Endometriosis with Kathleen King

Today on the Menopause Uprising Podcast we have Kathleen King. Did you know 1 in 9 women in Ireland have endometriosis and currently it takes 9 years to be diagnosed?

Kathleen is a well-known advocate for endometriosis, having lived with the condition herself. With over 25 years of experience as a volunteer, she has made significant contributions to the field through support, advocacy and work with organisations such as the Endometriosis Association of Ireland, World Endometriosis Organisation and the ESHRE Endometriosis Guidelines Review group.

Kathleen's research on the use of the internet for endometriosis diagnosis and treatment has further established her reputation as a knowledgeable and dedicated advocate. Her personal connection combined with her professional background as a medical scientist has motivated her to raise awareness and support those affected by endometriosis, inspiring others to join her in this mission. She is the founder of DEARG (Delivering Endometriosis and Adenomyosis Research and Guidance) Ireland’s only podcast dedicated to endometriosis. She is also the founder of MISE (Menstrual Information, Specialising in Endometriosis) a school programme that launched in Donegal in March 2024. 

Follow Kathleen on Instagram, HERE 

Learn more about Endometriosis Ireland HERE 

DEARG: Delivering Endometriosis and Adenomyosis Resources and Guidance Podcast HERE

Transcript -Automatically Generated

Welcome to this episode of Menopause Uprising with me, your host, Catherine O'Keeffe. Today is an episode I have been really excited to share with you, and I know you will get so much from my conversation today. I'm thrilled to chat today with Kathleen King, and Kathleen is well known advocate for endometriosis, having lived with the condition herself, and she shares with us today her own experience Experience where we're at in Ireland and what needs to happen and most importantly the signs that you need to be aware of in relation to endometriosis.

I hope you enjoy the episode and as always please do rate, review and comment on the podcast on whatever platform you're listening on. So Kathleen, thanks so much for chatting with me and endometriosis. It's, do you know what I'm actually I'm really thrilled to see that I feel, and I could be wrong, you're in the right position to tell me, but I do feel I'm now finally hearing it being discussed more.

And I would say I've kind of felt that in the last 12 months compared to maybe 10 years ago, we weren't having as much awareness around endometriosis. Is that fair to say? It is. And Catherine, thanks very much for having me on. Um, endometriosis awareness has. Really started to come to the fore, and I think in the last 12 to 24 months, we've seen a lot of people come forward with their own social media accounts and their own experiences, and we're starting to see that being picked up in the mainstream media.

And then we've also had the documentary, um, Below the Belt, which helped to sort of bring that not To, you know, um, the endometriosis audience, but also to a wider audience as well, too. So we're starting to see that, you know, that ability to be able to talk about it and that willingness to be able to talk about it.

And that's a fantastic change. Um, you know, we've had the endo march there recently, and I always tell the story, the first endo march, um, that I tried to organize back in 2013. So I sent out a poll to people and I was like, well, we should do an endo march as part of the international events. endo Where will we do it?

Would you like to take part? And the first question was like, you know, should we have a public event and 90 over 90 percent came back and said, no, they didn't want to be seen in public. Didn't want to be, didn't even, you know, we'd have so many people saying, look, I can't do it. Follow the social media pages or I don't share articles because maybe my family doesn't know um, how much I suffer.

It's quite embarrassing. Maybe my work colleagues don't know that I've got fertility issues, you know, and people felt that it was so private and so shameful and so deeply personal. But fast forward now 10 years and we have people making Their own Instagram accounts, their own video reels, they're on TikTok.

They're chatting about it. They're, you know, if you look for somebody for media article now, it's so much easier. Um, so there's definitely been a shift, but then the counter side to that is you do have a lot more misinformation now coming out because. Not everybody's taking the time to research the facts alongside their own personal story, unfortunately, and misinformation.

I mean, yeah, like misinformation is so dangerous, isn't it? Because I see that on social media in relation to perimenopause menopause. And I see it from the point of view of I see misinformation. But what I also kind of see, which I think is very dangerous is people who are not medical. So, um, Um, people giving advice and I, that's also very dangerous because, you know, I think it's very, very important for any condition or any, you know, chapter, depending on the severity, like with menopause, I think it's really important that you've got the right medical, um, advice and doctor working with you.

When we look at, um, endometriosis, Kathleen, would you mind just explaining, you know, for people who aren't familiar with it, what exactly endometriosis is? Yeah, endometriosis is a chronic, um, inflammatory disease that tends to be quite progressive over time, um, predominantly affects women, so we estimate that one in nine women live with, um, symptoms of endometriosis, um, and it's sort of characterized predominantly by pain.

Most women will have pain, be it pelvic pain, back pain, um, you know, some women will experience infertility as well. It's one of the leading causes of infertility, but it's again important to know that not everybody with endometriosis will experience infertility. But the condition then sort of is defined by where you've got particular types of cells.

