Rebroadcast: What Pregnancy can look like when it started with Undiagnosed Endometriosis: Julia's Story + Dr. Insights, Part I

Pregnancy involves massive changes, and for some of us, one of the first hurdles is overcoming issues that have developed in our bodies that make getting pregnant and being pregnant difficult.

On the road to becoming pregnant, today's guest learned that she had endometriosis, an issue that she'd painfully lived with for years without a diagnosis, and which required surgery before a pregnancy could develop.

She also shares how the pregnancy and birth fulfills an earlier premonition. 

Women's health, especially around fertility and pregnancy has not historically gotten the attention. It deserves.  I've started a new podcast called Making Sense of Pregnancy in which I'm tracking the impressive progress. That's been made more recently in these areas. You can catch my new show. Making Sense of Pregnancy here: https://podcasts.apple.com/nz/podcast/making-sense-of-pregnancy-what-experts-want-you-to/id1779600854

Transcript

[00:00:00] Welcome to what you didn't expect in fertility, pregnancy, and birth, how we think and feel about this enormous transition often lives in the gap between what we expected and what we actually experienced. This gap exists in part because of how we tend to talk about and portray these events. Um, all kinds of media. In a one dimensional way. 

Everything was amazing. But it's more often the case that there are beautiful things that happen. And at the same time, Really challenging things that happen. This show shares true experiences, both the easy parts and the difficult parts and how we manage what we didn't expect.

I'm your host, Paulette communica. 

I'm a writer and an economist and the mother of two girls. And I met many, many challenges in this process. None of which I expected. Pregnancy involves massive changes. And for some of us, one of the first hurdles is overcoming issues that have developed in our bodies that make getting pregnant and being pregnant difficult. On the road to becoming pregnant today's guest. Learn that she had endometriosis an issue that she [00:01:00] painfully live with for years without a diagnosis. 

And which required surgery before pregnancy could develop. 

 I'm also including the insights of a functional nutrition and integrative women's health expert to talk about endometriosis. Women's health, especially around fertility and pregnancy has not historically gotten the attention. It deserves. I've started a new podcast called making sense of pregnancy, which I am tracking the impressive progress that some scientists are making in these areas. You can catch my new show, making sense of pregnancy on apple podcasts and Spotify, and wherever you get your podcasts, I'll leave a link in the show notes. Let's get to today's inspiring story. 

Can you introduce yourself and tell us where you're from? 

Hi, I'm Julia Motika, and well, I'm from western New York. I'm from Binghamton. I've lived in New York City for quite a long time, so that's my home. 

Nice. Let's talk about family.

Do you have siblings? I do. [00:02:00] I 

do. I have a younger brother who is about four and a half years younger than I am. And then I have what I like to call my adult onset family. My mom remarried when I was in my twenties. And so I wound up with four additional step siblings. But we have a unique relationship because we didn't grow up together.

We kind of pal around at the holidays and have this kind of regard for one another as slowly chosen family. But, , my deepest sibling relationship is with my biological brother. 

And coming from that setting, did you think, oh, I'm definitely gonna have a family? 

Gosh, it was a complicated journey for me.

My family history was sort of thorny as a child. Both of my parents are wonderful and complicated and, I'm a product of an early divorce, a couple, and it was a very acrimonious divorce. And both of my parents went through long roads toward becoming who they are now. In some ways, much changed from when I was a kid, and so when I was in my teens and early [00:03:00] 20s, I wasn't sure that actually having a child in any way, particularly a biological child, is going to be right for me.

I also have an illustrious history of mental illness in my family on both sides, and I have been a primary caretaker to my father, who was sick in my late teens for a while, so there was a period of time for me where I looked around and I thought, you Maybe this genetic line doesn't need to continue.

Maybe we're okay. Maybe it's okay to finish it here. And I wasn't sure that I needed to do any more caretaking, to be honest. But there was a moment, or a series of moments, I suppose, in my early 30s. I was partnered with my current husband and he really deeply wanted children. And I felt it wasn't a sense of negativity around it, but I felt profound ambivalence and I started to really consider why that was the case and unpack my own family history and the sort of intergenerational legacy of mental health challenges.

