honest. So it's so complex and I have more appreciation than ever before being post-cancer, being pushed out into the ether.

Rachael:

You go in for your year checkup. You get a scan that comes back with a complete rap sheet of a new diagnosis every single time, all because your body is trying to adapt to the crazy changes and stress it just went through and you come out the other side and you go. Did I make the right decision Because, unfortunately, I have to catheter to go to the bathroom now, right, I have all of these things that you know. I know doctors are there to, especially in the cancer sphere, are there to preserve your life and extend it as long as possible and prevent death, but at what cost? Right, and I think there needs to be serious consideration when we think about these things and make decisions on quality of life as a whole.

Rachael:

It's so strongly neglected into our sphere and I know there's this transition in the US to value-based care. Tell me what that means. Couldn't tell you. Are we doing that? I don't know. Are we preventative? Not really. We're more reactive as a healthcare system. So I don't know. I can, you can tell, I can rant on for hours about quality of life in healthcare.

Mikelle:

but yeah, Maybe we could switch gears. I have a couple of questions. So where are you at with the dilators? It's still. You're still working on FDA approval, Is that?

Rachael:

correct Yep. So still working on FDA, just recently got Health Canada for our clinical trials and investigational, so we're now in clinicals in endo and endometriosis and cancer, both colorectal and gynecological cancers. We've got about 12 other trials at various stages in breast cancer to menopause to overactive bladder and everything in between. Essentially, we are driving towards commercialization, right now unfortunately targeting the US, not in Canada, partially because our Canadian healthcare ecosystem is very challenging to get innovation adopted into. So and I mean part of my goal and my journey was to have this something that patients don't have to pay out of pocket and been unlocking our reimbursement pathway in the states and I think we figured it out and so that's going to be. The next stage is really deploying this.

Mikelle:

Amazing, and is this something? Will the dilator be something that needs to be prescribed, or will it just be something someone can purchase?

Rachael:

Prescribed and there was a very strong reason for that. Partially, we know with dilator therapy and the research that having the doctor at the realm of this and really pushing this forward with the patients and then monitoring those patients is so important.

Mikelle:

Right.

Rachael:

Part of it is having as much ownership on the patient to do what they need to do at home, but also the doctor to make sure that that patient is recovering and able to prevent a lot of these things that can happen post-surgery, post-cancer, all of these different conditions Wow.

Michelle:

Can I ask you because a bunch of our listeners many of our listeners are new moms and you mentioned that this is something that might be useful post-pregnancy what kind of symptoms would the women go to their doctor with to prescribe this?

Rachael:

interesting world because we've been told, you know you have a baby and maybe you have a couple and you go through and out the other end and next thing you know you're going to pee yourself, you're going to jump, you're going to pick up your baby and you're going to pee yourself and then eventually you're going to have prolapse and you're going to have all these things. Literally it is not that linear and I think there's so many things that happen in that process. C-sections, I mean you're cutting into the basic pelvic muscles, right? You're cutting into your reproductive organs and that causes a lot of havoc, right. That causes a lot of scar tissue. You have tearing. That could happen intervaginally. That tear I learned recently in Canada. Anyways, sometimes if they say you're going to have more babies, we're not going to go in and fix the tear, we're just going to leave it, you continue to have babies, and then we'll go in and surgically clean it all up once you're done. Wow, you think about that and you go. How painful when you think about scarring anywhere else in the body. It's immobile, it's painful, it's probably got some nerve ending issues. That's happening in our vaginally and around that area. Not nice, right? No, and sex is painful and how is that fair? Yes, exactly, and that's what we see right.

Rachael:

We see a lot of chronic pelvic pain issues postpartum and a lot of things that could have been prevented even if we were to go on a prevention program. Pre getting pregnant or going through kind of early pregnancy, they say go to your pelvic floor physio. It's the same sort of process here. So we can track Kegels, we can track strengthening. It's not our initial indication. Part of it is is helping with the recovery, especially when you have this kind of hypo-hypertonicity happening where you might have to strengthen some muscles but others might be overly tight or have damage postpartum. So these are the things that we're slowly starting to explore. France has done it amazingly. They cover pelvic floor physio pre and postpartum and they've proven that they can prevent things like prolapse and pelvic floor issues. So they're doing something right somewhere.

