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Period Story Podcast, Episode 86, Dearbhail Ormond: Be The CEO of Your Health

My guest on today’s episode is Dearbhail Ormond, the founder and CEO of frendo, a digital health solution to support endometriosis sufferers and those awaiting diagnosis. 

In this episode, Dearbhail shares: 

  • The traumatic event that happened at the beginning of her menstruating years 
  • How having very heavy and excruciating periods affected her school and university years
  • What it took for her to finally receive a stage 4 endometriosis diagnosis
  • The joyful validation that getting a diagnosis provided her with
  • The inspiration for starting frendo
  • How you can improve your experience at work if you have endometriosis 
  • What happened after she had her miracle baby and the drastic step she need to take to manage her symptoms 

Dearbhail says that you need to be the owner and CEO of your own health and that the more you empower yourself with your own knowledge about your own health and your own body and the stronger it makes your position to advocate for yourself. 

Thank you, Dearbhail!

Get in touch with Dearbhail:

Frendo

Frendo Instagram

Dearbhail’s Instagram


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SHOW TRANSCRIPT

Le’Nise Brothers:          Hi, Dearbhail, thank you so much for coming onto the show today. I want to start with a question that I ask all of my guests at the beginning of each show is tell me the story of your first period.

Dearbhail Ormond:       Yeah, thank you so much for having me on Le’Nise. I’m so happy to be here. You’ve had so many amazing guests and I’m delighted to be one of them now. My first period is, it’s not actually one of those that stick in my mind, but I do, I suppose shortly afterwards I remember a really traumatic event that surrounded my period and that was, I had noticed kind of pain around my period before, but nothing so debilitating as when we were away as a family. And I noticed I gotten, I was getting really bloated to the point where I’d have to kind of go up at least one dress size around my period. And we were away as a family. We’re going to Paris and I was a young teenager. I was so excited and we were staying in a hotel and I ended up having to stay in that hotel for the whole three days that we went as a family because of the excruciating pain that I was experiencing around my period or with my period. And that was the start of, I suppose, severe vomiting, severe nausea, but most of all it was this extreme pain on a pain scale. It was up around eight or nine pain and sharp objects are in your lower abdomen and a rope, like a tight rope is being pulled around your abdomen. And so that’s probably my first memory of issues and challenges around my period.

Le’Nise Brothers:          So you’re in Paris, you’re expecting to have this really fun family weekend, family trip, go to see the Eiffel Tower, maybe have some croissants, maybe take a stroll along the Seine, but instead you are stuck in a hotel. What did your parents do?

Dearbhail Ormond:       Yeah, well look, I’m probably luckier than most in that my dad is a GP at the time, so I had extra support, but my parents have been incredibly supportive throughout my whole journey. But no one knew what was wrong then. So I suppose there was an element, and even coming from me, there was an element of I should be okay. Why am I not coping with this like everyone else can with their period. So yeah, I think my mum was there with me trying to make sure I was okay and give me some painkillers, but nothing was really helping at all. And when we got back to Ireland, which is where I grew up, I think it was probably pretty immediately afterwards that the investigation started around what was causing this. And then over the next few years, I was hemorrhaging so much that I remember in university I’d have to, had to go on holiday with my parents because I was literally too sick because I was bleeding so much.

And really what I had been diagnosed with and what it had been put down to then was PCOS, was polycystic ovarian syndrome, which I may well have had, but that wasn’t the only cause of all of these issues. So there were a lot of tests done, really very little conclusive information came back and I was kind of back and forth to doctors, back into school, trying to continue to live a normal life. And I wasn’t, it really, I often talk about how much it affected me as a young girl and a young woman. And I think in terms of our self-esteem and our body image in particular as young women and girls, and really we should be, I have a daughter and I feel so strongly about this, we really should be loving our bodies and feeling proud of them and feeling proud of their strength. And I certainly didn’t feel that way because I just didn’t have trust in it because I didn’t know what was going on in it at all.

Le’Nise Brothers:          So every month you had these excruciating periods that were very heavy, you were hemorrhaging. And you mentioned how it was very disruptive to your day-to-day life. Can you just say more about how it affected your schooling and then your ability to have a kind of normal university experience?

