Women’s health

Endometriosis matters, it matters to millions of people and their families. It can be extremely painful and affect your quality of life or you could have no symptoms at all.

For many, it is a hidden mystery illness. That is why we have spoken to an endometriosis expert to get you the answers you need.

Endometriosis is a condition whereby cells that are very similar to the lining of the womb called endometrium are found outside of the womb.

We think it affects about one point five million women in the U.K., so approximately 10 percent of the adult female population.

We tend to think of five sets of symptoms. So the first is, do they have very, very painful periods? And I do not mean periods where the pain will be resolved by one or two paracetamol.

The next symptom is do they have pain with intercourse? Typically, this is pain deep within the pelvis, it is at the time of intercourse but it can also be afterwards and it can last from a few hours to up to two or three days.

Does she have pain when she is opening her bowels? This typically is related to the time of the month when they are having a period, but it can also occur leading up to the periods and it can occur around ovulation or even at random between periods.

Are they having pain when they are passing urine? So are they going more frequently? Do they feel like they have got a urinary tract infection even though when they go to the GP's, a dipstick analysis of the urine shows that there is nothing in there; and finally, do they have pelvic pain throughout the month? Do they have pain not when they are on their periods, not when they are going to the toilet, not when they are having intercourse but just throughout the month.

Do they have pelvic pain, do they have bloating, do they have profound fatigue?

As you can imagine, all of these things collectively can have a huge impact, so they can affect their ability to hold down a normal work pattern.

The impact of endometriosis on personal relationships can be extremely profound and this can relate to a number of things.

First and foremost, patients often find it either extremely difficult or impossible to have an intimate relationship with their partner, it is inevitably going to have a negative impact on somebody's mental health and up to 80 plus percent of patients will describe that.

I think it is fairly well established now that it takes around, on average eight years from the onset of symptoms to actually achieving a diagnosis, which from a medical perspective is a huge period of time. Why does it take so long? Well, the symptoms that a patient can exhibit are very, very variable between patients.

Very, very rarely do you get two patients who are just the same and it is important to remember that when you are dealing with endometriosis.

So in order to achieve a diagnosis of endometriosis the gold standard is something called a laparoscopy.

So this is keyhole surgery and it involves the patients coming to hospital either as a day case, sometimes overnight.

They are put to sleep under general anaesthetic and then a small incision is made in the umbilicus or the navel or belly button and that allows the Gynaecologist to look everywhere from the diaphragm down to the pelvic floor and really check to see if there is any endometriosis present.

So as you can imagine, if a patient turns up at the General Practitioner's office, it can be really very difficult for a GP to say, well you have got endometriosis and this is how we are going to manage it.

We are frequently asked, are there any treatments available for endometriosis and the answer is yes, definitely.

I would say that the gold standard treatment is surgical for those patients who are able to undergo surgery and ideally should involve excision or removal of the endometriosis.

If a patient is not able to undergo surgery or is not willing to or can not do or wants to defer it for a period of time there are some medications that can help with the symptoms but it is really important to realise that they do not actually get rid of the underlying condition. So we would typically start with the really simple analgesia regiments such as Ibuprofen or Brufen, Naproxen in combination with Paracetamol.

Now patients may find that that is helpful, they may find that actually it really does not do anything but just take the edge off at the most. So then you are looking at the stronger drugs, so the Codeine based drugs such as Co-Codamol.

The second branch of medicine that could be used to sometimes control the symptoms is hormonal control, so this would involve typically using the combined oral contraceptive pill in a continuous fashion.

How can we make the lives of patients with endometriosis better? Well, I think first of all, we need to be able to talk about it.

Yes, it is a gynaecological condition and yes a lot of people still find it embarrassing or difficult to talk about gynaecological issues.

However, the more we talk about it, the more we get used to it, the more people will understand it, they will accept it and this will help in the management of the diagnosis of endometriosis.

By talking about endometriosis, we can help it feel a little less hidden. Explore more about endometriosis on our Women's Health Hub at bupa.co.uk/womens-health. Because endometriosis matters.

Every topic that this podcast series covers has a lot of thought put into the why. So why shine a spotlight on this particular topic? And I think the topic we're gonna talk about today, when thinking about health conditions that have a lot of misunderstanding and misinformation and stigma, this one has to be very close to the top of that list. Today we're gonna talk about endometriosis, and I'm so grateful to our lovely guest, Michelle Ackerley, who is here to talk to us about her experience of living with endometriosis. So Michelle is a very successful TV presenter, she's presented "World's Strongest Man", "The One Show" and "Crime Watch." But today, so grateful for you to coming on, Michelle. We've met once before, haven't we?

We have.

But I feel like I should've met you more. I feel like we have so much in common.

Yeah, totally.

But the question we always start off with, and the question I'd like to ask you, first of all, is, what is the one thing you should never say to somebody who's living with endometriosis?

For me, that would be comparing it to just a normal stomach ache and dismissing that pain. So when I was in real pain with endometriosis, sometimes people would say, "Oh yeah, tummy aches, they're really bad, aren't they? Put a hot water bottle on it." And I would just feel like my experience with the condition was really dismissed and comparable to other forms of pain, which weren't as bad. That's how I felt.

Well, I guess that that's one of the real difficulties of understanding somebody else's experience of pain is that you just don't, you don't know how severe it is. You don't know how it feels, the nature of it, and you don't know how it impacts on their life.

Yeah.

So you kind of, I guess people are assuming therefore, that the pain you're experiencing is not what you're actually experiencing.

And that's totally true, 'cause when I first started having the symptoms, I didn't really know what was going on. So, you know, as a young woman, I'm thinking, well, maybe this is just what stomach aches are like, or, you know, bad period pains are like, this is normal, and it's only when you've been through that process and you can reflect on it, that you understand a bit more about not only yourself, but about a condition, how it makes you feel physically, how it makes you feel mentally, but also how what other people say to you impacts within that process as well, you know?