Michelle:

Yeah, just not here yet, yeah.

Mikelle:

Rachel, for the benefit of our listeners, could we review chronic pelvic pain, what it is, what some of the causes are. You know symptoms and maybe we'll also go into endometriosis, because I think, unless you've experienced it, most people probably don't have the facts, and that's probably useful the facts and that's probably useful.

Rachael:

Yeah for sure that's a can of worms to open up. Chronic pelvic pain is very, very, very complex. As I've kind of talked about, you've got this bull of all sorts of things going on that can contribute to all of this and you know, to be honest with you, it can be caused by other areas of the body that are radiating into that area. So it's not a a very consistent diagnosis and that's why a lot of people are starting to move into branching what chronic pelvic pain actually means. Persistent pelvic pain is one that comes up, but a lot of it is diagnosis specific. Right it's. Chronic pelvic pain is often a symptom as a result of something else that's going on, and through our research we found over 51 conditions that feed into chronic pelvic pain.

Rachael:

And when you think about once again what's happening in that pelvic bowl, you've got bone, right. You've got things like osteoporosis, hip injury, all of these different things that can feed into that. You've got muscle. You've got things like atrophic muscles, neuropathy and nerve damage. You've got tightness. It's like anywhere else in the body where you have muscle. Think about us sitting at the desk and our shoulders are going up to our earlobes. Do you go and work it out with a super heavy weight? No, you'd probably go for a massage to figure out how to relax it. Versus the opposite, you might have muscles that have been torn or stretched out that you have to go back and strengthen.

Rachael:

So you've got tissue that's going through atrophy, that's going through stenosis, that's going through scarring and different changes. It's thinning through menopause. And then you've got surrounding, um, you know organs, right. So you've got bladder conditions that can be impacting this urethral conditions, colon, anal problems, hemorrhoids, fissures, uh, for men it's prostate, right. Um, you've got all these nerve endings within your clitoris and your vulva, um, that are playing into this right. So it's very complex, like you've got everything going on in this area. And then you've got these specific conditions like endometriosis, where you know, essentially your endometrial tissue is growing outside of your uterus and going into your body and it's attaching itself to your bladder, your bowel, your abdominal wall, different structures and ligaments and these types of things, and we have no idea what causes it. We have no cure for it. So, oftentimes, women it takes about seven years to be diagnosed with endometriosis. 200 million women globally with this diagnosis, with the only current option is cutting them open and scraping out endometrial tissue that is slowly essentially choking organs, ligaments, all of these different things.

Michelle:

Sorry, is this not what I understand from a friend that's had it? It's extremely painful, it's excruciating and it takes seven years for it to be diagnosed.

Rachael:

Once again, there is no blood test for this. Does it show up in scans? Not unless you're a very highly trained individual in endometriosis who can actually read and understand those scans. And there's only a handful of them. We're working with one of them at McMaster, but he's closed his list. He cannot take on any more patients, so it's extremely challenging. There is no cure. It is something that patients have to deal with and they have to get on a list.

Rachael:

And often I mean now we're unearthing and unlocking the conspiracy theory that is women's health. Women are discredited for their pain. They go into their doctor and they say I've got this issue. Um, you know, first couple of meetings are probably go drink some wine, take an Advil, relax, do whatever, Right? Um, oh, it's, it's painful periods. I went through this early, early stage. It's painful periods. Um, you might have endometriosis. After I came back, you know an exponential amount of times, and then they ended up doing laparoscopic surgery and saying, nope, you don't have an endometriosis. But I had to go through surgery at 16 to figure out that it wasn't endometriosis. Wow, so these are the things that make it a very complex thing to treat, very complex thing to diagnose and unfortunately happens to women, who are often just neglected and not given the proper attention for their conditions.

