I’m so pleased to speak to Jen Moore, a medical campaigner and author of the new book, Endometriosis: Understand your symptoms, Get the right treatment, Reclaim your life on today’s episode of Period Story podcast.
In this episode, Jen shares:
- Why it took 22 years to finally get an endometriosis diagnosis
- How a failed surgery led to her groundbreaking medical gaslighting campaign They Said What?
- How therapy helped her with the emotional healing required after having a hysterectomy
- How she almost needed a new endometriosis diagnosis after her hysterectomy due to the spread of the condition on her ovaries, bowels, kidneys and bladder
- How a casual conversation with a friend led to her writing a book on endometriosis
- Her advice for those struggling to get a diagnosis
- And of course, the story of her first period
Jen says that endometriosis is such an individual condition and it’s so important that we don’t compare journeys – the only comparison is with yourself.
Thank you, Jen!
Get in touch with Jen:
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SHOW TRANSCRIPT
Le’Nise Brothers: Hi Jen. Thanks so much for coming onto the show today. I am really excited to speak to you. You’re doing a lot of campaigning work and you’ve just released your first book, and we’ll get into all of that. But let’s hear about the story of your first period.
Jen Moore: Sure. Well, thank you for having me first. I’m very excited to join. My first period was a bit of a strange one. I didn’t really have menstrual health education at school. It was pretty much non-existent. All I knew came from my mum and, you know, and she had like the stack of period products ready and all that kind of thing. I just, I did not expect to be curled up on the floor of my parents’ bedroom.
Screaming, crying in agony. So much agony that I couldn’t straighten my back. I was sort of like in child’s pose and I couldn’t straighten my spine. I would bleed so, so much. And it was quite frightening. I was 11, so it was quite alarming to, to see that much blood. It was the first time I’d ever seen so much blood.
So yeah, my first period was confusing. And quite, I don’t wanna use the word traumatising, but quite a, to an 11-year-old, it was, I suppose.
Le’Nise Brothers: So you mentioned that, you didn’t really have much knowledge but you did have the preparation, so your mum had a stack of, uh, menstrual products there for you to for you to use, it was so painful and you were screaming. What did your parents do?
Jen Moore: So my mum also has endometriosis and she had a hysterectomy when I was a toddler because that’s what they told her would cure it. We obviously now know that’s not the case , but back then that was what they did. So she had a hysterectomy when I was a toddler and she kind of taught me the mechanics and the basics of what a period was.
She didn’t want to terrify me by telling, you know, what her experience was, but when it did start and it was very painful and very, very heavy, she was obviously able to recognize certain warning signs very early on. So my mum took me to the doctors straight away when I was 11, pretty much as soon as my first period had happened.
But. I was just told I’m an unlucky one, that sometimes these things happen when they first start and then they kind of settle as you grow up. And, and that it was just perfectly normal for some of us to have these really painful, really heavy periods. And it wasn’t until I was writing this book and I, and I spoke to my mum that she confessed that she was made to feel like she was this pushy parent. You know, she was this neurotic mother who was pushing her own health issues onto her child. And so she was made to feel like it was all in her head, and I was made to feel like it was just this perfectly normal thing. So yeah, that, that was a difficult conversation actually, when I first had that with my mum earlier this year, to to find out that not only had I been gaslit from the age of 11, but she was also being gaslit from the other side. But I mean, in my heart, I’d hoped that that was an unusual occurrence for mothers. But when I posted it on my stories on Instagram, the amount of messages from mothers who said this happened to me, and it shouldn’t be such a widespread experience for us.
But here we are.
Le’Nise Brothers: Hmm. So she was being, quote unquote a, a pushy parent. Getting told that this is normal, you know, it would settle. And at what point did you then realise that this wasn’t going to settle? Like this was actually something else?
Jen Moore: So they put me on the pill when I was 11.
Le’Nise Brothers: Sorry you when you were 11?
Jen Moore: Yeah, they put me on the pill. They were like, just, just take this. This will help. And there was no further investigation, no further kind of look at what could be causing that pain and no real checkup beyond a blood pressure check every couple of years. So what that did was it did sort of settle my symptoms a little bit, but I would still suffer from horrific periods and sort of three to four days of just excruciating pain.