Okay, so that's really helpful to know. Something for all of us to bear in mind, you know, never make assumptions about somebody else's experience of any type of pain. But I think it's particularly true when we're talking about endometriosis. I wanna ask you, when did you first hear the word endometriosis, and did you understand what it was immediately? And also, I'm gonna put you on the spot and ask you to define what endometriosis is.

I thought you were gonna ask me to spell it then, Zoe. I was thinking, oh, my God, I'm gonna be out.

I wouldn't do that.

Straight away, I get it wrong every time. But the first time I actually came across endometriosis was through my mum.

Right.

She ended up having to have a full hysterectomy because her endometriosis was so bad. So it was kind of on the radar for me through her experiences. I kind of followed in her footsteps in a weird way in terms of having really bad period pains, very heavy pain, very heavy period pains, and when she was going through that kinda stage, she went to her gynaecologist and was having, you know, various checkups and then, you know, got told that she had this condition, endometriosis, and went for a laparoscopy. Another word that I can't spell very well. And was going through this kinda thing. So I'd always, I'd heard about it through her. And then when, you know, I started growing up and I was having what I thought was similar kind of experiences to my mum, I would say to her, you know, "I'm in real pain here." You know, "The stomach aches are really bad." And she was the one that actually first said, "You know what? We should get you checked out properly because this could be something that you're going through." If it hadn't been for that,

Yeah.

I think it would've taken a lot longer.

Yeah.

As well, you know?

Yeah. Well, I guess in some ways you did have a bit of a head start in that your mum, of all people, you know, somebody really close to you had been through it, so therefore there was some level of understanding and someone to say, "Right, we need to get this checked out."

Yeah.

"Early on."

Yeah, exactly. And, you know, trying to explain exactly what it is from a medical point of view, it still kind of baffles me. It still blows my mind a bit in terms of what is actually happening.

Yeah.

And I think growing up, my focus was just trying to stop it from happening rather than really drilling down and understanding exactly what is happening.

Yeah.

And in my mind visually, I liken it to like having some kind of lining growing on the womb. And when I had like laser treatment, they were trying to get rid of that, they were trying

Yeah.

To get rid of, there's some kind of lining that's there.

Yeah.

Does that make any sense?

Yeah, so, you know, I'm not really here, I'm here to listen to you, but I think it is with this one important for people listening to understand what endometriosis is. So the lining of the womb in a woman is the endometrium, and it's made up of endometrial tissue, and it's very special tissue because it responds to our hormones and, you know, with our monthly cycle. If we don't get pregnant in a monthly cycle, then that tissue sheds and we bleed. So endometriosis is when you have that endometrial tissue in somewhere else other than the lining of the womb. So most commonly it's around the other pelvic organs. So in the peritoneum, which is the tissue that lines the pelvis, but strictly speaking, it can be just about everywhere. So it can be in the bowel, it can be on the bladder, it can be in the ovaries, it can be in the muscle of the actual womb itself. And it can also be, you know, the rare case we always hear about in medical school, which I've never seen a case of, but it can be in the lungs

Really?

So people can actually cough up blood, so it is possible to have,

Gosh, I've never heard

Endometriosis of the lung

Of that before.

So that's what it is, which is why you can imagine that if that tissue is responding to your hormones in the same way as the lining of the womb does, if you are having, say you're having regular periods once a month, once a month that tissue will bleed and that blood will cause inflammation and can cause scarring and damage.

Yeah.

So what age were you when you first got the diagnosis, and what was the route to that diagnosis for you? 'Cause we,

Yeah.

You know, we hear this really concerning statistic, which is one of the reasons I wanted to discuss this topic, that it takes on average eight years for somebody to get the diagnosis of endometriosis.

Which is so scary really, when you think back, I feel kind of lucky in a way because I think it probably would've taken a lot longer if it hadn't been through, you know, my mum's experience and her being quite pushy with me at the time and saying, "We need to get this checked out, Michelle."

Yeah.

It was around my early twenties, so probably 23, 24. But in the lead up to that, you know, every month when I was having my periods, I'd be in so much pain, and as I say, bleeding so heavily and nothing would work. You know, you pop two paracetamol. It was just like eating sweets, it didn't do anything.

Yeah.

It didn't literally didn't do anything. And I'd go back and forth to the doctors and, you know, have conversations and try different forms of the pill, anything that might kind of help with that experience and nothing did. And it was almost, as my mum's situation progressed, and it kind of coincided with her having a full hysterectomy, whilst my kind of pain was getting worse, that it kind of reached that point of I actually went to her gynaecologist, and he was the one that diagnosed me with endometriosis.

Right.

And then it was the start of, okay, well, how does this journey unfold, you know? And for me, it was just a case of wanting anything that was going to stop that pain,

Yeah.

To be able to enjoy a normal life. You know, I'd just started work experience at the BBC, and I was going in every day. And, you know what it's like. You're trying to put a face on, you're trying

Yeah.

To show the best part of you. And I'd be sat at my desk just trying to psych myself up, and trying to ignore this part of my physical body that was, you know, just not functioning, you know, and carry on with my everyday life. So when I eventually got that diagnosis, I felt better for it. But to be completely honest with you, I actually felt really scared as well because I could see up front

Yeah.

What my mum

Well, that's it.

Had been going through. You know?

Yeah so, on the one hand, you had this, I guess, you had an inkling as to what it was, and you had your mum there to inform you, but also, you were seeing your mum, what she was going through.

Yeah.

