From Pain to Progress: Ellen’s Endometriosis Story

[00:00:07] Caitlyn Krebs: It’s unbelievable that we’ve gone so long without really understanding the disease, and there have been more male baldness studies than there have been endometriosis studies. That says it all, I think.

[00:00:25] Ellen Scanlon: Welcome to How To Do The Pot, an award-winning podcast helping you feel confident about cannabis.

[00:00:30] I’m your host, Ellen Scanlan.

[00:00:41] You just heard from Kaitlyn Krebs, the CEO and co-founder of Nalu Bio. A San Francisco based biotech firm harnessing the power of the endocannabinoid system for a healthier future. Today’s episode is about a disease I know all too well because I have it. It’s [00:01:00] called endometriosis, and it’s affected nearly every part of my life from my teenage years to trying to get pregnant to navigating pain that I kind of thought was just part of being a woman.

[00:01:13] Endometriosis affects one in 10 women. Yet most women don’t get diagnosed until they’re facing fertility struggles or dealing with debilitating pain that they can’t ignore. In this intimate conversation, Kaitlyn Krebs and I talk about why diagnosis takes so long, what the symptoms of endometriosis really feel like, and how cannabinoids and the endocannabinoid system could offer new hope for the future of treatment.

[00:01:43] We also talk about some ideas for how to advocate for yourself with your doctor, whether it’s about the endocannabinoid system, about symptoms of endometriosis or about cannabinoids. If you or someone you love has ever been dismissed, misdiagnosed, [00:02:00] or just told to tough it out, today’s episode is for you.

[00:02:05] I am really happy to have Kaitlyn Krebs here to talk about this with me. She is a seasoned biotech entrepreneur and with Nalu Bio, she’s leading a company that’s using AI to develop treatments that work with your body’s endocannabinoid system. We also call it the ECS, and they do it without the side effects of traditional medications.

[00:02:25] Caitlyn has more than 20 years of experience building science backed health companies. Now she’s focused on solving for pain, stress, sleep, and inflammation in a smarter, safer way. I. I’m really excited to share a special offer from Caitlin and from Nalu Bio, which has developed a new line of wellness products called MELD that are specially formulated for women.

[00:02:49] I know that many of you are living with pain, stress, or sleep issues that feel really hard to solve. I recently spent a day with meld, which is [00:03:00] powered by science and by women. It’s designed to work with your body’s endocannabinoid system. What’s really exciting is that Nalu Bio is offering free sample kits exclusively to how to do the pot listeners, and I really want you to be a part of it.

[00:03:15] All you have to do is sign up for their newsletter on their website, mel science.com, and I’ll add all the details in the show notes. This is your chance to try these blends before they are even available to the public. It’s also your chance to be part of something bigger, improving women’s health outcomes.

[00:03:35] I hope you enjoy my conversation with Caitlin.

[00:03:49] Can you help us understand what endometriosis is and what treatments are currently available to help with the painful symptoms that it can bring on?

[00:03:57] Caitlyn Krebs: Sure. So a lot of women actually [00:04:00] don’t know what endometriosis is, and it’s really a chronic inflammatory disease. And what happens is you have tissue, endometrial tissue that grows outside your uterus and it’s very painful.

[00:04:14] It causes pain, inflammation, and one in 10 women actually have endometriosis. So a lot of women who have. Infertility issues. A lot of them who have very painful periods from a young age, it’s actually endometriosis and they know it.

[00:04:30] Ellen Scanlon: It’s so hard to hear the one in 10 number, and I know imagine that every single person knows someone with endometriosis.

[00:04:37] We all know 10 women.

[00:04:39] Caitlyn Krebs: And one thing I would add to that is that it takes seven to 10 years on average for a woman to be diagnosed. So women, we just. Spare the pain. You know, we handle the pain, we deal with the pain. And then finally, usually when they’re trying to have kids, women kind of uncover that they have endometriosis.

[00:04:56] So it’s a really long delayed, uh, [00:05:00] diagnosis from a physician, which is terrible. There’s no cure for endometriosis. It’s one of the most underfunded diseases as well, so we don’t understand the disease. It’s underfunded, but there are so many women that have it. It’s unbelievable that we’ve gone so long. I.

