Deep Dive
Shownotes Transcript
Welcome to Chasing Life Podcast where we talk about fitness, running, career, and life tips to inspire you to live your best life. I'm your host Sarah Kane and I hope you enjoy today's episode.
Welcome to another episode of Chasing Life. This episode is a little bit different than the other topics that I typically cover, and that's because March is Endometriosis Awareness Month. This is a topic that is very close to my heart because I was diagnosed with endometriosis in the fall of 2011. What is endometriosis? According to WebMD, endometriosis is a common condition in women. It's chronic, painful, and often gets steadily worse.
Normally, the tissue that lines a woman's uterus known as the endometrium is found only in the uterus, but when a woman develops endometriosis, microscopic bits of this tissue escape from the uterus and grow on other organs such as the ovaries, the outer walls of the uterus, the fallopian tubes, the ligaments that support the uterus, the space between the uterus and the rectum, and the space between the uterus and the bladder. In rare conditions, it can also spread outside the abdomen and grow on other organs such as the lungs.
Just like the endometrium, the escaped tissue responds to the hormones estrogen and progesterone by thickening, and it may bleed every month. But because the escaped tissue is growing in other tissue, the blood it makes cannot escape.
This causes irritation to the surrounding tissue, which causes cysts, scars, and the fusing of body tissue. This can eventually bind the reproductive organs together and lead to infertility. Cases of endometriosis are classified as minimal, mild, moderate, and severe, depending on the size of the lesions and how deeply they reach into the other organs. They are also referred to as stage 1 through 5.
Endometriosis affects 3 to 10% of women of the reproductive age and 25 to 50% of infertile women. It affects about 40 to 80% of women suffering from pelvic pain. Most women are diagnosed in their 20s and it affects all races equally. Symptoms usually get better after menopause. The conversations that follow in this episode are very honest. Our hope is that by sharing our stories, other women will feel less alone. Thank you for listening.
And I'm 38 years old. And I will say that I'm, I guess you would call it an endometriosis thriver and survivor now. You know, my journey started when I first got my period. Over the years, they had started to grow more.
a little bit more and more painful, you know, and I just figured, oh, well, this is, this is part of it. This is part of the process. You know, once a month, we all have to, as women have to go through this and it's part of the journey. And then over time, my period started getting more and more painful. And then probably back around maybe like 2015 into 2016 and beyond my, my period started getting closer together. I would have a period or, or spotting, you know, every two and a half to three weeks.
And, you know, so it started to become a little bit
unpredictable. You know, that visitor every month was becoming a little unpredictable and kind of a disruptive house guest. You know, in this journey, you know, I was on the pill for quite a while. Pills kept me regulated. They kept me a little bit more stable, I guess you could say. So it was a little bit more predictable. And then after a while, the pills started getting a little more, I don't know if my, you know, my body chemistry started changing. I started reacting
differently to the pills and it turned out to make things a little bit worse. So I thought, okay, well, what if I stopped with the pills and started something else or another avenue to help in these cramps and regulation and the bleeding and the spotting that would happen sometimes in an unpredictable fashion. And so I started noticing them once I got off of the pill, I started noticing them becoming more and more unpredictable as
as pills and the hormones started to leave my body and then started being manipulated in other ways, you know, and I would have the monthly visitor, you know, Advil, ibuprofen, no matter what, none of it really touched the pain. And so as I was on this journey, I started going back and forth to different doctors. I started with my primary care and I was like, look, you know, is this...
Yeah.
what I'm feeling each month and what is, what is that like when I'm, if I can predict, you know, a flare up, if you will, coming on. And so I started maybe tracking that a little bit more and went back and forth between my primary care doctor to my gynecologist and back and forth. It went, it was almost, I felt like it was kind of a ping pong match as people use examples of a ping pong match. It's like, you're going back and forth because my OBGYN, um,
would be saying, okay, well, you know, maybe follow up with your gastrointestinal doctor. Maybe this is something gastro related or with stomach or the things that you're eating that are causing such pain in around your abdomen. Then I would make appointments with gastrointestinal specialists. And then I would get to the gastro doctor and they're like, well, you know, maybe you should check with your gynecologist again, just to make sure, you know, cause everything's so close together in that area. It's just, it's,
it's unpredictable, right? And so back and forth it went until finally I did another follow-up with my primary care. And it was just one of the doctors in the practice that happened to mention the
Have you thought about maybe this could be endometriosis? I'm like, endo what? You know, what do you mean? You know, what is that? And, you know, like I've heard of it, but I wasn't really familiar with all of the different symptoms that could come along. So, you know, in addition to these painful periods, some of the symptoms that I experienced included not only the bleeding and the spotting, but a lot of pain, cramping, you
Pain that would kind of bleed down my legs and go into my legs, lower back, but making it hard to move and really making exercise, even doing yoga. Sometimes the exercise and yoga would help, but mostly I wanted to just lay on the couch all day. You know, it was some days I would be doubled over in pain because I couldn't move because the pain was so intense.
