Alaia Baldwin: My Main Endometriosis Symptom Was Pain

Read about Alaia Baldwin who talks about her endometriosis pain.

From the award-winning Dr. Tamer Seckin comes a book for all of the Endo Warriors out there, from the 13-year-old girl who is being told that her pain is “part of becoming a woman,” to the woman who has been misdiagnosed for decades—and needs to know she is not alone. Every woman has the right to be pain-free. To live the life she wants to live. The journey toward new and happy lives for young women begins now!

100% of royalties go towards funding the programs of the Endometriosis Foundation of America.

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An interview with Alaia Baldwin Aronow

Sabrina Korber:
I’d like to welcome Alaia Baldwin Aronow. She is a fashion model, now a patient of Dr. Tamer Seckin’s, as well as pregnant.

Sabrina Korber:
Dr. Seckin’s book, “EndoMEtriosis: A Guide for Girls“, is out now, and you had the pleasure of being able to write the foreword for the book. I wanted to talk to you about that. But also your journey with endometriosis, discovering the disease and how you deal with it. Let’s start there, because I think the topic of endometriosis and young girls having to deal with it is such an important one. Tell us your journey of discovering your diagnosis with endometriosis.

Alaia Baldwin Aronow:
Well, I started having symptoms in my early twenties. It started later for me than the more atypical situation. When you’re a teenager and you get your period it’s bad, and it starts there. I pretty much woke up one day when I was dating my husband to be, and I just had really severe pain. Over the next few months, it got worse and worse. I told my GP. He suggested, “I think something’s wrong.” At the same time, I was experiencing those symptoms, my other family member was also experiencing them. So I actually turned to her and she’s the one who referred me to Dr. Seckin. If it wasn’t for her knowledge, then I probably wouldn’t have met him as soon as I did, because I know that most women in my position end up meeting him 10 years down the line, multiple surgeries down the line.

I met him within, I’d say eight months of experiencing any symptoms at all, which is very quick compared to other people. We both went in a week apart and had our first visits with him. He agreed that my pain was progressing really rapidly and that he thought I had endometriosis. I thought I did [have it]. But on any scans or MRIs, I was completely clear. So when I scheduled my surgery, we technically went in completely blind in terms of testing and scans. But we both knew that something was wrong and it was getting worse a lot more quickly.

After my surgery, he had removed stage 2 endometriosis from a lot of different areas. It was all over in little bits. So, yeah, I had it, it was there, and it felt really amazing working with someone who knew what he was doing because any other surgeon probably would have denied me a surgery because obviously in any checkups, nothing was visible to the eye before he got in there.

That’s pretty much how it all began. I had my surgery a week apart from my family member. So that was nice to have someone to go through the trenches with. And ever since then, it really helped. It made a dramatic difference in my symptoms, but it’s still been an up and down journey.

Sabrina Korber:
Let’s talk a little bit about the symptoms because I think there are so many misconceptions, not only in the medical field with doctors but with us as patients. We don’t even know that we’re endometriosis patients. And full disclosure, I’ve also had surgery with Dr. Seckin and dealt with endometriosis. What were your symptoms and what made you think that there was something wrong with you?

Alaia Baldwin Aronow:
My main symptom was pain. I never in my entire life had a period cramp. Maybe I’ve taken Advil twice. Well, back then. So that was the biggest symptom for me. I just woke up screaming in excruciating pain, called my doctor, do I go to the hospital?

That was sometime in July. By November I was in bed for 10 days every time I had my period, taking painkillers because it was that or the ER. It was one or the other. It was a really, really fast road to just very, very intense pain. Basically, it just happened overnight. It was definitely not a gradual symptom-based experience. I woke up one day, it was an eight out of 10. Then a few months later it was a 12 out of 10. My doctor gave me painkillers. He agreed something was wrong. He’s been my doctor for eight years, so he knew, obviously, if it’s that bad, here’s some medication, but that was pretty much it… It was just the worst pain of my entire life.

Being bedridden, barely able to stand up, having pain in my back, pain in my abdomen, pain down my legs and my hips. I’ve heard some people say that their period cramps were worse with endometriosis than labor. I’ll get back to you on that. Let you know how that goes.

Sabrina Korber:
Please do, because I think we’ve all wondered that ourselves.

