Breaking the Taboo Around Pregnancy Loss with Chelsea Leyland

Trigger Warning: This episode contains sensitive topics related to pregnancy loss and fertility challenges. Listener discretion is advised.

In this deeply personal and powerful episode of “On Health,” I sit down with Chelsea Leyland, a globetrotting DJ, mother, epilepsy and endometriosis activist, documentary filmmaker, and menstrual health entrepreneur. Chelsea shares her journey through endometriosis, pregnancy loss, and becoming a mother and the importance of breaking the silence around these common issues so we can get the support we need – and so we can support each other with compassion and understanding.  

We dive deep into Chelsea’s… 

• Long struggle with endometriosis – and her path to finally receiving a correct diagnosis.
• Challenges finding effective treatments – and what finally helped relieve both seizure and endometriosis symptoms. 
• Pregnancy losses and the importance of open dialogue rather than taboo and silence. 
• Emotional journey following her miscarriages, the steps she took to honor her losses, and how she found the courage to try again.
• Decision to speak publicly about her experiences with endometriosis and pregnancy loss and why she believes it's crucial to reduce stigma.
• Heartfelt words of wisdom for women currently grieving a pregnancy loss or struggling with infertility.
• Daily wellness routines that are essential for managing her chronic conditions while also balancing motherhood – and how she deals with ‘s#it days.’
• The power of community and shared experiences in healing and empowerment.
• Chelsea's advice to her younger self and thoughts on resilience and hope.

Resources Mentioned:

• Looni Menstrual Health Company
• Spirit Babies” by Walter Makichen
• Dr. Ethan Russo's Research [Clinical Trials on Epidiolex]

Thank you for tuning into On Health for Women. Remember, you are not alone on your journey, and a supportive community is here for you. Please connect with me on social media. Your stories matter and can provide comfort and support to others, too.And don't miss an episode! Subscribe to “On Health” on Apple Podcasts, Spotify, or your favorite podcast platform. Follow Dr. Aviva on Instagram.

___________________________________________________________________________

The Interview Transcript

Aviva: Hello listeners. This is Aviva Romm. In this episode, “Breaking Taboos Around Pregnancy Loss,” my guest Chelsea Leyland and I delve into sensitive topics, including pregnancy loss and infertility, in some explicit detail. Our intention is to bring women’s silent suffering out of the shadows and into the light, sharing this content in the spirit of healing and compassion. However, I understand that these topics can be deeply triggering for some, so please be mindful of your own well-being and proceed if it's best for you to listen to these difficult topics. I hope you find this episode supportive and healing if you do listen, and I look forward to sharing this episode with you.

My guest today, Chelsea Leyland, is a British DJ, actress, and epilepsy advocate known for her dynamic presence in the entertainment industry and her passionate activism. With a career spanning over a decade, Chelsea has performed at high-profile events and venues worldwide, captivating audiences with her eclectic music selections and vibrant energy. Beyond the DJ booth, Chelsea has made a significant impact through her advocacy for epilepsy awareness, drawing from her personal experience with the condition. She co-founded the non-profit organization “Women for Weed” to support medical cannabis legalization and access, highlighting the therapeutic benefits it offers to those with epilepsy. Additionally, Chelsea has been open about her journey with pregnancy loss, using her platform to raise awareness and support for others experiencing similar challenges. Her dedication to her craft, her cause, and her openness about personal struggles make her a compelling and inspiring figure in both the music and advocacy communities.

Chelsea, you are a globe-trotting DJ, which I am so excited about—the music itself is so exciting to me that you do that. I'm the resident DJ in my car. Just so you know, you're an epilepsy activist, you're outspoken about medical cannabis, you're a documentary filmmaker, and now a menstrual health entrepreneur.

It sounds like your many years-long journey to getting your endometriosis diagnosis really tipped the scales toward women's health and hormone activism. I'm so excited to have you here. So first, I just want to extend a giant welcome and thank you for joining me today. I'd love to hear your story of how you've evolved into this activism work that you're doing. Then I want to talk all about your pregnancy experiences and losses and how we can really break taboos around some of these conversations that are keeping women from getting the diagnoses we need, but also the care we need.

Chelsea: Well, thank you so much for having me on the podcast. I am a huge fan. As I've been telling you offline already, I'm a huge fan of your book on herbalism; it has been a real bible for me, and it's one of those books that makes me so happy and joyous every time I open it. And also, thank you for really holding the torch when it comes to breaking taboos in women's health and bringing a lot of these topics to the forefront. A lot of our passions are very much aligned, and my journey with endometriosis has this sort of layer underneath, which I think is the other chronic condition that I suffer from, which is epilepsy. I bring that up as well because it really is the start of my journey with my health and with healing and my entryway into alternative medicine. I have a type of epilepsy which is called juvenile myoclonic epilepsy (JME). I was diagnosed as a teen.

It did take some time to reach the diagnosis, and I was put on very harsh pharmaceutical drugs known as anticonvulsants. I mean, it's hard enough to be a teen—I always say that, but it's so true. Being a teenager is just tough. And I think being diagnosed with a chronic condition is really tough. I think when I received that diagnosis, what was especially challenging about it is that I had grown up with an older sibling, my sister Tamin, who has a more severe form of the condition. Neither of my parents have epilepsy, so it was obviously a shock that my sister has intractable epilepsy, which is drug-resistant epilepsy. I was cognitively healthy up until this time in my teens when it started manifesting, and I started getting these strange symptoms like myoclonic jerks. I now know them to be a type of seizure.

