Season 4 Episode 6: Beyond the Pain: Anna's Journey with Endometriosis

Join us in a powerful conversation with Anna, as she shares her journey with endometriosis, breaking down misconceptions and fostering awareness.🎙️

 News Alert! GOSH podcast is now streaming in video format on YouTube.✨  Try out our new format through the link: https://youtu.be/qg5QQb0pyq8

Anna's Bio: 

Anna Leonova is a dedicated researcher currently pursuing a PhD in Women+ and Children’s Health Sciences at UBC. She holds a BSc in Biochemistry and Molecular Biology from Trent University and an MSc in Medical Sciences with a specialization in Physiology and Pharmacology from McMaster University. Anna's academic journey has been intertwined with her personal experience, having battled endometriosis for nearly 18 years. 

For the past seven years, Anna has focused her research on endometriosis, emphasizing the importance of knowledge translation. She believes in the responsibility of researchers to effectively communicate their findings to those directly affected by their work. Alongside her academic pursuits, Anna engages with the endometriosis community through social media, sharing informative posts to raise awareness and foster connection. Anna's pragmatic approach and commitment to bridging the gap between research and personal experience make her a valuable contributor to the understanding of endometriosis. 

Resources:

Book: “The Doctor Will You See Now” by Dr. Tamer Seckin

Endometriosis Network Canada: https://endometriosisnetwork.com/

Endometriosis and Pelvic Pain Laboratory: https://endopain.endometriosis.org/

• Resources, educational videos, research opportunities, and community events
• Upcoming event: Run to end endo (in support of The endometriosis network Canada) – June 9 in Vancouver – follow the lab for more information
• March – endometriosis awareness month: learn and share about endometriosis!

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Transcript

00:00:53 Almira

Hello, everyone. Welcome back to the Gosh podcast. As you can tell we’re utilizing a new format today, we're trying to include video experience to you in addition to an audio experience, and we plan to post this podcast with this episode with Anna on the YouTube. So, we would be more accessible to people.    

So let me introduce you Anna. So, Anna is a dedicated researcher currently pursuing PhD in woman and Children's Health Sciences at UBC. She holds a bachelor's degree in biochemistry and molecular biology from Trent University and a master’s degree in medical sciences with specialization in Physiology and Pharmacology from McMaster University, Anna's academic journey has been intertwined with her personal experience having battled endometriosis for nearly 18 years. For the past seven years, Anna has focused her research on endometriosis, emphasizing the importance of knowledge translation. She   believes in responsibility of researchers to effectively communicate their findings to those directly affected by their work patients, alongside her academic pursuits. Anna engages with endometriosis community through social media, sharing informative posts, raising awareness, and fostering connection.

Welcome, Anna. Thanks for joining us today.

00:02:51 Anna

Thank you for inviting. Very happy to be here.

00:02:55 Almira

So, to start, maybe just I know we talked a little bit about you already, but is there anything else you want to share about yourself?

00:03:04 Anna

Maybe I'll just mention that I am an international student, so I think that kind of also feeds into my background and why I do the things that I do. I do research in Endometriosis, you're right. I do have personal history with this condition as well. In my spare time, I also teach . I teach the human anatomy Physiology course I also almost everything I do somehow relates to individualism, so there will be classes about industrials or some tests, or also I work as a scientific writer or female laboratories that's the company that also is currently working on Dimitrios Diagnostic test. And yes, you're right, I do enjoy spending time on social media where share posts or write them or share other people’s pieces because I do believe that as scientists it's just not enough if all you do is you perform like actual web lab experiments or yes, you conduct qualitative research, it's all fantastic. But if it does not get delivered to people who can actually benefit from it, then there is only partial, I think benefit that we are actually providing.

00:04:23 Almira

 Yeah. As you said, we'll talk about it later for more. But yes, you said delivering the information, the research that you have the things that you have discovered to the public I think is also important, right? Great. You're so multifaceted that I didn't know you tearing and also work with companies like in private sector. Wow, cool, ok. As you said, you had experience with endometriosis, with yourself. And can you share a little bit of that personal journey within the maturities and if it did, how it influenced your decision to pursue research?