[00:05:19] Without really understanding the disease, and there have been more male baldness studies than there have been endometriosis studies. Right. So that says it all. I think

[00:05:32] Ellen Scanlon: I reached out to you because you’ve and Nalu bio have been posting on LinkedIn. Yeah. About incredible, exciting advances in treatments for endometriosis.

[00:05:41] And it’s a disease that I have, and it’s one that I think that we should. Be able to solve. And so I was thrilled to hear that from you. And one of the things that, that a lot of women don’t know about it is that there are so many symptoms. Maybe you can just talk a little bit about what the [00:06:00] symptoms are and how they present themselves in different ways.

[00:06:05] Caitlyn Krebs: Sure. Some people have very long menstrual periods every month. Some of them, there’s intense pain during the time that you’re having your period. There’s just bloating, there’s pain in the stomach. I mean, some of the women who have endometrial, I. You can physically see them. If you take pictures of it, you can physically see.

[00:06:27] Some women actually look pregnant when they have endometriosis. It impacts sleep. It’s stressful. It impacts intimacy. It’s painful to have sex when you have endometriosis, so you’re right. There’s a list of like 20 different symptoms, and it’s hard for. Physicians to actually identify until they go in and they actually have a laparoscopic, so they have to go in with a scope and actually take tissue, and that’s when they diagnose it.

[00:06:57] And so it really is a long, [00:07:00] hard journey for these women. They call themselves endo warriors. I mean, you’re an endo warrior. It’s a battle and it’s a battle against the physicians, the healthcare system, and the disease itself.

[00:07:12] Ellen Scanlon: And the symptoms are so painful. I was in labor with my son for 13 hours and the first 10 were very similar to a regular month.

[00:07:23] And just the throwing up, passing out levels of pain that should not be normal. And it’s even hard for me now to look back and see what I have just kind of accepted as normal part of my story. I was. Reflecting on it ahead of our conversation. I remember being at my parents’ beach house and we were there with family and I must have gotten my period, I think I was in middle school and I passed out from the pain.

[00:07:53] I was sort of staggering around and no one knew what was going on. And my mom was like, what is wrong [00:08:00] with you? Sort of in a way that. Made me feel embarrassed and I was like, I’m doing something wrong here. And I think that not long after that I went to an OB and around 16 or 17, I think I went on birth control to try to control the cramps and I stayed on birth control.

[00:08:18] More or less until I got married, which was when I was 36. And so it wasn’t until I was 36 that I even had a connection with my cycles, other than pretty much easy peasy for that entire time. So to suddenly I. Realized at 36 and, and it took a little bit before I started having extreme pain. At the time I was working for a women’s healthcare startup, and I remember a woman had come into town from Southern California.

[00:08:47] She was a renowned pelvic health women’s health physical therapist, and I was supposed to meet her and I had to call and just say, I’m in bed. I don’t know what’s wrong. Like I, I literally can’t get up. I am in extreme pain. [00:09:00] When I met up with her later that day, I felt better. And I feel like it was such a missed opportunity because I just brushed it aside.

[00:09:07] I didn’t talk about it, and I feel like she would’ve been a perfect person to say, say the word

[00:09:14] Caitlyn Krebs: I know. And it’s incredible the journey that women go through, right? Because usually. From a treatment perspective, they put you on birth control. If that doesn’t help, then they say, you know, take some NSAIDs, so ibuprofen or acetaminophen, and then if that doesn’t work, they put you on opioids.

[00:09:29] But one wants to be on opioids for some period of the month. Also, considering that they’re highly addictive. And then if that doesn’t work, they put you on a hormonal therapy. And the hormonal therapies. A lot of these women between the ages of 25 to 40 are trying to get pregnant. Probably like you were as well.

[00:09:47] Then it’s playing with your estrogen and progesterone. And so it’s actually hard to get pregnant when you’re on these, um, they call ’em GnRH compounds, but when they’re on these hormonal therapies.