I was photosensitive, so I was triggered by dappled light coming through the trees. And I think it was very, very hard for my family just to stomach the fact that I had this condition and a completely different form of the condition. That was the beginning there. I think it was particularly challenging to be put on such harsh medicines. I'd been brought up in a family and an environment that was very into alternative medicine. I think I had my first acupuncture session probably at the age of 12 or 13. My mother was a gardener and a florist, and so I grew up with that love of plants. My mother studied homeopathy briefly. She also worked as a medium and an animal healer. That was my environment. And I think this idea of having to take something, which I had no choice but to take for my own safety, was really tough.

And I think just trying to establish who I was on this medicine, what were the side effects of the medicine, and what was just me. And that really was a secret that I lived with for a long time. I didn't feel like I was able to talk about it. I think it was very, very painful. And that's as much because of seeing my sister suffer. My sister can have up to a hundred seizures a day, and she's hospitalized throughout the year. The doctors told us she wouldn't live past 18, and she just made 40. So that's an incredible milestone. But at about the age of 28, I was introduced to cannabinoids, which I'm sure most of your audience will be familiar with—molecules within the cannabis plant—that had a profound impact on my condition. It ended up being a more efficacious form of treatment for me than the drugs that I had previously been taking, not only in quelling my seizures but also treating anxiety and insomnia and just supporting some of the comorbidities that came with epilepsy.

Aviva: And I just want to say for those who are listening, because I know that my audience is certainly very out-of-the-box and progressive, and then there are always those people that are like, “Yeah, but does cannabis really do all that?” and “Oh, people just justify their cannabis use.” And I just want to emphasize first of all that anyone's choice of cannabis use is their choice. So none of us should be judging. And also, with epilepsy, there is probably more substantial data for the benefits of cannabis and cannabinoids for epilepsy than there is for any other condition. And one of my dear friends and colleagues, Dr. Ethan Russo, is actually one of the leading researchers and has helped to develop pharmaceutical entry points for this. So I mean, it's really quite amazing and fortunate that you found that because many of those anti-seizure medications are very blunt to your emotions and feelings, and they can be very, very difficult to be on and can have substantial side effects. So it's phenomenal that you found that.

Chelsea: I was really fortunate, and to your point, my neurologist in New York, who is fantastic—I waited my whole life to find a good neurologist—and Dr. Orrin Devinsky actually led the clinical trials for a drug, an epilepsy drug known as Epidiolex, which is, as you probably know, essentially just an isolated molecule of CBD that has gone through double-blind, placebo-controlled clinical trials. So we are making headway in that area. And what I will say—and I think this is the challenging part often when I talk about my journey—is that cannabis is like any other medicine in that it can work well for some and it might not work well for others. I always like to say that to try to be sort of responsible in sharing my own experience because I've met people with the same type of epilepsy as me that haven't been as fortunate.

Perhaps this cannabis has helped them manage some of their stress or improve their sleep, but it hasn't been effective enough to come off of their anticonvulsants. And obviously, anyone should always consult their neurologist. But I think, as I'm sure you can imagine, this moment for me was incredibly profound—to discover this medicine that just did so much more than anything I could possibly imagine. And I think it really was a pivotal moment of trusting myself because everyone around me told me that I was completely crazy—my family, my physician—and I just kept pushing forward with “I know my body and I know what feels right, and this feels like the right medicine for me.” And eight years later, I'm still seizure-free, and my life has really been transformed. And that doesn't mean that I don't still experience challenges. I still have myoclonic jerks, a type of seizure.

I haven't had a tonic-clonic, but it's challenging, and I'm a new mom and everything. But on this journey, I decided to start making a documentary. It's really a love story about two siblings and what it's like for one sibling, which is myself, to have access to this medicine essentially due to my postcode, and my sister doesn't because she lives in the UK and she lives in full-time care. And we set out to make a documentary. It was going to be a very educational documentary about the landscape of medical cannabis and epilepsy. And this was a six-year project. Halfway through, we decided to make the film focused on our sibling relationship and what it's like for a family to live with someone with such severe epilepsy. And I really thought that at the end of making this documentary, my sister would have access to cannabis. And unfortunately, that hasn't been the case. That was kind of the first chapter of life, I think, with epilepsy and deciding to make this documentary

, which has just come to fruition, and it's called “Sisters Interrupted.”

Aviva: As a physician having worked with teenagers with chronic diseases like type 1 diabetes or cystic fibrosis or seizure disorders, I really have seen how much those diagnoses can create a confusing schism between your sense of self and accepting the reality of this diagnosis. And many teenagers don't take their medications because they don't want to identify as having that medical condition. So it's almost like we could have a whole show about that. And so I'm really glad that you talked about it and have this documentary. And you were saying that this is a big underpinning for your eventual understanding and diagnosis of endometriosis. How did that evolve?

