Fempower Health

Endometriosis: Lessons from a Patient and Advocate | Melissa Boudreau

March 08, 2021 Georgie Kovacs / Melissa Boudreau Season 2 Episode 7
Fempower Health
Endometriosis: Lessons from a Patient and Advocate | Melissa Boudreau
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Fempower Health
Endometriosis: Lessons from a Patient and Advocate | Melissa Boudreau
Mar 08, 2021 Season 2 Episode 7
Georgie Kovacs / Melissa Boudreau

Endometriosis impacts 1 in 10 women and takes an average of 7-10 years to diagnose.  Given it is Endometriosis Awareness Month, I thought this was the perfect time to hear from Melissa Boudreau.

As an advocate for women’s health, Melissa Boudreau,  uses her free time to increase awareness about endometriosis, through her podcast, The Cycle

Melissa shares:

  • Her endometriosis story
  • Suggestions for finding the right doctor for you
  • Themes she's learned through her advocacy work and podcast
  • Tools to support you in your journey

If you liked this episode and you're feeling generous, don't forget to leave a review on iTunes!

Check out the following  referenced in the podcast:

And be sure to:

  • Follow Fempower Health on Instagram for updates and tips.
  • Subscribe to the podcast and tell your friends!
  • Shop the Fempower Health store, which has many products discussed on the podcast.

Sponsors:

  • ReceptivaDx the sponsor of all of Season 2.  Provide code FEMPOWER-HEALTH for $75 off.

More About Melissa Boudreau

Melissa Boudreau grew up in Detroit, MI, and is a lover of Detroit, the Caribbean, NYC, and Michigan. She holds a Bachelor of Arts in Business Administration and Management from Ashford University and a Master of Arts in Public Relations, Advertising, and Applied Communications from Michigan State University. Melissa is considered an expert in social media marketing, print media and certified in YouTube and Google AdWords through the Michigan State New Media Driver’s License.

Melissa and her husband, Bryan, reside in Royal Oak, MI, and together enjoy traveling, Detroit Lions football, and of course, going to the movies.

In 2017, she launched a protein bar; It Fits bar, after she struggled to find one that met her needs. 

Support the show (https://www.patreon.com/fempowerhealth)

Show Notes Transcript

Endometriosis impacts 1 in 10 women and takes an average of 7-10 years to diagnose.  Given it is Endometriosis Awareness Month, I thought this was the perfect time to hear from Melissa Boudreau.

As an advocate for women’s health, Melissa Boudreau,  uses her free time to increase awareness about endometriosis, through her podcast, The Cycle

Melissa shares:

  • Her endometriosis story
  • Suggestions for finding the right doctor for you
  • Themes she's learned through her advocacy work and podcast
  • Tools to support you in your journey

If you liked this episode and you're feeling generous, don't forget to leave a review on iTunes!

Check out the following  referenced in the podcast:

And be sure to:

  • Follow Fempower Health on Instagram for updates and tips.
  • Subscribe to the podcast and tell your friends!
  • Shop the Fempower Health store, which has many products discussed on the podcast.

Sponsors:

  • ReceptivaDx the sponsor of all of Season 2.  Provide code FEMPOWER-HEALTH for $75 off.

More About Melissa Boudreau

Melissa Boudreau grew up in Detroit, MI, and is a lover of Detroit, the Caribbean, NYC, and Michigan. She holds a Bachelor of Arts in Business Administration and Management from Ashford University and a Master of Arts in Public Relations, Advertising, and Applied Communications from Michigan State University. Melissa is considered an expert in social media marketing, print media and certified in YouTube and Google AdWords through the Michigan State New Media Driver’s License.

Melissa and her husband, Bryan, reside in Royal Oak, MI, and together enjoy traveling, Detroit Lions football, and of course, going to the movies.

In 2017, she launched a protein bar; It Fits bar, after she struggled to find one that met her needs. 

Support the show (https://www.patreon.com/fempowerhealth)

Georgie Kovacs (2s):

Why is it that women spend years either grinning and bearing it or visiting doctor after doctor seeking answers, whether it be a diagnosis or treatment, given the limited data available on women's health and the lack of education we have about our own bodies, it is no wonder, this is the case. Welcome to the Fempower Health Podcast, which aims to change this narrative. I'm Georgie Kovacs, your host interviewing experts who provide you the answers you deserve, and perhaps didn't even know you needed. So listen, learn and share. 


Melissa. I still remember meeting you at the 10th annual Endometriosis Foundation of America conference, where both doctors and patients talked about endometriosis and it was incredibly eye opening and definitely memorable meeting you and hearing your story.


Georgie Kovacs (55s):

I wanted to have you on the podcast today because not only is it Endometriosis Awareness Month, but it's definitely a topic that women want to discuss because today my interview with Dr. Seckin is still the number one downloaded episode. So it's definitely an important topic. And I wanted to speak to you specifically, because not only are you a patient, but you also host your podcast where many of your guests are patients, who've struggled with endometriosis. And so I thought it would be really important for my audience to get that patient perspective and hear from you the types of information you're learning from these women so that women can have that well-rounded perspective.


Georgie Kovacs (1m 37s):

So first let's talk about your story.


Melissa Boudreau (1m 41s):

Yeah, absolutely. And thank you so much for having me on the podcast. I really appreciate it. And you're doing such great work with all of the information you're putting out there. So thank you for doing that. And as far as endometriosis, you know, my story is pretty long. So I'm going to tell you the condensed very, you know, fast version of it. But honestly, I was in high school and I had very terrible killer cramps. I thought it was normal. I was told it was normal by my doctor. My grandma told me it was normal. She had it too. And when I say killer cramps, I don't mean like I took two Advil and I was okay. I would be rocking back and forth, full sweating, you know, diarrhea, just horrible.  Like I couldn't function.