[00:09:57] Ellen Scanlon: You’ve got so many symptoms and most of the women that [00:10:00] I talk to about endometriosis don’t know that they have it until they’re trying to have a baby.

[00:10:03] And then often they still don’t. I mean, I had a friend who is 47 who, whose doctor just told her that that was probably the reason that she wasn’t able to conceive. I mean, we’ve had our period since we were teenagers.

[00:10:20] Caitlyn Krebs: I know it’s, it’s an incredibly long journey and we just don’t understand it. There isn’t a pamphlet at the OBGYNs, right, that talks about endometriosis, which is crazy, especially, you know, if 10% of the population has this, you would think that there would be resources for it, but it really isn’t. It’s really.

[00:10:39] Up to the woman to figure it out herself. And that’s why there are so many of these online communities and women are reaching out to each other for help and solutions. They are taking vitamins. They’re taking supplements, they’re taking cannabinoids. You know, that was really the unlock for us is that. [00:11:00] 13 to 17% of women who have endometriosis are using CBD or THC for the pain, for the inflammation.

[00:11:08] It works, but people don’t wanna get high. You know, they wanna be able to take care of their kids, they wanna be able to drive. And so we realize, wow, if we can make a non-hormonal solution that, um, doesn’t get you high, that would be an incredible opportunity and incredible solution for these women, for these endo warriors.

[00:11:29] Ellen Scanlon: Well, let’s talk a little bit about the endocannabinoid system and my substack. I recently interviewed Dr. Ben Kaplan, who was really helpful in explaining what the endocannabinoid system is and how it affects women’s health. But I’d love to hear your perspective on it and, and what Nalu Bio is trying to harness with the ECS.

[00:11:48] Caitlyn Krebs: Yes. So I talk to people about the ECS endocannabinoid system all the time. Most people don’t know they have one, so that’s kind of the first thing. It was discovered in the early nineties by a [00:12:00] chemist outta Israel, Raphael Tulum, and so it’s new, but it is really the master regulator of your body. It impacts pain, inflammation, your immune response, fertility, thermal regulation, stress, anxiety, and people don’t know about it.

[00:12:17] It’s this master system and it’s basically a system of receptors, of enzymes and your body even makes to endocannabinoids, which most people don’t know. And anandamide and two, ag are the endocannabinoids that your body makes. And in Sanskrit, anandamide means bliss. So it’s the system that keeps you happy and regulated and a and in a bliss state, again, not like your high getting bliss, but again, bliss.

[00:12:47] And so there are two main receptors in your body. CB one and CB two, they’re all over your body. CB one receptors are mainly in your brain. And CB two receptors are mainly in your body, in the female [00:13:00] reproductive system. And actually as we age, you gain more receptors over time. And so these are the receptors that keep your homeostasis kind of in your reproductive system.

[00:13:11] And when that’s outta whack, that’s when you get issues and diseases like endometriosis. And so that’s why we’re so excited about targeting the ECS for endometriosis. It’s the perfect place to intervene and really bring back that biological resilience or homeostasis of the endocannabinoid system.

[00:13:37] Ellen Scanlon: A few weeks ago, I got to spend the day with meld Nalu bio’s, new ECS based wellness line. I’ve been thinking a lot about it ever since because even though I talk a lot about cannabis and health, I really hadn’t experienced products like these. There are no high blends of cannabinoids plus targeted vitamins, which are created specifically for women [00:14:00] dealing with things like pain, stress, and sleep disruption.

[00:14:03] If you have ever wondered what your body could feel like with the right support, this is your chance. Nalu Bioo is sending free kits with three products to our listeners while supplies last. Sign up for their newsletter on their website, meld science.com, and you’ll get to try them. Track your experience and be part of building the next generation of women’s health products.

[00:14:29] There’s a short survey to take after you try the products, and I’ll talk more about my experience with it next week. By trying these free products, you are helping shape the future of women’s health and feeling better yourself.

[00:14:51] I like asking this question of cannabis advocates and people who’ve been working in cannabis because I feel like so much of what we’re excited about is in the future. So what is your [00:15:00] dream for the therapies related to endometriosis? I.