Chelsea: I guess simultaneously to epilepsy, I think my symptoms started a little later, probably around the age of 15. I remember my periods becoming extremely painful, and then it was really just a downward spiral from there. And the pain became increasingly worse. I started passing out from my menstrual pain. I was vomiting, lying on the bathroom floor. I started to be hospitalized from being in this much pain, and I repeatedly went to my general practitioner. I went to my OB-GYN, and I kept trying to communicate that I didn't feel my period pain was normal. And you know what really sucks about this whole thing is this sounds like such a crazy and shocking story and experience for anyone who doesn't have this condition or doesn't have a menstrual health condition. But the average diagnosis time for endo is 10 years. And my story—I am not unique.

Aviva: No, not at all.

Chelsea: Ninety-eight percent of people I connect with tell me the exact same story.

Aviva: I mean, that's statistically known, right? In the US, seven to 10 years; UK, 10 years. And then there was a study looking at physicians' responses to diagnosis, and something like 70% of physicians said they didn't know how to diagnose it, but even if they did, they wouldn't know what to do next. And yet one in eight, one in ten women experience it.

Chelsea: I mean, it's wild. It's like I still am, and I share these statistics on a weekly basis, and when I say them out loud, I still find them unfathomable because this condition is as prevalent as diabetes. For every dollar of research that's put behind endo, $200 is put behind diabetes. And you've got to ask yourself why that is. This is a condition that affects women, and there just hasn't been enough research. We were excluded from clinical trials up until 1993. Go figure. This is the situation that we're in. And I experienced that medical misogyny and that gaslighting firsthand. I remember male physicians mostly saying to me, “Well, if you don't take birth control, synthetic hormones, then you can expect to be in pain because periods are painful.” And it's just like that's where it all starts. The normalization of pain for women using birth control as this one-size-fits-all approach.

And I'm not demonizing birth control because it's a fantastic tool when used appropriately. And I think eventually, 10 years later, my OB-GYN said to me, “You might have a condition known as endometriosis, but I don't think you have it, but we will do a laparoscopic procedure to see if you do.” And lo and behold, I had endometriosis and was covered in it, and I had a very unsuccessful surgery. This was a number of years ago now, but I had some pain relief for six months, and then it sort of just came back with a vengeance in a different area. Looping back to my journey with epilepsy, at the time of shooting the documentary, I was really, as one does in this day and age, took to social media to shout from the rooftops about my experience with cannabis and was fortunate enough to be—I was being sent a lot of products to try and test and experiment with. I was trying everything in a way that probably now I would be a little more cautious knowing what I do about ingredients and supplements. But back then, I was naive, and I was excited, and I was just trying everything.

Aviva: You weren't a mom yet.

Chelsea: I wasn't a mom yet. Anyway, I noticed my endo pains were improving. I didn't really know why. I thought maybe it was due to age, that my hormones were somehow recalibrating. And then I started to see some interesting research coming out of Israel specifically on endometriosis and cannabidiol. So that made me—it was like a penny drop moment of “Aha, maybe this is why my endo might be improving.” And I then started using cannabinoid suppositories. So I was using cannabinoids intravaginally, having that more localized effect as well as the systemic effect. And that was really game-changing for me and my endo. And I think these experiences really just started to put me on a path of understanding and appreciating and having so much wonder when it came to other botanicals. And I just decided to become sort of my own best advocate and do my own research. And I lost a lot of faith and trust in, I guess, allopathic medicine. And I think that's sort of when you probably came into my life, and I bought your first book, and I really just found this sort of love of plant medicine. And this led me to my next chapter, which was becoming an entrepreneur and co-founding Looni, which is a menstrual health and wellness company, which I guess we'll dive into.

Aviva: No, it's such a powerful story, and you covered so many really important data points in there. And toward the cannabinoids, as we talked about with epilepsy, just for those of you who are listening, the research on endometriosis and endocannabinoids and cannabinoids is really substantial in that it's becoming evident that the womb endometrial tissue and the womb actually are very rich repositories of receptors for endocannabinoids. And there may be even some form—and I'm doing air quotes here for those of you who are listening—endocannabinoid deficiency in women who have endometriosis. So specifically, the use of cannabinoids may be particularly helpful. It's very helpful for period pain. There are a lot of conditions for which cannabis claims do not hold up, but when it comes to epilepsy and when it comes to period pain and when it comes to endometriosis, there's strong data, strong experience from women.

So it's something that I am quite a proponent of and talk about in my textbook, talk about in “Hormone Intelligence,” teach about in my women's herbal course because it's a medicine that has been very much demonized and maligned, and then also the claims exaggerated. It can be really helpful. I want to talk about your other baby-having experiences, and I want to just truly and deeply honor, first of all, how open and generous you've been with sharing your journey in public and how important that is as women—that we're sharing our honest and truthful stories, not just the pretty stories and the veneer—because that doesn't really—it can be aspirational and inspirational, but so many women are struggling with various kinds of losses and conditions. So you were diagnosed with endometriosis. You did find some relief using the medications we've been talking about, the cannabis we've been talking about, but you also experienced a pregnancy that was quite a shift for you in your life. Do you feel comfortable sharing that story with us?