And we would go back to the doctors and we would always mention them, even if it was, you know, for a different reason that I was going to the doctors. I would always say, or my mum would always say at the end, you know, she, she’s still really suffering with these painful periods. And again, it was, it’s normal, you know, this is just, the women’s bodies are built for pain was a, was a lovely one.
And so that continued for 22 years. This kind of cycle of me, of me going to a doctor telling them that I was really suffering during my period and ovulation as it then developed. And then just saying variations of it’s normal. You are already on the pill, so there’s nothing else we could do, even if it was something else.
I’d obviously heard of endometriosis by this point and you know, my mum had explained. We were both quite concerned that that is what was happening. So I was one of the ones that knew what Endo was before I was diagnosed, and even then I would bring it up and be told, you know, no, you can’t possibly have Endo.
You are too young, or it’s not as common as everybody likes to make out, or even if it is Endo, you’re on the pill. That’s all we can do. So yeah, it was, it was pretty much Groundhog Day for 22 years. Even though we knew something was wrong
Le’Nise Brothers: And what was the turning point? When did you, after 22 years of dealing with, as you say, medical gaslighting and diminishing what you were experiencing, what was the turning point where you were actually able to get a diagnosis?
Jen Moore: So it was during lockdown in 2021 and my, my friend and I set up the world’s smallest book club. It was just her and I and we read Period Power by Maisie Hill, and it was the first real kind of comprehensive look at a cycle that I had ever seen. And so I kind of realised that being on the pill from 11, I had no idea what my normal was in terms of my cycle, ’cause I’d, yeah, I’d just been blanketed underneath these hormones for so long. And that’s not to demonise the pill, it’s just to say that I, I didn’t know anything different. So I, I think it was probably a bit of lockdown madness. I just stopped the pill. I just thought, oh, I wonder what it’s like underneath, and just stopped.
And I think within two to three cycles, the symptoms that I used to experience during my period were every single day I. I was bedbound. I was in so much pain. I was, I was vomiting, I was passing out, I was losing so much blood that I just, I mean, I’m pale anyway. I am from Wales. We are very pale people, but even the tiny bit of color I do have just, just left my body.
I was just losing so much blood. I had to use walking sticks because my hips would just give out from underneath me. And, and yeah, that happened frighteningly fast that this became my daily life. And my husband and I kind of looked at each other and we thought, well, we don’t wanna take up doctor’s time because it’s COVID and, you know, all this stuff is happening.
But I, I just didn’t know what else to do at that point. Um, so I wrote down on three sides of A4, every single symptom that was happening in my body. I didn’t know if they were connected. ’cause at that point I still thought endo was a period condition. So I thought writing down things that were happening in my legs ’cause, or my hands weren’t related, but I did it anyway and I just read it all out on the phone to my GP and she just went quiet and said, we need to get you a scan.
Like something is, is not right. So I had the, the ultrasound scan. And it came back clear as so many of ours do. And that unfortunately kind of terminated the care pathway on the NHS. It was sort of like, well, there’s no endo on this scan, so we don’t need to do anything further. And I was exceptionally fortunate and I do recognize that, that my parents just said, enough’s enough, you know, you, you were for two decades sort of okay-Ish and getting on with your life, but now this is ruining your entire life. So they, they said, whatever it takes, we will cover it. Just, just find an answer. So I went private and that was when I was diagnosed after an MRI in 2022.
Le’Nise Brothers: And what was that feeling like?
Mm-hmm. Uh, getting that diagnosis.
Jen Moore: I describe it as one of the most confusing times in my entire life because I was happy because finally somebody had said, there’s a reason for your pain. No wonder you’re in this pain. And so I was happy, and then I thought, what is wrong with you? You’ve just said that you are happy for being sick and having a chronic condition.
And then I started to feel guilty about that because what kind of person is happy? They’re sick. And then I was panicking because the next thing was surgery, but I was also really hopeful because I thought back then that that would give me my life back. And then I was really guilty again because. You know, it was obviously gonna cost a lot of money, and my parents had said that they would cover it, and I felt guilt for that.
But then I also felt gratitude for that, and it was this whole spectrum of emotion happening within the space of an hour, and it was so intense that I just sat on my sofa. And my husband was cooking us dinner and I just alternated between laughing and crying for about another two hours. And he was like, are you okay?