[00:04:00] And I started to have these dreams. of a little girl with big, big dark blue eyes and like a mop of curly dark hair. And the dreams were very strong. She was always about 18 months or so and I would always wake up and feel like the imprint of a body on my body. Wow. And, they came every, it was like, it was over the course of over a year, I would have them sort of intermittent.

And then one night, I had one of those dreams, and I woke up in the morning, and she was with me all day. It was like my little silent passenger, she was my constant companion. And I, from time to time, worked as an audiobook narrator, so I was recording a book. That day, and I was in the studio, and I was about halfway through my session, and, and she vanished.

The feeling just disappeared. Whoever she was, she was gone. And for the first time, I felt this enormous space of regret open up inside [00:05:00] my body. And I thought, Oh, if I don't attempt to become a mother somehow, I will regret this. I will regret it. In a way that I hadn't experienced before, and I wasn't sure yet at that time how motherhood would come and how we would proceed, but I knew it was something that I wanted to, , watch for.

And so we did. 

That's amazing to have a feeling of pre regret. 

Yeah, it was really, it was like advanced regret. Congratulations. It's like, you know, I'm that deeply Jewish. I have like regret in advance. 

I see you, I see you and , I'm applauding. That's well done. That's, this is very good.

thank 

you. 

It's a skill. It's a special skill. So, when you guys decide to get pregnant, what are you imagining pregnancy will be like? , 

to be honest, I always assumed, ha ha ha ha, that it would [00:06:00] be like falling off a log. I was like, ah, healthy, I've been practicing yoga. I've got, I'm really aware of my pelvis.

I've got a Kundalini. I know what to do with my tongue. Like it's all, , I'm available to myself. And I like to think of myself as being very physically aware. And so I was like, it's going to be great. And it wasn't great. It wasn't easy. And it, it started to take us quite some time.

And initially sort of like, well, that's just the right baby is going to come. I've got very woo about the whole thing because it all came from a dream. So why not? Right. And then it was almost two years after we decided to start trying to have a baby that we ultimately decided to see a fertility specialist.

And now again, , pride goeth and all of that. So I, and my husband both assumed. That it would be an issue of his because he's a lifelong type one diabetic. And so we were like, well, you know, [00:07:00] with many type one diabetic men, the sperm count can be an issue., there are all kinds of complications that come with that particular chronic illness.

And so we both thought probably that's going to be the case. 

So real quick here. Thank you. Type 1 diabetes is an autoimmune condition that affects someone's ability to produce insulin, and you'll want insulin to help move sugar from your blood into your cells. Without it, you leave too much sugar in the blood and not enough in the cells, which is required for energy.

Having this condition can affect the process of sperm development in men, and sperm require a lot of energy to be good swimmers, and this insulin issue affects their ability to do that.

, lo and behold, we both got checked out. Cause I was like, I'll go too. I'll get checked out too. Why not? And they did a vaginal ultrasound at this wonderful clinic in New York City that we went to. And within about 45 seconds, the clinician, the obstetrician went, Oh, well, there's your problem. And I went, excuse me, he said, well, you have a [00:08:00] huge endometrioma.

 Eclipsing your left ovary., and I have never heard that term before. What, what is that? What do you mean? And he describes it in endometrioma, it's technically a cyst, but it's really just a sort of a stack of layered endometrial tissue, of uterine tissue, that has grown outside of the uterus. And , he said, Well, that's we're gonna have to remove that.

And he said, Do you have endometriosis? And I said, Not to my knowledge. And he said, Well, do you tend to have extreme pain with your period? And I burst into tears. Now, The backstory of that is that I had gone to multiple doctors for decades with unexplained extreme pain during menstruation. I had sciatic pain, I developed nerve pain in my back, I would have to sit down in the aisle of the drugstore in the middle of a cramp in order to not lose control of my legs sometimes.