Chelsea: Definitely. And I will just also, to end on the last point, say that I don't want any of your listeners to think that I found cannabis and my endometriosis has been completely healed. My pain has probably gone from a 10 to a four, which is huge, but there is so much that I have to do as somebody living with two chronic conditions just to feel well. There is so much, and I always describe it as a toolbox, and I'll talk about that more when we go into speaking about Looni and everything that I've discovered, which, again, so much through, I think, your teachings in your book. But I think that there's never just one thing. It's always, “How can I manage my condition holistically?”

Aviva: How do you cope with that? How do you cope with daily work? How do you integrate that into your self-concept? Because I hear from a lot of women when they have a diagnosis that they somehow don't feel like a whole or healthy woman anymore. So how do you hold that duality of being a really healthy, vibrant woman and having these parts of your life that you also have to integrate and manage, and then there's the work of it? So how do you balance all of that?

Chelsea: It's, first of all, accepting that you're never going to feel consistent. I think we all, even if it's sort of subconscious, strive for consistency in our energy levels, in our emotional well-being. And I think a lot of that, when you actually unpack it and break it down, is very much trying to fit a feminine energy into a male-dominated world where men have these daily hormonal cycles. And as women, we have these monthly cycles, and from such a young age, we are encouraged to suppress our menstrual cycle. We're putting young girls of 12 or 13 on birth control, and we are often meeting women at Looni who only have decided to come off birth control when they're trying for a baby. So they really don't have any idea how their cycles affect their daily life. But I think, first of all, these monthly cycles, we're constantly going through this rebirth process every month.

I feel so differently in my follicular phase than I do in my luteal phase. I think that's probably the case for most women. But as someone with endo, the extremities are not always welcomed, And in terms of having epilepsy as well, I feel like complete shit when I do not get seven and a half hours of sleep. Ideally for me, it would be eight hours plus. Now that I have a child, that is just not possible. But I try to prioritize sleep hygiene. I have learned the value of being in a restorative state and resting when I perhaps can't get the sleep, and just being a lot kinder and a lot softer to myself. I think community has been everything for me, and my husband is incredible. So this is not to talk shit on my husband, but I struggle. We've been together for six years.

I struggle to get him to understand what it feels like to be someone with epilepsy, what it feels like when I get six and a half hours of sleep or even seven hours, how much it affects me the next day. It affects my memory, my cognitive ability. So community is everything. And by community, I mean finding a community of people who understand you and what you're going through, whether that's because you have a condition like epilepsy or endometriosis or depression or fibroids or whatever it might be. I think the power of identification is so huge because you can't often get other people to understand you. And I think feeling understood and seen is everything, but I think just accepting that nothing is linear and that some days I'm going to feel fantastic and on top of the world, and other days I'm going to feel crappy and my output isn't going to be great. And rather than berating myself, I'm going to be a little bit kinder and a little bit softer and focus on stress management, incorporate a bit of mindfulness, something as simple as running yourself a bath that evening and down regulating your nervous system or cooking yourself a nourishing, grounding dinner that is something hot and warm and healthy. Just these small things.

Aviva: It's almost like wisdom for all women, right? Because at different stages in our lives, whether we're pregnant and we have the good days and the harder days, or postpartum or solidly on the other side of menopause right now, last night I woke up during the night and I was up for a while, and I was like, you know what? I'm going to actually open up an app on my phone, put in my headset, and just meditated. And it was like, okay, I'm not getting the sleep. And I can be all stressed about that right now, but I can also just be here in the dark with my eyes covered, nourishing myself and feeling calm and letting my nervous system be restored that way. But it's so easy to just be hard on ourselves and expect ourselves to live a linear life. We just don't. And I tell this to my patients all the time when they say—I'll say, “So what is your expectation of what health looks like?” And they do expect this sort of program of consistency every day. And I'm like, yeah, but we're humans, and we flow, and we fluctuate, and it ebbs and it flows, and it changes. So it's very deep wisdom that you're sharing about giving ourselves grace, and then even more so if you're struggling with a condition or more conditions that create physical and emotional challenges. We know endometriosis is not just a physical condition; it has a lot of mental health components to it, and pain that can really change your day-to-day unpredictably. Lots of wisdom there.

Chelsea: And that sort of layer of fatigue that comes with an autoimmune-type condition like endo. And I think it's important to share that. My natural baseline personality is I'm like go, go, go. I'm very, very high-achieving. I'm very hard on myself. I'm a perfectionist when it comes to myself and other people. You mentioned that really, really key word, which is grace. And being a bit more graceful and a bit softer with myself is not something that comes naturally, nor is it something that has been in my vocabulary for a long time.

Aviva: I'm the same. I have to remind myself, of course, sometimes it's so silly. I'm so hard on myself and such a perfectionist. I'll get on the podcast, and this happened twice today, interviewing. I'm with you, and I was with this woman before, saying the most kind things about me, and I'm like, oh, right. I need to give myself more grace on a day-to-day basis and not think I should be doing more of this or more of that. But it's so easy to get in that, and that is part of our cultural patriarchal mindset too. It's very achievement-oriented, which doesn't always fit in with our nervous systems as women.