That sort of take up in different parts of the body and it's thought that we're believed to be born with these cells in place and then an event such as puberty or a hormonal shift activates these cells and they're fueled by estrogen and progesterone to a little bit. Um, they can also create their own estrogen as well too, which is very interesting.

But that stimulus then has led it to be linked really to menstruation and those that peaks around ovulation as well. So we now know with, I suppose, research over time and people talking about it that it's not just tied to menstruation, it can be a whole body disease. So, you know, the lesions can be found anywhere in the body, you know, you can have them in the lungs or on the diaphragm, in the pelvis, so around the bowel, the bladder, the ovaries, but you can also have the systemic effects.

So the brain fog, you might have the joint pains, that overall feelings of fatigue. Um, you get your, your sort of, you know, um, classical extent to things like bowel symptoms, you've migraine, you know, you've got a lot of things sort of going on there together as well. And some people like they're, they're in pain 24 seven, like it's, it's quite a difficult condition to live with.

It really is, isn't it? And I, I kind of, you know, I always kind of say, you know, like it. Endometriosis, the pain of it, it's not, some people kind of think it's maybe severe period pain, but as you just said, it's so much more than that, isn't it? And you know, the fact that you can, you know, it can be the lungs, it can be so many other parts of the body.

In terms of getting diagnosed, what, what's that like now? Because I know it was taken like, what is it, 10 years or something. Is it still the same or how is that? It is. I'd love to tell you that's got better in the last 25 years, but it hasn't. Um, you know, certainly when I started this journey, the average time was 7 to 12 years worldwide.

And we're still in that 7 to 12 year average as well. Ireland is about 9 years. Um, and unfortunately, young women presenting. Um, under the age of 25 with symptoms will have a longer delay to diagnosis because we just don't believe younger women when they present with pain. Um, often women, Oh, it's crazy, really, that's crazy.

And we've, we've seen younger women now, you know, realizing that if they go in with fertility concerns, you know, they may be. taken a little bit more seriously and maybe referred a little bit earlier, but it's very, very difficult. Um, and often women are, are put on the pill maybe for, you know, a couple of decades and it's only when they come back in their late thirties, maybe early forties, you know, and are investigated for fertility issues that, that they're They might discover then that they have endometriosis.

So there's, there's so many factors that lead into it. Like, education is one thing on behalf of the women, but also education on behalf for health care professionals. Um, the attitude is still unfortunately out there with a lot of health care professionals that this is your lot and you need to suffer it.

Um, and that is just like a very much like a bad period, but. You know, the thing that we always say to people to differentiate between the symptoms is that if you're missing something like a family wedding or you're missing something like your exams or you're missing something like, you know, a huge amount of time at college or at work, you know, that's a red flag.

Painful sex is another one that we don't talk about enough and it's a red flag and it's usually very, you know, tightly associated with endometriosis. Maybe the bowel or bladder symptoms, pain when opening the bowels, pain after emptying the bladder. They're all things that can, you know, help differentiate that out from maybe other causes as well.

So it's a tricky one. And do you think, um, in terms of, you know, let's say, Let's say you are maybe, um, your late teens, your early twenties, and you're going to your doctor and you're, you're like that, maybe you're missing family events or you're missing exams because of the severity of the pain. Do you think, is it the education piece now that needs to change first so the doctors actually listen and listen to that, um, you know, 20 year olds who's saying, listen, there is something wrong here.

Is that down to education or, you know, where else do you go? Yeah, it's, it's really difficult. And I think we've got a multi sort of faced approach to this one. We need to look at, you know, empowering women with the information to recognize that something's wrong, because if your mom and your aunt and your grand mom also had very, very painful symptoms, you may not recognize that this is abnormal, first of all.

And this is where we have a schools project called Misha, which is in pilot at the moment. And that's where we're going to educate teams about endometriosis and to look out for symptoms that might be abnormal. The other side that then as well is when you go into your GP, you have a very short appointment and they are being bombarded with symptoms that may be quite vague.

It may be that you only have very severe fatigue or you may have back pain that radiates down your leg. There's a lot of things that cause that. the bowel upsets are usually put down to IBS or put down to poor diet. So often it can be very different, you know, difficult to differentiate that out. And this is why we try and get the red flags across, start to ask the questions in that short space of time.

But the lack of objective evidence at primary care is very difficult. Um, and I'm involved in a research project at the moment that is trying to develop a wearable device. That will help collect data from the body using AI as well, compared, combined with the person's symptoms to help diagnose that, you know, within a period of three months, as opposed to somebody having to go back to nine doctors over nine years.