Alaia Baldwin Aronow:
I definitely feel prepared for the level of pain. I’m not as scared, I think, as your average person, who’s never had a cramp before. I think that the level of pain you’ve experienced definitely at least gets you a feeling of what it will feel like. I’ll circle back on that later.

Sabrina Korber:
I’m sure. I wish you luck. You’ll probably be like, this is a breeze.

Alaia Baldwin Aronow:
Yeah, I heard that. We’ll see. It might not be a breeze, but I’ll be more mentally prepared.

Sabrina Korber:
Now you’re a pretty outspoken endometriosis advocate and building awareness around the disease for others that may not know about it, or just experiencing it themselves. Dr. Seckin’s book chronicles many different patients’ experience with the disease. Which by the way, if nobody else knows this who is listening, but everybody’s symptoms and experience are very individual.

You mentioned yourself that you felt very lucky to find an expert that knew how to deal with the disease. Why now, as an advocate to build awareness and educate people, do you think it’s important that this type of book and your voice and other patient’s voices are out there for others to learn from and find the right treatment?

Alaia Baldwin Aronow:
I think it’s so important, especially that now this book is geared towards younger women. If I had been experiencing this as a teenager, or I got my period when I was 12, I can’t imagine, I can’t even wrap my head around, having that kind of pain that young in my life. I danced every day. I was super active and went to school. Never did I miss school or a class. My period was just a breeze at that stage of my life. I can’t imagine just that time of your life is already so weird and awkward and you’re going to middle school, high school, there’s enough going on. The last thing that you should have to be thinking about is missing school because of your period or missing an activity or sport.

That is really what struck me and became a big motivation for me to talk about it and just be open about it to any age group, obviously. But I really can’t even understand what it’s like as a younger teenage girl to have to deal with that on top of the regular weirdness of that time of your life. It’s already so awkward to talk about your period when you’re that age and trying to explain it to your friends as an adult what endometriosis is and the pain and the life changes you have to make to other adults is hard enough. So I can’t imagine being 14, trying to tell your friends, I can’t have a sleepover because I’m taking painkillers in bed and your friends are like, what? I can’t.

That’s really been a big motivation for me to share and just be an open ear to anyone that wants to have someone to talk to or who understands. Because it can be so isolating when you’re in the middle of those pain moments by yourself. You don’t have anyone who knows what that’s like. I think that this book is really just a great tool to offer that to younger woman who, especially at that time of your life, it’s so sensitive and delicate, to be able to have someone, or something, a book or hearing other women’s stories, to just even feel that you know that other people out there understand what you’re going through and have some resources to help.

Sabrina Korber:
Yeah, absolutely. I’ll have to say, when I was diagnosed as well, which you only get diagnosed with surgery because it can’t be necessarily detected with scans all the time. That was something that was a breakthrough and I think it is for many of us, and then to know that others went through the same thing, you just don’t feel so alone.

Alaia Baldwin Aronow:
Right. Exactly. I remember when I was first signing out and even just canceling plans or not being able to attend certain life events and feeling really judged by certain friends or family, and not even if it was on purpose or coming from a negative place. But people don’t really know what to tell you or if they should give you a hard time or not. Is it really that bad? Yeah. It’s that bad. I want to be there having fun or having a drink or whatever it is. The whole experience at any age is extremely isolating and difficult, but I can’t imagine at that age, having that also on top of [crosstalk 00:11:10].

Sabrina Korber:
Having to make difficult decisions. As you have embraced the fact that you have endometriosis and do have to deal with it, it doesn’t go away. How have you molded how you speak to people about the disease and educate them so that they do understand that you feel bad even though you look really healthy and you look like you can do all the activities that everybody else is doing. But there are days that you just can’t. I think that’s a big challenge, is getting across to people that I am actually sick today and I need to take a break. How do you describe it to people?

Alaia Baldwin Aronow:
The biggest thing I had to learn over time was just accepting your situation. If someone else is going to be, difficult about it or upset or annoyed, there’s nothing you can do and that’s their own problem. If it’s someone that’s going to keep doing that to you and really not understand, then maybe they shouldn’t be a friend or be in your life. Because I felt in the beginning that a lot of people really weren’t understanding how bad it was and where I was coming from.