And, you know, I was experiencing a lot of low energy. You know, I remember being tested for, you know, all the blood work, you know, let's test for your thyroid. Let's test for this. You know, what's going on? Vitamin D and all these, all the panels that they would go through. Lots of ultrasounds, not only the jelly on the belly ultrasound, but even the transvaginal ones. And I would joke, you know, for someone who's never had kids, you know, I've had more ultrasounds than this.
And then I cared to admit that, you know, my insurance company definitely was like, yep, yep. Why are you getting so many ultrasounds? But yeah, it was very, very painful. And so finally, it was around 2016, I found it through my primary care doctor. He mentioned, you know, let's look into this endometriosis thing. And a lot of the symptoms you're mentioning that you've been experiencing for all this time seems painful.
Very similar to endometriosis. And sure enough, with talking to more doctors, that is, you know, what it has been. So that my first procedure that I had with it, I found a specialist here in Virginia, here in Northern Virginia. And I ended up having a hysteroscopy and a laparoscopy, which was in the fall of 2016. It was basically, they went in, they scoped to look and remove any interuterine growth or adhesions and removed any cysts.
And the weeds, I say in air quotes, the endometriosis that was growing within that area. So they basically kind of cleared it all out, you know, not invasively. And then from there, you know, the recovery time was like maybe a couple weeks. I had a couple issues, you know, in my recovery process, maybe from just...
jumping back into activities a little too quickly. Who knows, right? But after a while, I thought, okay, well, this would, you know, this will take care of it. Here's the magic wand. You know, I got the surgery done and, you know, now everything will be just great. So I feel like this is a portion where it's like that meme, you know, how it started and how it's going. Because after that procedure, I noticed that
You know, I got relieved for a while, but over time, I started noticing that, you know, some of these symptoms were coming back, and then they were coming back in full force, you know? And I'm thinking to myself, well, God, like, I know, you know, the more I started researching after that doctor's visit when we discovered this endometriosis thing,
I did a ton of research and really just nerded out with my, you know, here's some similar symptoms here. What other women are experiencing here is, you know, well, this is very similar to, to my experience, you know, what does this mean? And so, um,
I started going through and revisiting probably a couple of years after this, maybe between 2017 into 2018. Again, it really started, you know, periods were getting closer together. The bleeding and spotting was happening. It was more unpredictable. And it got to the point where, you know, it was so unpredictable that I could count on one hand throughout the month.
how many good days I was having, you know, when the good day pain and it was so unpredictable, joking, like half jokingly, right? People would say, you know, we, you know, we lost a lot of really good men out there. I'm like, well, I lost a lot of great panties out there, you know, because it was so, it was, I would think I would get up, start my day, you know, working out, get to my commute, get to work. And then boom, out of nowhere, you know, you look down, it's like, oh,
Really, you know, like completely unexpected. And so over time, I went back to my specialist who had performed this hysteroscopy and laparoscopy for my endometriosis the first time. And I said, look, can this come back? I thought we got it all. And endometriosis, as we found out, you know, it does.
sometimes come back. Everybody's journey is different, but for me, what we started talking about was the idea of adenomyosis, which is basically there could be endometriosis outside that lining, but the adenomyosis occurs inside the uterus. The only way to really find out whether or not
you have it is to really just kind of slice you open and dive in and see, oh, yep, there it is. So I thought, well, that seems a little extreme, you know, let me find some other options to dive into and see if I can get some relief in other ways that are a little bit more natural, right? So
The possibility of maybe going back on the pill, other medications. There was the talk about maybe an IUD. I tried the NuvaRing before. I didn't try the IUD, but I tried some other means, medication-wise or female treatment-wise.
haven't really noticed a difference so I thought you know what let me let me go about this a little more a little more natural maybe the different foods I was eating or maybe I could adjust you know I was just doing tons of research so I went I started out vegetarian and then eventually vegan cutting out all meat and all dairy I noticed a difference a little bit and maybe it was just
from different hormones that are in certain foods. You know, I was trying everything, but ultimately I was still having a lot of pain. So the final strike, I guess you could say, or the last straw was, and this is after exhausting all options, there was the option down the path of having hysterectomy because that would be taking out the whole works that's giving you pain. You know, at the time I was 35 and I thought, well, I'm
I don't know, am I going to have kids? Am I not? This seems a little intense to be thinking about, right? This is a big decision to make when I wasn't really ready to make it. And so, you know, whatever decision I was going to make, a hysterectomy is final. You know, you can't put the parts back in once they're taken out. So over time, you know, I thought, you know, let me try it.
these different avenues. And so in the process of all these different avenues, I ended up having a hysterectomy. And that was my journey. You know, I was about a year ago, actually. So I was 37 and came to peace with it that, you know, the option of having children or not, I was...