00:05:02 Anna

Yeah, absolutely. It started there early for me. I was 11 years old, so that was the time where I would have got my first menstruation. So, this is kind of very similar to what other people experience although endometriosis is very different and it does presents itself very differently, people have a very symptom and it's not quite the same for everyone, but it is quite common to start having menstrual periods very early and have this agonizing pain. So actually, when I first got my period, I really thought I had appendicitis. So, it was pretty bad. but and yeah, I went through the whole very stereotypical path of going to doctors and they wouldn't believe me, or they would diagnose me with being a woman. So, that was amazing in at the age of like 11 and then the consequent years, you just keep hearing that this is what your life is supposed to be now this is normal. This is something everybody has but like yes, I was young, but I wasn't, you know, like silly, I had family, I have mother, I had that at that time only one sister and friends and classmates. And it didn't quiet, I guess, make sense in my hand that how come if that's so normal, why do they not miss classes. They keep going to school, they keep going to work, they keep, you know, going everywhere they don't have pills on them at all points, they don't have to annoy their teachers because they have to miss yet another class, you know? So, it's just like, oh, am I actually that weak people were talking about, like, low pain tolerance and things like that. I'm like, oh, wow. Like, I must be really that that probably something is bad with me. But yeah, so it took a little bit of time. Kind of advocating for yourself and I think, yeah very early on. I was quite curious, and I was reading a lot about human anatomy and different conditions. At that point I didn't know what analysis was and it didn't really come up and I was again young, and I don't think Internet was really a thing just yet, at least not for my age group. But yeah, I had two things going for me was my curiosity and this utter feeling for I have to stand up for myself. This kind of like unfairness. And I have to buy it. And I'd lots of support for my family, which I recognize that everybody has. But this is something that has definitely shaped my experience in a more positive way. I didn't have to explain myself to my family whenever I would need to like leave early from school or not go at all. My family was always 100% supportive that was great and yeah, and my mother, she helped me find different doctors, and it took many years and six years for us to finally get the diagnosis. So, we find the Doctor who was into research, although she was. I'm glad that she told me I had endometriosis, but she was a little bit too much into symmetry oasis. So, the second she saw me, she's like “Yes, you haven't endometriosis”. She, like, got excited. But then she right away told me “Ok, so that means you're going to be in for trial. Well, at the age of 17, she told me that just like, right off the bat like, no, like, context, no, nothing. That was devastating not going to lie was devastating. I come from a very family-oriented background. I was always looking up to my family who got married at, you know, 19 and had three children and been together ever since. And like, this is exactly what's going to happen to me. And then just like that at 17, you're like, OK. So, that was heartbreaking. But it took a little bit of time to process that, but I gain kind of bounce back into the whole path of learning more about it and not giving up. So, that's how I got really interested in medicine and gynecology, and now I actually had something to hold on to. So, this definition there and the trials is what can I find out about it. So that's why I then pursued some school related activities and biotech medicine, different placements, internships and then as a result of all that undergraduate degree where already there we start to doing like a thesis study on endometriosis and it just kind of like “yeah, snowballed from there. So, never have I haven't stopped ever since.”

00:09:31 Almira

Ohh my, that's an inspiring story, to be honest. It's at point sad. Because to be able like to be dismissed for so many years and to have this condition since you were really a child and having to advocate for yourself and having to like it's tiring, right? It's exhausting sometimes, yeah. The child you probably have your I don't know like your friends going around running around and like having fun and you like have like that condition pain. Yeah, it's hard, but I'm also happy that you had your family support and support system because I find that not everybody probably has that. Yeah, which is great that your parents, your family, trusted you and like persisted and going to the doctors and yeah, that's really a big deal as well.

00:10:39 Anna

 Absolutely. 

00:10:41 Almira 

Yeah. You said, you didn't stop since studying and researching and the meeting endometriosis for the past seven years, I imagine. Yeah. And what specific aspects of endometriosis did you do research on like going from your undergrad disease and coming to your PhD now?

00:11:01 Anna

Yeah, I've done very different things actually. So, I'm very also grateful for my experiences in my supervisors. I in my undergrad, I was working on how physical activity can affect symptoms of endometriosis. During my masters, I had kind of like a more framerates study where we were testing a new drug for endometriosis on an animal model. And then now I'm working on qualitative research that is going to look at the experiences of people within Demetrios. So, how can endometriosis impact their lives? What particular category they're affected? We're going to be doing this project through a relatively new concept. It's called Digital Storytelling. So, this is when people meet online, and they create their stories, so they don't only tell us, or they don't write about it. It's not just an interview. So, people cocreate actual stories about an impactful kind of event of their life in relations to endometriosis, and it's open to any topic of their choosing. So very eager to see what comes out of this project. This is very important because there was a pilot project which did show that people were very willing to share their stories publicly, and in fact you can find all those stories on our website, and I'll share all those things with you as well.

00:12:29 Almira

Uh, thanks.