I had a really severe pain, but it had been [00:09:00] dismissed and dismissed and dismissed to the point that I just stopped mentioning it. And have kind of forgotten about it completely just was living with this debilitating pain every month. And so when he asked me, I thought, Oh, Oh, I'm so aware of my body and yet have decided to numb myself to this incredibly important piece of physical information that I receive month after month because everyone outside my body had told me it was nothing.

Today we are lucky to have the founder and CEO of Integrative Women's Health Institute on our show, Dr. Drummond. Thanks so much for coming on. So why don't you tell us about your training and your Institute? 

Sure. So I started my career a little over 20 years ago. My initial training, is as a physical therapist and I practiced, pretty direct hospital and clinic physical therapy for many years, more recently got a doctorate in clinical nutrition [00:10:00] and also became a board certified health coach and about 12 years ago, started the Integrative Women's Health Institute as a training school for my colleagues to learn about functional nutrition in women's health.

And we also have a flagship women's health. Coach certification, which is the only health coaching certification that has that third party board approval in the world that focuses on women's health. And so I've been doing that for quite some time now. And I also maintain a health coaching and clinical nutrition practice around pelvic pain and endometriosis.

So let's start with some basic stuff. Can you define for everyone what endometriosis is? 

Yes. Endometriosis is a disease process where you'll have these lesions that are made of tissue that is very similar to, although not exactly the same as the tissue that lines the inside of the [00:11:00] uterus. And that's called in clinical terms, the endometrium, which is where it got the It used to be thought that These lesions were a consequence of what's known as retrograde menstruation, meaning that the menstruation was going into the body instead of out of the body and that the endometrial tissue was growing and forced growing outside of the uterus.

But that theory has been pretty strongly disproven in the last, Um, and it's not fully known where these lesions come from, if you will, but there is a genetic component. So about 10 percent of, people with uteruses around the world have endometriosis and about 9 percent of uh, female fetuses or fetuses with uteruses have endometriosis at birth.

So these lesions exist. In about that 10 percent of the female population [00:12:00] throughout life. So there's absolutely a genetic component, but there's also an inflammatory and very likely autoimmune component. So it's a multifactorial disease in terms of how it's expressed. And it's tricky because there's staging of this disease in terms of extensiveness throughout the body and severity of the lesions, but that doesn't very well correlate with symptoms.

So people can have a lot of endometriosis everywhere and have very little symptoms. They may not even know they have it unless they were struggling with infertility or they just simply may never know they have it. And others can not, you know, maybe when the surgeon goes in to remove the lesions, doesn't see a lot of lesions, but a person can still have real severe symptoms.

Have they done a vaginal ultrasound before? 

The last time I had gone , to the OBGYN, specifically for pain. They did do a vaginal ultrasound. There were no endometriomas at that time. So I don't [00:13:00] necessarily fault the doctors that didn't know what to look for or how to look, but I do, have a large finger wag for the kind of culture of, women's medicine that has spent so much time.

So much time pretending it doesn't exist. That feels problematic. 

The dismissal 

is so frustrating. Yeah, well this is just it. I mean, I was told repeatedly, right? Well, you probably just have a low pain threshold. Some women just have more painful periods. And I remember, because , I'm slight of build and I'm tall and, it's not that I present as frail, I'm quite strong, but I present as willowy.

I suppose. And so people would look at me and hear about my pain and go, No, this is probably just a little, she's probably weak. And the truth was, I was in horrible, horrible, horrible pain. And I will say that on a pain scale, right? This is the reason we have a subjective pain scale, because it shouldn't [00:14:00] matter if my 7th on the pain scale is your 2.

I'm still at a 7th. And it's not for anyone else to judge what that seven does or doesn't mean about my strength. It means nothing, , so the, the basis for their statement, I take issue with. 

I brought this issue of dismissing pain to Dr. Drummond. Maybe we could talk about why it's so hard to diagnose exactly or why women's pain is being dismissed and whether that's like a larger cultural thing or something specific to endometriosis.