So that would be a game changer. And then you have the bottleneck there with the HSE, um, and you know, where you get referred to the gynecologist and the waiting list could be four years. So you've got so many roadblocks along the way. And then of course, the big thing is, is like, I mean, the biggest roadblock is If you feel you're not being listened to, if you feel that, you know, it's kind of like, you know, even in your own head, it must be like, is this in my head?

You know, why am I, you know, why is this happening to me? And then particularly if you're not, um, if you don't have anyone who's kind of saying, well, you know, listen, There's a high chance it's endometriosis or X, Y, or Z. And Kathleen, am I right in saying a blood test isn't of any benefit to you at all? No, we've got no, um, non invasive tests at the moment, so no blood tests.

Um, some ultrasound or MRI. In very specialist areas and very specialist hands as well can identify, um, um, endometriosis, but only in its, um, very large form. So when it's only when it's there assists are very large nodules, which is only about 20 percent of endometriosis patients. Um, for those with, with, um, peritoneal very superficial disease.

That that's not going to be detectable and we don't have enough of those skilled people in this country to do that. So you're really talking about surgery for diagnosis. So you're going in for keyhole surgery to look into the pelvis, identify the disease and then remove it if possible. So you can see now where the delays come in.

You've got your general anesthetic. It's a day case. There's only so much they can do in a day. And we all know that women's health and gynecology is the first thing to be cancelled once we have either a winter surge, EDs are full, you know, the hospital's busy and unfortunately women's health get pushed, gets pushed so far down the list, you know, and I think You know, the one thing I've seen over the last 25 years that hasn't changed is that as women, we're not treated as reliable witnesses to our own suffering.

If I say I'm in pain, I really do have to justify that. Um, whereas I know if my, a male counterpart of the same age goes in and presents in pain, they're going to be given pain relief straight away. Um, and like you find that with women, we have to fight. to justify our symptoms and to find, you know, to get somebody to believe us, I think, I think is, is always very difficult.

And I'm not seeing a quick enough change in that, unfortunately. And look, sure, I see that. I mean, I see that with, um, perimenopause all the way through. And now, yes, we've, yes, we've had great shifts in terms of education awareness, but I still get the messages every week. From someone saying, you know, Oh, I've been just told to get on with it.

Or, you know, this is just part of life. And you're just kind of, you just feel like you're banging your head against the brick wall, you know, because like, no, no one should be suffering. Nobody should be suffering. There's no, in this day and age, there's absolutely, um, there's no need for it. And I, I think, um, you know, that certainly is something that we've still have a lot of work to do.

And I think, look, There's a lot needs to be done around women, women's health. Like, just as you said, it is the first thing that's pushed down when the winter vomiting bug or whatever happens, you know, it's it's further down the ladder, you know, which is that's not right either. You know, do a lot of Irish people end up going abroad to get diagnosis?

They do. Unfortunately, we have a lot of people traveling. And we have a number of individuals Virgin's, um, throughout the world who are, have dedicated their entire practice to endometriosis. Now there's not very many of them. I think the last count, somebody estimated there was about maybe two to 300, but that's for 200 million people living with endometriosis worldwide.

It's not accessible. Um, in Ireland at the moment, I'm seeing, we used to have a lot of people travel to the UK because you're able to use your insurance on the cross border directive, which was very good to help bring back money, um, you know, to help The costs, but unfortunately with Brexit that went. So there's a particular doctor in Romania that people travel to, there are some doctors in Austria and Germany and the Czech Republic and Greece and you know, we've had patients who have traveled to Dubai and also to the U.

S. as well for surgery. So, you know, like people are investing a huge amount of money, they're remortgaging the house, they're taking money out of savings, they're taking big loans. Um, now the only thing is with expert, um, surgery and with somebody who has dedicated their life skills to doing this and is using excision, you have the chance of really improving your quality of life.

We have no cure for endometriosis. All you can do is remove the disease as best you can, and then you start adding in all your little bits. And it's a bit like menopause and perimenopause where. You need to take in all the factors. So you've got your lifestyle. You've got all that's going to help with that as well.

For us it's pelvic physio. You know, the dietary side, nutrition side is very important. Um, pain management maybe as well, if you're left with residual pain. So there's lots of things that feed into it, but it's usually, the first step is usually starts with excision surgery. Yeah. And it's like so difficult having to go abroad.

I mean, look, like I see that a lot, you know, you know, obviously with endometriosis and also fertility, like it is, it's a shame, like we, there's a lot we can do. There's a lot we should be doing here so that you don't have the added stress of having to go somewhere else, you know, and Kathleen, would you mind just sharing a little bit about your own story, your own experience?