Chelsea: A hundred percent, and I have not mastered this at all. But I think one of the most beautiful and personal shifts that I've had since having a baby is this, because I so often don't get the sleep that I need. And I know everybody needs sleep, but some people can function to a certain level on five, six hours. I cannot. And so on those days where my baby's up during the night, or he wakes up at 5:30 or whatever it might be, my day is kind of in the shitter, and I have to accept that. I think that just as you made that point with waking up in the middle of the night, it's when you have those moments where you don't get really stressed, because of course we all know that feeling when you're lying in bed, and all you're thinking about is how you're going to be in terrible form for the next day, how you've got so much to do. You're going to be a total failure. Everything's going to go wrong.

Aviva: And all the worries come up at that time of night.

Chelsea: It's like I actually find that it makes me feel like it's not like I'm almost possessed and I become this other person, where it's—everything comes up and you're just suffocating in it. But actually, when you have those moments, as you said, you put on your eye mask and you listen to your meditation, often when I just do that with deep breathing, I can get back to sleep. And if you can't, you actually come out of that and you feel sort of proud of yourself that you didn't get worked up.

Aviva: Exactly. That's what I felt last night too. I was like, okay, I'm rested, but in a different way.

Chelsea: And actually, it's been quite interesting from that perspective when I can tell when I'm in a restorative state but I'm not actually sleeping. And it's actually now, having this sort of data point to see how it feels, I'm like, oh yes, I was really calm. I'm going to try and do this a little bit more. If you can't get to sleep, then it's the second best thing, right?

Aviva: Darkness, rest. Yes. So you, as so many women do who have endometriosis, went on to struggle to become pregnant and also experienced a pregnancy loss. Can we talk about that? Because I feel like it's so important.

Chelsea: I had definitely gone into the chapter of trying to conceive with apprehension because of what I knew and know about the impact of endometriosis when trying to conceive. There were a few layers. There was that—having that knowledge that I might have an issue. There was also, I guess, some personal stuff that I was working through in my relationship where my husband wasn't as ready as I was, which was slowing things down. That was compounding the existing apprehension and making me very anxious because I was trying to express that time was of the essence as somebody with endometriosis. And I will say what's interesting about my journey is I didn't actually have problems getting pregnant. I was pregnant—I got pregnant the first time after a few months of trying, and I had a positive pregnancy test. I think I must have taken about 10 tests because I couldn't believe it.

And I had been longing to be a mother for such a long time. I almost just felt like if I kept testing, I could just be sure that everything was still going according to plan. And that, I think, also showed my lack of knowledge about what I was going on to experience, which was an ectopic pregnancy. I mean, you can explain to your audience probably much more articulately than I can, but it's when the fetus develops in the fallopian tube, does not travel down to the womb, and as a result, means that the fetus isn't viable. And if you don't catch it early enough, it often results in the removal of a fallopian tube and, in very extreme cases, can be fatal.

Aviva: Yes, you explained it perfectly.

Chelsea: I had heard of an ectopic pregnancy. I don't think I really could have defined what it was exactly, and I just remember going for my first scan. My husband was meeting me there. We weren't married at the time, and I lay on the table for the ultrasound. The first thing I just remember seeing the baby and just being so overwhelmed with joy and seeing the heartbeat. And very, very quickly after, she explained that I was having an ectopic pregnancy and that I needed to be rushed to the hospital immediately because there was a high chance that this was going to rupture. And she said I was very fortunate that it hadn't already ruptured. It was like this bomb was dropped on me in a way that I don't think my brain—there was such a disconnect between the physicality in my mind. I couldn't intellectually grasp what she was saying. It was too quick, too much of a shock. And this really had been coming off the back of a two-year wait to be able to start trying for a baby because of that personal piece that I had mentioned.

And so it felt like such a long journey already just to get to that point. And I was in surgery 35 minutes later having my right fallopian tube removed. I just remember coming to after the anesthetic, and it's hard to articulate just the level of sadness and grief and how broken I felt—the disappointment. And I think there was almost a bit of that victim mindset of, “Why me? I've just had a tough time with my health. I have epilepsy; I have endometriosis. Why don't I get the happy ending?” And like we do as women, I got on with it, and I healed, and I was grateful to my body that it healed in the way that it did. And I really looked after myself in terms of nourishing food, and I did use different plants to support me and different tonics, and I had acupuncture, and I really tried to go gently. But I was completely obsessed with trying again. It was all I could think about. I honestly—I must have thought about it a hundred times a day. Nothing else mattered in the world. When could I try again? When could I try again? And the doctors had told me to give it two months, and I waited two months, and that was it. I was back on it.

Aviva: That's the ambitious side right there. That's the sort of Leo character in me. I was just like, I am ready to go again. Sometimes I think those babies are calling so hard too. I just sometimes feel that is the unknown piece of it and that we're picking up that call. So do you ever feel that way?

Chelsea: I love that you mentioned that. One of the books that really, really helped guide me through was a book called “Spirit Babies,” which very much speaks to that concept, and I think that was really, really helpful for me. And I established what exactly my belief system was—that that same soul was going to come back and visit me, or was it that a different soul? And that soul was just there for a brief period to teach me a lesson and have that experience. And it definitely brought me closer to my husband, I think, which was a beautiful thing. And I tried again. I think I was pregnant quite quickly. It was perhaps two cycles. So again, quite interesting because a lot of women with endo do have problems actually—that initial phase of trying to conceive. And that didn't seem to be my issue. And I got pregnant again, and this time I was just a hundred percent sure that this was my moment because I had been through what I'd been through before.