Melissa Boudreau (2m 24s):

And that would happen to me from high school on probably like 15 years old and on, and some months were worse than others. And I thought it was just everybody that had that. I really thought that it was normal. And I told my gynecologist and she just said, patted me on the back and said, "You're one of those people who has painful cramps." So I kind of just learned to live with it. And I found a way to cope and manage the best I could with taking Advil and probably way too much or ibuprofen or anything I could get my hands on. And I, that's how I got, you know, all of the rest of school. And I would know like, okay, on these days I won't plan this.


Melissa Boudreau (3m 7s):

I started to plan my life around it. And when I light bulb really well on off, it was, I think it was like, after I'd graduated, I got invited to go on a boat and I happened to be on my period. And I was really nervous. And I was like, and I don't wear tampons. And I didn't know why I didn't wear tampons, but I was just like, ah, I don't really know. Like if they go swimming and someone's like, Oh, here it is. So like, what? This isn't a big deal for me. It was a big deal because I had a very heavy period and I was, you know, nervous. That's what I really want. I realized. And I looked at people and I was like, wait, use these all the time. And they're like, yeah. I'm like, well, it kind of hurts for me to use a tampon and people's faces that my friend's face we're like what? And that was kind of like my first light bulb, like, Hmm.


Melissa Boudreau (3m 47s):

So I guess everyone just doesn't have cramps as bad. So then into my twenties, you know, things we're getting worse. I have a lot more of those episodes. I'm going to work. I'm just living through it. I brought my heating pad to work sometimes, or I bought those things. You can stick in your underwear, like thermal and just really pressed through the pain all the time. But then in my early to mid, mid twenties, it got to the point where my stomach was upset all the time and I didn't know what was going on. And I was literally eating crackers and broth and thought this was like a normal, like for weeks losing all this weight. And I'm just like, La-lal-la, you know, life's okay. And then I passed out one day at work and yeah, I was a general manager of a retail store.


Melissa Boudreau (4m 29s):

So like, all my employees came like running over and I was like, okay, I need to go get this checked out.  So I made a doctor's appointment then ended up seeing a GYN again. I thought I had an ulcer. It was, my stomach was just upset all the time. I never correlated any of it because why would I? Because I never knew a disease like endometriosis existed because nobody told me. And so I had all the GI tests, upper GI, lower GI drink, the bear do all of these things. And it was a lot. And I remember sitting down with the doctor and he was like, you have IBS. And I knew like I was just annoyed. I was immediately annoyed because I, no, it wasn't that, like I knew something else was wrong.


Melissa Boudreau (5m 14s):

Like my gut knew.  So, I got home that night and I remember being like, I know I don't have IBS. I'm obviously a very determined person at this point. I'm going to figure this out. And I was Googling and this was in the early two thousands. So for the older people, you all know like Google wasn't as what it is today. It was not as robust. But I remember finding it must've been a white paper or something. I was just like IBS misdiagnosis, and I was just searching because they prescribed me like Nexium or, you know, one of them, those pills. And I saw something that said endometriosis is often missing, diagnosed as IBS. It must have been some sort of medical journal or something.


Melissa Boudreau (5m 56s):

And I was like, Hmm, what are the symptoms of endometriosis? And as soon as that came up, like, I have shows telling you this story. Now I was like, Oh my goodness, this is me.  And then I went to the bookstore and I tell this all the time when bookstores were still everywhere, I went to Borders when they still existed. And I went to like the medical section and I bought them shelf one book that said endometriosis on. And I remember just like opening this huge book and like crying on the floor because I knew what was wrong. And at that point I was almost excited. Cause I was like, I have my answer. I know what's wrong. This is great.


Melissa Boudreau (6m 36s):

But it wasn't great because then I called my OB GYN literally the next day and was like, I think I have this endometriosis, like, you know, I've had pain. I love her. I saw her for like 10 years. I was like, you know, have painful periods, you know, let's, let's investigate this. And she was like, okay, come in. I had an ultrasound on and a trans vaginal ultrasound. Of course I had cysts on both of my ovaries, no wonder I was in so much pain all the time and probably passing out, not able to eat. And she said, you know, we should do an exploratory surgery to see if you have it. And I said, okay. And she gave me birth control and sent me on my way. I ended up having this exploratory surgery and afterwards, like, quote unquote, she said, "I've never seen anything like that in my life.


Melissa Boudreau (7m 24s):

It's, it's all a mess in there. And I didn't really know what to do. I did my best." I have no idea what this even means. Like that's when I got diagnosed with endometriosis.


Georgie Kovacs (7m 35s):

Are you kidding me?


Melissa Boudreau (7m 36s):

No, that was literally the words. And I loved this doctor because I'd seen her from like my teen years into my young twenties and felt very comfortable with her. And I just remember being like, Oh, okay. Like what no plan. The plan was, we're going to take birth control continuously, which did help. And I do like, I've learned a lot more, like there is like, sometimes you might have to manage the disease if you can't get the right surgery or you can't afford to get the right surgery, but it's just a band-aid. And so I put the bandaid on aka taking birth control through my periods. So I didn't have a period and it did help, but I had just, I didn't tolerate it while I had bad side effects.


