Ep. 11: Ikea’s Story - Endometriosis
Caitlin:
Welcome to the woven well podcast. I'm your host, Caitlin Estes. I'm a certified fertility care practitioner with a master divinity degree. Each episode will cover a topic that helps educate and empower you on your fertility while honoring the deep connection your fertility has with your faith. Let's get started.
Caitlin:
I believe that a part of empowering and educating women is to connect them with other women on the same journey. That's why we'll sometimes have episodes devoted to hearing the fertility journey of one of the women who are a part of woven or friends of woven. Whatever your situation or fertility goal, it can sometimes feel like an isolating road. But there is a whole community of women out there asking the same questions you are. That's why I'm really excited to speak with Ikea today. Ikea began her journey with endometriosis early on and can share much of what we talked about in last week's episode, endometriosis 1 0 1. So if you haven't listened to that, go back and take a listen. Now, we'll talk about symptoms, her journey to diagnosis, and her treatment options today. And after listening today, if you'd like to follow her specific journey, you can her on Instagram @thrive.with.endo. So Ikea, thank you so much for being with us today.
Ikea:
Thank you for having me. I'm really excited.
Caitlin:
Yeah, I'm excited too. And there are so many places that we could start. But why don't we start with what your experience with endometriosis has been like, when did you start experiencing symptoms? What symptoms were most common for you and anything else you'd like to share?
Ikea:
So as far as symptoms go, unfortunately like many, many women who experience endometriosis. My symptoms started when I was about 12. So basically right at the onset of menstruation at the beginning. Just right from the very beginning. So it started off with just, you know, cramps. And at first I was told, you know, like this is normal, you have, you know, cramps and everybody has cramps and things like that. But then it progressed very, very quickly. So like by the age of, I would say maybe 13, it progressed to like debilitating cramps, even taking ibuprofen, wasn't helping at all. My mom was just so confused. She was, you know, typical mom in this situation. How do you help your kid? Your kid is obviously in debilitating pain. I would miss school then, um, the symptoms progress to super, super heavy bleeding. And then I also started vomiting. I would have dizzy spells. I would have fainting spells. I remember one time even at school. And that's, I think the thing with endometriosis that a lot of people don't realize is that you're fine one minute. And then the next minute you're fainting, or you have these dizzy spells, or you just have this extreme burst of nausea and you're just gonna, you know, throw up and it's, you know, it's, it's not fun. Definitely not fun, but those, those are what my typical symptoms were.
Caitlin:
Oh. And right from the beginning too, that's, that's hard to deal with as an but then you imagine, I mean, I imagine you, you lived it, you know, going through that as a 12, 13, 14, 15, etc years old. Gosh, that's just so difficult. I know you've had a long road to diagnosis and a long road to treatment. And of course we know that that's not unusual. You know, like we talked about in our episode last week, on average, it takes a woman seven to 10 years to be diagnosed with endometriosis. But often one of those reasons why it's so delayed is because women are told that painful periods are normal. So I'd love to hear from you. When did you first learn one about endometriosis and what did it feel like to hear that it was not in fact normal?
Ikea:
It's funny, you mentioned this because like, like I just said from the very onset of menstruation, you know, like 12, 13, this is where those symptoms were starting. And I would say by the age of six, like 15- 16, my mom was basically, you know, we had gone to my regular pediatrician, she wasn't really helpful obviously. And so my mom took me to a OBGYN, not for a pap smear or anything because you know, obviously I was 15, I wasn't having sex or anything like that. But it was more for like, okay, where do we go from here? It's always during her period. Other than that, she's fine. So I was totally fine for let's call it 26 days out of my cycle. And then for the first, for the first two days of my cycles, day one and day two of your bleed, it was just atrocious with all those symptoms. So at about 16, when my mom took me to the gynecologist, I was infamously put on birth control pills to as they say, balance your hormones out.
Ikea:
So once I started the birth control pills, my cramps definitely lightened up. I didn't have any more of the vomiting, no more of the dizzy spells, but I was still having to take pain pills during the first two days, which I mean, if these birth control pills were really supposed to work, shouldn't I be not having to take any pain meds or anything like that? So, since the symptoms definitely lessened, it was okay, it's working and that's how it kind of stayed for a while. And then when I was about 18 or 19, my mom said that she heard from a customer that their daughter has endometriosis and all of the symptoms were lining up with my symptoms. So I went to a new gynecologist at this point in time, told them all of my symptoms and everything. And I kid you not, these were her exact words: Okay. Okay. Well you're on birth control pills and the birth control pills helped. Correct? And I, yes, but I shouldn't... I Feel like I shouldn't have to be on birth control pills. I feel like my body, like whatever the root cause of this is, we need to get to the root cause because I obviously don't wanna take birth control pills for the rest of my life, number one. Number two, when eventually down (I mean, mind you, I was like 18 when this was happening,) but at, you know, 20 something 30 or, you know, whenever God willing, when I was gonna get married, what was I supposed to do? Just stay on birth control pills while during my marriage, you know, like it just wasn't adding up. And she also said, okay, so what's your pain level?