Yeah, for me, I suppose now I'm, I'm living with symptoms for, oh, 35 years. Um, so when I had my first period, I ended up in horrendous pain and a very serious amount of bleeding. I was very, very quickly became iron deficient. Um, yeah. And at the age of 12, even though I was quite medically minded at the time, because I knew I wanted to work in medicine, I knew that was where I was going and I had read so much about menstruation.

I'd read, you know, home medical textbooks and things like that. And I was going, this just doesn't seem right. So by 14, I'd actually self diagnosed. And I had found the word endometriosis. I was delighted myself because, oh, I was, I was, I was the business. I was the GP. Exactly. And the GP more or less went, get out, you know, uh, you're not over 30, get out.

Um, and then that was grand. So I spent two years fighting with her to get pain meds. And, After two years, then I was nearly 16 and she was like, you're just looking for the pill. And I was like, if the pill is going to help with the bleeding and the pain, I'll take it, but I'm not looking for it in the way that you're implying.

So she made me get a letter signed by my parents. Um, and I got that. And I went through, I think every shape and form and brand of the pill and got nowhere. Um, Seen multiple doctors then through college and it was only when I started to do my training in the hospital and you know, as part of my degree that I actually had money and I was able to pay privately to go to Northern Ireland where the consultant now I went in with a book about this thick and to go in and say, look, here's my symptoms.

I'm sure I have this. And I was ready for the fight and he just flicked through two pages. He went, Oh, no, you definitely have it. We'll do the surgery. Um, no fighting at all with them. And so that must have been that, sorry, Kathleen, that must, that must have been kind of a liberation that, you know, just someone who's finally listening to you.

Huge. And I was pure lucky because the person, one of the people I had met when I moved up here was a nurse and she had great experience with this particular gynecologist. And she said, look, if he can't help you, nobody can, you know, and to be believed at that first appointment was, it was unbelievable.

Because I'd spent the previous nine years fighting with so many people and being told I was overdramatic. I had a low pain threshold. I was catastrophizing. I wanted to get out of school. I wanted to get out of college. I wanted to avoid things in life. So it was, yeah, it was a huge relief. And then to have the confirmation that surgery was, was massive, you know, it was great.

But, um, unfortunately I, I've had eight surgeries. Um, the majority of which were, were outside of Ireland. Um, my last surgery, um, was excision and that was six years ago and my life totally changed with that and totally changed for the better. Um, the previous surgeries were a combination of ablation cause that was what was done at the time.

Um, and the, the two previous to the one I've, I've, you know, my last one were presumed to be excision, but. When my, my surgeon, the expert surgeon went in for the last surgery, he found endometriosis that had never been removed. Um, and that has led to long term, um, nerve damage, unfortunately. So I do live with chronic pain, but I've had a 95 percent pain reduction, um, which has been, been amazing.

Like it's, it's, it has been absolutely life changing, but it was a long battle to get there. Um, you know, and I think, I think along the line, along the way, you sort of realized that we've very little treatment options for, for women. You're forced into choosing between your quality of life and fertility, because most of the drugs that you're taking to suppress your cycle, you can't get pregnant on, or if you're taking very heavy pain medications, it's not going to work with somebody who's, who's going down the fertility road.

And I've really seen that, because once I was diagnosed, I started into advocacy and volunteering and helping. And I realized that apart from the education level, you know, and not just of clinicians, but in women themselves, along with the treatment options that we had, it was so, so limited that something had to be done, you know, and slowly we're starting to see change, but again, very slowly.

Gosh, that's some, that's some amount of surgeries, isn't it? Like eight surgeries. And did you say all of them were out of Ireland? Um, the majority of them were, I had two within the Republic of Ireland, and the majority then were UK. And my last one was in Atlanta, in the US. US, wow. Yeah, it's all been journey over.

That's, that has been your most successful one. It has, it has. He removed all of the endometriosis, um, from my bowel, my bladder. All the pelvic sidewalls, um, I also had my fallopian tubes, um, my uterus taken out as well because I had a denimiosis as well and I lost my appendix and, um, what else was in there as well too?

There was just all the endometriosis that he was able to find. He took out, um, yeah, it was crazy. And like every surgery prior to that, I'd been told that I had very minimal endometriosis and that there was nothing really left there, you know? To go in and find so much of it, and then to have that amazing relief afterwards was proof, I think, as well, too, that, you know, you do have to trust your own body, you have to trust, trust yourself, basically.

And even me, knowing what I know, had started to lose that, you know. And did you, did you find, like, after the surgery, was it kind of, you know, a few days afterwards, or was it weeks afterwards, where you started to feel better? It was literally hours, um, when I went into my surgery, yeah, I was taking, um, two high strength, um, opioids.

So I was taking the equivalent of 385, um, morphine equivalents every day. Oh, my gosh. It was, it was crazy. I don't know how I was functioning. I'm just going to see that. Yeah. How did you, how did you keep life going? I know, I think through time you probably get used to it and you find ways around it, you know, but when I think back on it now, like I, I couldn't have been functional and I couldn't have been safe.