Melissa Boudreau (8m 18s):

We kept changing them to try and figure it out. I was a mess. Like my, and my stomach was a mess and my skin was a mess and I was emotional. And I was just like, I'm 23 years old. I'm supposed to be going to the bars with my friends and having fun and like enjoying life. And I feel like I'm on this roller coaster. So then I really started to dive in. I found a chat board, okay. This is before Facebook.  I’m really dating myself here. I think Facebook existed, but I was out of college. So like there was no “.edu” to get on. It found a chat board, found another person in Michigan who had endo and was like you to find this excision surgery. And I was like, okay, like, I'll figure it out.


Melissa Boudreau (9m 0s):

She's like, I just went to a place out of state. I can't find anyone in Michigan who really understands the disease. And I had a great experience. And I was like, all right, this is what I need to do. Like, I was so determined to, to like, feel better. And still at that point, I had no idea what I was dealing with. Like, I hope I'll get the next surgery and things will be fine. Like I was just so ignorant about it. And it wasn't my fault because there wasn't a lot of education about it. So I just didn't know the severity of it. I guess what I want to say. And the woman that I spoke to said I had this and I feel amazing. And I was like, okay, this is it. So I find the place, I send them my medical records.


Melissa Boudreau (9m 42s):

I have surgery there and you know, it's expensive to fly there. It was a lot. And that's a lot of the thing that people don't talk about too, but get it done. And the treatment there and the care and explanation about what the disease was and everything was incredible. It was. So it was just, it was a night and day experience; like you can't even compare it to the experience I had with my OB here, back in the day, they used to like spray your organs down so you wouldn't get adhesions. I have, of course, had a reaction to it, but we couldn't figure it out. We got home from this trip and I was covered in hives.


Melissa Boudreau (10m 22s):

Couldn't figure it out, went to the ER, of course the ER just said, you have a UTI, patted me on the back, sent me home. The next day I had so many hives. Like I couldn't move my hands and my joints were freezing up. So my whole body was being attacked. And I went to my family doctor who got out like literally a textbook, figured it out, got me on steroids. So not only am I recovering from this big surgery where I was diagnosed with stage four endometriosis, I then went down this crazy path of, I had to be on steroids for a month, but it all ended up being okay about a year later, I started to feel really sick again. And I was just like, what is going on?


Melissa Boudreau (11m 4s):

Like I thought that was my like end of the tunnel. Like what's going on? I called that doctor back. I said, this is what's going on. I don't know. Like, it's really bad. Like, I, I just, what is happening? And they said, come back, we're going to check things out. I told them about the hives. Everybody thought it was a reaction to like, we figured this out years later, the hives, by the way, come back. So that spray or whatever, because I had a reaction to it, it caused a crazy amount of adhesion. So they cleaned everything up. They said I had stage one endometriosis at that point, which was great, but there was still disease there a year later.


Melissa Boudreau (11m 44s):

Not that there's a cure, you can get it all or anything like that, but I still had disease. So then things were pretty good. I mean, I still had painful periods, like not as bad, but I still would be, you know, laying on the couch with a heating pad, going to work, functioning through life. And then I would have just some that were worse than others. And to back up a little bit, before I went on that trip, some of the research I found said, changing your diet. So immediately I cut out gluten and I did feel a lot better. I wanted to add that in. And then a couple years later I did get diagnosed with a dairy allergy. So now I don't eat dairy and gluten.


Melissa Boudreau (12m 24s):

At that point, I was kind of starting to go through that. And I ditched caffeine, which was super hard, but it did help with the like daily I was in at this point I was in pain daily. So it helps with the daily pain. And then the cycle pain was still bad anyway, fast forward. So now after surgery too, things are going okay, life's good. I'm local. And then I just start having a lot of pain again on one side, and end up having an eight centimeter cyst. Endometrioma on one of my ovaries, my left ovary found a local doctor here and was like, what are we gonna, we watched it for a while. What are we going to do? But once they get to a certain size between, like, I think it's eight or 10 centimeters, you it's really risky.


Melissa Boudreau (13m 9s):

Like you probably need to have it removed.  So we met with the doctor here to get it removed. He went in, it was very much like the first experience I had with my first doctor was like, I don't know what to do. Things are crazy. And there literally, it was a 15 minute surgery and my husband was terrified to tell me that when I woke up. And by the way, like I had just started dating my husband when I started going down this journey. Luckily enough, he still married me after all this gas, but we're still, he's still been such an amazing support, but I woke up, he was like, they didn't do anything. And I was like, we cannot keep traveling. We cannot afford to keep traveling out of state to get the care.


Melissa Boudreau (13m 52s):

And in Michigan there was no one that really understood the disease. So I went, I had a new OB GYN who understood, but was like, I won't touch it. I don't have enough experience, which I really respect. And she referred me to a fertility specialist and was like, go talk to him because we weren't trying to have children. And I think she was like, but he does know a little bit more about this disease. Please go talk to him. So I did. And he said, you know what? Like I do a little bit of excision, like, and we can get, we can get that cyst out. And I was like, cool, let's do it. So I had surgery with him. He said he did excision surgery. He did end up taking my left ovary and tube, which I did say if you have to, you can because I have another one.  And later down the road, like when I did get the operative report, it said ablation.