It was like, okay, the first one didn't work out. I could believe that; I could accept that. It was a lot more traumatic than I would've thought with the ectopic piece. But the second time, it just felt so aligned. It felt so right—the timing of it, everything. I remember I'd started to write a piece for a publication about my experience with an ectopic, so it was like I was closing this chapter. I wasn't yet sharing that I was pregnant, but I was just filled with joy. And I lost that baby as well. And I mean, it's hard not to get emotional about it because I really—

Aviva: Take your time.

Chelsea: When I found out that I lost the second one, I could not—I just couldn't believe it. I couldn't accept it. Definitely. I fell into such a dark space and a low period where I just really felt like I didn't really want to be here without my baby. I was so triggered on a daily basis by social media, by women walking down the street. I remember sitting at my kitchen table, and it was just like this strange thing. Maybe I was just calling this energy so hard, but it was like every time I looked out the window, all I could see were pregnant women. I'm like, from my own kitchen table, they just leave me alone. Friends sending pictures of their children. You cannot curate and edit your world. It's just, okay, you could mute that person on Instagram, but it's everywhere. And I really started to think that it wasn't going to happen, and I had an incredibly painful and traumatic miscarriage. And I was in excruciating pain.

I was traveling at the time. I think had I not been abroad, I probably would've ended up going to the hospital. The pain was so extreme, and I just remember when I remember what that miscarriage was, it was just like lying on the bathroom floor. It reminded me of my wearing diapers and just feeling just a complete shell of myself. I was like, how have I ended up here? And I was so attached to it in a way that when I think a lot of the time you can have a termination to really see everything that the body is passing, and that it's very traumatic. It's also kind of weirdly beautiful in a way. Just everything that I think eventually came out of that experience for me. And I think really that was also just such a calling to help continue doing the work around community and supporting other women because I had always historically heard of, “Oh, that person had five miscarriages.” I remember my mom telling me when I was very young that she had a miscarriage. And we just throw it around so flippantly as if it's nothing or—

Aviva: We don't talk about it. Running the mama pathway. Now I'm in there with mamas all the time answering questions. And of course, I have this long history of doing this as a midwife and working with a lot of women around miscarriage. And one of the questions that seems like it hasn't changed in the 40 years that I've been doing this work is, “When should I tell people I'm pregnant?” And it's predicated on the fear that then if you did have a miscarriage, that you would then have to tell people that you lost the baby and that being embarrassing or shameful. I wonder how that was for you. Had you told people that you were pregnant with each of the pregnancies, and then did you have to go through telling people you weren't, or did you wait to tell people? What was your inner world around that?

Chelsea: I think that you've raised such a valuable point, and you're right. It's like either people just talk about it in a way, not about themselves, but about others and say, “Oh, that person had a miscarriage,” or they just don't. And I think, again, that for me feels very—that has a real masculine energy to it, where I think women want to share and they want to chat with each other. But I sort of think also something that culturally feels very English about that to me—this idea of not sharing for fear of having to have that conversation to tell people you lost it, which is just so bizarre. And I remember one of my closest friends, Martha, saying to me during the first pregnancy, she said, “Tell the people that you wouldn't mind knowing and who will support you if you lose it.”

Aviva: That's what I would feel too.

Chelsea: Just great advice.

Aviva: You are right. There are people who just are really, “Oh, this one had a miscarriage, that one had a miscarriage,” as if it's sort of nothing. And for the women who have experienced it, it's not nothing. We talk about postpartum depression, but we don't really talk about post-miscarriage depression or anxiety. As you were talking about your second pregnancy, I was thinking, well, that's amazing that you were so excited and aligned and positive because so many women also go into a subsequent pregnancy now so anxious if it's going to happen again.

Chelsea: Yeah, it's so funny. I was so confident. I think, honestly, if you asked me to really distill down why losing the second one was so hard, I think as somebody that has a strong belief system and I consider myself to be a sort of spiritual person, as it were, I think this idea that I didn't know and I had no idea and I was so disconnected from source that I confidently thought this was my moment, that really, really completely shattered my world because I just thought I know nothing and I'm not connected and I don't know my body. And I think that it has been a challenge, and anyone who's listening who has any sort of health condition that they've had to battle with knows that feeling of where you feel let down by your body and your body feels defective and you look at other people and you think, “Wow, what I would just do to be healthy.”

And I think it required so many years of healing to bring my confidence back after being somebody that had seizures, just trying to get through each day, each experience, whether it be catching a flight, having not slept very much because it was an early flight, having to just combat that anxiety of, “I'm going to have a seizure.” I'd done a lot of very, very deep work on that. And I think it was just that feeling of, here we go again, another chapter where I can't trust my body because my body let me down. And I will never forget the people who supported me in that moment. I just had that feeling, and I hate to use the term “desperate,” but I will use it because it's honest. The desperation—or I should perhaps reframe it as the longing to be a mother—was so deep that I felt just this feeling of, “I will not cope if I can't be a mother.” And after that second loss, I think it just took so long to recalibrate.