And I was like, I genuinely don’t know. I need to like process this for a little bit before I answer that because I don’t know if I’m okay right now. And I think that’s really, really important to acknowledge that more than one thing can be true at the same time. You know, you can be concerned but grateful, you know, thankful and happy and validated at the same time as angry at a system that left it for so long.
You know, we are very complicated beings as humans, and we can hold these emotions all at once, and that’s so, that’s okay if it’s confusing and overwhelming because. It is, you know, to not put too fine a point on it. It is a very overwhelming time.
Le’Nise Brothers: Yeah. And so what happened next?
Jen Moore: Mm, so after that I had a surgery within a couple of months because it was private again, very fortunate.
And he was a very, very well respected oncology surgeon, gynecology oncology. So a cancer surgeon very used to doing complicated surgeries and he said to me, endo, you know, it’s terrible, but we’ve got this, you know, we can do this. And so we were so hopeful and I had the surgery and he diagnosed me with stage two endo and a bit in quotes of adeno and he, you know, was very, very confident that he’d got it all, and that everything with it was gonna be fine. And after about eight weeks, I think I knew that it was not fine because I, I could, I’ve had surgeries before, albeit orthopedic, but I’ve had surgeries. I know what surgical healing is. And this wasn’t surgical healing.
It was the same pain that I was having from before. And I waited until my follow up with him. ’cause you know, at this point I thought this guy was like a knight in shining armor. So I was like, I’ll tell him and he’ll fix it and he’ll tell me what to do. And I told him, and he, he leaned back and he said, Jen, I’m, I’m the surgeon.
You know, I’ve done my job and I think this might be psychosomatic now. So you need to be aggressive with pain medication and, and look at therapy. And I was crushed ’cause I thought this guy was my hope for my future. And at that point I was so low in terms of my mental health. I was so low. And I thought he was my hope and my kind of life raft.
And to hear that crushed me and I, I walked out. My husband, God love him. He is amazing. But he, he looked at me and he said, you know, Jen, you’re a really intelligent woman, but he is right. You are not a doctor. Maybe we should listen. Maybe he’s right, but if you want a second opinion, I back you. We will do it in a heartbeat. So I did, I got a second opinion with, at this point, I knew how important it was to see someone who’s an expert in endo and doesn’t do lots of other surgeries. So I found someone, I went to see them and I ended up having surgery with him almost a day to, or a year, sorry, to the day of my first one.
And it was really, really a quite a complicated surgery because I needed a urology surgeon and I needed all sorts of other people in the room. And he changed the diagnosis to stage four. He said I was at risk of double kidney failure because there was disease missed that was choking both of my ureters.
And he also said that the adenomyosis was so advanced that it was the right thing ’cause I ended up having a hysterectomy during that surgery as well. So it was a bit of a, a wild 12 months from that first surgery to the second surgery. Bless him though, I will say, my husband afterwards, he was like, never listen to me again.
He was like, he was like, you know, your body, I, I am converted. Like, you know, you do you when it comes to your body because clearly no one else understands it like you do. And I think that’s so true for all of us, isn’t it? It’s, it’s that inner knowledge of what’s going on and that it isn’t right. Um, but yeah, it was, it was a bit of a wild what happened next?
Le’Nise Brothers: So you had this very complicated surgery where the result was a hysterectomy amongst other procedures. Can you talk a little bit about what you were feeling after you found out that you needed to have a hysterectomy? Because the thing that that I think not a lot of people are aware of is when you have these surgeries, so laparoscopy and then anything beyond that, you need to sign a consent form that then that gives them the option to do a hysterectomy if needed. So you are waking up from the surgery. You are getting told everything is fine. You’ve had x, y, and z done. Talk about how you felt after that.
Jen Moore: So I knew that hysterectomy was very, very likely, going into the surgery, and it was something that I, at that point was in so much pain.
That I just wanted it out anyway. So at that point it was just kind of instant relief and it turned out it had fibroids too that nobody had picked up before. So that was in the words of my surgeon, one very diseased organ. So to have it out was instant relief physically and mentally. It was kind of, I could feel that this bowling ball of an organ, ’cause that’s what it felt like was gone straight away.
Like that pressure and that heaviness was just gone. And emotionally it was like, I never have, have to have a period again. This is amazing. So it was, I think it was probably a couple of weeks, maybe even a month after. I realised what that actually meant, and I was never able to have children because my husband and I always thought there would be time.