Ikea:
Like, and I told her that I'll have to take maybe 400 milligrams of ibuprofen multiple times a day though. So not just once a day, it was multiple times a day. And again, I kid you not her exact words were: well, I have patients who are in like debilitating pain and they have to go to the hospital for their pain or they have to take prescription drugs for their pain. So if you can tolerate this for, you know, with some over the counter pain meds then you're fine, honey, this is normal. That's exactly what I was told. So again at, you know, 18, 19, I'm thinking in my head, okay, this is now the fourth doctor who's told us that this is normal and okay, so this must be normal. I just thought the classic, I just must be cursed with bad periods.
Ikea:
That's exactly what I went through the next couple years with. And then finally at the age of 26, I finally found a gynecologist who actually did listen to me. And she said, yeah, it definitely sounds like you have endometriosis. But then I was now on the other end of the spectrum where she says, are you ready to have kids? And I said, no, I'm engaged right now, but we definitely wanna, you know, establih ourselves a little bit better. We wanna get into a better financial situation before we bring in children. And so she literally tells me, well, honey, it's gonna grow back within six months to a year. So if you want to, she said, I would suggest you wait. So at this point it's kind of like, yes, you probably do have endometriosis. We believe you, your symptoms all line up, however, you should probably wait until you wanna conceive.
Ikea:
So what did I do? I waited. And here I was, you know, I listened and here we are. So I would say ultimately how I felt once I actually realized a couple years later, how horrible endometriosis actually really is and how not normal, no matter how many doctors tell you it is how normal it is. I was definitely, I was like, I was livid because at this point I've been dismissed by however many doctors, you know, unintentionally lied to about the whole it's just gonna go back in six months, which is not true if you actually get expert excision. So I would've much rather had the doctors tell me, you know, Hey, we're not experts in this we're gynecologists and we can try, but you know, it's with the ablation or certain methods that we use, it has a high recurrence rate
Caitlin:
I'm so sorry that that was your journey and I'm also so glad that you're sharing it because I think a lot of people who listen will say, Hey, that's happened to me. I've given my symptoms and been told, oh, well, compared to other people, that's not that bad. Or as long as you can tolerate it, then it's okay. Which is completely unacceptable!
Ikea:
I was just gonna say, I wanted to throw out that a lot of times the staging of the endometriosis doesn't correlate with your pain levels. For example, on this journey, I've met a lot of women who have debilitating pain and they'll end up in the hospital due to their pain and ibuprofen doesn't work, you know, and nothing over the counter works. And they end up having like stage one or stage two. And then here I was only having, you know, the first two days of my menstruation being the horrible debilitating. Other than that, I was totally fine. And I ended up having stage four that was confirmed after surgery.
Caitlin:
I'm glad you brought that up. And now once you felt like, okay, I really, really think that endo is a huge possibility for me, you started pursuing treatment and you've already talked about how you were looking at some of the differences and you ended up having excision surgery with Dr. Nicholas Kongoasa at the center for restorative reproductive surgery. So you've shared a little bit of how you got to that point, but, I'd love to hear what it was finding excision surgery and, you know, how did it feel to find the doctor you wanna work with?
Ikea:
I say two things when I always describe this, it was mind blowing number one, because you're entering this world that you didn't even know existed. And then honestly, it was just by God's grace, honestly. So I, um, my husband and I decided we wanted to try to conceive around my 30th birthday. And I ended up, we ended up being unsuccessful for four months. So after that I said, okay, something's go, you know, something's up, let's just start the fertility workout process. So yeah, I had an HSG and they determined that both tubes showed partial blockages. And it was literally, yeah, this is very common with women with endometriosis. So I met with two reproductive specialists in my area. And of course what happened was they told me, yeah, your tubes are gonna have to come out. So we're gonna have to do a surgery. We're gonna remove the tubes and you're gonna have to do IVF. And I said, we are in, at the time, in 2021. This cannot be my only option. So I started doing some asking around word of mouth and I ended up meeting a friend of a friend and it was so funny because she told me, Hey, I'm gonna give you my friend's number, but she she's horrible at responding. So you might have to give her some time. And she actually was spot on with responding. So I was like, thank you, God. You know, like this person's willing to help me. And so she told me about excision surgery for endometriosis. And I said, I really think I have endometriosis.
Ikea:
And she says, girl, you need to call me. So I call her and she filled me in on everything. She told me about Nancy's Nook all of that. So when I started doing my research with Nancy's Nook most of the surgeons who were on there did excision surgery, but they also didn't work with the fertility aspect. And that's what I needed. I needed somebody who could do both. So I saw Dr. Kongoasa's name on there, and I started doing some research about him. And I ended up finding out that he could do everything I needed for him to do. So I did a consultation with him and it was literally just a godsend. Like he literally said everything that I prayed for came out of his mouth and I was just, oh, beautiful. Super, super. Yes. It was so beautiful. It was awesome. Amazing.