00:12:31 Anna

Yeah. And another thing that people from the pilot project noticed was that the process of sharing and cocreating stories for us and sharing it publicly had this therapeutic benefit to them. So, we are very excited to explore that now as well. And another thing that we will be also looking at is how not only creating from the perspective of a person can affect your well-being, but also as part of the audience, if you are watching and engaging in this kind of format, how can it impact those people as well? So, it's a long-term big project, very excited. I haven't done anything quite like this yet. I see how beneficial this can be for the wider community. Again, we'll be able to identify some of the categories that may be common themes that come up through people's experiences and maybe we can like some of the knowledge translation avenues that we could find out, so whether it's work and maybe we should be more proactive telling employers about this condition, so people get more support there. So, yeah, it's going to be very multidimensional. So, I'm very excited.

00:13:50 Almira

I would imagine you would like with this setup and with this research approach you would like you to have open a lot of avenues. It seems like a lot of avenues for new research and see more projects from that. Yeah, which is really great. And you coming from like exercising endometriosis research to like drug testing to qualitative research is really like you're tackling endometriosis from all the different directions, which is also really cool and great. Yeah, and I know you also do in addition to your research, you also engage in social media with community with endometriosis community, you share informational posts, you do Instagram stories. I also follow you, so I know you share all the useful tools and information. So, which is really, really great. I also tried to share with you whenever I see something interesting.

00:14:56 Anna

I know, yes, thank you.

00:14:57 Almira

You were the person to go. Because of you. I am the person without endometriosis, you just kind of educate myself about that because before I'm also a PhD student in at UBC. I also studied Women's Health, but I haven't really heard about it and to be honest, before joining UBC and before maybe talking to you more and hearing about the research that your group is doing. So yeah, for sure I am more educated about endometriosis because of you. It is great and about that, so I was going to ask your question about how do you see the role of social media about raising awareness, about endometriosis and fostering connection with the endometriosis community? 

00:15:54 Anna

Yeah, I think social media is very powerful. Definitely very important, because you can get information right now and very quickly, very efficiently. In that perspective, I think, yeah, social media is great whichever app you choose to use, and you're right about the sense of community. I think this is something I was lacking because until I started really researching endometriosis. I wouldn't know that they're like, it's so calm and then like, I didn't know anybody with endometriosis, people don't really talk about their, you know, pain about their periods, especially it's not, it's stigmatized. We don't talk about that, never. But social media can also be dangerous because of misinformation and also, it's fine because of this constant flow of information. So, I think people should just be very cautious and maybe limit their use because they need to be a balance between finding useful Information, finding the support group, finding you know, sometimes there's so many means right now about endometriosis too, and like it's great. But I think even for myself, as much as I think I do this professionally and I know how to kind of separate personal from professional. But if you submerge yourself too deep into this and have this constant reminder of your already chronic pain. It can also have devastating effects, so it's important to draw the line so it doesn't really impact your mental health. 

00:17:29 Almira

So basically. We'll do.

00:17:30 Anna

Overdo it.

00:17:31 Almira

Overdo it. Yeah. And not like there is a danger of like it penetrating to different aspects of your life and trying to limit it.

00:17:42 Anna

I don't think there are studies on that yet, so maybe this is something I can do next. But I like just speaking of personal experience here. I do believe that social media can also have a very dangerous impact on our well-being.

00:17:56 Almira

Yeah, for sure. Yeah, well, this anxiety maybe. My mom actually always sends me the posts about, like, “oh, don't do this, this is dangerous. Don't eat this food. Ohh, you have this pain. It can be this”. This scary sort of videos and yeah, and sort of not professionals we don't know about their credential and what they're talking about. Yeah, it also can bring up anxiety. So yeah, as you said everybody, I would even say even so, the people with chronic conditions should be more selective in terms of their, yeah. Need social consumption. Yeah, that's a really good point. And I know you also mentioned about misconceptions a little bit here that social media and have some misconception about diseases and what are some of the common misconceptions about and the materials that you encountered in social media or throughout your like journey with endometriosis and being a researcher? 