She'd already had the laparoscopy. So that's keyhole surgery, which is actually what's required for a definitive diagnosis of endometriosis. And then she's gonna go ahead and have a hysterectomy. So had you had a laparoscopy,

Yeah.

This time as well?

Yeah, I'd had the laparoscopy, and I remember the first time I had that, you know, 'cause the little thing down your belly button.

So it was a general anaesthetic, isn't it?

Yeah. It's an operation where they have to put you to sleep and they usually do two, sometimes three, small cuts where they can put tubes in and have a look with cameras-

That's it.

To see if you've got endometriosis there.

And I remember waking up and kind of, obviously, they put the stitches in and seeing, you know, these little stitches in my belly button and thinking, okay, so. Even at the time I was like, well, "Is this gonna make me better?" Do you know what I mean? Is this something that's actually gonna sort it out? Maybe this is a step of the process where I'll start to feel better now. But obviously, upon reflection that, you know, that wasn't the case at all. At this stage, obviously I knew then what it was, but it was very much a long process after that to start feeling better and start, well, not necessarily better, but it being managed. So I actually went on Zoladex injections. So Zoladex injections sort of, they kind of block the female hormones somewhat because they are contributing to the issue of endometriosis, but tend to have some nasty side effects. And that was the thing, Zoe, you know, on the one hand, I was happy that something had been given to me to stop the pain, but then all these other side effects kept coming through. It almost, you know, someone likened it to you almost going through like a mini menopause at a young age. And the symptoms that I was getting, whilst I was, you know, going to work every day, hot flushes, really bad hot flushes. My skin completely, completely changed, getting really bad breakouts, and also just having really bad anxiety because I could feel things were changing in my body. And whilst I wasn't getting the same kind of pain, I was getting all these different symptoms. And as a young woman, you're trying to, you manage that. And I feel like now if it was to happen, the added thing that I would be thinking about is am I ever gonna be able to have kids? You know, I think in my early 20s, I wasn't thinking about that as much as being in my late 30s now. It was more just prevent the pain, prevent the pain, prevent the pain. And now it's good the pain's prevented, but how much has this actually impacted on my body overall? And what does this mean? Especially, you know, as I keep coming back to you, my mum, you can see a woman that has had to have a full hysterectomy. You know, she'd had myself and my brother Jonathan at the time. So she actually had had children, even dealing with a condition. But yeah, there was a lot going on and sense still does go on within my mind of how it impacts you in the short term, but also in the long term. And really feeling like there was no one to speak to about it in the real world, outside those gynaecologist appointments or thankfully to my mum.

Whilst something that actually really surprised me, whilst I was researching for this conversation, I knew endometriosis was common, but I didn't realise that it's almost as common as asthma in women. One in 10-

That is crazy.

Women in fact, if you were to take a female population, adult population at any one time, about one in 10 of them would be suffering from back pain. And one in 10 are suffering from endometriosis. In clinic, I see patients about back pain all the time. My friends are always telling me they've got back pain, yet endometriosis is just as common. But yet you felt as I know, many other women do, you felt alone and like there was nobody really you could talk to about it.

And this is what's extraordinary. 'cause me and one of my friends, I'd spoken about endometriosis recently, probably like, you know, one of the first time I'd spoken about it a bit more openly, and she happened to watch it, and she messaged me and she said, "Michelle, I never knew you had endometriosis. I've got it too." And she's like, "Isn't this crazy?" We've known each other for 15 years, and we've never once spoken about it. And we were both actually really disappointed in ourselves in the sense that we could have actually had these chats-

you could've supported each other

Supported each other.

Yeah, let's go back a little bit, and I think I want to, as somebody who has not had this condition, I've had some painful periods, but this is something that's on a completely different level. And also, you know, in some people it affects them during the time of their period, but some people have pain all of the time with endometriosis because of some of the sort of scarring and inflammation and damage it can cause. What was it like for, I mean it might still be, we haven't got there yet, but talk us through, I guess, how you would feel when you, at whatever given time of the month, your symptoms might start, what you would think and how it would feel and just share with us the experience.

It's almost like a dark cloud, really. Because once I knew what it was, and, you know, you can define what's there, it's almost having like this foreign thing in your body that's changing everything about you. So I'd constantly have this dragging down feeling and stomach pain. But, you know, sometimes when you think of stomach pain, you think it's an isolated pain. You could put a hot water bottle on, put your feet up, relax and it might try and help the pain.

Bit like what happens with normal period pain, yeah.

Yeah, exactly. But this, for me, it didn't feel like an isolated pain. It started in the stomach, but it felt like it just was all encompassing. It was everywhere. I couldn't get away from it. I couldn't escape from it. And it was almost like started in the, you know, the stomach area. But it's journeying all the way up to my head in terms of affecting how I feel mentally, just feeling really low because you're not feeling yourself.

Yeah.

Feeling incredibly anxious because I didn't talk about it enough, you know? If I was at work in this new job, trying to prove myself, but at the same time, trying to disguise that I'm going through all these, you know, painful experiences in my body and I'm just not feeling, almost feeling like this is taboo, you know? My boss was a, you know, a male producer, and how do I even start that conversation when I'm still kinda coming to grips with what's happening? So it was, yeah, it was just kind of that general feeling of being low and also just feeling a bit sorry for myself in like, why is this happening to me? Especially as a young woman, you're going through so many changes anyway within your body.

Oh yeah.

And your sense of identity, for me, just that sense of identity and how you feel as a woman, how attractive or unattractive you feel, and how you're making your mark within society. And it felt like this condition, endometriosis just clouded all of that. And the focus very much was on, okay, how do I start to find those moments day to day where I can feel a bit more normal and never really getting to that point.