Yeah. So that's absolutely a larger cultural thing that women's pain is just generally dismissed. In fact, the word hysteria essentially comes from someone, , you're crazy if you have a uterus, right? That's hyster is means uterus in Latin. And it sort of points to how women are perceived in general, when it comes to pain, this is.

Significantly worse in women of color, which is problematic. The patient you're talking about right now is her experience around, [00:15:00] it's normal to have painful periods. You're fine. You're probably just sensitive to pain. We don't see anything is extremely common as an initial response. And in fact, even now, so I've been doing this for just over 20 years.

And it used to be 15 years to diagnosis when I first started and now it's still pretty bad. It's 12 years to diagnosis. 

Ultimately, right? Upon receiving the diagnosis, did undergo a surgery and, spent four hours. It's usually about a 30 to 45 minutes surgery. And mine took four hours. , it turned out that I had five endometriosis, all between five and seven centimeters in size.

And they eclipsed one of my ovaries, one was attached to my bowel, one was attached to the outside of the uterus. They were everywhere, below my pelvis. I also had two small fibroids and I had scar tissue that was so profound that it was completely burying and occluding one of my fallopian tubes.[00:16:00] 

It's great that there are things you can do to put endometriosis at bay, like surgery. I brought this question about efficacy to Dr. Drummond. So Julia had surgery to remove her endometriosis and I'm wondering, won't it like the tissue line of the uterus grow back? 

Maybe. It depends on a couple of factors.

So when I first started doing this, the kind of surgery that was done , was called ablation surgery where they would burn off the lesions. Fortunately, well, this is still done, but it shouldn't be. If your surgeon says they're going to do ablation, run out of that office. So what you want is excision surgery where they actually cut out the lesions in the same way that cancer is cut out and the bed of it is cut out the roots.

Now there are kind, there's a kind of endometriosis called deep infiltrating endometriosis that again, cutting it out is, is key, but sometimes that's not fully possible. Sometimes even with great excision surgery, just like with great cancer surgery, [00:17:00] it grows back sometimes. Sometimes the surgeon just missed an area where maybe they didn't see it.

It was too small and it grew, grows in another place. And sometimes they just didn't see it yet. And it grows in another place. But what I would say is that in the first half of my career, I commonly saw people who've had 15 endometriosis surgeries, just a surgery every year. And they just kept going in, burning it off, trying again, my clients and patients primarily see excision surgeons.

 I either see them after or before and after ideally. , if they have surgery, which isn't always appropriate, varies, , but a lot of the time it is and that, you know, I might see someone with a maximum of maybe three surgeries in a lifetime, but it's much, much more common to see just one surgery.

So I I had finished the surgery and I was told that even with the surgery, our odds of becoming pregnant naturally were relatively low. I was 35 at the [00:18:00] time and I remember kind of lying in my bed in the week after the surgery. Sort of, not semi lucid, but I was taking my pain medication and sleeping a lot , and was thinking a lot about, you The women in my family who I'd referenced before who had struggled so mightily with mental illness and I had this sort of strange experience where I felt like they had kind of like I had cleared a pathway and it was as though some of the kind of historic pain of the women in my family had been excised along with these sort of lumps of tissue.

And so I wondered what would happen. And at the same time, we went to an adoption fair and we started foster care paperwork. And I sort of said, listen, however you come, little child, you are welcome. And we decided to do four rounds of intrauterine IUI. 

Let me say one thing here about the doctor's predictions.

I would prefer a world in which the doctor said, [00:19:00] all we have are averages. And on average, women who are 35 and have endometriosis and the husband has diabetes, on average, it is harder for those couples. We do not have a crystal ball and we cannot predict what will happen in your case. So we can give you the average and then you can make your own kind of conclusion.

But to say you will have a hard time is frustrating, right? Because those words have effect, right? So Yeah. 

Yeah. Well, and it creates a situation in which you feel like you're living out a preordained path, right? Like, oh, we will have a hard time. This will not work or, and I wonder for how many couples or how many people seeking to become parents, that's the end of the story because they take that word and go, okay, well, I guess we tried.