Like, you know, and, and thankfully my partner done all the driving and done all the bits and pieces like that, probably knowing that I wasn't, wasn't going to be the best, but, um, no, within hours of the surgery, they, they come in and they woke me up at about three in the morning. They said, look, we need to get you up for a walk.

And I was like, Oh yeah, no problem. I'll get up. And I was expecting to feel bad and feel pain. But they got me up and I walked down the corridor and I was like, what's going on? I feel like I've done like a thousand sit ups, but I don't feel like I've had surgery, you know? And then I was like, Oh, hang on.

My pain's gone. My pain that's been there since I was 12 is gone. And they were, the nurses were laughing. They just thought this was amazing. They were like, Oh, it's the pain meds. And I was like, no. Nope, pain's gone. So after like, you know, even having the uterus removed and having the big, big massive surgery, um, the following day I was out walking around, um, you know, was able to do small walks around the hotel and, you know, those walks got bigger day by day.

And so much so that I actually had to set alarms to remember to take my pain meds because I had gone from such a high level of pain down to surgical pain, which is a totally different and manageable pain altogether. And do you, do you still have, do you still now, do you still have some residual pain from, you know, particularly the number of surgeries and, you know, internally and everything?

Yeah, I have, um, I have some nerve damage from, um, a combination of the, um, previous surgeries and just that the endometriosis was left sitting on a nerve. for so long. So that nerve damage then does cause pain. Now it flares up, you know, quite badly every now and again, but it's totally manageable. Um, I do take a very low dose of opioids every day and was part of my management with my, my pain team.

And that's at the minute gets me through. So for my surgery, um, the surgeon felt he could offer me about a 70 percent improval. Improving in, in pain quality and, um, like I've 95 percent reduction in the pain meds. So that to me, I'll take it, I'll spread it out. That's a great result, isn't it? But I mean, gosh, after such a, such a long journey.

And I think that's the, I think that's what I feel is that the, the, you know, the really challenging part of endometriosis is how long it takes to be diagnosed and how long you're kind of, you're in a way you're alone on that journey. Um, you know, with just you knowing there's something not right here, but who's going to listen to me and, you know, how am I going to get myself diagnosed?

You know, and I think that's obviously where we need to see a lot of change happen, right, in Ireland and, um, and globally. Is there any Is there any plans, um, you know, in Ireland at the moment, you know, happening at a national level in terms of, um, endometriosis care? Yeah, the government had announced, um, an endometriosis framework, um, over 12 months ago now, where they were going to try and upscale surgeons.

Um, within regional hubs, and then having two to three, um, sort of, you know, super centers at which endometriosis is treated. Now, unfortunately, that model looks like it's based on what they use in the UK, um, which has a very low bar in terms of number of complex surgeries that's carried out every year. So, while there's an endometriosis specialist clinic in place in Naim, and the surgeons are doing their very, very best, they're still quite restricted because they practice other areas of gynecology as well.

And in some cases, they're still obstetric practitioners. So, you could be delivering a baby in one theatre and then straight in to do endometriosis in another. And having spoken to, you know, expert endometriosis surgeons worldwide, the consensus is you need to give your entire life to endometriosis because it is so complex and you need to, you, this is one disease where you need to know your enemy because very few diseases in the body can affect all tissues, all organs.

You need to be able to recognize all of its forms that can appear quite different within different patients, um, and to be able to manage that safely. So, you have to go from taking maybe something off the outside of the bladder to, you know, maybe going up to somebody's diaphragm to go back to the bowel, you know, you need that confidence and that does require a high level of surgery.

So, most expert surgeons worldwide would do, you know, the 3 to 400 a year. And unfortunately, what we're seeing coming out from sort of, um, patient reports here is that some of the surgeons are only meeting about 30 or 40 cases a year of very complex endometriosis. Now, I'm hoping that's going to change, but it's going to take a lot of time.

I think it's going to take a lot of investment from the government as well to try and upskill surgeons to allow them to get to that level of training because it is quite a complex disease. And it is like you say, it's having someone who, listen, this is my, this is my gig. This is what I, this is what I'm focused on.

Not, uh, you're not trying to span, you know, different, you're not like, as you say, you're not going from, uh, the labor ward into something else, you know, into endometriosis surgery. And I think that's really important because, um, then it's just niching, isn't it? Instead of trying to be not a jack of all trades, but you know what I mean?

It just kind of. Narrow it down. Um, and I, I think anything, if you look at any aspect of women's health, I mean, I think that's key, isn't it? You know, having the specialists that are there who have that, who have that knowledge. Is it, is it, I know you mentioned Romania earlier, is it the, is it the US and Romania that tend to be ahead in relation to this globally, uh, Kathleen?