So how does someone like you, so, you know, you talked to us about, you were just getting work experience initially at the BBC and now obviously, you've developed this amazing career in presenting, and there are long days sometimes when you're presenting, you can be stood outdoors for hours and hours, you know, it can be really arduous. How have you managed to do what you've done whilst having this condition? And whilst, I don't know, was it throughout your whole period you'd have symptoms? Or would it-

Yeah.

It would be throughout my whole period, really-

So that's kind of about a quarter of the time.

Well, that's it. 'Cause sometimes the whole period for me would be like seven to 10 days. It wouldn't be like, you know, four days. It would, yeah. It's a big chunk of your month-

More than a quarter of your month.

Yeah, exactly.

You are suffering these, you know, awful symptoms.

Yeah. I mean-

You've gotta go to work and stand in a field or stand in a studio or-

That's it.

You know, meet all these new people and talk to all these, how did you do it?

Yeah, well, to be honest, it made me feel like I had a split personality, and probably a lot of the time I was acting, you know, 'cause I would go to the toilets and stare at myself in the mirror after having a cry. And then I remember so clearly I'd look in the mirror and then I'd smile at myself. I'd like force myself to smile to try and get myself, one, like to try and make my eyes look less, you know, red and puffy after crying. But try and like just get myself in the zone where okay, things are okay. And then-

Just put your mask back on. It's like, put your mask back on.

Put that back on. Yeah. And again, when I reflect on that, I think back, it makes me feel quite sad. I almost feel sorry for that person. Like, God, it's exhausting doing that. It's exhausting doing that. And sometimes, you know, I'd get home at the end of the night, I remember we were filming in studio for "Mastermind," which was for four weeks. And we'd be doing like four or five shows a day. It'd be 12 hours a day. Drive to home in the dark 'cause it was in the middle of winter, come back in the dark 'cause of winter. I'd get home and just wanna pass out, you know, just not wanna speak to anybody and just lie there and try and decompress before starting all over again. So yeah, it was kind of trying to block out a lot of those mental emotions and then trying to deal with the physical, any which way I could, you know, at work. And you're just trying to segment things, as much as possible.

So let's pick up then from, you've received your diagnosis of endometriosis. You are having a pretty terrible time of it, at least three quarters of the month. And the rest of the month, you're probably dreading what's coming and your mum is now gonna have a hysterectomy. Let's pick up from there. So how was that experience then of witnessing, I guess, witnessing your mum going through what she went through and knowing that you have the same condition as her?

It was a really scary time. You know, I remember going to see my mum in hospital after she'd had the full hysterectomy and-

So when you say full hysterectomy, did she have the ovaries removed as well?

Yeah, like the, I mean-

The tubes and-

Everything.

Might actually-

Everything, no, no.

Yeah. Like, yeah, I mean, she'd just call it a full hysterectomy. So in my mind that was just everything was taken out. Okay, is there sometimes where you can have-

So sometimes, they'll take just the womb, sometimes and leave the ovaries behind.

Oh, yeah.

Sometimes they'll take the womb, the fallopian tubes.

Right.

Sometimes they'll take the cervix and sometimes leave it behind, so-

I see-

There are lots of different types of hysterectomies,

Got you.

And-

In my mind, yeah.

You think she had everything with everything-

Yeah, exactly. But yeah, just seeing her in hospital after having that, which is obviously a big operation, and you know, she was completely out of it in a lot of pain. She was in hospital for quite a while after the surgery. It was two things. Obviously from, you know, a daughter's point of view, just wanting to see my mum well again and just focusing on her and then, in those moments, when now I was by myself or back at work and, you know, experiencing the pain again, it was like, "Is this the destination for me? Is this what's gonna happen to me?" And then having pockets of time thinking, well, when could this potentially happen to me? Is that gonna mean that if I don't have kids at the same time my mum had kids, then I won't be able to have them, you know? And how does this actually impact on the rest of my life and what I want in certain points of my life as a woman, you know? And it became just quite overwhelming, and a real inducer of anxiety trying to plot out how I navigate my life in a different way from seeing that kind of end result on what it's done to my mum and her body. Then after time, you know, when my mum recovered, she felt so much better as a result of having that operation. So for me, it was good to see that.

Yeah.

But, you know, obviously having that type of operation that affects what you can, you know, affects having kids, doesn't it?

Yeah, yeah, of course.

So as I, you know, as I grew older and dealing with the condition. And it's still, you know, it makes me think in a different way. And my, going back to the Zoladex injections, my symptoms got so bad that I couldn't continue on that route. It just wasn't realistic, you know? So actually, I came off them and then ended up going on the Mirena coil,

Yeah.

Which I'm still on at the minute. And that was something that actually really helped to control the condition and make me start to just realise what a normal life without that kind of pain or focus on the condition or labelling myself as much as, you know, having that condition

Yeah.

Was. and that kinda started to change my thought process going forward as well.

So when was that? So when was the Mirena coil-

Gosh it was years ago now.

Probably around a decade ago.

Okay.

Yeah.

Okay, well good.

Yeah.

That's good. And I guess it's important to highlight that with this condition, endometriosis, there's different things work for different people. The Zoladex injections, a lot of people have side effects, but some people they work well for. And some people, you know, the combined or contraceptive pill or even the progesterone only pill, they get relief. Some people Mirena. So what's the outlook then now? 'Cause you did, you mentioned fertility. We met our partners at a similar time.

Yeah.

Just before Just before pandemic, right?

Yeah, yeah. Just before, yeah, yeah.

And you are younger than me, but very excitingly you are engaged now.

Yes.

Congratulations.

Thank you.