happy and satisfied with my decision. I knew that this would be giving me the relief. And I know that I'm surrounded by many children in my life that keep me very happy and fulfilled nieces and nephews and you know, my, my friends, kids and stuff. So I became very comfortable being the crazy aunt, you know, so whether or not I was going to have kids was that became less and less a distraction and more of a, this is, this is the
For me and my body to do and nobody else's decision, but my own back in February of 2020, right before this pandemic started, I
had the hysterectomy done and, and I had the, um, everything removed except for my ovaries. So they took my uterus, my cervix and fallopian tubes. I still have my ovaries, so I'm not in menopause or anything at, at the moment and, and won't be hopefully for a while. My only regret now having experienced what it's like to, um,
live without pain and have more energy is not doing it sooner. And again, that's just me and my journey. That is not the journey for everyone, but that is the decision that made the most sense for finding the endometriosis. Again, that so much
less pain and no pain at all, I should say. And I just think about what I was starting to live with as in my own mind thinking it was normal that, oh, well, this is just the pain. Oh, the pain in between periods. And then it was pain even without the periods and then pain just really all the time. And that sort of became my new normal. And looking back on that
versus now. So you know really how it started and how it's going. Being a year and a couple weeks out from having the hysterectomy, I feel so much more relief. I don't even think about periods anymore. I forget that they're even a part of my life, you know, because I forgot. In fact, I even scheduled, this is kind of a, this is just typical Lindsay moment, I guess. I scheduled an annual pap smear. I was like, okay, well, you know, let me just check things out, how they're going. And I got into the office
Like, you know, Ms. Dial's cervix, like we actually don't need to do this. So it was just really funny that the things that going about day to day life that I kind of forget, I will never forget how I felt in that going through those moments and just feeling so, so lost. And just as I was researching, you know, figuring out, you know, is this is this even normal experiencing this?
And I really wanted to be a part of this, Sarah, like I mentioned, because being able to tell this story in hopes to have other women who may also be struggling relate to this
This story or other stories, I think, you know, when I was going through it and as I had been going through it, I was looking for that person. It's like, yes, that was my experience too. Okay, what did you do? What helped you? You know, and in the process, ultimately, it's really, you know, we have to find what helps us.
You know, what's best for our own body personally. And that's no one's decision to make, but our own. But in the process of doing that, there is comfort learning about others journeys as well and how we can relate and what those resources are that we can explore and go down other avenues that we may not think about because of other women's journeys. So in closing, you know, basically,
Being about a year out post-hysterectomy, I feel better than ever. You know, working out every day, having more energy. I'm not saying, you know, everybody get a hysterectomy, but I'm saying that this is, you know, at this point in my life, that's what made sense to me. And that's what helped for me.
you know, body and chemistry and, and symptoms I was having. And I'm just, I'm just very grateful to found this doctor that said, Hey, well, let's, let's explore this endometriosis path and ways we can cope with this.
and and here we are today so basically the journey hopefully I didn't miss relatable moments like as I'll share in my period in like five years I completely forget about it and it has made such an impact on me so like I forget about it and it makes a really big difference to live without pain absolutely yeah I love what you said Sarah about the impact that it has on our day-to-day lives what a huge impact it it has as far as
even just preventing us for it's really, you know, looking at quality of life. And what does that mean for us? You know, and yeah, it makes a huge impact. I'm glad that you've gotten relief too. So you don't get periods either at all. No, no, I'm on really low dose. Like, oh, like, when was your last period? What year is it? Yeah, one today. So yeah, a year ago. Yeah. Wow. And then they give me a strange look. And I'm like, you can find a way to
Yes. Live your life again. It's, it's a beautiful thing. Yeah. We forget, right. We forget how we're, you know, we're so used to that monthly visitor coming along and just creeping in or, you know, even more so like that unexpected house guest that doesn't leave, you know, you know, it's like, get out of here. I like how you put that. Yeah. Yeah.
Thank you for sharing your story. There's a quote that I like that says we're given our mountains to show others that they can be climbed. And I, so I hope that your story and the story of others that we're sharing today help to show other women. Yes, absolutely. Thank you so much. I love that quote. Oh my gosh. I'm going to, I'm going to have to write that down, be a part of this. And thank you so much again for having me and, and for having me share my story. I'm hoping that our,
Our journeys can definitely help. My name is Kelly. I'm 35 and I don't even know what age I started with endometriosis symptoms simply because I had no idea that it was abnormal to be having the symptoms that I was having. So I think my biggest symptom was like super hyperventilating.
heavy, excessive cramping. I do remember one day sticks out in my mind. I was in high school, probably like 11th grade. And I literally was super lightheaded and almost passed out because my cramps were so bad. I did make it down to the nurse, but that day just sticks out in my mind where, you know, like this is not normal. Something isn't right. And I talked to my mom and we went to the
the OBGYN. And at that time, they just put me on a birth control pill, thinking that it was, you know, just typical menstrual cramps that maybe a teenager was having trouble with. And as time went on, and I got older and more mature, I went to college, I was still having really bad cramping. And
even on the birth control pill. So it had not been so bad where I was going to pass out from the pain. It wasn't that bad, but it was still debilitating where I couldn't do my normal everyday things because I was in so much pain. And I talked to my doctor, which was kind of difficult because you don't want to sound like you're whining or complaining about your period, you know, like, oh, I have really bad cramps or, you
I just didn't know that it was abnormal. I just saw everybody, every woman dealt with that for a few days and then life just moved on. And actually during college, I was having intercourse and it was uncomfortable. It's another sign of endometriosis. And again, I didn't know it at the time. It was uncomfortable enough where I did bring it up to my doctor, like this is happening. And he was the one who actually put the pieces together. And he said, you know, I think
there might be something more going on. So we just did some preliminary testing and he said that he thought it was endometriosis.