Dearbhail Ormond:       Yeah, I mean, I would say significantly. I was quite sporty. I wasn’t super academic, but I was fine. But I would say this didn’t help my health situation didn’t help the academic situation either because you kind of lose momentum, right? You are kind of going and studying in school and then you seem well, and then you get a bout of this really severe, it’s like having a bout of a really severe flu every month or even more for a lot of people. So yeah, I was really into sport and I was sociable. I had a great group of friends, but I would say in particular with those two, I found myself pulling back, I played hockey and the uniform, that hockey skirt was just really uncomfortable on me. And socially I just felt like kind of isolating myself was easier because I couldn’t explain what was going on to anyone because I didn’t know what was going on myself.

So I would say they’re the biggest two things. And then I went on to university and the same, like I mentioned there, I had to go on holiday with my parents and it was just this, you are a patient, you’re kind of a burden in a way. And university, I finished a year early and I traveled, went and moved to Australia. And if I look back on, I suppose why I did that, I think I was still searching for something. There was just something I was really searching for or not running away from, but it was just, I wasn’t comfortable in myself I think. And I a hundred percent now think it was all to do with myself and my body and my health around that, around my period, around what then became endometriosis.

Le’Nise Brothers:          So did you find what you were looking for when you moved to Australia?

Dearbhail Ormond:       I did. I got a diagnosis.

I also love Australia. I don’t live there anymore. And it was very good to me in many ways, from my career and such good friends. But also after, not immediately, but the symptoms were getting worse and worse and I was still going to doctor after doctor and really the symptoms were showing more as a lot of pain. So on one instance I collapsed after the shower after sex and I broke my sternum and I cracked my chin open and family friends of my parents were living in another part of Australia and they’re doctors and they just said, look, you’ve got to come down and we’re going to really investigate what’s going on here. And that was just game changing for me because I think I was just finally felt like, okay, there are people taking me serious. Not that they hadn’t taken me seriously, but I had a surgery. They said they found nothing because that was with a general surgeon. And then I had a surgery with an endometriosis specialist and even on investigation, touching, investigating my insides, he knew that and from the symptoms I’d had, he diagnosed me and I had a laparoscopy and he diagnosed me with stage four endometriosis. So the symptoms I think changed from that really heavy bleeding, pain after sex, pain down my leg, very severe bloating. And then the heavy bleeding almost dropped away a little bit. And then it actually came back after I had a child.

But I always had really horrible symptoms around my period two days and around ovulation, two, three days before ovulation I would have nausea, then vomiting, and often a lot of vomiting around my period as well.

Le’Nise Brothers:          On your website, you talk a lot about your story and one of the things you say is that it took you 18 years from the start of your period to then receiving a diagnosis. What did it mean for you to finally get that diagnosis?

Dearbhail Ormond:       Yeah, I’m often asked this question and I kind of think I did. I remember just feeling joyful and elated. But then I suppose I think what would’ve happened if I didn’t get that diagnosis, suppose is another way of asking it. And I think I would be a different person. I almost think of myself as a different person now and because I feel, I think it is around validation, I think for, and I just know so many others who are unfortunately going through exactly what I went through 20 odd years ago. So I think, yeah, I just would not be at all as content. I mean mentally I think of more than physically I feel, yeah, okay, there is something, this is it. I think I had had diagnoses before and I just knew that’s not it. I was diagnosed with fibromyalgia and I had the celiac gene and IBS and I just knew, always knew myself there was something else that was causing this.

And then when they did the surgery and came out and it was like, this has stuck to this and just made sense in how I was feeling and the symptoms I was feeling, and I just felt, well, I was right. I wasn’t making it up. I wasn’t weak. I wasn’t someone who just couldn’t handle pain and that’s what I felt like for so long. So I think as an adult and a person, I think it’s done wonders, a huge amount. And also once you know what it is, you can then deal with it and manage it.

Le’Nise Brothers:          Yeah. Was that the first time you had heard that word endometriosis when you received your diagnosis?

Dearbhail Ormond:       Yeah.

Le’Nise Brothers:          Oh wow. Okay.