And, you know, one of the things we know, which you've touched upon is that endometriosis can affect fertility. So what are your thoughts when it comes to fertility? Do you want to have children or-

I do and I get quite emotional about it 'cause I feel like I'm in this point at the minute where it's like, there's two sides of me. So I really want to have children, but I'm also really scared to take the coil out and then go through that pain again. And I almost makes me feel really bad about myself 'cause, you know, sometimes I think when you get to this stage, you're judged a bit more if you don't have kids. And I feel like, am I being really selfish? because I'm too scared to really face up to how that condition is affecting my body now as a 30 year old woman. And if I, you know, if I take the coil out, will I be able to conceive, you know, how much has it affected me? And so, it's kinda feels very raw and a very, I'm like literally at that point where I need to make a decision. Do you know what I mean? And what do I do? So yeah, that's how kinda things stand at the minute. And it's something that I think about every day.

Do you?

And I know I just need to get on with it and do something about it, you know?

What do you kinda see as your options? You thinking about it every day, and I guess what I'm hearing is that, whichever way you turn, there's something that's quite scary facing you.

First of all. Well, the first thing I need to do is have the coil removed.

Yeah.

Because if I don't have the coil removed, there's no chance of me getting pregnant, you know, at all. What I'm scared about is the process of having that removed, is it gonna take me back to that stage of having really painful periods and issues with endometriosis, and my symptoms that I used to have, I haven't had for a long time. And I've been able to just get on with having, you know, a nice normal life and, you know, have really happy times. So it's kind of, yeah. It's thinking about that. It's the fear of the unknown.

Yeah.

And it annoys me that I'm doing that because I'm just wasting time, you know, I just need to grow some balls and get on with it. But yeah, that's it. I dunno, I feel silly saying it really, but that is some kind of what I feel at the minute.

There's absolutely nothing silly about saying it. I think, you know, what you've really kindly shared with us is that from being young, early twenties, you've really suffered. It's been really hard, not just physically, but emotionally through your work, socially, you know, also seeing what your mum's been through before you. So it's no wonder that actually, psychologically, you know, it makes complete sense that there is fear of doing anything that could make that come back. But equally, there's this other thing that you want to explore. And sometimes, fear can be crippling.

Yeah.

Can't it?

That's it. But I know I need to, you know, I know I need to make that change. And it's confronting, I feel like, you know, 10 years on, it's a time where I'm confronting the condition in a different way.

Yeah. Yeah.

Mentally, physically. And it is, as you rightly said, the fear of the unknown in terms of not knowing how my body is going to react.

Yeah.

Before we bring on Sam, who, I'd love for her to give a little bit of input onto what we've just been talking about in fertility and maybe she can give some advice on that. One of the things I really want to ask you about is, you know, I find it fascinating that it takes on average eight years for a diagnosis to be made. And I'm so glad in your situation that it was much quicker than that, largely because your mum had had an experience herself of going through it. And it's not just here in the UK, you know, it's around the world. This condition does take a long time to diagnose. I wondered what you think the reasons are for that, having lived through it. Why do you think it takes so long? And I guess, for all of us who aren't living with it, how can we be a little bit more understanding and a little bit kinder?

Yeah, I think that's a really interesting question. And it makes me think of, say if my mum didn't have it, and I was just going through this experience myself, how would I have approached it? And I think, you know, on the one hand, I'm not sure I would've been as vocal going to the doctors because I feel like I wouldn't have really known what I was talking about. I had a bit of prior knowledge. But if I didn't have that prior knowledge, would it have been a bit more of a needle in a haystack getting to the point of the diagnosis? And I think as women sometimes, you know, and our bodies, our bodies are changing all the time. We deal with a lot even, you know, when I had painful periods for years and I just thought, well, this is just a part of what we have to deal with. This is just part of the experience and, you know, maybe I don't need to go to the doctors and have a conversation about this because it just is what it is. And also, you know, when I think growing up outside of talking to my mum, I didn't speak to anybody about anything to do with like, female reproductive or anything that, you know, connected to the womb or bleeding or the word periods. It just didn't talk about it. So I think that might have a part to play 'cause it does really feel like now, there's so much more of an openness now more than ever to talk about all these kinda things.

Yeah.

So I feel like that plays a massive part in it.

And I totally agree, we do need to be kinder to each other in terms of, well, none of us really know what's going on in anyone's life and, you know, what they could be dealing with. So yeah, a massive thing is, you know, respecting our own bodies and through that, talking about what we're going through, especially to, you know, a GP or friends or family can really help. But respecting other people as well within that same process and appreciating. We might not know what they're going through. I think that all kinda feeds into, as you said, you know, being kind and supporting each other.

Yeah.

And I think, if we are kind and we're willing to listen, and we're willing to understand, then that empowers people. You know, we're talking about a female condition here, but empowers people to share so much more. And I think sharing what you're going through, whilst it doesn't fix it, it doesn't take away the physical pain, it can actually not only mean that people can have better mental health, despite what they're going through, but, you know, it fascinates me that you went through what you went through, yet you've managed to succeed because you've had to grit your teeth. You've had to put that mask on, and you've had to endure like horrendous symptoms without letting anyone around, you know, what's going on. And, you know, there's obviously something in your personality that has allowed you to be able to grit your teeth and get through it. But how many people out there don't have that additional, whatever it takes. And therefore perhaps, you know, there are girls and women out there who aren't fulfilling their dreams, who aren't getting this, you know, getting to the point in their careers or otherwise, or, you know, holding back when it comes to relationships and things like that. And-

Yeah.

it seems very, very unfair. And it's one in 10, you know, it's common.

This is it, you know, it's astonishing, that figure. And we shouldn't be going through life with that feeling of, "Despite of I'm doing this despite this," especially if something can be done about it, and we can have more support and more awareness. It would be nice to get to the point where you're doing something, and you know this is going on in your life, but you do, as you say, you know, have that feeling that you're really grasping at those opportunities, and you're not having to hide a whole part of you because of a condition or something else that might be going on. So it's, you know, looking forward, it's really heartwarming to know that that could change.