We didn’t know if that was right for us in any of the moments before in our life. And so we always thought there would be the choice. And so suddenly to have that choice permanently removed from the table. Hit me really quite hard and I, it doesn’t mean I regret it ’cause I don’t, that physical relief is enough to, to convince me that it was the right thing for the rest of my life.
But it is hard and it comes with a lot of consequences. Even if you aren’t somebody who desperately wants a family, you know, it’s really difficult and my sister-in-law, bless her, she basically conceived her daughter the day I had my hysterectomy, we think. So it was this really stark reminder of two different life paths for a woman, and we’re very similar in age and we’re very close locally.
So it was all, you know, it was a constant reminder. And that first year, I think was so much harder emotionally than I was ever prepared for or ever expected? You know, the first Mother’s Day, the first Halloween, when everyone’s doing cute stuff on Christmas, the first Father’s Day ’cause my husband, he was more convinced than I, that maybe he didn’t really want children.
So for him he was fine. And you know, that’s his own words, not, I’m not putting them for him, but for me, when it got to the first Father’s Day. I had to leave the supermarket because of all the stuff around me. And I just felt so much guilt that not only had these conditions taken my choice away, my ability to change my mind, they’ve taken his too.
And it was so difficult and it still can be now when I, I write about it in the book and when I was reading the audiobook version, that was the only part where I kind of choked. ’cause it’s. I dunno. It’s just what we are taught from such a young age, isn’t it?
Le’Nise Brothers: Mm-hmm.
Jen Moore: Play with your little babies and you know, do all these lovely things with your little dolls and one day you’ll have children and you’ll understand and all these messages.
And then suddenly you’re kind of like, well, what does that leave me? Where does that leave me? And it coincided as well with some trolling online, which wasn’t helpful because it kind of, these wonderful people were basically reiterating my inner fears and they were like, oh, your husband’s gonna leave you.
You’ve removed your only purpose on this planet, so you might as well just un alive yourself. There was some really horrific stuff. It was like, well now you don’t deserve to take up Earth’s resources because you are not providing anything, so we, you know, we should just get rid of you. And it’s horrible to see that sort of thing when you are trying to process it yourself.
So, yeah, it was. It hit me in a way that I never expected it to. And it was very confusing because I didn’t regret it either. It was this really weird thing, and I think it’s just important to know that that’s okay and that it’ll affect all of us differently. And no matter what you feel after something like that, it’s okay if it isn’t what you expected.
And it just takes time. Yeah, it does get better.
Le’Nise Brothers: Did you have any therapy or were you offered any therapy?
Jen Moore: Heh. Was I offered it? No. Did I find it myself? Yes. And it was one of the best things I did and it helped me remember that, you know, to find the important things in my life and what I adore and I cherish and just invite more of those in and, and that to remember the human underneath all of these conditions.
’cause it can be really all consuming. So yeah, it’s, I would recommend it to anybody. It’s a tricky one because especially before hysterectomy, sometimes we are told we have to have therapy in order to have one in terms of we don’t believe that you really want it. So you need to see a, you know, a health professional to check.
And I think it’s quite tricky then to be told therapy can help because we’re so defensive, because we’ve had our mental health used and weaponised against us for so long. You know, it’s in your head, it’s anxiety, it’s stress, you’ll change your mind. But it, I think it is really important and really, really helpful.
Le’Nise Brothers: There’s a physical healing, there’s the emotional healing, but what we know about endometriosis is that hysterectomy is not a cure. Can you just talk a little bit about, you said that you knew about the stage of endometriosis that you had. Mm-hmm. But what type of endometriosis did you have, because you mentioned your kidneys, so can you say a little bit more about that, and can you also talk a little bit more about what your experience is now of the condition?
Jen Moore: Sure. So there’s three types of endometriosis. And it, you’ve got superficial, which I hate that term because it makes it sound like it’s not a big deal, but it can be just as debilitating. Just means it doesn’t grow more than naught 0.5 millimeter into a tissue. So that’s all that means. So you’ve got superficial.
You’ve got deep infiltrating endometriosis where it grows more than naught, 0.5 millimeters into a tissue. And then you have ovarian endometriomas as well, which are basically, they also call them chocolate cysts, which is just a really unappetising name. But they can grow to really quite a size in the ovary.