Unfortunately, there's no, no country has got its act together and has a perfect set up for endometriosis and do see with the European countries, some of the German speaking countries, they have an accreditation system and it's slightly different than the UK and that that standards quite good and it's not perfect, but it still involves patients as part of the accreditation.

I think that's quite good. But what we're finding is that people are traveling to individual surgeons or individual clinics. As opposed to the area where it is, so, you know, there may be only one or two surgeons in Romania that are excellent, whereas the rest of it will be pretty much like Ireland. It'll be a routine gynecologist.

So, and we find in the UK that where surgeons were working within the NHS and, you know. maybe seen occasionally private patients, they've had to go completely private to be able to take on the full caseload of endometriosis on its own because very similar constraints to here. So it's very, very difficult.

There's not one country has a good plan at the moment. Um, and there is the extra European guidelines, um, for European countries. And then we have the nice guidelines in the UK. So Ireland tends to follow a bit of both. Um, But again, they don't come down hard and strong enough on that number of cases. And I think most patients and certainly patients with very complex disease, you know, deserve to have that level of treatment.

We've specialized oncology right down to levels. And if we look at breast cancer, it's a great example. You know, it's totally changed the way it's been treated and how it's been managed. And, you know, endometriosis, You know, does require that level of input, multidisciplinary input, um, and that specialist input as well.

So, but unfortunately at the minute, it is individual doctors that are driving this forward in their own area. Yeah, it's really tough, isn't it? Is it, is it, is it defined as, um, like within, if you're diagnosed with endometriosis, do you automatically get, um, a medical cart here? Um, no, no. Okay. So there's no, yeah, it's similar density to premature ovarian insufficiency, which is a huge bug bearer of mine that, you know, the young girls.

You know, automatically, I feel they straight away, you should automatically get a medical card exactly the same for endometriosis because the cost of medication. Say you're, you're buying on a monthly basis. It's so challenging, isn't it? And then that's only, that's a financial burden and you know, on top of that, you've got this huge, physical and psychological burden as well.

And that's the thing. And you've got a huge loss of, of, uh, Productivity as well too. Like if you're not able to attend school or college, it's going to affect your career choices. You might not, you might not get to work in the area that you want to work in. Um, it's then you're in the workplace, your productivity could be very low.

You may miss quite a lot of days that affects your income as well too. We've got women, unfortunately, have had to give up their jobs because their pain is so severe and their sick leave is so high. That they're taken out of the workplace, um, but there's, it's not recognized as a disability. What we find, um, some women have been able to make cases for, you know, like GP only cards or have been able to make cases for, you know, like disability benefits based on individual symptoms and the impact it has on them.

But the label of endometriosis itself, the feedback we've had through patients over the years is, it's like. That's bad periods. Everybody gets those. And that's the attitude you get back. Horrific. Horrific. When you fill out a form. Horrific, isn't it? Because it, it, it should be like, it is a chronic condition.

And it's again, like POI, like who wants to have endometriosis? Who wants to have POI? Nobody does, you know? And it's, it's like, yeah, I think that's one major shift that we need to make, um, in Ireland. And to me, it's just, that is just a no brainer. That needs to happen, you know, um, if you, if you, if you look back Kathleen, and I know just when you're talking about your own, um, experience, but even from the, the women you have worked with and talked to, I mean, how do you handle the psychological part of it?

That is difficult. That is really difficult for me. Um, I suppose I channeled all that anger into advocacy work, um, and trying to make sure that nobody else coming behind me was going to face the same difficulties and the challenges and not being believed and all of that. So like I volunteered in the UK helpline for a long number of years.

I ran the Irish, um, uh, association for, uh, you know, a good number of years as well too. And when you're dealing with women on an individual basis and that level of suffering, it is the impact that it has on them is something else. It really, really is. And that aside too, that people don't understand. And I think the impact of a chronic illness, um, you know, it is debilitating and it really does mess with your head because you're seen as the person who's flaky.

You're always cancelling appointments. You might not be able to turn up to something, you know, or you turn up to something you're really unwell and you have to go home. Um, it just, it trashes your mental health at times. And that combined with, you know, chronic pain, once it gets into your head, you know, you can find that you're in this cycle of exacerbation of pain along then with the psychological side.

It's huge. And this is why endometriosis needs that multidisciplinary support. Like it needs, you know, you need your mental health services, you need your physical services, you need your surgery, you need all of those things working together. Yeah, it's so important, isn't it? Because, you know, I think to be left even, you know, that before you get a diagnosis, you know, the challenges that are there.

I mean, I think they're harrowing. They're harrowing until you get that kind of confirmation as to what's happening. But then when that's only, uh, that's only the start of the journey, isn't it? Because once you get that, then it's well, OK, you know, what's to happen from here? And that's a emotionally.