Dearbhail Ormond:       Yeah. And then I started to hear, I had a very good friend in Australia at the same time. And then it’s bizarre that the minute you do then you start to hear of, because bear in mind I’m old, so it is quite a while ago now. And then I had this friend who was also had horrendous endo, turns out then she also had the same surgeon, but we just weren’t talking about it. It’s crazy. And that was one of the reasons that drove me to start Frendo because I was just so horrified with some of the support or support or groups that I found online or on Facebook. But yeah, I knew nothing. I knew nothing about it.

Le’Nise Brothers:          Can you say a little bit more about that, about the support groups? Because when you have a condition like endometriosis and there’s a lot of self-diagnosis that tends to happen, a lot of self researching and you hear people talk, doctors kind of disparaging patients who Google their symptoms and talking about Dr. Google, but the reality is that there’s still a lack of understanding of endometriosis and even the different types of endometriosis amongst medical professionals. So can you just say more about what you saw in the groups and what in your opinion will help doctors better understand this condition?

Dearbhail Ormond:       Yeah, yeah, good questions. I think what I saw was, well, what I saw and I found was it was just extremely negative and wasn’t really solution driven or it was like doctor bashing, but it was also almost hatred towards their own body as well. A lot of kind of belly talk, but I can empathise with those thoughts because if you’re living in pain for a lot of time, it really does make you have to dig deep to continue to love yourself in that state. So I saw a lot of that, but there’s still a lot of what I saw back then, which was I have stage four endo, I saw my GP, they told me I have it, which is we would love to get to that stage where primary care have that ability to diagnose. I’m not sure we’re quite at that stage. With frendo, we never ever claimed to diagnose.

The gold standard is still laparoscopy by an expert excision specialist. It’s about working together. It’s about digital health solutions like frendo, working with GPs, working with surgeons, working with charities and support organizations because this is a massive problem and period support on the whole is an even bigger problem. There is a huge amount of support that is needed there. And I think it’s about working together. And I think what we try and encourage and what we find GPs find helpful and consultants find helpful is through Frendo’s tracking or just however you want, writing it down. That was crucial for me is understanding your own history and going in there and feeling as empowered as you can so that first of all, you don’t feel dismissed and you are taken seriously. But it is also about educating them.

I mentioned my father’s a GP and he’d be the first to admit that they just were not knowledgeable on this and they’re getting a lot better, but they’re still not. So what we find with frendo is the benefit of something like that, or even just diarising your symptoms is someone, a patient or a sufferer comes in, okay, I’ve had these symptoms for three months, I’m really ill around my period around ovulation or it’s a whole body illness even wider than that and it’s affecting my work, it’s affecting my relationship, et cetera. That I think provides much more information for the doctor.

I think, yeah, I would always say that’s the number one. I had someone contact me this week saying, oh, my doctor thinks I have endo. She thinks I should go see a gynae. She thinks I should have this. And I’m like, well, hold on a second. Just take note of your symptoms, the ones that really disrupt your life. And then you are always the CEO of your own health. And then go back to your doctor and say, okay, these are my most concerning symptoms. Now I need you to give me the options. So I feel like if I was to go back to that 20-year-old self with a doctor, I would be stronger about dealing with them because I now see that they don’t all know about it, but it isn’t about going, you don’t know what you’re talking about. It’s actually about working together to help each other in a way.

Le’Nise Brothers:          Yeah, I think that’s a really positive message. But I do understand the perspective of people who tend to go down this very negative route when it comes to doctors because it can be quite frustrating when you go and you are saying, I’m experiencing this. I don’t, my periods are so painful, I’m bleeding so heavily. Why is it so painful when I ovulate? And all you get told is periods are supposed to be painful, sometimes periods are heavy and you just have to deal with it and you almost feel a bit gaslight, and it’s something that I see a lot on my social media pages, especially TikTok, the questions like, my doctor told me this was normal. I feel like I’m going crazy. And it can, I see a lot of very negative commentary around doctors because of the experiences that these people have dealing with their own personal doctors, but also the fact that they don’t feel empowered enough to say, well actually I’m going to get a second opinion. 