00:19:16 Anna

 Yeah. So, definitely there's lots of misinformation in social media and in our just, I guess, communal knowledge mostly it's around definition of the disease was the treatment was the perfect you know strategy for diagnosis. And in all fairness is as dangerous as this is. I have absolutely 0 tolerance for posts or like stories, whatever that is about anything that has to do with blaming people with endometriosis is in like, oh, you've done this in your life that's why you have endometriosis, or you haven't done this yet, like, I don't know try this gluten free diet and that's why you still haven't endometriosis. No, and I want to make this very clear that there is nothing you have done to have endometriosis, there is nothing you could have done to prevent it in the first place. And your journey can become better through different treatments and different supplementary techniques. But ultimately it is very difficult to get rid of this disease and it is always great to have your best interest always in mind and you know, kind of precede the path to recovery. But it is not your fault, and people especially I find that for some reason, maybe because English speaking kind of resources are a little bit more informed at this point, I see less and less English-speaking kind of posts about this, about blaming people. But yeah, I also have like I speak Russian, right? So, some Russian speaking post stress sometimes really, really make me angry and I do repost those and I flag them, and I complain about them. It is not OK. Yeah, those people would claim that some kind of diets or exercises, they will cure your endometriosis. And just because, like the pain is in your head, you should get pregnant. That's another one, that's a favorite one. Another advice. People try to give unsolicited advice to people, or it's a career driven disease and that's why you still have endometriosis like I don't know why we have to talk about this in 21st century. This is ridiculous. It's a condition, it's a painful condition for some people. It is very multifactorial, and it affects in some people fertility, it affects gastrointestinal symptoms are painful pacts, that’s painful sex is associated with endometriosis as well. People have very different symptoms, they have done absolutely nothing to have this condition and in addition to like constantly implicating for themselves in terms of finding the right doctor, finding the right diagnosis, they also for some reason have to advocate that it isn't their fault. I think it's just very heartbreaking that this is something people have to go through in addition to everything they're already going through on a daily basis.

00:22:11 Almira

Yeah, yeah, I agree. I think there is a lot of like cultural differences still in terms of like I'm coming from Kazakhstan, and I haven't ever heard of endometriosis, which is also one thing one point and yeah. And how the information is delivered. Yeah, it's quite different. And I'm liking that there is a shift, at least in the English language posts and the English-speaking community at least that it's not the patient’s fault. Yeah, I think that's great. Thanks. Shading with that misconception, we will keep that in mind. And I think it's very encouraging for the individuals who are listening to us with endometriosis or like, have suspicions about endometriosis. Yeah. Then it's really important to hear. And is there are any, maybe other advice or resources, would you recommend to help people, a person who is diagnosed with endometriosis, to help deal with the complexities of the disease.

00:23:29 Anna

Yeah, I would say like if you already have a diagnosis then so you at least like you know what it endometriosis is. So, I would actually suggest a book which is called the Doctor will see you now by Doctor Tamer Seckin from. Yes. It's a great book really kind of putting everything together. Some of the common symptoms, some of the common treatments and diagnosis. It kind of presents endometriosis through stories by the people. So, I think that book did a really good job, kind of summarizing it. And also, again communicating that it isn't your fault, the pain is not in your head. It I think it's a great resource for validation some of the feelings people have probably half collected over the time by the time they got their diagnosis, I would suggest always listening to your body. You know your body and you know how you react to different diets, if this is something you would like to pursue, a supplemental strategy and also wants you to find the doctor that you trust. They will probably suggest different treatment strategist. So, do trust the doctor that you chose and give them a chance to try out different treatments, whether it's medication or anything else, different supplemental modalities. But then ultimately, also listen to your body, because yes, it takes, especially if we're talking about some hormonal medication. It takes a while for the body to adjust. So don't maybe say no immediately take some time, give yourself a little bit of time to adjust, but then ultimately to listen to yourself because you will know whether you need a different dose or different mode of delivery. You know best your body. And maybe some of the other things ultimately just to help alleviate some of the symptoms. This is not to say that this is going to treat endometriosis pain. No, but some people have found some supporting self-management techniques useful and this would be through diet through exercise, pelvic floor physiotherapy, acupuncture, therapist. So again, I’m not saying unique therapist because this is your in your head. I'm just saying that endometriosis is associated with many other conditions and some of the supplementary techniques may be useful for some people.

00:26:01 Almira

Mm-hmm. Yeah, that's great. Yeah. And as you mentioned about, like, the mental health aspect of it is really crucial when you, like, have a chronic condition, really any chronic condition, especially even more that dealing with the pain, right? It can bring up some difficulties also mentally, which is yeah, great point that you mentioned that. And thank you. So, another I think thing I wanted to talk about was about healthcare professionals. You mentioned that there is some healthcare professionals that would say that's in your head or some that are not aware about endometriosis while others can be really proactive. And yeah, which is a different kind of like healthcare professionals. And I was wondering how can general public and maybe more importantly, healthcare professionals better support individuals with endometriosis?