And the only way to solve it or to fix it, it was fixable. So that was the good news. It did require a surgery. And at that time, it was my first surgery. So I was super nervous. I remember being with, he was my boyfriend at the time, but he's now my husband. And he went with me to the surgery along with my mom. And I was just so nervous. You know, you're getting ready for surgery. It's your first surgery. I remember I was in tears because I was scared.
scared. It was just the laparoscopic surgery. There was not even any stitches. It was super easy. It was just an in and out one day. And the recovery, I don't remember being a thing that was difficult or
to overcome. I maybe couldn't work out for a few days. So that was about the extent of it. But since then, I have been super lucky. I've not had that horrible cramping. I was able to have three children. I did not have any infertility issues. I know that's a really big concern with endometriosis. And my doctor did tell me about it. So when I
my husband and I were ready to have children, I had that in the back of my mind, like, oh, man, this, this could be difficult. But I really just want myself about ovulation and all the things, you know, how to get pregnant. So I just kind of followed those and then it happened to work out for me. That's a success story. I know that that's not everybody's story. But
really that minimally invasive surgery kind of changed my life. I really haven't had any issues with endometriosis since I had that. And I've had a normal life in terms of that after it. So that's kind of the extent of my story. It's,
I know I had talked to a few friends here and there about what I had gone through. And if you can help one person or, you know, have them ask more questions so that maybe they can get help too, then...
that, you know, you feel successful. Like my story helps someone else. Well, thank you for sharing that. And what I want to share with our listeners too, is that because of you met in college and I remember when you had your surgery and I came to visit you at your mom's house when you were recovering and you were telling me about what endometriosis was. And the little did I know that a few years later, I would be diagnosed with the same thing. And I remember reaching out to you when I was diagnosed to have the surgery and asking you questions. And so I'm
thankful one that we were friends in college because then I had someone that I actually knew that had a similar situation as me and so that your story helped me so know that yeah impacted that was a huge impact so it's a full circle moment for me to be able to bring you on here and share your story and after I finished up my interview with Kelly she flipped the script on me and I shared my story with her Sarah 33
My endometriosis story started when I was in high school. I remember I used to get really nauseous on my first day of my period. I would get some cramping. I would also be very fatigued. And I remember going to the doctor when I was about 16 years old and telling them, oh, I get sick and I'm tired and I get this cramping. And the doctor said,
Their solution was either one, put me on birth control or two, they gave me this little pill that was supposed to help with the nausea. And because I was 16, my mom came with me to the doctor's appointment and she didn't like the idea of me being on birth control so young. And because then I would be on it for a long time. Instead, I tried these little pills and they did help with the nausea. But the problem was they also just didn't
exacerbated my fatigue. So I would literally like fall asleep in class in high school. When I got to college, I would fall asleep in class there too. And I just realized I can't keep going through my days and like falling asleep in the middle of the day because I was so fatigued on the first day of my period. It was just really draining on me.
And I didn't end up with any heavy periods. My periods would maybe last five or six days. I didn't have spotting in between my periods. It wasn't until I was around 24 that I even started realizing that I had symptoms that were related to endometriosis. I remember the August of 2011 period.
I went to work and I was doubled over in pain so much that I couldn't even walk straight. That my coworkers were so concerned for my health. And I was like, I don't know where this came from. This is like kind of out of nowhere. I just thought it was cramping. So I took some Midol and that helped enough for me to get through my day. But I remember...
that I talked to my grandmother around that time. And she was like, that's not right. Like you should go to the doctor. Promise me that you'll go to the doctor. Okay, grandma, I'll go to the doctor. So I went to the doctor. This was maybe two or three days after the pain had subsided. And so when I get to the doctor, they're like pushing around on my abdomen. They're checking for appendicitis.
They're checking to make sure all my organs are in the right place and they're pushing around. They're like, does this hurt? Does this hurt? And I was like, no. Yeah. Okay. You're fine. Like you're, we're going to, we're going to send you home. And if the pain comes back, okay.
again, we'll send you for an ultrasound. I was like, okay. September, October, I had gone up to visit my friends and we had done a 5k race together. And after the 5k race, I was like, you know, this feels weird. I was like poking my left side where my ovaries were. And I was like, this really hurts. She's like, well, why are you poking yourself? I was like, well, I don't know, but it hurts when I quit for poking. She's like, well, stop doing that. I was like, I know, but like, I had this pain like a couple months ago. And she's like,
is it cyclical? Like, is it happening every couple of weeks? And I go, actually, yeah, it is. And she goes, you might have an ovarian cyst. And I was like, what is that? I had no clue this was even a thing. So yeah,
Because a couple months ago, the doctor said, well, if you're in pain again, come back and see me. So I went back to the doctor, went to the walk-in, and they did send me for an ultrasound. And when I had my first vaginal ultrasound, they discovered that I had a two and a half inch complicated cyst on my left ovary. They sent me to an OBGYN and said,
When I had an ultrasound done with that office and the doctor looked at it, it was like, you have stage four endometriosis. Like this is all over the place. I don't know why you weren't in here sooner. Like you must have a really high pain tolerance. Normally we could put women on birth control to help to curb this, but you're too far along. Like the only answer is a surgery. And so I went from one week just being completely fine to within like four days scheduling a surgery.
for 30 days later like that. Right after I scheduled the surgery, like I was really nervous. I just learned like you have endometriosis. I kind of dove into the rabbit hole of learning more about it and what it means and what the surgery would mean. And I have this cyst on my ovary. Does that mean I'm not going to be able to have kids or whatever?