And so I think that the education work that you’re doing, not only for practitioners but also for patients is really, really powerful because there’s something for both sides to learn. I just wonder with frendo and the medical side of it, have you had any pushback from any of the medical practitioners that you’ve worked with?

Dearbhail Ormond:       No, but I’m interested to hear what kind of pushback do you think we might get?

Le’Nise Brothers:          I don’t know. It’s things like, why do I need this? I already know about endometriosis. Why is this necessary? Why, the NHS can give something like this? I don’t know, I’m just kind of brainstorming.

Dearbhail Ormond:       No, we actually haven’t. And I would take that as a positive in terms of saying clinicians, we have to believe that they want to improve. They can’t do it all themselves just like we can’t and you can’t. No, we haven’t. I think what you’re going to find is the GPs in particular that use Frendo and recommend it to their patients are those who are most proactive in the space and and they see it as this is going to speed up my appointment time with my patient. This is also potentially going to speed up the diagnosis time with this patient because if I understand this person’s symptoms faster and more accurately, well, it’s a win-win. So we’re never ever trying to replace them at all. And I think they obviously see that and we will continue to work with really great GPs and consultants. I think working with surgeons is really, really important, from an informative perspective, I feel like if we’re really going to change the game here, it’s about starting as early as possible. It is about the moment a person gets a period, we have got to have information about everything, fibroids, endo, adeno.

                                    So yeah, I think that primary care piece is really, really important. And the education, I mean, school is just hugely important.

Le’Nise Brothers:          I just want to kind of take a step back and just ask you for listeners who aren’t familiar with Frendo, to take us through a bit of an explanation of what Frendo is and what your inspiration was for founding the company.

Dearbhail Ormond:       Yeah, so frendo is a digital health app and it is mainly for endometriosis sufferers and those who do suspect they have symptoms. So it’s available on the app stores, so both iOS and Android. And what you get really is a endometriosis tracker. So it is very specific to, it is not necessarily like a cycle tracker. It’s very specific to pain type, pain area. And it takes into consideration your diet, your daily activities as well and how that might be impacting pain. We also have a screening tool and a community as well. And really they both the community is credible resources. So resources around preparing for an operation, preparing for talking to an employer about you’ve recently been diagnosed or I’m dating a new guy or girl, I want to explain this, that kind of thing. And then we have lots of really great users stories on diagnosis stories, fertility stories, and it talks to my own experience in terms of the community and feeling so isolated and feeling like, am I the only one who is feeling this? And I felt so alone. 

And then the other is the tracker and that the tracker is really what people find very useful in terms of being able to track it and actually not just show it to someone else but be able to see for themselves, God, this is serious. I’m not making it up. I can see this. So we have also just launched over the last couple of months, our frendo at work program. Again, another thing that’s very close to my heart, because I am not the only one who was really impacted in my career, and this is an expert led endometriosis program for workplaces. So for employers to actually support their employees and their partners, which is a really important piece as well. And whenever we do, we just rolled it out with Salesforce, and amazingly, they offer it to their partners as well, which is super important. And their children, sorry. It’s really important because that’s I think how we’re going to get more support around periods and around conditions like this if we get support from society as well as not just the onus being on us who are suffering.

Le’Nise Brothers:          Yeah, I think the workplace side of it is so important because we do know that endometriosis sufferers do end up having a lot of issues around missing a lot of work, underperforming because they’re not feeling great. And so being able to have something where you can explain to your employer, this is what’s going on for me. I have a chronic condition. I’m doing my best. Please don’t fire me. I think that’s really powerful. And what sort of feedback have you got from that side of it?

Dearbhail Ormond:       Yeah, I think incredible. And I think you’ve just touched on the biggest part of the feedback that we’ve got, which is the leader, the manager experience, which is we provide a lot of communication, training and support. Because I think for me, I never knew how to explain it to an employer or to a manager. And also I think there are a lot of, we did a Salesforce event a while ago, and there was a manager and an employee there who came up to me afterwards, and the employee was stage four endo sufferer. She was feeling awful because she’d missed more work than she wanted to. And then the manager clearly wanted to help. And she said, in spite of all that, you’re still my top performing team member. And I think the difficulty there was the manager wanted to help, she didn’t know how to help. And there’s almost this, there’s still a stigma around menstruation discussion and these conditions instead of us openly being empowered with the tools and the correct information to talk, to have these conversations. And that’s really the key. It’s actually giving the managers the tools and the information to be able to support their employees as well.