Yeah.

And that might be a massive positive for so many people out there that might be going through, you know, similar kind of condition.

Yeah, well, thank you so much for sharing like all of that information, like such a in-depth information about what your experience has been. I think this is really good time for us to bring Sam in who's our wonderful GP, Sam Wild, who has a lot of experience in this condition, I think both personally and professionally. So let's speak to Sam. So Dr. Sam Wild, GP, clinical lead for women's health at Bupa. Thank you for coming back and joining us again on the podcast.

Having me again.

And let's start off by hearing a little bit about both your professional and actually also your personal experience of endometriosis.

So I'm a GP of over 20 years now and always had a special interest in women's health and been working as a women's health clinical lead at Bupa for the last few years. But I was at medical school actually when I was diagnosed with endometriosis. So I have that lived experience too, can really empathise with everything that Michelle was saying. You know, exactly the same experiences but had the Zoladex as well. Absolutely hated it. I remember having to go onto the ward where I was working as a surgical house officer and asking the nurse to inject me each month, and it was just horrendous. I dunno how I got through my time doing that. So I had loads and loads of different hormone treatments. Got married as soon as I could. I was lucky I met my husband when I was young, so I had my children really easily, actually, no problems at all. Had two kids and ended up having a hysterectomy in my mid thirties. So I've been through it all, which I think that's really driven my passion towards what I do now.

Yeah.

You know, really trying to empower women to get that support that they need.

Yeah.

And just out of interest, being a medical student, how long did it take you from first, I guess, going to seek help to getting a diagnosed, having the laparoscopy and getting a diagnosis?

So again, I was really lucky. So I think I probably had it, they used to say it didn't happen in teenagers. I went on the pill when I was about 14 because I was suffering my period. So right from the very start. And so, suffered all the way through and then it was at medical school and it got really bad. And actually, I was really lucky that I had private medical insurance then. So I was able to go to a GP and get diagnosed very quickly. I don't think it was particularly because I pushed it, I don't know how great my awareness of endometriosis was at that time. I think I was just very lucky that I was able to get seen quickly.

One thing I just have to say, I notice how we all sit here, and we're really good at identifying ourselves as being lucky, aren't we? You know, "I'm lucky"-

Oh, yeah.

"I've got diagnosis quickly" Not really.

Yeah.

It's the way it should be-

Not really lucky.

It's just the way it-

Um, and another thing, I'm just gonna flag that you said is, you know, which I really appreciate and I'm sure Michelle does too, that you were really lucky that you met your life partner so early in life and-

Yeah.

Because you mentioned earlier, Michelle, about people do judge.

Yeah.

You know, when you get to, so I was 40 when I had my little boy, but people do judge that, you know, "Oh, you don't have children yet." And it's actually, if you haven't met the right person to do that with, it's not always a choice. You know, people assumed with me it was, I prioritised career, I didn't.

Yeah, same.

Just hadn't met the right person.

Yeah, that's it, isn't?

You're lucky if you do.

Yeah.

And I think I felt that pressure that I, you know, I wanted to start to see if I could have children.

Yeah. Yeah.

So thank you for sharing that and also for sharing the personal journey. Firstly, I always ask our expert when they come in who's just listened to our conversation to pick up anything you've heard. Like, feel free to correct me if I've said anything wrong or, you know, anything that came up that you'd like to comment on, correct or add something to.

Yeah, so I mean, to start with, just to add to the start. So as you said, "One in 10 women in the UK." So I always compare to diabetes, but yeah, you're right with asthma as well. So it's one and a half million women in the UK, 176 million women worldwide.

And I heard something-

It's huge.

Actually, I nick it from another podcast that I was listening to that that's like basically one whole continent of the world.

It's crazy isn't it?

Wow.

It's crazy.

Yeah.

And yet 64% of women between the ages of 16 and 24 have never heard of it.

Wow.

64%?

Never even heard-

Never heard of it.

The words.

And 45% of women can't name any of the symptoms of it.

Wow.

So we're going wrong somewhere, aren't we?

It's shocking, yeah.

Definitely, we're just not talking about it enough.

But that's fascinating isn't it? That the majority, well, one in 10. Now imagine sitting here and saying that 64% of people have never heard of asthma or diabetes, That's crazy.

Yeah.

So that's, I mean, that's number one, that's where we're going wrong, isn't it? That people aren't aware of this. I believe it should be taught in school. You know, this is so common. Everybody should know about it, not just girls. Girls and boys should know about this in school.

Absolutely.

I've included it in my books for girls age nine to 13 and it's called "You Grow Girl." And I think, you know, knowledge is power, or it might be a little bit scary to know that these things can happen, but it's much more important though we're aware of it. And then if they do happen, you can get the right support straight away.

Exactly.

Totally.

People suffer in silence. But as Michelle said, I didn't talk to people about it.

Did you not?

I don't think I talked to anybody about it during my twenties and thirties.

Wow.

Even though you were working as a junior doctor?

Yeah. I just felt I had to just get on with it and, you know, I'm quite happy, I'm open, I'm an open person. I'm quite happy to talk about other things. I don't know why, but I just felt, I just need to get on with this. Maybe I thought people weren't gonna understand. I don't know.

Isn't it mad to think as well that at the time if you did talk about it, there were probably so many people that actually were going through a similar thing.

Exactly.

Yeah.

Yeah, you know.

Well, almost, almost definitely. As you discovered, Michelle.

Yeah.

You've had a friend-

Suffer with it.

Who was going through the same in silence.

Yeah.

So how do we change that? What's the solution?

Keep talking about it.

Yeah.