Melissa Boudreau (14m 44s):

So he wasn't unfortunately as skilled as I had thought. So now I'm on surgery for surgery for, yeah. It's five. That was five. And then I was good for like 10 years, which was, I mean, I still had painful cramps. I mean, there's no doubting that maybe it was like eight years, but I was functioning a lot better. I felt a lot better on a daily basis. I kind of like it a little bit. And you hear that often when people start to feel better, like I, you know, monthly reminders I would have, or like painful ovulation, but it was nothing like before where I literally was like crawling to the toilet. Like this was like, okay, if I stay in a constant cycle of ibuprofen, I can function.


Melissa Boudreau (15m 28s):

I can get through my day. It started to get really bad in the beginning of 2018 again, where I was just very nauseous all the time. I wasn't really paying attention to it. And I think sometimes as women, we do this, or I know I do this. Like I have all these things going on. I'm just so busy. And I, and I didn't notice. I actually was working with a trainer and I had to report like my food. And I was like, Oh, I didn't feel great today. And he was like, can you do me a favor? Can you start tracking for one month? How many days do you feel nauseous? Because I kept just being like, Oh, I didn't eat enough today. I found that. And I tracked, and it was like 70 or 80% of the month.


Melissa Boudreau (16m 11s):

And that was like a, I was like, okay, I something's going on again. And so I called the doctor that I had traveled to in the past. And he was like, you know, you can come down again. It's been so many years, this, this can happen. And I just didn't, I was very uneasy about it. My intuition was like, it just told me. And so then I decided I saw this patient day event that was going on in New York. I had free miles.  I was like, you know what, I'm going to go to New York to Patient Day. Like I just not because I need to care, but I wanted to learn more. And I wanted, I have a support group here in Michigan that I want to bring information back.


Melissa Boudreau (16m 54s):

Like, you know, I just, I need to educate myself even more about endo now,


Georgie Kovacs (16m 59s):

Now is this where we met or is this a previous year?


Melissa Boudreau (17m 2s):

2018. So, and I, and I went and I was just like, I knew no one, I was by myself and I was just like, whatever, like, I'm just going to attend this event. And, and didn't really chat with many people of course, like the night before I didn't feel good. So I was up all night, but once the event and just, I felt like I learned a lot more and I just, this is where I get like serendipitous about it, but I just felt like I was meant to be there. I went up to the particular doctor who was hosting this event, and I introduced myself. He asked me how I was feeling. I said not great. And I was going back for a work trip in May. And he said, come see me. I saw him, got an MRI. And it showed it actually didn't show too much endo, but based on my symptoms, like we knew something was, so then several months later I was too busy, busy at the time to schedule surgery.


Melissa Boudreau (17m 55s):

So I waited like six months until I was less busy at work, had the surgery. And I almost had a full bowel obstruction. Endometriosis had attacked my ileocecal valve, which was in between my small and large intestine, which is why I then at the time I had lost, I don't know, like 15 pounds because I was barely eating, but I was just like working, going to the, you know, just functioning, pretending like everything was great and woke up to part of my bowel removed and also just like full stage for endo back and it was everywhere.  I think it was a seven hour procedure and it was a really tough recovery that night.


Melissa Boudreau (18m 42s):

I think I was delusional from the amount of pain I was in, I think mostly from the bowle resection. And I woke up and my husband's like you had about resection. And I was like, and I was just so scared. Like, I didn't know what that meant. The part of the bowel that they removed on me. I did not have to have a colostomy. Like I did not have to have a colostomy bag. Thank goodness. And they were able to save my uterus, my ovary, my tube, which I was really happy about. That was my hardest recovery. I think it took eight months, like for me to be feeling almost a hundred percent and it was, it was really hard and just eating afterwards.


Melissa Boudreau (19m 23s):

It was, it was tough. It was a really, really tough recovery. And then starting in the beginning of 2020, or like the end of 2019, I just started having really bad pain shooting down my leg again and just wasn't feeling great. And I just, I knew something was wrong and my heart was broken about it because I just went through this heart surgery and I was like, you know what? Like, we've got it. I can't keep living like this. Like I just, every time I had a period, it was like, I was anxious, anxious about where I was going to be? What am I going to be doing? I used to travel like crazy for work. And I just remember being nauseous. And like, I was just like, I just can't live like this. So I called and was like, something is wrong.


Melissa Boudreau (20m 4s):

Like something's going on? Of course I had another big cyst and we decided, okay, we're going to do a surgery. And I made the decision to have a hysterectomy, even though adenomyosis was not like I was having every symptom of it, but it was not showing up on my MRI. So this in 2020, the end of 2020 crazily, very last minute, I decided to have another surgery because my MRI showed that my uterus was stuck to my colon. Again, it was hell or high water if I was going to have another bowel resection. So in one week during COVID my husband and I made a last minute decision to get it taken care of because we were afraid we wouldn't be able to travel.


Melissa Boudreau (20m 48s):

And this was like, when things were calmer and we just, we just did it. And we didn't know if I had adenomyosis, but obviously hysterectomy is not a cure for endo, but I was like this. If my uterus is going to keep getting stuck over to my bowel, this is a hard decision, but we're making it. And then once the pathology came back, I did have severe adenomyosis. So that made sense why I was still in pain after that last surgery. So now I'm about four months out from that surgery and I'm feeling a lot better. So I know that probably took way more time than it should have, but there's just, it's just a lot that has happened in the past 20 years.


Georgie Kovacs (21m 29s):

I'm like in tears.


Melissa Boudreau (21m 30s):

I know, I know I saw you and I was like, I'm not going to, but it's yeah, it's been a journey. I interviewed so many people.