Le’Nise Brothers:          Yeah, I think that’s really powerful because we see now there’s more conversations about menopause in the workplace, but what about the other side of it, like menstrual health in the workplace and going beyond having to hide your tampon on a pad when you go to the loo to being able to say to your manager, listen, my period is really painful. I need to work from home. I’m not skiving. I just need to be near my bed or have my hot water bottle or whatever. And that, being comfortable to be able to have those sort of conversations and I think across all different industries, not just your kind of white collar office worker type roles. So I think that side of the company, the whole company is what you do is so, so important, so powerful. But I wanted to go back to your story and your endometriosis journey. So you got the diagnosis, you were in Australia, and then what happened?

Dearbhail Ormond:       I had three other surgeries. So yeah, I got the diagnosis. There was, yeah, I was, happy I suppose. But endo is a disease where just continues to grow unfortunately. And that’s why the laparoscopy is that top, that gold standard of treatment because for me, my ovaries were stuck to my back wall. I had rectal, vaginal, the disease was all around there. And what they do in the surgery is basically place. Back then it was like place an adhesion film continue so the disease doesn’t continue to grow and things stick together and the organs start to damage.

So I was really only getting about six months relief, unfortunately from surgeries, and we were just talking, it impacts your whole life, impacts your career because you kind of come out of an operation, you’re like, yeah, I’m ready to jump back into the world. And dating, I suppose, it was just always there. I was always scared of discussing it with people I was starting a relationship with. And I think the reason that is is because up until very recently, if you Google endometriosis, really what comes up is infertility and painful sex. And that’s really not like, wow, great. I won’t date this girl.

So yeah, I think there’s just so much stigma around it in so many levels, and that really does just, you seem like a confident person, but you feel like faulty. So I think after my third operation, I just had made the decision really to, okay, I have to kind of take this into my own hands and move back closer to my family to have as much support as I can get to manage this. And I’d always wanted to do something of my own. And I was gobsmacked that there was not more support for people with endometriosis. So it kind of coincided with me moving back from Australia and then looking at the market and going, there’s no one properly supporting this community for sufferers and that diagnosis delay piece. So that’s when the idea of Frendo came about.

And I think it was all for the right reason, because then I met my partner and we had this miracle baby, which just, so yeah, I think a lot has happened, but it didn’t make everything go away, unfortunately. But I had my daughter and it was a great nine months because I was very low on symptoms, but they came back really suddenly afterwards, around six weeks afterwards. But I still look at her every day and go, I can’t actually believe that you’re real and a thing. Again, I was told for so much of my life that I would not conceive back when I had PCOS and I was hemorrhaging and telling a young girl that you wouldn’t conceive naturally, it’s just bewildering. And I think it just frames this whole life for you in your mind. And I think it did for me because I kind of threw myself into my career, which is not a bad thing, but you do tend to frame a life that is, okay, well, I can’t have children, so I’ll do this.

So yeah, that’s basically where we are now. But I had to make quite a serious decision, I suppose last year that the endometriosis I was told came back very quickly about six or seven weeks after I’d had my baby. I had collapsed with her when I was alone with her at home. And that really probably scared me the most from any situation relating to my health because it was now impacting someone else. And I was just so fed up. I remember calling my parents after being in A&E and just going, I just can’t do this anymore. I have a child, I just can’t do it anymore. I can’t keep battling with this condition. And they also then diagnosed me with adenomyosis at the same at that time. So that possibly was the reason for the bleeding heavily, we don’t know. So I wasn’t ready for it then. But I did make the decision later in the year to have another excision surgery along with the hysterectomy. And I don’t know if there was anything else I could have done. And I don’t know still if that will help. I think it will certainly help with the adenomyosis. But yeah, I think it’s pretty crazy what us women are pushed to do.