And you also have, which isn’t a type of endometriosis, but it, it can be caused by endometriosis and the surgeries adhesions, which is if you picture a pumpkin when you cut the top off at Halloween, that kind of meshy fibrous stuff. That’s the best way I can think of to visualise adhesions. And it sticks things together.
So it sticks organs to organs where they’re meant to slide nicely. It kind of glues them, and then you get that ripping pain. Um, it’s, it’s horrible, horrible stuff, but it’s sadly quite. Overlooked as a cause of considerable pain. And I had all, all of those in various places. It’s really, really tricky when we talk about staging, because I had stage four and it was debilitating, but some people can have stage four.
So you know, they’ve got all of the above. The, the, the endometriomas, the deeply infiltrating disease, the adhesions, the superficial deposits, you know. You can have all of that and be completely asymptomatic, or you can have one tiny speck of superficial disease and be debilitated too. So it’s. It’s a really complicated disease that we, that we just don’t know enough about.
We are looking to move away from the staging system because it, because of that complication and because it can minimise patients with the lower stages, which is just not helpful to anybody, um, to looking at something where it is based on location and, and all that kind of thing, which I think is, you know a sensible move. So in terms of where I am at now, obviously there isn’t a cure for endometriosis and I currently had an MRI few months back and they can see that my bowel loops are stuck together. My ovary is tethered to the vaginal vault where they seal the, the vagina after a hysterectomy. So the ovary is stuck to that.
My bladder is stuck to that. My bowel is stuck to the bladder. You know, it’s. It’s a bit of a mess in there. And what we’re currently trying to figure out is whether it’s adhesions causing all of this, whether it’s deeply infiltrating endometriosis, whether it’s a combination and, and the kind of best, best route forward.
But it’s, it’s crushing to be honest. And what I noticed is that after my hysterectomy, it was like having to be diagnosed again. Because even though we know a hysterectomy isn’t a cure for endometriosis, that isn’t common knowledge,. Amongst wider healthcare professionals. So I ended up in a, in A&E, and I was there for 24 hours because nobody could figure out what to do with me.
So gynecology said, Hmm, she doesn’t have gynecological organs, so she can’t come here even though I have ovaries and the endo clinic, it’s under gynecology. So that was just, I don’t understand that. But the colorectal team was like, well, she can’t really come here because it’s not. I mean, rightly so. It, it’s not really our field either.
And you know, it’s just kind of being bounced around all these departments and the result was a patient sat for 24 hours in the waiting room. So it’s, it’s difficult when you’ve had a hysterectomy and then you start to wonder if there’s still some endo in there because it’s almost like you have to fight for diagnosis again.
Especially if you aren’t seeing, you know, a private specialist if you’re not. Mm-hmm. But it, it’s, yeah, it’s hard and it’s tiring and it’s exhausting, but, uh, we take it day by day. That’s what we’re trying to do at the minute. Just, just take it one step at a time.
Le’Nise Brothers: Yeah. Well, thank you so much for sharing your story.
I think it’s really important for people to hear that hysterectomy, not being the full answer because again, I’ve heard this a lot from, from, from a lot of my clients and people that I’ve spoken to, they go to their doctor, they get told, oh, well, you just have a hysterectomy. Especially with fibroids.
Jen Moore: Yes.
Le’Nise Brothers: Oh, have a hysterectomy. With adenomyosis, have a, have a hysterectomy that will cure everything. But we know that especially with endometriosis, it’s much more than that. Mm-hmm. So now talk a little bit more about, I wanna talk about the book in a second, but I was really intrigued when I saw your signature or your email signature and you said that you, one of your your titles was a medical gaslighting. Campaigner? Yeah. Can you say more about this?
Jen Moore: Sure. So I didn’t really fully understand medical gaslighting until about a month before my hysterectomy, and the surgeon looked at me and he was like, you know, Jen, I’ve got three kids. Maybe the fact you can’t have any will balance out the environmental impact of mine.
And I at the time. I just, I was like, oh, okay. Like, because I was hope I was trying to get access to healthcare, so I was just like, okay. Uh, great. But it wasn’t until after my surgery and I was recovering in bed and that interaction just kept circling back into, into my brain, almost like a flashback.