Aviva: Did you—

Chelsea: I think I took time. I think time was a big piece of—they say time is the greatest healer. They say that for a reason. I think, again, coming back to the toolbox and just nature and looking in nature for what nature had to support my body, my womb. Acupuncture was incredible. TCM

 was incredible. Nutrition. But I think also, and this is some interesting advice that someone gave to me, was like, you should do things that you can't do if you were pregnant, just to kind of be like, “I'm not pregnant, so I'm going to go and get my teeth whitened, or I'm going to go and get a gel pedicure.” That sounds silly, but I was the person who was like, I don't want any chemicals anywhere near me. I cannot have any endocrine-disrupting chemicals in sight. And I was like, “And I'm going to drink all the wine, and I'm going to do everything, and I'm going to go out and have some fun nights until whatever time.”

And that was really helpful and healing to do that alongside everything else and just be like, I'm going to enjoy. I'm going to do all the things that I wouldn't be able to do and just lean into all of that. Again, community. That is how I started the now Looni community, which—that community was truly born out of my desire to connect with other women who were on the journey of trying to conceive, were struggling with infertility, pregnancy loss, you name it. And I think those women became my family, and just being able to connect with women who were also obsessed—equally as obsessed with having a baby and becoming a mother—because there is only so much that your friends and family can do, and I think oftentimes they can't really do very much if they haven't been through it. My husband, definitely—he was incredible at the time, and he did what he could, but I think it was hard for him to understand where I was at.

I remember going to see my acupuncturist who suggested I wait six months, and that was longer than I wanted to wait. And the hardest thing was this idea of waiting. I just wanted to go again. And I remember I was like, I'm going to try at four months because that's one month longer than the three-month period. But I always had that information that—just like what I had shared with me about waiting six months—in the back of my mind. And when I got to four months, I just thought, what's another month? I can do this.

Aviva: That's how I do it with my patients too. And the six months isn't medically indicated, and you certainly can try to get pregnant, and we're highly fertile after miscarriage, but there is also—I don't love the term miscarriage because it sounds like somebody did something wrong, somebody didn't carry right. Where I feel like pregnancy loss is much more encompassing. I don't know what you think about that.

Chelsea: Oh, I agree with you. There's more of a softness to that. And I think that's one of the biggest challenges is, as women, we just blame ourselves.

Aviva: Exactly.

Chelsea: We have to remember. Nothing that you could have done would've changed the situation. I remember having an appointment with a fertility clinic, and I was so thrown by the approach and the energy, and I just remember them telling me that I shouldn't try again and that I should definitely move forward with IVF. And I just said, I just don't know if that's the right move for me right now, and I have an urge to try one more time naturally. And I just remember there was just this narrative that was really being pushed on me, that the chances of you losing it are incredibly high and you need to ask yourself how you would feel if that happened again. And I do come back to my intuition in this moment because something just told me to give it one more go. And I learned so much and grew and learned a lot about resilience and a lot about being kinder to myself, I think, and a lot about how our culture deals with these taboo topics and how unbelievably archaic and shocking it is, and actually how we don't really provide space for people to grieve at all, especially around pregnancy loss, and how important it is to mark that moment of loss and create some sort of ceremony to mark that and to send off that soul.

And six months later, I got back on the train, and I tried again, and I now have a beautiful baby boy who just turned a year. So I've been very, very lucky.

Aviva: Don't take that in for a minute and let everyone just share in your celebration and your journey.

Chelsea: Thank you. And I think just the final piece for me that's always important to say is that I find we hear these stories a lot more frequently about women that had three miscarriages, had five miscarriages, and then went on to have a beautiful baby. Whether that was naturally or whether that was via IVF, or they had five failed rounds of IVF and then got pregnant naturally, I feel we hear these stories a lot. And the stories that we really, really don't hear and that don't get enough airtime are the women that try and try and try, and they don't end up with that baby and becoming a mother. And those women are the biggest warriors out of all of us. And I just think they deserve acknowledgement and appreciation, and how resilient they have to be to rebirth themselves and channel that maternal energy elsewhere. And I know women like that, and I know how challenging it is to get yourself back up and dust yourself off. And I didn't feel that I was able to do that very well, and I was so fortunate enough to have the happy ending, as it were. And so I just think it's important to take a minute for that community that doesn't get that sort of traditional happy ending.

Aviva: Remarkable. And our culture is so subtly and overtly insensitive. I've come to writing Mother's Day social posts and Mother's Day emails to my list about the complexity of motherhood and Mother's Day in a culture. But every holiday break—all the holidays—are these sort of hallmark holidays with families and children, and they make a lot of assumptions when, for so many reasons, it's not like that for everyone. There's estrangement, there's family mental health, there's so many different iterations of this story. So thank you for honoring that. You can try and try and do all the “right” things. You can get the acupuncture, you can do the herbs, you can do the hormone intelligence plan or this plan or that. And still, we have to come back to all the things—also not blaming our bodies, not thinking that we're defective, but we just have a very different journey.

Chelsea: Yeah, you're right. There's a lot there. There is.

Aviva: And we really need each other.