Georgie Kovacs (21m 37s):

Well, and I don't know what it is about endo it's just..... And as I was listening to a couple of thoughts occur to me. One is, unfortunately your experience with endometriosis is not a unique one. Secondly, as I was listening, I was starting to feel a bit guilty because I am one of those who was diagnosed with silent endometriosis. And I didn't, you know, have obvious symptoms like the extreme pain that you're describing that you faced for so many years. But what's interesting is as I've been doing this podcast, what I'm realizing is I might've actually had milder symptoms, but I didn't even know those types of things weren't normal.


Georgie Kovacs (22m 25s):

So for example, when I was in high school, my mother used to constantly have to bring a change of pants because when I had my period, I would leak through. Now, I was never taken to a doctor. It was just presumed. I didn't know how to use a tampon or pad. And that was it. But as I'm listening to people on the podcast, I keep hearing these things and it's triggering various memories. And I'm like, wait a minute. Maybe those were signs, but it was something no one ever asked about. And it was something I didn't even think to notate in my life. Now, how long did it take you to get diagnosed?


Melissa Boudreau (23m 3s):

I mean, it probably started in paint at 15. I think I was 23. By the time I got diagnosed. So the average is seven to 10 years. So I'm right in there.


Georgie Kovacs (23m 11s):

And now I'm hearing, it takes 11 years on average to get diagnosed. Yeah.


Melissa Boudreau (23m 17s):

I think it's an average. Some people it's 20 years, some people, you know, and then some people it's one year. I just, it depends on who your doctor is or if someone in your family maybe had it and then they say, wait, wait, wait, you need to ask about this. Nobody said that to me because they didn't know.


Georgie Kovacs (23m 36s):

Let's take a moment to hear from our sponsor. And I'd like to thank our sponsor ReceptivaDx. It's a diagnostic test that can help women with unexplained, fertility, IVF failure, women with limited embryo reserves, women with recurrent pregnancy loss and those who can't afford IVF or who have limited fertility coverage and the test texts inflammation in the uterine lining a sign of previously undetected, endometriosis. And you can get the test at one of the over 300 centers that offer the test as well as even ordering a collection kit for future testing at your local OB GYN, you could download their app or check out the website for all the details and you can also get $75 off the diagnostic test by giving them the code FEMPOWER-HEALTH.


Georgie Kovacs (24m 23s):

So if you or anyone, you know, is going through these challenges, definitely check out the ReceptivaDx test. Admittedly, I wish it were around when I was going through my four years of infertility. So thank you ReceptivaDx. 


And now let's get back to the episode. 


I had actually attended that conference the day before patient day, where the doctors were speaking. And I remember being extremely triggered because as the experts were revealing, all of these nuances around endometriosis and how hard it is to understand the disease, what also became clear is there's really only about one to 200 experts in the entire country who are truly qualified to do the laparoscopic surgery effectively - 100 to 200 in the world.


Georgie Kovacs (25m 7s):

I couldn't believe it. I'm listening to them. And I felt like there was this secret society of doctors that were in on what's really going on behind the scenes. And all the rest of us were just suffering along the way. And it was incredibly triggering. And I remember then a doctor that I had interviewed on my podcast. She was talking about uterine fibroids and she's a minimally invasive surgeon. And she was telling me that the way she learned about her body wasn't even in medical school, it was either in her residency or fellowship. And she was listening to various patients talking about their bodies and their periods. And as she was listening, she said to herself, "Hold on a minute.


Georgie Kovacs (25m 51s):

My periods aren't what they're supposed to be." And she's a doctor learning this information. And you know, I just think it's ridiculous how hard it is for us women to understand these conditions that are impacting us and being able to seek the right help.


Melissa Boudreau (26m 5s):

Yeah. It's systemic. I say it all the time because not only were the people before us not educated about it. So they all thought it was normal. So they're telling us it's normal. So we think it's normal. The doctors think it's normal. Like, so how are you ever supposed to figure out what's wrong with you when everyone just tells you, you're just one of those people. It's not like it's, it is. And it's not even just painful cramps. Like I talk to people all the time, lung collapses, these are severe cases. I don't want to scare anyone because there are some people that have one surgery and they're better for the rest of their life. That happens.


Melissa Boudreau (26m 45s):

But there's also lung collapse. There's obstructions, there's bladder issues where people have to use catheters for six months. I mean, it is a severe disease. It's not taken seriously. It is by the, like you said, the a hundred people in the room. It is, but globally, it's not.


Georgie Kovacs (27m 3s):

Now while this data is not released. I have been hearing from various experts that they are thinking that it could be a 70% rate of women who have endometriosis. But the problem is, you know, especially back in the day, the only way to know for sure that you had endometriosis is through laparoscopic surgery. Now, I don't think we're going to be ever in a situation where a woman comes in with pain and we're saying to her, Oh, well, why don't we just get surgery and see if it's endometriosis, it's not realistic. It's just not how it works.


Melissa Boudreau (27m 39s):

I mean, think about the people who don't have access to care. No, it's come so far. Like when I think of it, like, it feels very overwhelming, but when I look back and where it is now, at least people know what the word means. Yeah. I mean, I know it's minimal.


Georgie Kovacs (27m 56s):

Well, thank goodness for social media. Because when I started my journey over a decade ago, there was really nothing about endometriosis on social media. And now it's everywhere. Now on the flip side, you know, women do have to be careful about the type of advice being given, because it's not necessarily doctors in all cases who are providing the guidance. However, one of the things that many have also said, though, is women do tend to become the experts of endometriosis because we're living with it every single day. And we understand it and we're talking to each other and you know, not every doctor sees only endo patients. And so we do tend to become experts.


