On Navigating Endometriosis Care - HIMSS Europe Series with Julie Hanell

I'm imagining that for endometriosis number one, we'll be able to have real preventive care and then when it comes to laparoscopy, you know, we'll be able to probably do some laser treatments. My name is Julie Hanell. I am a podcast co-host and I am at the HIMSS Conference because I'm sharing my story around endometriosis.

Hello dear listeners. Welcome to a new episode of our HIMSS Europe special series on Narratives of Purpose.This week I bring you interviews with two speakers of the HIMSS Women's Health in Focus track from the session titled "10 Years Too Long: Prioritizing Endometriosis".These interviews were recorded in Paris back in June at the HIMSS, the Healthcare Information and Management Systems Society European annual flagship event, also considered as Europe's number one digital health conference. For those of you listening to Narratives of Purpose for the first time, my name is Claire Murigande. I am your host on this podcast which is all about amplifying social impact by showcasing unique stories of global change makers who are contributing to make a difference in society. My guest today is Julie Hanell. Julie is the co-host of She Hustles, a podcast show for European women to learn about mindset and business.Julie is also an endometriosis patient. She shared her personal story with the disease for the first time on stage at the HIMSS Conference and she tells me more about it in our conversation here.If you are not familiar with endometriosis, let me give you a bit of background so you can understand why awareness, diagnosis and developing effective treatments for this chronic condition need to be prioritized. Endometriosis affects 10% of women and girls globally. That's 1 out of 10 people.So chances are you already know someone suffering from endometriosis whether they have been diagnosed or not. Endometriosis is associated with severe life impacting chronic pain, fatigue, sometimes anxiety and infertility, to name a few.With endometriosis, tissue similar to the lining of the uterus grows outside the uterus. This leads to chronic inflammation and scar tissue forming mainly in the pelvic region.There is currently no known cure for endometriosis and treatment is usually aimed at controlling symptoms. You'll find a link to the World Health Organization website in the episode Show Notes that provides you more details on this condition.Remember to rate and to review our show wherever you listen to your podcasts or simply share your thoughts and feedback on the Narratives of Purpose website. Using this short bit ly Narratives of Purpose and then select the Review page. For now, get comfortable and let's begin the conversation with Julie.

My name is Julie Hanell. I am a podcast co-host as well called She Hustles. And we are trying to help women in Europe to get started with their business and navigate that part. And I am at the HIMSS conference because I'm sharing my story around endometriosis.

So this is your first time at the HIMSS? at this congress?

Yes.

It just so happens that I'll be moderating the track where you speak.First question is, you know, what is it that you want, the audience, the participants who will be at this, at this session to take away from what you're going to talk about, like your endometriosis journey?

Yeah, I think there is so much talk right now around endometriosis, but there wasn't, six, seven years ago, when I was not even diagnosed, I was told that I had IBS or some kind of random, you know, diagnostic, that it wasn't basically endometriosis. But then the biggest message, I think what I want the audience to take away is you actually have to do your research.You actually have to meet several people. I met plenty gynecologists, women that I thought, great, they're going to save me. Instead, it was a bit of a roller coaster.So I really want people to actually put the time and do the research and meet multiple people and travel even, because that's how you're going to find that person who will make it better for you.

So you mean as patients, when they don't know yet or they haven't been diagnosed, you're basically encouraging them to find the answers everywhere.They can not just take the first thing they're told and go for second, third, fourth, fifth opinion and even get outside of their country if it's possible. Is that correct?

Yes. I know it sounds like hard work, but for me, it was such an eye opener.When I got to Cyprus actually last year, I found this amazing gynecologist, but specialist in endometriosis.And obviously I think we spend a lot of time, even more so now with ChatGPT to self diagnose, you know, and so I just thought, let me have a look with this woman, because that's what I think I have, although I haven't been told so before.And in five seconds, I mean, she literally, you know, put the thing in me and kind of looked around and she was like, oh, yeah, you have endometriosis and adenomiosis, but you also have IBS. So I was like, wow.

Oh, my goodness.

Yeah, wow. So since then, it's been incredible in the sense where, you know, I just, I have the right medication, I've had some surgeries, but she's been.Yeah, like an angel.

Basically a lifesaver somehow.

Yes, 100%.