Chelsea: We do. And again, I think that's where the community piece comes in because we think that we have so much control over our bodies, and to some respect we do. And I think I am a testament to that from the journey that I've had. But then at the same time, I think this is why women struggle so much emotionally with this idea of our entire lives we're taught not to get pregnant. It's all about—the focus is all about not getting pregnant. So you have this sort of false almost understanding that one day you're going to wake up and you're going to say, “I'm going to get pregnant,” and you're going to get pregnant really quickly because your whole life you've been trying not to get pregnant. And so that just creates this sort of confusing piece when it comes to wanting something and not having control over it. And I think from my journey, it really taught me or continued to bring forward this idea of divine timing and it just being something that is just out of our control. It's hard.

Aviva: I say that in the mama pathway where I'm working with pregnant and new mamas, preconception—all the whole gamut. And it's like, if there's anything that being a mother has taught me—being a mother, being a midwife, being a doctor—is this, I just call it surrender and flow. There's just so much we can control. And I think the earlier we figure that out—there's that difference. To me, I think part of suffering is the gap between the story that we're telling ourselves of how it should be or it's going to be, and then the actual reality, and then we're suffering in that gap. Oh, so community. So you have birthed your baby and you have created Looni, which is a great name. So tell us about this. I can only imagine all the different ways—Luna and feeling crazy and out of control. This is what my mind goes to. And having fun too.

Chelsea: You are exactly right. And I always love it when people ask us about why we named Looni “Looni.” I mean, the first piece is it was thrown around as an endearing term in my family growing up. “Sweet. You're such a Looni.” So it just had that sort of endearing energy to it. And then, of course, there is the lunar piece and the perception of how the moon impacts our cycles. We also felt that the aesthetic of the word with the two O's, which reminded us of two ovaries—there was that element. And I think it was just—we really wanted to claim ownership of being named crazy and hormonal throughout our entire lives as women and actually be like, yeah, we do feel sometimes. And then when we looked at the derivation of the word “lunatic,” it meant moonstruck.

Aviva: It does, yes. And tell us about the company and the community.

Chelsea: Looni is a menstrual health and wellness company. We have one product in the market today, which is our Balance Beam supplement, which is a supplement to help support hormonal balance and help support indications like low mood, menstrual cramps, and skin breakouts. And we conducted an independent consumer study as well, looking at the impact of our supplement on some of

 these different indications as well as those with chronic conditions like endo. We have our second product, which will hopefully be coming to market at the end of this year. I'll give you a little sneak peek, but it's a topical to help with tender breasts and menstrual cramps and pains like lower back that are related to the menstrual cycle. I always talk about Looni being a tool in the toolbox. I don't believe you should trust anyone who's telling you to buy one product and that this is going to be the answer to all of your problems.

And I think you, through your work, speak so beautifully to this. And actually, a lot of it comes back to body listening and really listening to the signs and symptoms of our body. And then community as well. I speak of that as another tool in the toolbox. We have a beautiful online community to help support women with chronic conditions like endo, like fibroids, PMDD, PCOS, but also struggling with fertility issues or pregnancy loss. And I spoke to this before, but community is everything. I really believe we heal in community, not as just the individual. That is where we really, really—we do our best healing. And we are very passionate about continuing to bring these topics to the forefront and tackle the taboo nature of so many of these issues that we've spoken about today.

Aviva: Thank you so much for being so generous and sharing about your own story. I want to share—I read toward community—I read a study. It was when I was working on “Hormone Intelligence.” I think it came out of Australia, but it was specifically women with endometriosis who found online support groups as part of their healing process. And really, it was part of their getting information. And so often when women go to the doctor, doctors do gaslight and do say disparaging things like, “Oh, where did you get your medical degree, Dr. Google?” And yet, for so many women, the only places they're finding that they're not alone, they're not crazy, that there are other people—they're finding answers and information, which of course we have to take with a grain of salt sometimes, but it is in these online communities. And so this study looked at the experience specifically of women with endometriosis in online communities and found not only did being part of a community actually reduce their sense of pain, their actual physical pain—I think because it relieved so much of the stress they were feeling.

I mean, there was still pain. It wasn't like they went to zero. But what was really powerful is that being in community with other women gave them a sense of empowerment that actually allowed them to advocate for themselves and get the diagnosis that maybe they hadn't gotten yet or the information they needed or treatments they wanted or support from their provider to get more information on some of these alternatives, if you will. So we talk about community as this beautiful thing, and it is—we need it as women. We are hardwired. We know that our progesterone goes up when we are in connection with each other. We know that our oxytocin goes up. And then there are these unexpected collateral benefits, like decreased pain or improved empowerment that are measurable. It's not just like how we feel, which I think is the most important, but that we can measure this as really a testament to the importance of creating communities.

Chelsea: Thank you for sharing that. I did not know that. And I love that. It just makes it even yummier and even richer.

Aviva: All right, lovely. I have a question for you, if you don't mind, before we go, which I love to ask every one of my guests, and this is: If you could tell your younger self anything, how old would she be, and what would you tell her?

Chelsea: I think I would probably go back to teenage years. I think that was the hardest time, and it's so hard to drill it down to one thing, but the sentiment would be, try not to worry as much because what feels like darkness today will end up being your light and something that makes you who you are and your force later in life.

Aviva: Thank you. We'll have all the places to connect with you in the show notes, but if there's one place women should go, where is it?

Chelsea: Looni.co is our website.

Aviva: Thank you for being with me today and sharing this conversation. I am just so thrilled to connect with you and also to bring your beauty and wisdom and story to the On Health community.