[00:15:03] Caitlyn Krebs: So our dream is to develop ECS based therapies and medicines for pain, for inflammation, and ultimately what we call disease modifying.

[00:15:15] But these therapies would be able to shrink the endometrial and really reduce the actual tissue. That’s growing in the woman’s body. And if you can reduce the tissue, you can reduce the pain, you can reduce the inflammation and kind of return the body back to homeostasis. So if we could generate a non-hormonal, so you can take this whenever you want, you can still get pregnant.

[00:15:39] It doesn’t have any of the addiction qualities like an opioid, and it doesn’t get you high like THC. I mean, that is what we are developing and that’s what we’re so excited about. And the one thing that is. Cool is that women are already going off their opioids. If they take C, B, D and THC, they find that cannabinoids work [00:16:00] as well as opioids.

[00:16:01] In fact, there’s some studies that show that 66% of women will go off their opioids and take cannabinoids, and so we’re creating a non-high, non-hormonal solution.

[00:16:11] Ellen Scanlon: And that was my experience when I discovered cannabis. I had taken like Anaprox and Midol mostly because I really don’t take pain medicines well, and I knew that adding nausea to the mix was not what I wanted at that time, but it also gave me bad side effects, a very upset stomach.

[00:16:31] I just kind of felt. Extra edgy, which already in that moment I was feeling terrible. And so once I discovered CBD, I found it just worked the same. It got rid of the pain in the same way that the things I had been taking, but I didn’t have side effects.

[00:16:47] Caitlyn Krebs: So there are a lot of women who use. C, B, D and THC.

[00:16:51] And there have been some large studies in Europe and Australia that because the ECS is this master regulator, you’re [00:17:00] not just getting the pain and inflammation and maybe disease modification. But it also is affecting your sleep, your mood, and your stress. You get the added benefit because you have receptors all over your body that is impacting those other systems.

[00:17:14] You get the added benefit from the cannabinoids as well. So I think that’s why women love CBD and THC. You get more than just the disease modification piece of it.

[00:17:24] Ellen Scanlon: Part of the reason that I got into the industry is because I was realizing the benefits that cannabis has specifically for women and with the ECS and its role in diseases that disproportionately affect women.

[00:17:37] Do you feel like this could revolutionize women’s health? I.

[00:17:41] Caitlyn Krebs: I do. I mean, you know, women’s health, it’s underfunded, right? It’s understudied. We didn’t even have women required by the FDA until 1993 to be in clinical studies, which is just like mind blowing. And so we don’t have the data and then. Some women don’t wanna share their data, right?

[00:17:59] And I [00:18:00] say the exact opposite, like, please share your data because we need more data on women. I believe it’s a huge opportunity, and because the ECS impacts so many different systems in your body. For women, I think it has a huge potential in the areas I mentioned in weight loss, in sleep, in stress, in pain, in specific diseases like endometriosis.

[00:18:25] The reason why I started Nalu bio is because I saw a list of 200 different diseases, chronic diseases that cannabinoids could be helpful for, and I’ve been in different areas. I’ve been in diabetes, I’ve been in cancer, I’ve been in Alzheimer’s, but there’s no class of molecules that has such a potential, again, 200 different chronic diseases.

[00:18:47] That’s what got me excited. I’m like, okay, I’m a believer just like you are.

[00:18:52] Ellen Scanlon: So we’re believers. I’m a believer as a patient, you’re a believer, as a scientist, where did doctors stand?

[00:18:59] Caitlyn Krebs: I found [00:19:00] something very interesting talking to one of the top doctors who does over 400 endometriosis surgeries a year. I.

[00:19:08] So as you know, as a patient, you can go on therapies, but a lot of women end up having surgery to remove the tissue. It helps, sometimes it comes back. But I started telling this physician about the endocannabinoid system and cannabinoids and he just stopped me and he said, you do not need to convince the Pope to be Catholic.