So I went down this roller coaster of emotions of thinking like, okay, what's going to happen? And I finally, like after a couple of days of just thinking all of this, I came to peace with whatever's going to happen. It'll happen. If I end up having more parts taken out than needed, then that'll just be how things are going to go. Cause I was 24 years old at that time. And so I felt like I was really young and I had pictured having kids and
few days, but I kind of came to peace with it because with endometriosis, like even when they go in there, they don't really know how bad it is. They have a laparoscopic surgery. So it's like, I don't know how bad it's going to be. I remember Thanksgiving that year, my surgery was scheduled for November 30th. So Thanksgiving was late November that year. And I was
had a doubled over in pain day again, so much so that I couldn't even sit at the dinner table with my family. I had to go to the recliner and put a heating pad on. And I like could barely open my eyes because I was in so much pain. The only thing that got me through that I probably should have gone to the doctor that day like the only thing that got me through was knowing that I had a surgery in a couple days and the pain would soon be over.
So when I had my surgery, I was in the recovery room. The doctor came in and said it went really well, but it was pretty severe. It was all over your bowel. It was all over your ovaries. It cysts burst inside of you. So that's why you were in so much pain a few days beforehand.
So he's like, we went in and we cleaned all that up. And by the way, your appendix was inflamed as a result of all this stuff going on in there. So we took that out too. So that was my surgery and recovery time. I had it done on a Wednesday. And so I took the rest of the week off of work thinking I could get back to work by Monday.
I was still having trouble. I was like shuffling around walking, but I was still kind of in pain. Like if I twisted my torso, like right near my hip bones, because the incisions are above each of your hip bones and then your belly button and then low on your abdomen, right?
The left incision near my left hip kept bothering me and it kept like twisting. So I ended up going back to the doctor after like a week and they're like, yeah, you have a muscle knot there. And that happens when you're too thin that you feel everything like when your body is moved around. And so he gave me like a muscle relaxer and he's like, you got to massage that out and then it should be fine. But I remember that I...
So we got back to like walking a little bit more, walking upright more importantly, because it's in your abdomen. And then a few weeks later, I was able to start running again. And I remember when I
ran my first like two miles after the surgery. It was about four weeks after I felt like I'd won a gold medal. Like I was so excited to be able to start moving again because when I was in pain or I would try to run, like I would just end up with these really bad side stitches, but it turns out it was just because the endometrium had grown so much inside the
of my abdominal cavity. Like every time I would twist and move and run, it was just all like rubbing together. So it was like giant friction inside there. And so that's why I was in pain when I would run. So when I could run pain free again, I was like, this is the greatest thing ever. Five months after my surgery, I was able to complete my first half marathon. So that's my success story in that sense.
But the first year after my surgery wasn't easy for me. I was on six different birth controls until I found the right one for me. I was very emotional because of the hormones from the birth control. And so that was really hard on me because I'm like, this isn't like who I am. It took until about a year after my surgery that I just was struggling emotionally. I was struggling with my job. I just felt like things were not right and that things weren't, couldn't,
get better. And I was like, I had the surgery, it's supposed to make things better. And it made my body better, but it didn't make my mind better. And so I ended up seeing a counselor. And with the help of the counselor, we decided to go off the birth control. Because in my mind, because of how I was feeling, I was thinking like, I'd rather endure another surgery, I know what to expect from that recovery, then have to deal with this emotional roller coaster that I was on. And
And within three days of going off the birth control, I felt like a cloud had lifted out of my head. And I just felt so much more like myself. And so about a month later, I met with my gynecologist again. And we discussed like other options. He's like, well, we don't want the endometriosis to come back. And this is really...
Like we got to find an option that will work for you. So I ended up trying a really low dose birth control, low, low estrogen. And that has worked very well for me since January of 2013. And I get annual exams now, ultrasounds, checking to see if endometriosis is back. The only thing
A residual from that surgery is that I have some scar tissue on my left ovary from where the cyst was. Everything still keeps moving around smooth. And the tech, my gynecologist, he always would look through the pictures and he's like, wow, like this was a really bad case. And so every...
year that I have an exam, I just pray that it continues to stay clean and healthy and been lucky in that sense. And it's been such a huge game changer for my life because now I can run again. I can train for and run marathons and I can do any fitness activity that I want without having and
endometriosis impacting that. I also haven't had my period in like five or six years. I've lost count. And so that's just a huge game changer for me too, because I don't have to plan my life around that. But that's just as a result. My name is Kim. I'm 39 and I'm
And I started having issues probably about seven years ago. I had done a lot of research on birth control and decided to come off of it. It was shortly after that, that I started having a lot of pain. I would get pains in the ovaries and heavy periods, a lot of cramping, a lot of stomach, like sharp stomach pains that would just flare up.