00:27:08 Anna

First, I would say acknowledging a pain and condition and being more informed about it is step #1 because yeah, people have reported that although they wouldn't like, it's very difficult, right? That the treatment for endometriosis typically involves surgery, but just the fact that you are getting some kind of a definitive diagnosis, it already helps greatly just so again to kind of understand. But you're not going crazy. And again, like you're being validated, so acknowledgement is #1. So, I think what we're doing now like running different campaigns, those are very the crucially important as well. Canada is very proactive and working on the national plan which is supposed to secure some funds for the research activities, for support for people with endometriosis. I think yeah, some of the other people, I think you may invite for the podcast as well. We'll talk about their specific projects, which are also great, and we're working specifically on educating and raising awareness through in the next generation of healthcare providers. So, this is something great that's in the works, that's going on. And again, I believe that the project I am currently working on will also supports raising awareness with the healthcare providers and the wider community as well.

00:28:39 Almira

That's great. And what about general public? Let's say your friends, you're like someone. Yeah, it's also, I think, important, right? Like to be maybe more informed about the disease is one thing, but how can maybe someone physically support or yeah, the person with endometriosis?

00:28:58 Anna

Absolutely. Yeah. So, there is the Endometriosis Network Canada, and they have different social media platforms, and they do talk about the role of the partner as well and the community. And there's just so much on social media. So, it just like, you know, like people are sharing their posts, I think that's something that's already great. But also, some of the other works that has been a result of hard work of my current lab is so they're educating people in schools and it's both like boys and girls and just so like, what is normal kind of period, what is endometriosis, I think this is very important as well, and I think we can talk a lot about changing global things, about changing, you know, national campaigns and funding and school curriculum. But I think where it really should start is at your own home when you're talking to your children, when you're talking to your parents. Uh, we tend to talk about big things like and it's great. And even that I think maybe I'm biased because I am research, maybe I speak about this with my family, but it's like cancer dispositions and risk factors, right? Maybe some other people don't even talk about that. But other conditions, especially stigmatized as endometriosis people don't talk about that. So, you wouldn't even know if your like Grandmother had it, if your mother maybe she's suffering in silence, and she would never tell you. So, I think my personal advice would be to open up those conversations with your family, with your children, with your parents, with relatives, and just it's great to be informed about what has been going on and, you know, and family medical history. It's your information and then you don't have to share it with anyone. But your children, when they start experiencing something like this, it's much faster to, you know, to get the right diagnosis. If you've been informed that this is something that has been going on, in fact in your family. So, I think we can all start making a little difference already today.

00:31:05 Almira

So having started those conversations and talking about it, yeah, as you said, there's also taboo right to talk about periods, people still are uncomfortable about all these things, but we should do it. It's really helpful and empowering, I would believe for people with conditions, right. Yeah. And I think it would be our last question is going to be about the future of endometriosis care. And you yourself, researcher advocate and the patient living with the condition, how do you envision the future of endometriosis care and what do you think is essential to improving overall landscape for the patients. 

00:31:54 Anna

I think it would be great if tomorrow would develop a test to diagnose it, and then the day after tomorrow, pill and just to treat endometriosis and we all lose our jobs and go on like fantastic retirement. But it's probably going to take a little bit longer than that, it is definitely a multi-step approach that we all have to take. I'm very glad to see this improvement in healthcare providers education we are raising awareness both in like professional circles and like as you said, the community as well. I think I'm seeing personally quite a bit of change just in the landscape and I know how algorithms work with social media, but I think there is just generally many more of those support groups online. They used to not exist. So, I feel like in the last like five years at least, I feel like there is a lot of change going on there are national, international symposiums that are talking about endometriosis. So, I think we are going in the very right direction. But again, I would start from the family and your local community. I think this is great. And another thing that everyone can do already to change the landscape a little bit just be kind to people. You never know what they're going through, what its endometriosis or not, to be honest. You never know what kind of situation they're going through, what health condition they have, try not to judge and be very supportive and just be kind and don't assume anything.

00:33:29 Almira

Yeah, that's great. That's great that you mentioned like a big picture ideal world, but also like the small steps that everybody can do, which is really great, which you also did for the support that we can provide for endometriosis community, yeah, which we all can do as well. Yes, that's great. I think we can, yeah, that was our last question and thank you so much for sharing about all your experiences and your personal life and your research. Thanks for doing all the work and thanks for advocating for the people for these conditions which is, I think it's really important then. Thanks again, I will link all the resources that you mentioned in the show notes and yeah, and this is the series about endometriosis. So, we will be hearing more from like Anna's colleagues, Doctor Paul Young, doctor Natasha, or in the future. So yeah, stay tuned and thanks for listening.

00:34:36 Anna

Thank you for having me.

Thanks for joining us on the Gosh podcast to learn more about the Gynecologic Cancer initiative and our podcast. Make sure to check out our website at gynecancerinitiative.ca.