Caitlin:
Yes. And I love that as you're describing this whole journey how God provided different people at different stages for you. One, the person who told your mother about endometriosis. And that your mother was an advocate for you. Your friend who you shared your story with connected you to her friend who was willing to share her experience. And that's just a reminder for anyone listening. There is a community out there for whatever fertility related issue or journey you're walking. There are other people dealing with that, walking that journey too. I'm so glad that you shared all of that. And I would love to hear you kind of are talking about it, but you know how God was present for you in the midst of that journey, because it wasn't easy. It doesn't sound easy at all.
Ikea:
No, it was definitely definitely a moving mountain kind situation. So I would say like, this journey is definitely, it feels like a very lonely journey at first. I feel like sometimes, you know, God puts you in those situations so that he can obviously show you how amazing and like, you know, the miracles that he can work, but also to remove certain people from your life that are not beneficial and not good for you, but to also replace them with those new people. So in this journey, I've met a lot of people that I definitely would've never met had I not been in this journey. And then there were also a lot of little, you know, like those little God wink moments. And I didn't even notice this myself. My mom noticed it. We looked, she was, I sent her Dr. Kongoasa's website and I said, you know, mom, what do you think about this? You know, yada yada. And she calls me and she says, this is the doctor you need to go to. And I said, mom, I sent you that maybe like 30 seconds ago, how did you actually go through his website to get a good feel for him? And she said, do you know what his address is? And I said, no, I didn't. You know, like I, I know he's in Atlanta, Georgia, and I knew I was gonna have to travel for surgery. And she said, it's Holcomb bridge road. And so my mom's maiden name is actually Holcomb. Which I thought was so cool. And I said, okay, that's definitely a godsend for sure. I said, God, if you're not, if you're not Omni present, like, I don't know what this is.
Caitlin:
I love it. And so you've had your surgery now you are a few months out from surgery, in fact, and I'd love to hear, how do you feel like you're doing now? Do you have the same symptoms? Have they improved at all? What's what's happening now for you?
Ikea:
So I was definitely forewarned by Dr. Kongoasa and just by a lot of other people who've had surgery, to be aware that the first three cycles after are gonna be still pretty painful, still maybe heavy and still maybe a little clotty because your body's healing and that's the reality. Give the situation you just had, like, although your scars on the outside might be starting to look good. Your insides are still a hot mess, you know? So you're still healing. So I would say the funniest moment was the first bleed that I had after surgery was definitely, it felt the same. So meaning like, it wasn't, it wasn't debilitating. It was definitely painful, but not debilitated. So that was a good sign. It hadn't, it hadn't improved tremendously, but it didn't get worse. And I thought that that was amazing.
Caitlin:
Great. That's a win.
Ikea:
Right. So the second bleed that I had, I'm not kidding you. I would not have known that it started if I didn't go to the bathroom, no cramps, no major signs. And I used to have like that premenstrual spotting, which is like, you know, low progesterone sign of and all that. I used to have that. And I was never spotting anymore before period. And like the period would literally just start as a full flow, which is how you a lot of women describe their flow. It just no spotting and then boom, it just starts. And so that's how it was starting. And the funny thing is by day two, I was going for a walk with my husband. I was, you know, like I wasn't needing pain pills. Wow. And so my husband actually looks at me, he says, are you sure you're on your period? And I said, jokingly, yeah. Do you wanna see? And he's like, no, no, no, no, no. I believe you, I believe you. So I would say overall symptoms improved significantly. I still like due to the fact that I did have, unfortunately stage four, do still have some pain, but I'll be honest if it's, if I could stay home, I wouldn't need pain pills at all, but I'm a high school teacher, so I need to be like, you know, up and moving and everything like that. So on day two of bleeding, I will literally maybe just take like one ibuprofen. So we're going from 800 milligrams on a regular basis to now like just 200 milligram one time. And it's only, like I said, just to get me through the first couple of hours at work I love, but if I love that. Right. And so that's, that's basically what my symptoms are now.
Caitlin:
Oh, that's amazing. I'm so glad for you. We, we know that endometriosis, at the time of this recording, is not curable, but it is primarily treatable. And it sounds like that's what that journey has been for you. Your final point is that place of treatment. And I'm so, so glad. So thank you so much for sharing so much. For all those listening, you may find that your story, or maybe your symptoms could sound familiar to Ikea's or maybe you just wanted to hear what endometriosis is really like from someone who's been going through it either way. We are really grateful that you listen today. And one way to help women get an accurate diagnosis quicker is to raise awareness and educate women themselves. Just like we talked about with Ikea's story, there were so many women along the way that got her to the point that she is now. So we wanna do that for one another. We wanna be a community together. So we hope that these two episodes have helped all of us to do just that. If you'd like to investigate your own fertility by charting your cycle with us, I'd love to invite you to join this month's introductory session. There's still time to join. You can register at wovenfertility.com/join-us. So again, thank you so much for joining us Ikea. It was a privilege to have you on today.
Ikea:
Absolutely. Thank you for having me
Caitlin:
And thank you listeners for joining us today as we continue to explore together what it means to be woven well.