Instead of continuing on their own path in their own way, you know, so for us, I didn't feel ready to completely let go of the idea of biological motherhood, [00:20:00] but I also felt it was important to look everywhere as I'm a firm believer that there are many, many ways of becoming a parent in this life and you get absolutely the right child.

No matter whose body they have originally come out of. So we went to this adoption fair and started, I went to the first foster meeting and started writing all the paperwork. And meanwhile, we did our second IUI attempt. And, , about five days after that attempt. I had this feeling of like, I wonder, feels a little, I just feel a little something.

And, and I thought, you know, don't, that's silly. But lo and behold, about a week after we started our foster care paperwork, I turned up pregnant. And, after all of the difficulty, In becoming pregnant and in, in finding our way toward pregnancy, my pregnancy with my first child was really just [00:21:00] juicy. It was a good, it was a really peaceful time in my life.

Now I had profound nausea. It was not, it was not so fun at different moments, but it was an uncomplicated pregnancy. We decided not to learn the sex of the child, so we didn't know who we were gonna get, who was coming. We had picked out a name for the baby, and for on and on and on, and everybody thought it was a boy.

I thought it was a girl who, who, who. And then the day before her due date, , I went into labor and I went into back labor and had really like a 36 hour. saga of childbirth. 

Before you, , get to the birth thing, let's talk for a second about what you thought it would be. 

Oh, 

yeah. 

, I actually thought that my pregnancy would feel weirder to me, if that makes sense, because it's such a strange thing that happens in the body.

But what I ultimately wound up feeling was this, it felt Very, very natural to me to be [00:22:00] pregnant with my first child. The second child was a different story. Didn't feel that way second time, but the first child, I was like, , I was designed for this. I felt really easy in my body. I'm the kind of person who.

I always have 12 different things happening. I do a lot of different things in my life, and I like it that way because my mind tends to function best when I have a lot of different things spinning in the air around me. During the pregnancy, it was the one of the first times in my adult life where there was nowhere else I wanted to be.

There was nothing else I wanted to do. I was content to just be in that moment growing that baby. It was a profoundly peaceful time. Which I really didn't expect. I didn't anticipate that it would feel that way to me. So when it came time to, to have the baby, to, to, to birth the human, I went into it actually thinking it would feel easy.

I had done hypnobirthing. I had been sitting on my birthing ball and bouncing and moving my pelvis and I'd gone to prenatal [00:23:00] yoga and I was like, I was really, I was ready. I was like, my pelvis is ripe. It's a blossoming flower. It's great. And then the labor actually began. Like, this is a disaster.

This is really awful. Because , we were set up fine just fine. And it was very tough. , there was, there was a lot of vomiting. There was a lot of the labor began really fast and it slowed back down. I had a, a, a really supportive, , birth team. My husband was deeply supportive. I had a doula who I treasure, who, , really , was a seasoned person in the birth world and was able to shepherd me through the challenging moments.

And my, my house patrician. Was also remarkable, was, was deeply patient and present with me and ultimately manually dilated my cervix a few times and in the sort of the continued hope of avoiding a cesarean, which we ultimately did avoid, which had been my hope. So I had planned for an unmedicated birth at a birthing center, [00:24:00] and we wound up at about hour 32 transferring to labor and delivery so that I could receive an epidural.

Ultimately, interestingly enough, the epidural was what allowed my body to relax enough to let the baby down. So the baby was born vaginally after 30, almost exactly 36 hours, like 36 hours and 10 minutes. And she, as she was coming out of my body, the doctor,, said, and because I had the epidural, I was very present for this period of time.

She said, Wow, that's a lot of hair that the baby had. And I kind of laughed and I said, Oh gosh, I wonder who she is, who they are. Oh, we didn't know it was a she yet. And, , as the baby was being born, my doctor said, Hey, lean down and catch your baby and helped me kind of move the child onto my chest.

And there was this big mop of black hair. that turned curly almost immediately and these huge dark blue eyes looked up at me and I went, Oh, there she is. [00:25:00] 

Loose bumps. Oh my God. Wow. 