Georgie Kovacs (28m 37s):

However, I do want to qualify. You're not a doctor, I'm not a doctor, but recognizing that you have spoken to so many women, I'm curious if there are, you know, themes or tips that you want to be able to provide women who are struggling with endometriosis.


Melissa Boudreau (28m 56s):

Number one, what I tell people all the time, trust your gut. It never steers you wrong. You go into a doctor and they tell you you're fine, but you're still experiencing pain and you know, something's wrong. Bye. Bye, Felicia. Find another doctor. And I know that that's hard. And I know that everybody does not have access to do that, but you have to keep fighting. You can't trust what you hear until someone actually listens to you. So find someone who will listen to you, who will listen to your pain, who will understand what you're going through. That's the first thing, second opinion, third opinion, fourth opinion. I will tell you. You said, what would I do differently? If I knew I would have found a specialist right away, I wouldn't even mess around with my normal OB GYN.


Melissa Boudreau (29m 42s):

I wouldn't like I would, I would just be like, okay, I need to find a special, where do I have to go to find a specialist to do this at such a young age? Because I do think that early diagnosis, and hopefully there'll be some sort of treatment plan. That's not surgery, but if you can get excision surgery younger, I do think it has a better outcome in the future. I don't know. I don't have the scientific data to prove that, but based on people that I've talked to, I've seen that become more successful in research obviously is such a huge part, but advocating for yourself as number one. And one of the things that you need to do is always keep a journal or diary or something of the pain every day.


Melissa Boudreau (30m 25s):

So you can go into your doctor armed because I didn't know to do that. So I'd go in and be like, Oh, I think it's this. And I kind of have pain here, but if I'm not going in serious and fighting, then they're not taking me seriously. You almost have to fight them for the right care. And so that's, you know, really advocating for yourself, educating yourself, get on to, you know, medical websites, go to Google scholar, start researching as much as you can. So you Google scholar at least send, you know, that this is like medical papers. So you know that it's accurate because you're right. There's so much stuff out there that's not accurate.


Georgie Kovacs (31m 2s):

It's still, how does one know? I remember interviewing Dr. Seckin last year. And one of the tips he gave was to ask your surgeon how many endometriosis surgeries they've had as one way to determine if they're the right type of experts. But how do you really know, what are the things that you're hearing from patients and how they're making these decisions?


Melissa Boudreau (31m 25s):

Yeah, I definitely think asking that, I mean, there are two places on Facebook where you can get a list that are patient generated lists. I just want to be very honest and specific about that because these are not like no one's criteria-ing them. So Nancy's Nook is a Facebook page where they have a, like a spreadsheet that you can download that lists doctors. And then there's another one called Endometropolis. And they have like a map with pins on it. And so you can scroll your, you know, where you live or in your area. Again, these are just from users. So they haven't gone through a process. There's also another website right now called I Care Better. And I think they're vetting doctors to ensure that they're skilled to do this type of surgery, but there is no official list.


Melissa Boudreau (32m 15s):

So that's some places that people can start, but yes, I agree asking them, see if they get uncomfortable too. How many endo surgeries do you do a year? Do you do excision? Do you use a robot? Like asking them technical questions like that to see if they'd get uncomfortable or if their ego comes out? That's one thing you'll see - the ego. If they don't want to answer the question, that means that they're not experienced enough and that's okay. And you can say, can you refer me to a specialist or do you know someone? I do not want ablation surgery. Is there another option? And I don't want to say, you know, there's a lot of people that get upset about ablation and I don't understand the differences, but I do know personally firsthand, I think I had three ablations out of all my surgeries and I never, I personally never felt better after, so.


Georgie Kovacs (33m 6s):

Okay. Got it. So to your point, there's only so much knowledge you have about it. Totally understand that, but the great debate is, you know, around robots or not ablation excision. And, you know, I've been really struggling to figure out how one can determine the best path forward for them. And I was wondering if maybe you had some perspective based on the people that you've been speaking with or your own experience.


Melissa Boudreau (33m 38s):

I honestly don't know where that comes from either. I think it's just people with personal opinions. I think the bottom line out of all of those things, the most important thing is to find out what's right for you and do your own research. So there's, no, I don't think there's any like secret or insider information personally. And what's recommended is excision surgery by, by everyone. That is the gold standard treatment for endometriosis.


Georgie Kovacs (34m 5s):

No, I agree with you getting diagnosed with endometriosis is magical. I know that's such a strange word, but I remember during my own journey I had had unexplained fertility and it was frustrating because I felt as though either the doctors weren't trying hard enough or science hadn't caught up yet to determine what was wrong with me. And eventually it turned out I did have endometriosis and I tell people that one of the happiest days of my life was being diagnosed with endometriosis. And of course, to top that my son being born was truly the happiest day of my life. But, you know, just having those years of not knowing what's wrong with you is incredibly frustrating.


Georgie Kovacs (34m 47s):

And now there's changes though, you know, ReceptivaDx. They have come out with a test that tests for BCL6. Now it's more for unexplained infertility and it's not a specific diagnostic for endometriosis is just an indication, but that's out. I know another thing that people have taken when they do get diagnosed is not just the laparoscopic surgery, but some are given Lupron or Orilissa. And I love to get your thoughts on that because, you know, I personally had a really bad experience with Lupron and I'm not saying because I had a bad experience, no woman should take it, but I'm just sharing that mine was not so positive, but I'm just curious what you're seeing with the women that you've been speaking to.