As you said, yeah. Start educating schools. We do a lot of of work now with businesses as well. So we are talking to managers, employees about, you know, raising their awareness of it and what can be done to support women within the workplace too. So I think, you know, we've just gotta speak about it as much as we can and just normalise that conversation. Talking about periods is still very much of a taboo, isn't it? So it's not just endometriosis, it's periods as a whole.

Yeah.

I think the sound of it as well, it sounds complicated, doesn't it?

Yeah.

And I remember when I was growing up being labelled with endometriosis as a condition.

Yeah.

You know, if you were to say, "I have endometriosis to somebody," my thoughts and feelings where they'd be like, whoa,

Yeah.

don't wanna talk about that because it sounds complicated.

Yeah.

You know?

Yeah, and I know they've got a lot of the sort of support networks out there. They call it endo for short, don't they? Endo warriors and endo, which is perhaps a bit still, it's a bit of a weird word still, but you know, it's a bit more manageable, isn't it?

Yeah. Yeah.

I think you're right. I think a word like endometriosis, you just think, I can't really get my head around that, too complicated. I'm shutting off. But I mean, we know we do still live in a man's world to some extent. We know, you know, the past couple of years it feels like there is finally some movement from government recognising that women have had a bit of a raw deal and still have a raw deal when it comes to our health. And I think there's probably no denying that if this was a condition that affected men as well as women or just men, then maybe 64, if it affected men, I'm sure more than 64% of women would've heard of it, for sure.

Sam, what else, any other comments from the chat?

Again, I think, yeah, just when you were talking about Michelle at work. So one in six women with endometriosis give up work.

Do they?

so again, scary stats, 55% they've had to have time off work due to-

That's not surprising having heard Michelle's experience, because, you know, as I mentioned, I think it's incredible that you've managed and you as well. Sam, you know, being a junior doctor is hard work.

Yeah.

But then it's the impact, you know, in other areas of your life. Like, you know, you were saying mentally, I dunno whether you felt similar. It's like you're carrying an ongoing but actually it is destroying another part of you whilst you're doing that.

That's it.

I think, you know, it's not just the pain, is it? It's that fatigue, it's that just the mental exhaustion as well. I used to go to work and come home, you know, six, seven o'clock after I'd finished surgery and just go straight home to bed. And I did that for years. I had no social life. It would keep me awake at night as well, you know, not just when I was on my period, but it ended up being throughout the month, and yeah. And you just learn to live with it. That's the thing. You sort of adapt and you just, again, I didn't really kick up at first, I just got on with it.

Yeah.

I can't help but just sort of know that there's so many things that we're discussing that overlap with the conversations that we had recently about menopause, about how women have this determination to just grit their teeth and get on with it. How they feel that there's this stigma, and it's difficult to raise it and, you know, especially raise it at work that women leave their jobs that, you know, there's a lot of similarities but that, you know, this is affecting women from teenage years.

Yeah. Yeah. And women are also finding that they're missing out promotions. Because of it, they're suffering financially because of it as well. So, you know, it's really creating an inequality in the workplace too.

I think that's a really good point as well 'cause if I think back to when I, you know, started in tele, I knew that I needed to be in the building, right? I knew that I just needed to keep going 'cause you've got this one opportunity. If you don't take it then no one might be interested anymore. So it was again, that focus of trying to ignore what was going on to grasp this new opportunity 'cause I was scared that, oh maybe I'm not gonna be, you know, if I tell anybody, maybe they're not gonna take me as seriously, maybe I'm not gonna be able to continue within this job. And again, there lies that separation because you want to support people and raise awareness, but at the same time you're hiding things 'cause you think you're gonna get judged and no one's gonna want to work with you.

I would like us to get onto a more positive note if we can. So I think, I think what would be really great from both of you would be, there'll probably be people listening to this thinking I have this condition, or I care about somebody, I know somebody and I think they have this condition. What should they do? How can they take positive action towards one, I guess getting that diagnosis, and two, finding some form of management plan, treatment plan that's gonna help alleviate their symptoms. What would you say, Michelle?

Well, you know, even just talking about this today for me has been so lovely-

Yeah.

And I think it is coming back to that, you know, as women you wanna support other women and that is so key. And just think the more we can speak out about how we're feeling, that just goes, you know, hand in hand with raising more awareness and learning, learning from each other about, you know, the condition 'cause my specific symptoms, my experience of the condition could be very different to somebody else's. It varies for different people, doesn't it? So for me it would be just, I mean, it's given me the confidence to speak out about it even more, and I want to understand other people's journeys and how they are. And I guess that goes back to being kind and being ready to be an ear and sometimes, asking those questions, you know, if you feel like you're in that safe, comfortable space to do that, asking those questions and seeing how people are, I think it's important.

Yeah.

Definitely. Sam?

So yeah, education. But I think for an individual to think of what symptoms you're experiencing, keep a period diary if you can so that you can go on to the GP with these are the symptoms that I'm experiencing and when, you know, say to the GP, "Could this be endometriosis?" So, you know, we always talk about GPs. If we know what someone's thinking, it really helps us with our management to know where they're coming from. So, you know, say, could it be this, you know, "I'd like to be investigated. What do you think about that?" And hopefully, you know, if they don't think it's that, they can explain exactly why. But if they do think it's that, then you'll on the next steps then to be able to get referred for investigations and then get some management sorted.