A big turning point for a lot of those people was when I did have surgery and I was diagnosed and also that in the general public, I feel in a great way endometriosis has been a more talked about and advertised medical condition. Over time, the awareness that has spread has really helped in my own benefit with people understanding what it is and how deeply it can affect your social life or relationships.

But I think the first thing that I had to do that took a long time, was just accepting that this is what’s happening. If I have to explain to someone that I couldn’t be somewhere, just being really brutally honest, instead of I feel in the beginning, I’d send a message, hey, I’m not feeling too great. Maybe I can come for an hour. And not really giving off the severity of the situation instead of just being more mature about it and upfront. I’m not coming. I really don’t feel well, I love you, I wish I could be there. We’ll do something another day.

But it really was an emotionally taxing experience getting to that place and understanding how to present myself to other people and to just be more brutally honest and just say, no from the beginning. If it’s a Monday and your thing is Tuesday night, and I know on Monday night I feel awful and there’s no way, just say no from the get-go. Don’t give any false hope.

I used to say, I’ll see how I feel tomorrow. I’m in bed, taking medication. I’m not making it tomorrow. It’s your own journey to navigate. But I think that once I accepted my own condition and figured a better way to communicate with other people about it and be just very blunt and upfront, instead of trying to please people or make a worse scenario sound less serious than it was. That made a really big difference. But it took a long time to get there. It was really hard.

I was so confused in the beginning. It’s just a lot to try… You’re already so confused, then you have to talk to other people. It was a lot going on. But in the end, my friends now, they are very understanding, and my family. If it’s no, it means no. They have watched my journey over time and that also has been, I feel, an eyeopening experience for them to understand.

Sabrina Korber:
Very good advice. You’re also in a committed relationship, you’re married, you’re expecting your first child, that’s a different dynamic as well. Maybe you can share with others how you’ve navigated that with your husband to really get through dealing with the disease together and probably coming out stronger because of it.

Alaia Baldwin Aronow:
Absolutely. That has been the biggest challenge. But also the most rewarding outcome I would say, because Andrew, more than anyone since day one, has been there. I was living with him when this started. Whenever anyone comes at me or comes for me to say, is Aaliyah really that bad, they always go through Andrew. Call him, how bad is it? He’s like, it’s bad. So he’s the mediator between me and other people.

But he has really seen it all and been through it all since day one and has the most experience, besides me in my own body and flesh. I think that when this all started, we were just dating for a couple of months when this started, so that was a really huge thing to go through with someone.

At that point, we pretty much knew that we’re going to be together and this is for the long run. But he’s definitely been my biggest support and my absolute biggest companion through this. That’s made it a lot easier. He’s never questioned anything because he’s seen it live, live stream, this is happening in your bed next to you.

More than my parents, more than anyone, he’s just physically been there to see the amount of pain and taking me to the doctor and taking me to pick up medicine or to get acupuncture, whatever it is. I’m really lucky that he has been so great through it all. He has really been through the trenches with me and understands more than anyone else. For anyone it’s a huge test of your relationship also. Obviously here we are, married. It worked out.

I’m really lucky that I had him through all of the hard times and to advocate on my behalf to others, if they question anything or had any questions or how bad is it, is it not? Because he’s really just seen the darkest days.

Sabrina Korber:
Yeah, no, he’s a keeper for sure. I think it’s just important to point out that, for young girls especially, that they can find somebody they trust. They may not be in a relationship necessarily if they’re younger, but their mom, their dad, an aunt, an uncle, there’s always somebody out there. Or fellow patients, like us. You’ve been very vocal on some social media and sharing your [inaudible 00:18:27] and open to questions. Hope that younger patients could reach out to you, and others, to just relate to them and they’re dealing with the disease.

Alaia Baldwin Aronow:
Exactly. If it wasn’t him, if I was younger, it would have been my mom for sure. I just didn’t physically live with her anymore. In any relationship, it’s not a very sexy topic. It’s a lot going on. You have to be very blunt and honest and see a lot of things that aren’t very cute with whoever that person is. Just make sure that they’re ready for it and you can trust them. If it’s him, or if it’s your mom, or a friend, or another person with endo, that’s who’s going to understand you the most.