One of the discussion points in this session is that it shouldn't take 10 years on average to be diagnosed. That's the first part you're diagnosed. But even the treatment path is not always optimal and it's still a lot of surgery.We need more innovation, basically. So from your journey so far, have you been part of maybe communities of patients? How do you see the awareness growing, specifically in France?Because you live in France and maybe you can talk about other countries like Cyprus.

Yeah, that's a great question, because that's the part I've been missing. Traveling around a lot, working remote, so you don't meet as many people.And so, you know, it's not like I'm meeting someone for the first time and saying, hey, I have endometriosis, you two, let's get together.It takes a bit more time, but I can see definitely now with Ida Tin, who's speaking a lot about it on LinkedIn, that there are so many women that have the same issue.While that's also the reason why I'm here, because I commented on her post and I really wanted to raise awareness and I wanted to be open because the more open we are, the more transparent we share stories around our endometriosis, then we can start creating a community. So that's in general. And then you asked about France, so I have a few friends here and it so happens that two of them have endometriosis.So it's been quite funny because one will be like, oh, you have to try this acupuncturist, he's amazing, he'll help you. And then the other woman would be, no, you have to go to this clinic. So community helps.It's everything, I think, at the end of the day to get better.

And how was the fact of being an endometriosis patient, because it's not only about what you go through, but also pain management in the long term, how has that influenced your career as a professional?

Yeah, I have a very high pain threshold.That's what my gynecologist said, or the specialist, because twice I was in a surgery for a 9 centimeter cyst, which really was pushing on my lower back and nerves, and it killed me, literally, like I couldn't. I mean, that's the only time where really endometriosis hurt me badly because for three months straight I couldn't sit, so I was working standing up.Luckily I had a stand up desk, but I could literally not do anything. And that was really, really hard.But ultimately, in general, you know, I've started doing small remedies, you know, always drinking hot water, obviously what you see having a hot bottle.But it's definitely been more of a pain for like lifestyle, less for work, but more for going out and having dinner and enjoying myself without fearing that I would be feeling, you know, bad in my stomach or those type of pains.

In general. About this conference, do you have some special expectations because you'll be here for a couple of days? You know, what are you looking forward to?

I am really looking forward to any research and any innovations in the women health space. I think today with AI and how things are accelerating, it's the big talk, right everywhere at every conference. So I really want to see that.And yeah, I'm keen to meet some founders, keen to meet people that are extremely creative with technology and health. And yeah, just excited to be here and meeting you and speaking tomorrow.

Looking forward to it. And maybe a final question, like outlook, I mean, you're pretty young.How do you see this whole space, I would say femtech or women's health evolving in the next five to ten years. How do you imagine this? And particularly when you talk about endometriosis care.

So I want to go back a bit because I had a surgery about six years ago in Sweden, in fact, where I used to live. And that was fabulous in the sense where the laparoscopy I had was robotic.So I met a woman shortly after my surgery who had a laparoscopy 10 years ago, I think 15 years ago, and she had huge scars and mine are this small.So I think just by looking at that, you know, that progress already, I'm imagining that for endometriosis number one, we'll be able to have real preventive care that helps with cysts, with any of the obviously chronic pain that we get.And then when it comes to laparoscopy or if there's anything to be done in the uterus, in the womb and so on, we'll have even smaller robots or, you know, we'll be able to probably do some laser treatments or, I don't know.

Less invasive treatments, basically.

Exactly, less invasive. And also one thing that's really hard with those surgeries is usually the next few days. I mean, I remember the first surgery was atrocious.I couldn't literally I couldn't sit, I couldn't get in a car and be driven around like I felt. It's weird, you know, you're in your 20s and you feel like you 98 because you can't do anything and you can't eat.And so I'm just hoping that not only the surgeries will get better, but, you know, the care after the surgery will also improve.

Well, I hope we won't be here in five to ten years to talk about it and it will be solved. But thank you for being here.

Thank you so much for having me.

If you wish to follow Julie Hennel's activities, be sure to connect with her on LinkedIn. As always, the link is available in the episode Show Notes. Thank you so much for taking the time to tune in today.Join me again in a couple of days for the second episode featuring another speaker of the Women's Health track session titled "10 Years Too Long: Prioritizing Endometriosis".I will speak to Dr. Jérôme Bouaziz, an OB-GYN and health tech entrepreneur who sees women's health as the most powerful entry point to redesigning the entire healthcare system. Until then, take care of yourselves, stay well, and stay inspired.