depending on where I was in the cycle, sometimes it was just like a little bit of pain and I can tolerate it. Other times it was, it would ground me for like a day or two. Like I just didn't know what was going on. And so when I went back to my gynecologist after being off of it for about two months and thinking this is abnormal, like her first response was go back on birth control. And when I explained to her why I didn't want to go on being a family history of breast cancer, ovarian cancer, and
And that the hormones actually produce a lot of that in our bodies to create breast cancer and ovarian cancer. So I was like, I don't want to be on it. I want to be off of it. And so about two months went by again, and I was still having all of these pains. And so I was like, can you please test my thyroid levels? Anything. Like at this point, like I'm in debilitating pain. Like I need to know what is going on. And
She just responded back, you just have to go back on birth control and just wouldn't listen to me at all. And it was very frustrating because it was like, why are you not listening to the pain that I'm having? And your only response is birth control after I told you why I don't want to be on it.
And so I kind of talked to a few of my other friends who had said they had a lot of cysts and maybe try a different doctor. And so I went to another doctor and she was like, well, I'll do an ultrasound. Let's see what's going on. She did blood work, ultrasound, all of that. And she's like, I never heard back from her. And I was like, is this normal? Like,
I would think I would have gotten some of my test results back. So I kept calling and calling. They're like, everything is normal. And I was like, but it's not normal. I shouldn't be having this pain. I don't know why I'm having this. And like, I would be laying on a heating pad for days upon days or having like the thermal wrap heat patches on just anything to try and control the pain so I could work every day.
So after kind of being dismissed by two doctors, I was just like, okay, I guess I'm just going to have to deal with this to my body. Just not being on birth control anymore. So about six months later, I was like, I have to get help. So I went to a completely different hospital where there was another practice and they were like, let's see what's going on. And my dad had a non malignant brain tumor on his pituitary gland. And so I was like that,
could be hereditary. So like if my thyroid levels are off, this could be causing some of my pain, like just test my thyroid. And they're like, oh, it's fine after they did some testing. And so I took it a little bit further and holistically looked into what a thyroid level should be at. And there's holistically, they say your thyroid is not working if it's at like 1%, whereas typical doctor is like, it has to be above 5%.
So mine were a little bit above and I just kind of did some adaptogen herbs, but I was still having all the other pain because I was like, okay, after doing this, like my thyroid levels came down. It's not this. So I went back and I was like, I seriously need help. Like, this is what's going on. Like you're a female doctor. Like you have to understand something that's going on. And so she finally was like, well, let's go do a scan. And they noticed that I had an endometriosis and,
And she was like, all right, so we need to get this out. So they took it out the first time they went in, they did the laparoscopic surgery and removed it. And I was pain free for about two years. And then it came back and I felt I had just moved back here and
And I felt like I was starting all over again. It was like having the pain. I knew exactly what it was. But now I had to reestablish myself with another doctor, the doctor that had performed my surgery down in Annapolis, retired. And so trying to get documentation back up here. I went to a Dr. Faye, a naturopath, and she was the one that got me up with my gynecologist now and has helped me. But I'm still kind of like in the fighting phase right now of like trying to get
the help I need. So like what I have been doing is very like holistically doing like the castor oil packs with the heating pad, trying to take natural supplements, like anything that can try to control the pain because I still have to work full time and I don't have the luxury to work from home. So I have to go in to work. I'm sorry that you are still suffering from pain because it is so debilitating that many people don't understand.
Yeah, it's crazy. Even like other female friends just don't get it. They're like, that's in your head. Like I was told so many times by the doctors that it was in my head. I was diagnosed with IBS. I was diagnosed with they're trying to say I had Crohn's and like all these different things that I'm like, I don't have the other symptoms of what these diseases that you're trying to say are. And
I even had a doctor throw his hands in the air and just say, I don't know what you want me to do. You have nothing wrong with you. It's all in your head. And I just remember like just stare, standing there with my mouth wide open. Like, are you serious? Like,
I don't want to spend $25 every time I come to see you to pay a copay just for you to tell me it's in my head when I know it's not. I'm very adamant about nobody, government, men, nobody should control a woman's body because only we understand what's going on in there. And for years, I had periods that were fine, like nothing was wrong. But I had horrible acne and migraines as a teenager. So they put me on birth control at a young age.
So it masked all the symptoms until I came off of it at like 30. You said your insurance denied a surgery. Was it a second endometriosis surgery? Yes. So they denied the endometriosis surgery. They said there wasn't enough to go on. So I had also switched.
jobs when I moved back here so I did for an insurance so they didn't see like history of being at these doctors all the time so they but they did remove cysts doctor was very adamant about like the cysts have to be removed because they're starting to twist her ovaries and so it's given me a little bit of relief over the past couple years but she's like you know I was in there I took pictures and she's like hopefully now we can get insurance to cover this one of the biggest things that she
for her job is she's constantly fighting with insurance on reasons why. And she said it shouldn't be a fight. It should just be like, this has to be done. Are you just waiting for the insurance at this point to give you a positive answer and then get a second surgery? Yeah, she wants me to heal from the surgery, removing the cysts. So she was taken hopefully in three months that
But by that time, I'll have healed and insurance will have covered it at this point because they were requiring a pre-off. When I'm treating, if your insurance isn't covering a surgery that will help your body feel better. Exactly. Like I just don't get it. It's like you're not the one that's in my body to know how I'm feeling day in and day out, but yet you're controlling my body.
and what the outcome is going to be. That's the frustrating part for me because it's like I worked so hard to be independent and to fight for what I believe in. And it's like everything is being pushed back against me by this insurance company. And I just really want to scream some days. Fighting insurance, fighting doctors. And I guess the one thing is anybody wants their voice to be heard.