Andrew is secondary to an endo patient pretty much at this point, because he’s seen so much. I think it’s nice to have that relationship with a person who really understands it or has been there with you through all the times that have been really bad.

Sabrina Korber:
Yeah, absolutely. I want to get to some of the discoveries you’ve had dealing with the disease. You had described to me that you’re pretty OCD about taking care of yourself. In addition to finding the right doctor or surgeon or whatever treatment option people are looking toward at the right time for them, there are other alternative methods that can help the symptoms. Tell us what works for you? What is your go to method of dealing with, not only stress, but the pain and all of the things that come with endometriosis?

Alaia Baldwin Aronow:
Well, there’s a few. I always tell people growing up, I was really fortunate to have a mom who’s been very into natural health, before it was cool, before juicing was cool, or anything like that, she’s been on top of all the trends. I think that made a huge difference in my own experience and I think that could have contributed to why I didn’t have, you know, symptoms, maybe, for a long time because I’ve always grew up eating really clean and going to the farmer’s market. Just living that lifestyle before now, where that’s what everyone is doing these days. My friends used to make fun of me. Here’s some organic apple juice and organic this. And I was like, it’s just how it is for me.

I think that diet has always been huge for me, it’s just part of who I am. Making better choices, eating clean. I don’t think that there’s one method of eating that works for everyone. It’s a very individual experience. It’s figuring out what foods make you feel good and what foods make you not feel good and It’s really not that complicated.

Sabrina Korber:
What are some of the foods that you’ve cut out and also added in more of?

Alaia Baldwin Aronow:
Well, in my twenties, I also became super allergic to gluten, so that’s just out. Very serious allergic reaction. I’d say, besides that, I definitely don’t eat dairy all the time. At least not daily. I’ll sometimes have some cheese if I feel like eating it. The year that I started to have endometriosis, I did a lot of hardcore dietary alternative treatments for myself to, I guess, cleanse myself and reset my body and reset my gut.

I think that a lot of people underestimate the power of your digestion and your digestive system, which now is becoming more popular, taking probiotics, eating pickled foods. I went through a whole journey of that, of just making an effort to eat a lot of things that helped my stomach, which with endometriosis, it’s all very linked.

So, I think just making better dietary choices, maybe cutting out certain allergens for a time. If you want to try no gluten, no dairy. I’m pretty strict about sugar. I’ve never eaten a lot of sugar even before this period of my life. It doesn’t make me feel good. I still eat fruit. I bake a lot. If I want to eat it sometimes I’ll go for it. But daily basis, no white sugar, just no sugar.

Sabrina Korber:
I think we should all aspire to that, by the way. You’ll be my inspiration.

Alaia Baldwin Aronow:
I hope I can help. Even since I was a teenager, I really was big about, and my mom was too, but it makes me break out. It makes me not feel well. I use honey, agave, with my coffee, Stevia. If I feel like baking something, I want to eat it once or twice a week, that’s fine. But I’d say no sugar is my number one. And gluten, but that’s an allergy so it’s not really a choice.

Sabrina Korber:
I will say, so many patients that I’ve talked to, and I cut out gluten after my first surgery within a year because I did have recurring attacks, and so I realized then that the gluten helped me and I’ve heard that from so many other patients. [crosstalk 00:24:15] have that level of allergy or celiac, I do believe that it’s a sensitivity that many endo patients deal with.

Alaia Baldwin Aronow:
Right. I think the biggest issue with that, like a lot of our foods, is that it’s so processed what we’re usually eating, especially with gluten. If you can, like I said, try cutting those things out, see how you feel, see if it makes a difference, maybe finding there’s certain breads at whole foods that are better or much higher quality or sourdough or whole grain that may work for you. But if you feel that much better not eating it, then maybe don’t eat it.

But I think that it’s just a path of discovery and learning that for yourself and making the effort. Obviously if you’re really not feeling well, you’re going to make the effort and try everything. 

Sabrina Korber:
Yeah, that’s a really good point too, because I think temptation is so hard to not give into, but it’s really the pain and the experience that drives you to finally say, I’ve had enough of that. 

Alaia Baldwin Aronow:
Yeah, absolutely. There’s so much more available now too, by the way, in any dairy free, gluten free, vegan, paleo, grain-free, just everything free, than there used to be, even since I first became allergic. So I think that makes it a little less intimidating, but yeah, I think it really is figuring that out for yourself and just making general try to make better whole food choices and then pick and choose and navigate what works for you.