And, Sam, before we end, I would love for you to talk us through kind of what that looks like, what that journey looks like in terms of what investigations are likely to happen in what order, and also what kind of are the potential treatments, even if we just list them. But one of the things I wanted to reflect on, I wanted to just share really that I think making this podcast and hearing both of your stories, it always gets me thinking about my own medical practise. And I think I used to think that because the tests to diagnose endometriosis is so invasive, it is a general anaesthetic and an operation. I think I used to almost make the assumption that my patients perhaps wouldn't always want to go down that path. And even though they have the symptoms of endometriosis, might wanna skip that and go straight to treatment options. And I think, you know, just having this conversation has made me reflect and think, gosh, but when you've been through so much, like for many patients from the age of 13 or for 14, for years and years of this incredibly crippling pain physically, but also pain in every other aspect, actually laparoscopy is quite a small procedure in comparison to what they've already been through. And I think it's kind of rewritten that for me slightly. And one other thing I just wanted to mention is, I know we've been talking about women throughout this conversation, but we do also recognise that there are people who don't identify as women who are affected. And we want them to feel the part, the part of the conversation. So sort of more the scientific bit then, Sam.

Okay.

If somebody thinks they have endometriosis or might and they go to their GP, and they share that with them, what can, and what should they expect to happen?

Okay, so the GP will start by obviously asking them loads of questions about their symptoms. They will probably ask to examine them as well, and that will involve an internal examination too, quite often, because if there has been a lot of scarring left by the endometriosis, they may be able to fill that. They may also be trying to exclude other conditions as well. They will sometimes refer for an ultrasound scan. Again, we don't always see endometriosis on an ultrasound. We can see sometimes if there's a cyst, but we wouldn't necessarily see it on its own. But again, to exclude other conditions and getting an ultrasound is usually a lot quicker than having a laparoscopy. The next step is then to be referred to a gynaecologist to have a laparoscopy. And what they would probably do is start you with some treatment in the meantime, depending on, you know, how long that weight's likely to be. And that goes from things like painkillers to the hormone type treatments that we've talked about already. And that could be things like the combined pill, and the Mirena coil. And so then, when you see the gynaecologist, they're likely again to just go through that same sort of routine of the history and examination, but then get you in for the surgery. And at laparoscopy as well as diagnosis, they can also do some treatment then. So that's another reason really why women should be offered it. Because what they tend to do is they either remove or they burn away some of the patches of endometriosis if they can see them there. And actually, that, for some women can increase their fertility immediately straight after they've had that done. There's no guarantee, but it does work for some and, you know, some people will have a bit of relief for a while until sometimes it grows back again.

Okay, great. I could see you nodding away there.

Yeah, no, 'cause I, yeah, I went through that experience. I had the laparoscopy and then had laser treatment at the same time, so yeah-

When you just say it's just bringing back those memories of, you know, the different stages and, you know, the everything that you go through at different times with the condition.

Yeah.

And I know you're not here, Sam, to give specific advice to Michelle, but I just wondered what your thoughts were when she's sort of thinking now, looking forward, you know, at the moment her symptoms are pretty well managed but she's considering, you know, she's thinking every day about the fertility aspect, potentially having children. If she could takes out the Mirena, could her symptoms come back? But equally she wants to find out where she's at and just, you know, I know you're not here to do a consultation, but I know you've got the wisdom to probably say something really helpful that, you know, not just for Michelle but for other people who might be experiencing the same.

So not everyone with endometriosis is going to suffer with infertility. So I think that's really reassuring to start with. And it's often a misconception that everybody would, so they say about 30 to 50% will suffer, but also the degree of endometriosis that you have, again, doesn't correlate with infertility. So we don't really know why the association is there. Sometimes it can be obvious because there's maybe some scarring and some distortion of the tubes and things, but sometimes, someone can have very mild endometriosis or it looks like it's mild, but it does affect the fertility. So you can't really draw any conclusions about how things are gonna be until you start trying. And I know it's very difficult when you come off the treatment, but your symptoms don't normally recur straight away. And so, we would recommend that somebody started trying straight away. And again, there's always that option of having another laparoscopy. So if there is quite a lot of active endometriosis there, they can start to treat that and, you know, then get you trying to conceive straight after again.

That's good advice. Thank you. I know, I appreciate that.

So yeah, it's, you know, it's really difficult and you are always gonna have that worry, and that sort of uncertainty there, but you've just gotta try when the time's right.

No, and thank you for that 'cause it's been a big thing for me even just vocalising those kind of fears.

Yeah, and I think a lot of women with endometriosis, that's one of the things we worry about, you know? And for me, that was my main thing. I knew I wanted to have children, but it did really give me that extra pressure to get on and do that. Whereas maybe, in hindsight, I would've felt more comfortable leaving it a bit later now. I don't know, but how I felt then.

Yeah.

Very different to know.

Yeah, yeah. It's like, does that help like improve

It really does.

The hope a little bit?

It does, yeah. And it is just kind of, sometimes you have all these thoughts in your head, and it just almost becomes like a spider web of thoughts and feelings. So even just talking about it and, one, knowing that other people are going through it, but two, you know, just kind of compartmentalising it and dealing with each stage separately and seeing how you get on feels far more manageable than just a whole mishmash of thoughts and fears, you know, that you're not sharing.

Yeah.

And I think even getting in that next appointment with your GP and not necessarily taking action, doing anything, but you know, almost just even that conversation with Sam, then just kind of figuring out exactly what the next steps would be and then figuring out, you know, what your next steps are from there and help you figure out where the next plan forwards, which I don't know, I just feel really excited about.

You got a feeling.

It's not very scientific of that, is it? But anyway, I just wanna say a huge thank you to both of you. That was such a real, you know, I learned a lot from that conversation, as I'm sure did many people out there. And I think a message to anybody listening, if you've heard something today that's resonated, that's hit a note, and you think actually this is something that you are suffering with, or you just haven't felt able to go and speak to your GP or speak to those around you, I think, first and foremost, what we're all saying is just talk about it. Just share what you're going through. There's no shame, you're not alone. In fact, you know, this is very common and there is help available. So thank you both so much.

Oh, thank you.

Thank you.