[00:19:32] And so he is a believer because his patients use suppositories. They use CBD, they’re educating him about cannabinoids and cannabis. And so it’s actually the patients, because they’re young, motivated women who are in a lot of pain who wanna solve it just like you did. They actually are educating the physicians.

[00:19:55] Ellen Scanlon: I say this a lot to women, and I know that it’s not always easy, but bringing it up with your doctor [00:20:00] even in a general way, like this is how we’re going to get more doctors interested, because if they don’t even know, then they’re susceptible to all of the same stigmatized information that many of us.

[00:20:13] Started with and have had to overcome. When I was trying to get pregnant, I went to four different doctors, two in San Francisco, one in New York, and I ended up with a doctor in Colorado. The first time I heard the word endometriosis was the third doctor in New York, and he said, endometriosis can cause infertility, but you don’t have it.

[00:20:33] That was it. And then I went to Colorado and my doctor there, Sarah Barton, said, given all that you’ve told me, I feel like endometriosis might be a possibility. Did you have painful periods? And I was like, oh yeah, absolutely. I. But that was the first conversation that I had ever had. It’s so frustrating because at that time, the diagnosis of unexplained infertility, it actually just didn’t make sense to me.

[00:20:59] [00:21:00] It’s so hard for me to believe that this is happening to so many other women. Not to mention all of the terrible symptoms.

[00:21:09] Caitlyn Krebs: I know, and I think it’s like a lot of things in healthcare. You have to be your own advocate, right? You have to advocate for yourself, but it’s changing. I was at a conference earlier this year.

[00:21:22] And heard Jill Biden talk about women’s health and how it’s underfunded, how it’s understudied. And the first example that she gave of success of the program was in endometriosis. And so it is gaining awareness. People are talking about it. You know, there are companies like us who are trying to solve it.

[00:21:44] There are diagnostic companies who are trying to make simple blood tests, right? So you could just easily get a blood test. So it’s changing but not fast enough. I mean, the diagnosis is still taking years for these women.

[00:21:57] Ellen Scanlon: It is changing though. I do think that there’s [00:22:00] just a generation of women younger than me who will hopefully not have to suffer.

[00:22:05] Maybe they suffer the painful symptoms because we’re still trying to solve this from a pain perspective. But the emotional side of it is. Just as bad, and the idea that you feel like there’s something that’s only happening to you that is uncomfortable, embarrassing, scary. I recently went on some prescriptions for endometriosis for the first time, and the real reason is that my oldest friend came out to California to celebrate.

[00:22:32] 40 years of friendship. We spent the weekend in Sonoma. I got my period on the first day we went up and I was, I was incapacitated. I couldn’t do anything and I just wanted to have fun with my friend and I couldn’t. And I also saw her looking at me saying. What is going on? You deal with this every single month.

[00:22:54] She’s on an IUD. She was like, I don’t even get a period. Why is this happening to you? And I think that I needed [00:23:00] to have someone outside of myself see what was going on, to realize that yes, the CBDI was taking was helping. And yes, the THC that I would take was helping, but for me it was starting to just.

[00:23:14] Be so disruptive and I was 46, 47, like perimenopause is coming. I don’t need to be doing this. And I do have to say though that after tracking my periods from when I was 36 years old until six months ago, I used an app called KI have. So much data and, and I really did have a good sense of my body and how to prepare for it and what was happening, and I feel a little bit unrooted not knowing where I am in my cycle or what’s happening and.

[00:23:47] I am so happy not to have the pain, but I feel disconnected. And so I wonder if as women are, are experiencing endometriosis and, and the new treatments that are coming, just a change to not have a [00:24:00] period and yet still have a cycle. I.

[00:24:02] Caitlyn Krebs: Right. I can imagine that’s gotta be a huge shift. ’cause the women who have endometriosis, I feel like they’re so in tune with their body, right?

[00:24:10] Because they’re trying to figure it out. They’re having this every month, it’s intense pain. And then to not have it anymore, I can imagine that that’s a huge, huge shift. Yeah. Just mindset. One of the things I’m super excited about is. Developing drugs. It takes a long time developing ECS therapies. You know, it’ll be five to 10 years before our products are on the market.