And when your voice isn't being heard, you almost have this like sense of worthlessness or feeling unworthy. And you're trying to explain that to the doctor and they don't want to hear it. And it just makes it even worse. And it's almost like it creates anxiety around going to any doctor anymore because you're not being heard. And I think as females, we work so hard for our voice to be heard in general. And that's definitely been like...
It's been humbling in some aspects because I'm like, okay, I can understand what other people are going through when they really don't feel like they're being heard. It's just frustrating. And it's like, why won't you listen to me? Yeah. And it's so hard sometimes for other people to relate to because they haven't experienced it themselves. And because endometriosis is such an internal thing.
diagnosis, like nobody knows what you're going through and it really has a huge impact on your day, but nobody can, can see that. It's not like you have a broken arm. So it can be very hard to, for people to understand. Oh yeah, absolutely. Like my boss was like, I didn't know you were going through all this. And I'm like,
Well, the amount of times I would have called off in one week because of the pain, I would have been fired. So like, I have to fight through it. We work with patients. Like I can't be miserable in front of them. I guess I have high tolerance for pain in some ways, but I go, trust me, I get home some days, I'm just on my couch in a fetal position. So following your first surgery, what,
they didn't have you go back on birth control again to keep the hormones low because you didn't want to be on it? Well, she pushed for it, but I said no. I wanted to see what my body would do after having surgery and without it. And, like, even now, like, I'm kind of, like,
contemplating going back on it once I have endometriosis surgery because I feel like, all right, I'm going to have to because I can't keep going down this road of like having surgery or fighting or always not knowing what my day is going to be like. And Dr. Tup really talked about the positives of it and kind of like cleared my head versus like what I was hearing from another holistic doctor. Rewards outweigh the risks.
Any other final thoughts? No, I love what you're doing. I feel like awareness needs to be out there. I think people are silently suffering. I know you and I did for a long time and
I think that people need to understand that it's okay to speak up about it and to, you know, like ask your female friends, like, have you gone through this or do you know anybody that has gone through it? I think that's the best way to learn, like, okay. And then getting advice from people on who to go see or who maybe not to see and to understand it's not taboo. Like it's, it's really there. And it's almost like having an autoimmune disease. You just, nobody knows it's there. I love what you're saying.
My name is Liz and I'm 36. I was diagnosed with endometriosis when I was 21. I began my periods around the age of 12 and right from the get-go, it was obvious that they were going to be difficult for me. When I was 15, my doctor prescribed me birth control to try to alleviate a lot of the symptoms that I was having, which was just...
long periods, very heavy periods, very painful periods. And for 15 years, I was on different types of birth control to try to make things easier on me until it became quite clear that that wasn't going to be enough to do it. So 15 years after birth controls, I was placed on an IUD, which really did alleviate a lot of the symptoms. However, you know, there were
very painful periods, very long periods, cramping for days before, during, after. There was...
pain during bowel movements. There was pain with intercourse. There was constipation and frequent urination and lots of different things that were going on. And so there was a whole other host of symptoms as well. Finally, I got a new doctor and explained to her what I had been enduring for the last 15 years. And she said, you know, I think you may have more than endometriosis. And it was at that point
that they detected that I also had fibroids. In 2014, I had a laparoscopic procedure in which they detected that I did have a very large fibroid. They did a biopsy on it, which it was benign, which was wonderful. But at that time, I endured a DNC to try to kind of clean out
my uterus and try to alleviate some of the symptoms. In 2016, I had a second laparoscopy procedure and they cauterized a lot of the endometriosis that they saw within me. It was growing on the front wall of my
It was on the outside of my uterus. It was on and around my bowels. I had a lot of endometriosis in there. A few years later, in 2018, I had hysteroscopy, and they had planned to do an endoscopy
endometrium, which is kind of the next step up from a DNC to try to clean out some of the things that were going in there. And this whole time I was having this whole host of symptoms, things that I had mentioned, but now also I was having spotting or bleeding between periods.
I was having periods that would last two weeks or more. As the fibroids began to grow, they were pushing on other areas in my body, and they were pressing on my bladder, and they were pressing on my colon. The frequent and heavy bleeding was causing anemia. So it was a whole host of things that were getting worse and worse. And this past year in 2020, in early August,
I found a second fibroid that was growing faster and bigger than the first one. Which all led to just a week ago, here we are in February of 2021, I endured a full hysterectomy. Tubes, breeze, everything. I just got my biopsy back and found out that there was the two very large fibroids that
causing a lot of my issues, but there was still endometriosis on the outside of my uterus. The good news is that where they had cauterized those and the other areas of my body cavity, it did not come back. So it's still kind of unclear how much pain and symptoms was related to the endometriosis versus the fibroids. It's two separate diseases. There's about 25% will endure both of them.