That's massive, be it from fertility perspective, just life perspective and long term management, et cetera. It's massive. I think I think it's one thing I just on my newsletter this week, I was talking a lot about anxiety and menopause. And it's a it's an aspect of menopause that, oh, gosh, I could say every day I'll get emails or DMS about how You know, women are feeling the psychological part of it.

And I think that's, I think sometimes, um, I just wonder sometimes, do we, do we just try and keep the brave face on it? And we try and OK, we can keep it all together because that's what women do. But I actually think, you know, we just need to cut ourselves some more slack and just get the supports. That we need to kind of, you know, and like, you know, as you like how many years you had to go through before you got that kind of, you had your final surgery and things really changed.

It's like having the support there is just so important, isn't it? Oh, it's essential. And you find, you know, within certainly any chronic community or any health community like that, you will find that the community becomes that support for you. Um, you know, I've certainly, I have made like the most amazing friends over the last 20 odd years, you know, people I have never met, but I speak to every day of the week, you know, things like that.

Um, and then people I've been very fortunate to meet because they live in the same country, but. People who do change your life just by being there at three in the morning when it's got really bad and it's got very dark. Um, but you're right. We do tend to pick up and push on and that's something I'm really, really guilty of doing.

I don't pace myself. I burn through things. Um, I do everything I tell people not to do and I need to cut myself off. I'm awful at it. I don't pace. Um, I don't rest. Um, you know, I don't look after myself. I, I'm just, I'll burn. Um, And the thing is then when you do crash, it's hard to come back from that, you know, but you do need to look at it as in, it's not a weakness.

This is no different than any other chronic condition, like diabetes or asthma or anything like that. We just need to change our mindset around that. And myself included, because even at times I still feel that I have to prove myself. You know, even though like I might, I might a pain flare, but I'll still go and do something instead of resting because it's like, I don't, I don't want people not to believe that I'm in pain, you know?

And that's funny, like 35 years later, that's still in my head. Yeah. That somebody isn't, might not believe me. Yeah. It's strange, isn't it? It it stays with you. Like that's a real, you know, like, isn't that, you know, the whole. The body remembers and there's that like, you know, and the body remembers what it was like for you at 12 and it remembers the reactions to it.

That you got to that. And I think, I think, um, you know, that is, that is something that it's like, you kind of have to be aware, I think, of anything like that at all. That's the starting point, isn't it? And once you have the awareness, then you can kind of start to kind of, okay, you know, maybe move. From it, but I do think, you know, like, um, that's something we're all, uh, can be at fault of, you know, um, Oh, I go, you know, I perk myself up or whatever, but I will say I find now for me and some of it's age for sure.

And some of it's definitely menopause, but I will, I'll totally go with where I'm at. You know, if I'm just like, okay, not happening today, then I'm like, kind of, okay, it's just not happening today. And, you know, I give you a good example for that, for that would be, you know, there's sometimes people. If you're doing things on social media, you know, it's like, okay, you got to be in the frame for that.

So if I'm not, okay, it's not going to happen today. And I think I think that's where I certainly now would listen to my body a lot more. And like, I will know, like, say you wake up, Kathleen, we all have it. You know, you wake up in the morning. You're just like, uh, you know, that's the morning. I know I got to go for a run or I got to go up the mountains.

I've just got to make sure I carve out that extra. hour for myself to just get out. No, and with me, I don't care what the weather is like, I'll, I'll get out in it. And, and that's, that's the game changer I find. And I think it's for everyone, it's finding. Your game changer, isn't it? Yeah, it is. And it's, it's so important to even look for that, like, you know, and I think for me in the last few years, I've discovered, you know, that I can grow vegetables and self sustain here.

And that, that has been amazing. I have to say it has been a lifesaver where there's been days I've come in from work really stressed or, you know, Things have piled up and I'm just like, I'm going to the polytunnel. Don't come looking for me. The phone's not coming, you know, and like that, that has been good.

So maybe I am learning to do what that's probably perimenopause kicking in now and make me a bit more sensible at this stage. I'd say you are. I'd say you are learning. And I do. That's where I always kind of say that's where we have those little snippets of opportunities that do come with menopause.

And I will argue, yes, There's an aging, the wisdom, all of that. It all kind of collides together, but you definitely, you just become more settled or that bit firmer in knowing, um, this is what I, this is good for me now, or this isn't, or, you know, X, Y, or Z. And I, I, I find great solace in that now. I, I, and you know, I can look back at, you know, different situations, different relationships, friendships, et cetera, and you kind of, you, your view is Your view is different or my view is different in terms of, um, maybe you just, I guess you're looking at what, what you want to attract into your life and what is, is supporting you in your life at different stages.