Sabrina Korber:
Yeah. Well, you have a baby on the way, could come very soon, so I don’t want to keep much of your time. I do want to hear… I think you’re expecting a girl, correct?

Alaia Baldwin Aronow:
Yes.

Sabrina Korber:
This is going to be on your mind for her and how do you anticipate watching out for her, making sure if she has it, hopefully she doesn’t, that she gets the right care so that she doesn’t go through what you had to?

Alaia Baldwin Aronow:
I do think about this sometimes and I try not to get overwhelmed. I have a solid 11 years before I have to really worry about that. But as much as I have seen helicopter moms be helicopter moms, I’m going to try my best not to do that in this department. But I think that just doing my best to make healthy food and have a healthy lifestyle, be active, all of those things that most moms, of course, would want to do anyways, I think are great preventative measures and also just good decisions for any child.

I’m very lucky that I have the resources that I do now. Obviously, I have people like Dr. Seckin in my life who, when that time did come, if anything was wrong, I would have the ability to turn to some of the best people in their profession.

I also hope that by 11 years from now, there’s a lot more research done or alternative treatments provided for people in our position. I have a lot of hope. I’m so thankful that the last couple of years there’s been so much more awareness spread and less stigma attached to talking about this. I think that’s the biggest boulder that had to just be removed, which is something I’ve never understood. I’m just like, hey, have my period, but I know it can be really uncomfortable for some people.

I think a combination of all those things by the time that I really reach that point, we’ll have a lot better treatments available and I’ll have the best people available to me who are not only my doctors, but my friends, to be able to navigate that, if it was an issue. Of course, I don’t want it to be an issue. We’ll see.

But I do my best, like I did with myself, to not drive yourself crazy and think about it too much and just do your best within the walls of what you can control and take care of yourself and be happy and make decisions that make you happy and Don’t keep you too stressed out. Surround yourself with good people, people who love you and understand. That is the plan.

Sabrina Korber:
That’s great. No. Lots of hope here too. I think we just have to keep working together as advocates and endo sisters to move it forward and find solutions with experts like Dr. Seckin and the Endometriosis Foundation of America, which I know they have a new campaign out and you’re involved in that. Why don’t you tell us a little bit about that that’s going on now?

Alaia Baldwin Aronow:
The Endometriosis Foundation is working on an incredible campaign, PeriodNow. As you probably know, but not many people are aware, many women and young women are unable to afford period products. Don’t have them available at their fingertips at their schools and rely on literally makeshift things to get them through the month.

I know that going to the store, those things are very expensive sometimes and if you’re someone with something like endometriosis, you’re using a lot more product than maybe your average person. So we’re working on this campaign to provide those products in areas that need it most, young women who are unable to access those products and providing them with the basic human need and right to have access to these products as a woman through this part of our lives that just happens. We can’t help it. It’s really awful that people have to experience that, and it’s not really fair. That is the goal here is to provide those to women in areas that are not able to access them or afford them.

Sabrina Korber:
It’s such a surprising difficulty. You think this is happening in underdeveloped countries, but this is the United States, and everybody should have the right and the means to get those products that they need, that we take for granted.

Alaia Baldwin Aronow:
Absolutely. I think people forget that we’re not a third world country, but there’s a lot of people in poverty or in need of very basic human needs such as period products, or food, whatever it is. It’s a really necessary action to be taken.

Sabrina Korber:
Right. Well, Aaliyah, thank you so much for spending time with us.

Alaia Baldwin Aronow: Thank you.

Sabrina Korber:
It was really great to see you and hear about your experience. Of course wishing you the best of luck in your new chapter as a mama.

We’ll be anxiously awaiting the cute baby pictures.

Alaia Baldwin Aronow:
Oh, yes.

Sabrina Korber:
We will follow up to hear if labor pain is worse or better than endometriosis.

Alaia Baldwin Aronow:
It’s been my biggest question, for real. We’ll see and I’ll let you know.

Sabrina Korber:
Okay. Sounds good. Thank you. Take care.

Alaia Baldwin Aronow:
Thank you so much.