Melissa Boudreau (35m 30s):

So Lupron and Orilissa are two different things. One's like a pill, one's a shot. I've heard a few positive testimonials for, but most, I would say negative based on what I'm hearing for Orilissa recently, I've heard, I mean, only like five people, small sample size that are on it, and they're seeing success with it, but I've heard a lot of negative side effects from it too. And I think, you know, I'm not a doctor, but what I hear and the, you know, what's in the community is that the side effects are just not worth it. It's a band-aid. So having all of those side effects, isn't really gonna make the disease go away. Right.


Melissa Boudreau (36m 10s):

It's just kind of suppressing things. And then when you come off of it, are you going to just start feeling sick again? Right then, like in my, I mean, it's been offered to me. All of it's been offered to me and based on the research that I did, I said, no, because I said, why would I put a bandaid on something and just delay having surgery or delay feeling better for the six month period and have all these side effects. So for me, it didn't make sense to do it.


Georgie Kovacs (36m 38s):

And therein lies the problem and why it's so hard to separate the problem from the solution. Because as we were talking before, you know, there's getting the diagnosis and then there's the treatment, but right now the treatment is laparoscopic surgery. And if you take or Orilissa, it's not a permanent solution, but quite honestly, neither is the surgery because I was told that I had the surgery and then I was able to get pregnant soon after, but I was told that a certain time after I stopped breastfeeding, the endometriosis would likely come back. And if you're on an Orilissa or Lupron, you can only be on it for a certain period of time because of the risks, like bone density loss.


Georgie Kovacs (37m 22s):

So what exactly are women supposed to do?


Melissa Boudreau (37m 25s):

I don't think there's enough data to support things either way. You totally feel better. I just, I don't think there's enough data to support that. But then I think the problem lies with people who don't have the financial aspects to be able to get surgery or excision and, you know, should they do the Lupron? Should they do Orilissa? Or should they just stay on continuous birth control? I don't know the answers to those questions, but that is, that happens. Or, you know, I talked to a lot of people outside of the US who are in the UK and they have to wait years and Canada to see a specialist.


Melissa Boudreau (38m 5s):

And what do they do during that time period?  So I'm not saying yes or no to any of these things, but it's like not everyone has access to get excision, which is a whole nother bag of things to unclearly agree. And, but, so what do they do? Like, I don't know, what's the answer and I don't have that answer, but it's something that weighs on my heart every single day, because I know how fortunate and privileged I am to be able to have access to care.


Georgie Kovacs (38m 32s):

Right? No, I completely agree. Access to care is an incredibly complex and in a lot of cases, unfortunate topic when it comes to endometriosis. So first you have those who don't have insurance and are trying to have the ability to be able to pay for a laparoscopic surgery. If that is indeed the way to go forward, then there is, if you have insurance, does your insurance cover it? Because in a lot of cases, insurance may cover it only if you have severe pain. And like, in my case, I didn't have pain. And so it wouldn't have been covered in my case anyways, but then also, even if you do have insurance coverage, not all doctors take insurance. And then the last piece of this is the complexity around the surgery.


Georgie Kovacs (39m 16s):

As we learned during the conference where we both met Dr. Seckin and who I'd interviewed on the podcast, and a lot of his colleagues were talking about how you really do need a team of surgeons available because you don't know where the endometriosis is going to be. As a result, you need to have the experts on hand in case it's by your rectum or other body parts that aren't near where your uterus and ovaries are. I remember one of the doctors standing up and saying, you know, Oh, what privileged to be in New York City? You know, if you're in Missouri, we don't have access to those experts. And so this is really the reality that women are facing. And it's incredibly frustrating.


Georgie Kovacs (39m 56s):

I'd love for this podcast to conclude with, okay, ladies, here's the formula to 100% success when it comes to endometriosis. But the reality is so much more research needs to be done to understand this condition, diagnostic tools need to be developed drugs that don't have as many of the side effects that current existing drugs do have. But one thing I do understand, so whether you have access to care or not, or just trying to look at alternatives for being able to deal with endo. I know diet is something that we talk a lot about in the endometriosis community. And I'd love to get your thoughts because over the years I've been reading different articles and it seems like each one and over time, the interim information seems to be contradictory.


Georgie Kovacs (40m 42s):

So one of the consistent things I do here is not eating gluten and avoiding dairy as well. I've read, don't have red meat. I've read if you have grass fed red meat, that's okay. I've also heard controversy on soy. I've read no soy depends on the type of soy and it's incredibly confusing. So I'd love to get your perspective on what you've seen as to what works and how women should look at their diet when it comes to endometriosis. And again, I know you're not a nutritionist, but again, just from the community that you're so close to, it'd be great to get your perspective.


Melissa Boudreau (41m 18s):

It's overwhelming. It is so, and, and I think it changes like every week or depending on who's trying to feed you the information. My, what I've always done is moderation and keep a food diary. If you are feeling really, really sick and red meat does make you feel really icky than you shouldn't eat it, or maybe you eat it only once a week, but if you eat red meat all the time and you feel great, I don't know the data to say don't eat that right. I don't think there's one golden goose for the, for the answer to this. I know people say the anti-inflammatory diet, which I think you can Google, which I think is probably a very, very good way to start because you know, endo is an inflammatory disease.