[00:24:34] And so one of the things that we’re working on is creating a supplement with cannabinoids that could help women today. They’re already doing it. This doctor that I spoke. In Southern California. He’s like, I don’t know what dose, I don’t know what products to prescribe. I’m not educated. And so, you know, he’s looking at us like, if you could create supplements backed by science and data and therapies that I know how to prescribe and [00:25:00] make it easy for the physicians, you know, I think that will help a lot and kind of solving this, this disease.

[00:25:07] Ellen Scanlon: There are solutions out there. The good news is that cannabis works, but making it work for your lifestyle, finding the right dose for you, those things are really hard, and it’s hard to be your own health advocate when you actually have a disease. It’s one thing if you’re managing a cold or something like that, but when I finally found the doctor, I felt a sense of relief because Sheen could explain things to me that had been.

[00:25:32] Happening in my body for so long in connect dots and, and there’s just something about a really well educated doctor who also understands cannabis. I told her everything that I was doing with cannabis and she was like, that’s great. I’m glad it’s helping. And I just hope that as you talk to doctors, as patients, talk to doctors, to have more patient doctor experiences like that is really what will start to change these health outcomes for women.

[00:25:58] Caitlyn Krebs: I agree. Talking to your [00:26:00] physician and and educating them, right? If you’re an educated endo warrior and you use cannabinoids, yeah, tell your doctor about it because they could then pass the word along to other patients and developing solutions that physicians can trust. That’s really what we’re doing.

[00:26:16] And so it’s an important, right, because there are a lot of supplements out there that don’t have data behind them and that they’re not trustworthy. And so making something that physicians can trust and consumers can trust is the most important thing.

[00:26:28] Ellen Scanlon: What is the next step for potentially finding out whether you have endometriosis?

[00:26:34] Caitlyn Krebs: I would definitely start with the symptoms. You know, check it against all of the different symptoms that the woman is experiencing and to see how many of those she’s having. And then there are a couple apps where it asks you a bunch of questions and we’ll. Give you basically a score of whether it believes you have endometriosis, and these are fairly validated apps, and OB GYN is the one who recommended this to me.[00:27:00]

[00:27:00] So I think you have to do kind of your own self diagnosis, but having a conversation with your doctors, probably number one, and then talking to friends, talking to women who have it right, you understand it. I think it’s such a tight community that when you start talking about it, women wanna support each other.

[00:27:17] The true diagnosis is a laparoscopic and you know, and they actually have to go inside your abdomen and take tissue, but I think there’s a lot that you can do prior to that. There’s also imaging. You can get an ultrasound and imaging that could identify it as well. I.

[00:27:33] Ellen Scanlon: I’ll add a link in the show notes for the apps that Kaitlyn mentioned.

[00:27:37] I am really grateful to Kaitlyn Krebs for sharing her expertise today, and I hope this episode helps you feel more informed and more hopeful. If you or someone you love has endometriosis or think you might have end endometriosis, I want you to know that there are resources out there. You do not have to suffer in silence.

[00:27:58] And if you wanna do [00:28:00] more than just listen. This is the moment Nalu Bio is offering our listeners the chance to try and meld their new line of ECS Powered Wellness blends for stress, sleep, pain, and inflammation while supplies last. I’ve tried it and I’m really excited for you to experience it too. Sign up for their newsletter on their website, meld science.com, and all the details are in the show notes.

[00:28:25] Visit the site today while supplies last. And stay tuned for next week’s show, when Caitlin will be back with me to dive deeper into how MELD was created, what it means to build trustworthy health products for women, and why the endocannabinoid system could be the next big thing in women’s health. Don’t miss it.

[00:28:50] For lots more information and past episodes, visit do the pot.com, and that’s also where you can sign up for my substack newsletter. If you like how to do the [00:29:00] pot, please rate and review us on the podcast platform that you use for listening. It really helps more people find the show. Thank you to our producer Nick Patri.

[00:29:12] I’m Ellen Scanlan, and stay tuned for more of how to do the Pot.