Le’Nise Brothers:          Yeah. Yeah. Was it a full or partial hysterectomy?

Dearbhail Ormond:       No. So I still have an ovary and I’m not sure if that’s causing me some issues already. But I will say overall, up until very, very recently, my symptoms have improved. Even my energy levels overall. I wasn’t even getting a week without some sort of pain. And 70, 80% of the month I was struggling a lot. And with a business and a young baby, I just couldn’t see what else I could do.

Le’Nise Brothers:          And was there a moment where you had to think, I need to take stock of who I am now post hysterectomy, because if you’re going through this condition is so it’s a whole body condition, but when we talk about it, it can be so womb focused and then now the womb has gone and was there, was talking to women who have had hysterectomies before, they talked about a kind of grieving process that they’ve had to go through. Was it similar for you?

Dearbhail Ormond:       Yeah, I think so. And without me even knowing when you’re actually asking me that, I’m feeling a bit raw, I think it’s also something that we need to talk about more and they just, again, we’re not prepared for these things possibly because everyone experiences it in a very different way. I’m quite practical. I’m quite pragmatic. The decision was a very considered decision and it was not taken lightly. But once I’d made the decision, I suppose it was done. And in my mind I was also, even if I could have more children, I’m not sure I’d be capable of having another child from energy levels. However, probably I would say four months after the hysterectomy, I definitely noticed. Is it grieving? I would say it’s more sadness.

I wouldn’t say it’s to the point of, not even close to regret, but it is more like, why do we have to do this? That was my body. That was the body I was born with. Why do I have to change it in order to make it less intrusive and invasive for me? And I think I’m still learning about what’s hormonal now and what’s playing up. I think the answer to that is I’m taking it a little slow and conscious of new emotions, I would say, and I’m just, I’m going with it. I see little babies and yeah, I go, God, my girl won’t be that age anymore. But I just try to sit with it as much as I can. But I think it’s more like, it also kind of pushes me off. It is more the anger and frustration that we have to go through these things as women in order to live a normal quality of life.

Le’Nise Brothers:          So someone listening through this thinking that they might have endo, they’re not sure, they feel like they’re getting the runaround from their doctors, they are tracking, they’re doing the things that you’ve said about noticing the pain, having kind of a vocabulary around their pain. What would you say their next step should be? What else should they do?

Dearbhail Ormond:       So if they’ve seen a doctor already?

Le’Nise Brothers:          And they’re kind of feeling that they’re getting the runaround.

Dearbhail Ormond:       Change doctors, I mean, that’s easier said than done, especially with the system at the moment. But it’s not just a doctor necessarily. You can find a nurse who you really trust. You can find a counselor who you really trust. The trick is to actually find someone who you feel heard with and who will take your symptoms seriously, take your feelings seriously. We don’t need a label to be in pain and for us to be struggling, that’s the thing. But I would say the key is trust with whoever it is. Ideally it’s someone in a medical position, and I think you know your body best. If someone is telling you no, that’s normal and you feel like it’s not normal. You trust yourself. You trust yourself and you just keep fighting. And whether it’s trusting a friend, a mother, a father, to help you along that way, try and talk to them as much as you can to find that person who you can trust.

Le’Nise Brothers:          Yeah, I completely agree that self-trust is so powerful, not second guessing yourself and knowing that your experience is real and that you really can get a lot from it, and you can use that to get the result that you need. Thank you so much for your time today, for sharing your story. It’s so powerful. The work that you do is so powerful, and I know that you will continue to help so many people. Is there one thought that you’d love to leave listeners with today?

Dearbhail Ormond:       I do think it’s around that trusting yourself. I think it is. I never ever want someone to feel that they’re alone. If you feel like you’re alone and you don’t feel like being on social media, we always say, you can contact us at hello@frendo.co.uk. You are never alone in this, and please don’t feel like you are. And then the other message is really just be that owner and CEO of your own health. And I think the more you empower yourself with your own knowledge about your own health and your own body and the stronger it makes your position in front of anyone on your journey.

Le’Nise Brothers:          Fantastic. I think that’s such a powerful message. Thank you so much for your time.

Dearbhail Ormond:       Thank you. Thank you so much.

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