Melissa Boudreau (42m 3s):

And so the more inflamed you are, the worst you're going to feel. So that's sometimes why people have this like really heavy chronic fatigue, because you're probably very, very inflamed from the disease. So I cut out gluten because it didn't make me feel good too. I noticed instantly how much better I felt. And I've actually had a couple of times where I accidentally ate it. Like, I'm not one of those people. People's like, Oh, I'll just have a loaf or slice of bread. I don't do that because there's been a few times where I've accidentally had something or came wrong and I ate it and I can tell, and I feel really sick. And so, and dairy I'm allergic to, and I don't eat red meat. That's just a personal preference, but I do eat chicken and I do eat fish.


Melissa Boudreau (42m 47s):

And I think it's really, this is the thing with endo that's. So just hard and frustrating is the whole thing is like testing and seeing what works for you, because it's not the same for everybody. I know people who eat cheese and have endo and drink milk and it doesn't affect them, but it might affect someone else. And that's, what's just really, really hard about this disease is that there's not one answer; it's literally different for every single person. I've talked to a ton of people on my podcast and it really, it affects everybody differently. The path is different for everyone. And so it's really hard. There's not one answer. And that requires a lot of time on the patient side of testing and figuring things out.


Melissa Boudreau (43m 33s):

And that's really hard.


Georgie Kovacs (43m 34s):

No, thank you. I appreciate your perspective on the diet and it is incredibly complex. One thing I will say is given how much is now on social media relative to when I saw my journey, you know, it's been great to create awareness. I think the thing to keep in mind though, is a one size fits all approach. Because one of the things that I've learned is really experimenting and understanding what works for your body. I've interviewed so many people on the podcast and my own very long journey. I even did my own experimentation when it really hit me, how much diet and customization of that diet has an impact.


Georgie Kovacs (44m 18s):

It was back when I did the AIP diet, Amy Raupp, who was on my podcast last year, wrote a book called Body Belief. And I went through her protocol. It was through that diet where, for example, one of the things noticed was I live with a baseline anxiety, which I do believe some of the endo patients do deal with. I didn't know my baseline until I went on this diet and it eventually disappeared. I've also learned that if I drink wine three days later, I can be grumpy, but I didn't learn this until I did the elimination diet. So for ladies, who've got endometriosis PCOS, you know, Hashimoto's and other thyroid conditions.


Georgie Kovacs (45m 1s):

I think it's really important to work with somebody and experiment around what works for you. And, you know, just because something worked on Facebook and Instagram for one person doesn't necessarily mean it's going to translate to you. It's really complex.


Melissa Boudreau (45m 18s):

But then you use the keyword though. They're fads, you know, ketos just Atkins, which was really popular years ago, you know, they come, they come full circle. So, I agree with it too. And look, I get it. You're in pain. You don't feel good. The last thing you want to do is now it's just, there's so many layers and there's so many steps to doing this, but if you can find one or two things that you could cut out that really really make you feel better, it makes a difference. Like you think I don't miss bread or like a donut, like, Oh my gosh, what I would give. And again, there's gluten-free versions. It's not.


Georgie Kovacs (45m 53s):

Well, I will tell you that this past weekend, my son and I ended up making gluten-free donuts, they were Apple cider and they were incredible. My friends, I shared it with them and they thought they were store bought and truly amazing. So I'll definitely share the recipe with you and maybe I'll even put it in the show notes.


Melissa Boudreau (46m 9s):

Oh my gosh. So I mean, I love, I love a good donut. Who doesn't? So yeah.


Georgie Kovacs (46m 16s):

Okay. So tell us about the It Fits Bar.


Melissa Boudreau (46m 19s):

Okay. So during this journey of not having dairy and gluten, I was also trying to get really fit and in shape. And I started to really increase my protein. I was eating hardly any protein, I didn't know any better and found that like a high protein diet, not only made me feel better, it helped lean my body out too, which was great. So I was on this cross country road trip with a friend and we kept stopping at places. And I was like, I literally can't eat anything at these, you know, 7 Eleven's or gas stations or whatever. I was like, I'm just going to make a protein bar, like a good one that tastes good and it's healthy. And you know, it was a long car drive. So we have a lot of time to think, and then it just kind of came to fruition. So now I have a vegan dairy, obviously dairy free and gluten free protein bar called It Fits Bar.


Melissa Boudreau (47m 4s):

If anyone wants to check it out, ItFitsBar.com or ItFitsBar on Instagram. And you know, we're local here and we're solely growing, but we have five flavors. And I really honestly, selfishly made it for myself. And, you know, people with diabetes are really enjoying it or Crohn's. So I tried to make it. So it was really clean, provided 15 grams of protein, which it has, but also it's just something good on the, obviously not as relevant during COVID, but you know, if you're on the go, it's just in your bag and you get hungry, you grab that instead of like a bag of chips or something. So that's why I made it.


Georgie Kovacs (47m 41s):

No, thank you, Melissa, for being on the podcast today and sharing your story and being vulnerable and for working with women to educate us about endometriosis through your podcast as well. I think it's those of us who've had these personal experiences and are driven to create change are truly a force to be reckoned with. And, and thank you again so much for your time and to my listeners out there. I'm sorry, I couldn't edit this down to 30 minutes. It was just such an incredible conversation. And I wanted to make sure you all had the ability to hear the incredible information Melissa had to share. So thanks again, everyone.


Georgie Kovacs (48m 28s):

Thank you for joining us. If you like what we discussed in today's Fempower Health Podcast, subscribe, rate, and review, and be sure to tell your friends the more we work together, the bigger the impact we can make on women's health.  Follow us on social at Fempower Health. And remember the information we discussed is not to be substituted as medical advice, always go to a trained professional of your choosing.