And what's so hard to diagnose is that the symptoms for them are very similar. When you have both going out at the same time, it can be hard to determine which one it is. It was both for me. Some of the symptoms that were the most horrible, you know, besides the physical symptoms, were the emotional symptoms that nobody talks about. And the embarrassment and the shame of enduring these horrible periods for so many years and
And missing school and even missing college and activities that you want to partake in your life that you couldn't for days or weeks in a month. And the anxiety of never knowing when, you know, this bleeding was going to occur and constantly having to, you know, be ready for anything and never knowing how bad that pain is going to be and it just being debilitating sometimes.
And then, of course, with either of these diseases, there is the chance of infertility. And I also experienced that and all the sadness and loss that comes with that. There's the physical symptoms and then there's the emotional symptoms that can be just as taxing, that are just as hard. And one of the things that has made my struggle is so difficult is for so long, I didn't know
you know, a good family history. That was something that really wasn't talked about very much. And I know that that's very common for a lot of women out there. And if I had known, you know, that I was more susceptible to these things at that younger age, and honestly, if the doctors had known a little bit more about it, then maybe they could have diagnosed this way back at the beginning of my journey and unfortunately not near the end.
I think it's just so important for people to not be afraid to talk about it, to know their family history and to share those things with their daughters and with their nieces and with their friends, because you never know who's kind of struggling with this silently. And as we are entering an age here where all of the ladies in my age group are becoming moms and having children and
I think it's just so important that they let their daughters know, you know, these things are real. If you tell, you know, the doctor from an early age, if you're experiencing these things more than what you think is normal, that it's really important that you get a good OBGYN that really knows a lot and can help you diagnose this like specifically. And it would have saved me years and years of a lot of pain and wondering and worry and
And I really hope, I really hope that women can start to feel more comfortable to talk about this amongst themselves. How is your recovery from your surgery going? So for me, I'm a go-goer. So for me to lay down, you know, for days at a time here has been the most difficult part. The surgery, it went well. It was quick. I was in the hospital for just a few days.
It was very sore in my abdomen and it's getting better every day, but just sitting still has been one of the hardest parts for me, but I know that I have to get better. But besides the soreness from the surgery and all that, when I got home from the hospital, I started to feel better after a couple of days and then
Then I started to have some other kind of symptoms here that worried me. And I just, you know, it's only been a week and I just spoke to my doctor today, but I was having really bad headaches and I was having temperature fluctuations and kind of getting temporary fevers and aches and other areas of my body. And it was concerning me. So I called her.
And what she reminded me of is it's kind of the symptoms of menopause. I do not have any ovaries at this point. And even though it's only been a week, my body has started to figure out that there's no hormones there. So some of these things that I'm enduring are early symptoms of menopause. And in a few days here, when I go to my follow-up appointment, I will be prescribed some hormone replacement.
I'm not sure at this time whether it's going to be patches or whether it's going to be pills, but she ensures me that once I get back on that, you know, things will level out and things will be good. I really appreciate you sharing your message and your journey with women, and I hope they found it very helpful. If I can help just one person out there who's experiencing this and is just afraid to speak up either to their family or their doctor or anybody, I
You know, it's happening. So you got to be honest and you got to be brave. Yes. And I think you, myself and the other women that are sharing their stories in this episode all feel that same way. We just want to help other women feel less alone when they're going through this. There's so many of us out there. And for so many years, it was...
kept quiet. You know, I think it was embarrassing for a lot of people to talk about it. And if people don't talk about it, then we all can't get better. That's very true. So I just have one question for you. Was it a difficult decision for you to get a hysterectomy? It was. For a number of years, I was seeing one particular OBGYN and
that even with the fibroid that I had at that time, it was just the one that we knew about while having that in there. It was large enough that they could not remove it and kind of stitch up what's left because I wouldn't have a big enough uterus to carry. But they were pretty convinced that I would be able to conceive with that in there. However, that was not the case. And I got a second opinion.
And I was so glad that I got a second opinion. It was the best decision that I had made. She hated to tell me the truth is that that was far too big for that to happen. And at that time, they actually found the second one. And as much as it
After that, I was so glad to know that because if I had gotten pregnant, that it would have been very dangerous for me or for the baby. So it was very difficult to get that news. But ultimately, that happened.
The race is long and you're in it with yourself. So I had to do the best thing for my health and for my body. And as difficult as it was to make that decision, it's what I had to do to move forward and to be healthy and to enjoy all the rest of my life. I'm so looking forward to getting better and just looking forward to living my life without all these problems.
dozens of pain symptoms that I have shared. It's going to feel miraculous to me to be able to live without all that hanging over me all the time. Well, I hope that your recovery continues to go well. And thank you so much for your time today, Liz. And thank you for your courage to share your story with other women. It's a pleasure. Thank you. I have a new OBG now.
Thank you so much for listening to today's episode. And I want to send a special thank you to Lindsay, Kelly, Liz, and Kim for having the courage and bravery to share their story and joining me in this project of raising awareness for endometriosis. Please share this episode. That would mean the world to us. Thank you.