And I think there's a calmness that comes maybe with age, but like bringing perimenopause into it as well. But I do think that comes and it's, it's, it's a settling. Um, you know, it doesn't happen overnight. No, it is. And then there's some days you think I have this sussed. And then other days you're like, no, the anxiety just kicks in.

You're like, yeah, yeah, yeah, totally, totally, totally. That's that niggling, that niggling anxiety. And I, you know, like, as I said, I, I think it's one, I tune, I tune into that a lot now because it's, I probably, one of my earlier symptoms of perimenopause was anxiety. I'd never had it before. So it was like, what's going on here?

And got through that, but I would be very conscious now of when I start to see anything. Rear Ted, I'm curious, I go into it and I try and understand what's happening and that's, that's what works for me. You know, but it's be different for, for all of us, you know, um, we sidetracked there. Sorry, that was me.

I didn't know what polytunnel I went down there. Are you aware of that one anyway? Yeah. Um, if we, if, if you were to give someone advice who thinks maybe they have endometriosis, um, or what to, what to, what those key red flags are, what they can do, what, what would, what is that? I think the first thing is, you know, have confidence in your symptoms and have confidence in yourself.

So believe what's happening to yourself and start writing it down. There's loads of menstrual apps. There's loads of symptom tracking apps. There's the good old pen and paper, which some people like, and it's quite nice because you can sort of flick through things and see what's going on, but anything that's going to show you a pattern is really important because the first thing a clinician is going to look for is that pattern.

Is this happening every day? Is it every week? Is it with your cycle? Those things are important. Start looking at some of the symptoms of endometriosis online, so that could be, you know, pain after emptying your bladder, could be shoulder tip pain, it could be pain when emptying the bowels or blood when you empty the bowels as well.

It could be pelvic pain, lower back pain, pain that travels down the leg, heavy bleeding. Heavy menstrual bleeding, um, and that sort of chronic fatigue, um, migraines are linked as well too. And what we do see in, I would say almost every woman I've met with endometriosis has a thing called endo belly, so much so that I can nearly diagnose people with it.

And it's, it's a type of bloating where you literally can go, you could be standing here chatting to me now and my belly will just swell out. Out of nowhere and that inflammation and we don't really know what causes it other than that, that it's an inflammatory thing. And normally when somebody's pain is very high or they're about to go into a flare, you see this endo belly and it's led to that horrible thing where people come up and, you know, congratulate you for being pregnant when you're just having a bad flare day.

Oh God. Yeah. That, that as I like, believe it, like for me, who's not even gone down the fertility road that has come up so often and it ends up being funny. But I think it's recognizing the symptoms, getting them written down, um, you know, go out there. To trusted sources of information as well to like, so, you know, we've got endowatt.

com, we've endometriosis. org as well are two very good, um, sites for information and, you know, have a look at that, speak to other people, you know, but make that appointment with the GP. And go through, you know, the, the, the things, ask for a referral. Um, and if there's a family history of endometriosis, that's so important because, you know, if you have a first degree relative who has endometriosis or suspected endometriosis, you're seven times more likely to be diagnosed.

Okay. You know, and I know when I talk to women, especially in their 30s, they're sort of looking at me going, Oh, but I've, I've always had bad periods or they've never been that bad. But when you drill down into it, you find that, you know, 70 percent of teens who've had severe pelvic pain, you know, during that teenage menstruation go on to be diagnosed with endometriosis.

So we've gone from a disease where I was told you need to be over 30. You know, we now know, like we're born with the disease, it's there in place, something kicks it off. And like, I have young women who are now traveling for surgery, you know, they're 14, 16, 18 years of age. I've also had a woman recently enough, who's only just been diagnosed in her fifties.

So it's never too, you're never too young, never too old. But I think the main thing is. You really do need to trust yourself, advocate for yourself. And if you're not being listened to, and I know in this day and age, it's very difficult because GPs are getting very rare. You might need to change your GP, um, you know, or somebody else within the practice, even to be listened to.

Um, but it's, it's just, it's getting that first sort of step as well too. And I hope. You know, Catherine, we have this conversation in maybe five years time that we will have a device available. We'll have a home diagnosis or an in surgery diagnosis where we won't have to go through a laparoscopy to show that this disease is here.

We're not there yet, but eventually we will. Would be fabulous. It would be such a life changer for so many people, wouldn't it? Yeah. Yeah, really would. It really would. Kathleen, thanks so much for chatting. It's a pleasure as always. And thanks everyone for listening. I hope you've enjoyed this episode. I will share some of the resources that Kathleen mentioned so that you can check them out in the show notes.

And as I said, don't forget to rate, review, or comment. On the podcast, on whichever channel you've watched it on. Thank you.