It was really cool. And so the baby in my dreams had always been named as May. And of course now that is my child's name and she always had to be and she waited for me.

Which, which I've always been really grateful for, because it's a special gift for me to get to be her mom. And then we thought that was it. , we toyed with the idea of a second child. I had been told once I started menstruating, again, it was sort of the definitive pronouncements of the medical industry here.

I had been told by several doctors. That the year after I started menstruating again was the most fertile window in which I could become pregnant. And after that year, it would probably become difficult if not fully improbable, so about 14 months after I had as may. I, I started to menstruate and we were like, okay, let's do this.

Let's [00:26:00] make this happen. And nevermind that I didn't feel ready. Nevermind, nevermind that my child didn't feel, none of us were ready to do it, but we decided to go ahead and try. And very quickly, it turned out that, my left fallopian tube had occluded again. , but it was no law that nothing could pass through one side.

You know, I was 37, 38, something like that. I don't remember anymore now, but I was getting older. 

Is it because of endometriosis? Is that what's going on? Okay. 

Yeah. I mean, it had been buried in scar tissue. And even though they, again, there was no scar tissue evidence, the tube is so small. I mean, if you , consider like angel hair pasta, right?

Yeah. Yeah. teeny tiny. And so it doesn't take a lot of pressure to, to clamp it down. 

This is starting to sound like a design flaw 

for all of us. It really, I mean, you would think given how long the human race has managed to survive, that those tubes would be a little more resilient. And maybe they are, I guess, maybe if you consider the other things they undergo, but, the scar tissue isn't, is not an easy thing.

I [00:27:00] interviewed a reproductive endocrinologist and she said something like fallopian tubes, if you look at them the wrong way. They just, they collapse. So I, I feel like our assessment here is, , validated by someone who's seen them. 

Yeah. That's really, thank you. That's useful to know. You know, we talked about it and at the time my husband was really in favor of pursuing IVF, which we were told had a, we had about a 20%, , shot.

at a baby with IVF. And I sat with that idea for a while. And I have friends for whom IVF has been extraordinary, who have beautiful families. I champion it. I think if it's the right choice for you, it is a fabulous choice. It was not the right choice for me. I had a lot of anxiety.

I've had some hormonal imbalance in the past and I just didn't feel, , I didn't feel good about making that choice , for my own health. And I already had one child. that I needed to be present for. And so I decided not to do that. , and it was an extremely challenging time in my marriage. [00:28:00] I think my partner, my husband felt at the time that I was kind of, that it was, it was sort of my way or the highway in a certain sense.

And, it was being my body, it was, and that was very hard for him. , to feel he had, no agency and, , also hard for me to feel that my body was somehow secondary or not, or my feelings around my body were not valid because they negated something for him. , it felt like to him and, so we let it go.

He traveled a lot. I worked a lot. I spent time with our daughter. We kind of found our way back to each other.  

I'm going to stop my conversation with Julia here for today. I really appreciate her sharing her experience. Of considering pregnancy, how doctors, appraisals of her situation affected her thinking and the success she ultimately had with her first child. One thing, her story illustrates is that there's no easy route to creating another human being. And it's a [00:29:00] very difficult to predict what the path will look like. Even though Julia had a sense of her daughter before she arrived. 

She couldn't have predicted what it would look like to actually have her sensation. And the reality of her daughter meet. Thanks also to Dr. Drummond for sharing insights on endometriosis and how it's treated. Julia's experience of endometriosis is likely not unique in a lot of ways. The difficulty to diagnose and treat our common theme for women who experienced this condition. If you're interested in what scientists are doing right now, that way impact how endometriosis is treated. Check out my new podcast, making sense of pregnancy. Or I interview scientists doing cutting edge work around fertility and pregnancy. 

. I'll include a link to the new show in the show notes. The episode that touches on endometriosis will be released in January 22nd. You should check it out. Thanks for listening. If you like the show, please share it with friends. We'll be back next week to hear the rest of Julia's [00:30:00] inspiring story.