Michelle:

Hmm.

Mikelle:

And is your dilator something that can help with this condition at some point in the evolution of it?

Rachael:

Yeah, so we um we are considered dilators, are considered a self-management tool, so it's very much focused on helping with these chronic pelvic pain problems that persist with endometriosis patients for as long as they they live in. Some say that think that endometriosis ends at menopause. Others say no, that's not correct. So we're still unlocking a lot of this, but this is a tool that endo patients can use. We're also in our clinical trial evaluating what the potential impact on things that could potentially be feeding endometriosis and the impact of our device on those conditions. So more to be explored.

Michelle:

This work you're doing is incredible. Thank you, oh my gosh.

Mikelle:

Question for you. You early on mentioned fully staged cancer, that you were diagnosed with fully staged cancer. What does that mean?

Rachael:

Yeah, so cervical cancer goes through a number of different you know changes in development. Over time. It starts out as small as some you know cell abnormal cell changes that then go into what they call kind of a precancerous stage, so SYN 1, 2, 3, I think it goes to 4. Don't quote me on that. And then you get into staging. So when there's a tumor present it's gone past abnormal cells and you actually need a full-blown treatment to remove it, versus kind of a watch and wait and see what happens, Because often what happens in abnormal cell changes is your body can fight it off. Unfortunately I have the worst immune system known to man, so I was unable to do that. But essentially I went into a clean pap smear all the way to stage 1B1 cancer pap smear, all the way to stage 1B1 cancer, and even with 1B1, I was still considered having to do surgery and having to do radiation.

Mikelle:

Wow, you are an incredible woman, rachel.

Michelle:

Wow, rachel, that was an incredibly tremendous amount of fabulous information, and thank you for coming on the show and sharing that in your story with our listeners. That was amazing. Before we let you go, we have one more question that we ask all of our guests what is the one thing you'd like everyone to know about their pelvic health?

Rachael:

That's a good question. I think I would say and I saw this on your show notes is this normal? And if you are experiencing anything, anything at all, from the smallest little twitch of a pain to full-blown issues, to abnormal bleeding, whatever it is, this is not normal. It may be common, but it is not normal, and I think this is something that every single one of us um, we got to pull our socks up. We got to not look at our doctors as authoritarian figures who tell us what to do.

Rachael:

You go in, you demand what you want and you stand up for yourself, because you know your body better than anybody else, and don't be afraid to ask for what you need and to say that something is wrong. And if you get a no, you go down the street to the next person. And if they give you no, then you go down the street to the next person and you go until you get the answer you're looking for, because no one should be discredited for what they're going through in their own health challenges, even if it is the smallest pain. It's not normal. It really is not normal.

Michelle:

We all need to lay on our doctor's beds and say I'm not leaving until you examine my vagina.

Rachael:

Heck, yes, words to live by. There you go.

Michelle:

I love it, rachel thank you so much for coming on the show. This has been amazing. Yeah, thank you, ladies, it's been awesome. Thanks so much for listening to the show. If you like what you hear, please take a moment to rate and subscribe to our podcast. When you do this, it helps to raise our podcast profile so more women can find us and get a little better understanding of what to expect in perimenopause.

Mikelle:

We also read all the reviews the good, the bad and the ugly, to help us continuously improve our show. We would love to hear from you. You can connect with us through the podcast, on social media or through our website. Our information, as well as links and details from our conversation today, can be found in the show notes. This podcast is for general information only. It's designed to educate, inspire and support you on your personal journey through perimenopause. The information and opinions on this podcast are not intended to be a substitution for primary care diagnosis or treatment. The information on this podcast does not replace professional healthcare advice. The use of the information discussed is at the sole discretion of the listener. If you are suffering from symptoms or have questions, please consult a qualified healthcare practitioner.

People on this episode