And I was like, what is this? And it was then that I came across the title of, of medical gas lighting. And when I started looking at it. I realised that I have been medically gaslit since the age of 11. And medical gaslighting ranges from the death by a thousand cuts. It’s normal or you know, that’s just what a woman has to deal with all the way up to those horrific, misogynistic, overtly horrible comments.
And it’s everything in between. And I realised that I had been exposed to so much of it. At this point in my life that I had internalised it and started to believe it. And I realised when I was a teenager, I was gaslighting myself because of it. And I was saying, maybe I just have a low pain threshold.
Maybe I’m just not coping with this properly. How come everybody else is dealing with this? And I can’t, that I must be weak. And it enraged me so much, and I started doing this thing on my Instagram where I would take some of the ridiculous quotes that I’d sort of thought back on, and I turned them into like motivational poster style art.
And I put it up on my, on my Instagram, and I was flooded with comments and messages from women and other marginalized people too. They had their own examples and not just one. They had numerous examples each, and I realised that this problem is so much bigger than myself, so much bigger. And I started trying to think, well, what can I do about it then?
’cause it’s one thing, you know, to share our experiences and our stories, and that’s super, super important for community and validation and emotional support. But it’s not gonna help my nieces. And I, I look at my nieces and I’m like, I refuse to let you be told what I’ve been told. So I was thinking, well, what can I do?
And it was when I started then to speak up about it. And I, I founded a project called, They Said What?And it’s gathered so far. Nearly thousands. So we’re kind of nearly tipping the thousands mark of experiences of medical gaslighting from around the world, but primarily in the UK. And when I look at those submissions, I am just, I, I’ve cried at numerous, I have sworn at many, some I have laughed at.
Because they are just so ludicrous, and, and the person submitting them is like, this is so ridiculous. All you can do is laugh. And it’s, it’s so systemic. This is so beyond a couple of misogynistic doctors, and if we remove them, then the problem is solved, goes way deeper than that. We need to, I try to think of it as like a garden and if you just remove one weed, but you’ve still got the weeds in the soil.
Then they’re just gonna keep coming back and choking all of the good plants that are there too. So we need to actually change the soil. We need to dig everything out, and we need to start again because this is something that has been baked into our medical system for millennia, and it isn’t gonna change overnight.
And a lot of the time doctors don’t realise they’re doing it, especially with those kind of, it’s normal. Take the pill. That’s what they’ve been taught at medical school. So of course they’re gonna pass that knowledge on because they think that’s the right thing to do. You can’t really blame those doctors for that.
I mean, you can blame the guy that told me my infertility was a good thing. Like he’s, he’s another example. We can blame him a lot, but you know, the ones that just are passing on the knowledge they were taught. You can’t really blame them. That’s down to the education and the curriculum. So the project, um, is working with clinical schools currently to, to try and improve that.
It’s, it’s gonna take a long, long time. It’s not an overnight fix, but I am hopeful. I’m hopeful that if we keep raising it and. Saying that we are not gonna internalise that anymore, then we can make a change. But it’s, it’s gonna take a long time and a lot of effort and also a lot of humility from doctors, I think to, to lower that ego, which we all have to lower that ego and to say, do you know what?
I’ve probably been guilty of that and I didn’t realise, so I’m gonna be more aware of it in the future. It takes, it takes a lot from a lot of different parties. But yeah, it’s something that I’m really proud of and I would love to do to do a lot more of in the future.
Le’Nise Brothers: Have you had any feedback from doctors on this?
Jen Moore: Mm-hmm.
Le’Nise Brothers: Because, you know, I think most, most women especially. Including many, many women of color have some sort of experience with a doctor. Yeah. Where they felt minimised. They felt diminished, they felt gaslit. And some women are able to push back and say no. You know, like I won’t accept that. But a lot.
Because they’re in this kind of matriarchal, patriarchal situation where you, they’re so learned. They’re, you know, they know so much. They feel like they can’t. Mm-hmm. So what, what sort of feedback have you got from doctors about this?
Jen Moore: So the one thing I, when I started it that I really wanted to be clear on is that it isn’t about bashing doctors or any particular section of doctors like GPs or gynos because we need them.
We need them on board to, to change this. And so the feedback has been overwhelmingly positive and kind of wanting to, to make a change. And especially with the younger generations, when I go into clinical schools, it’s very much. How can we make sure we are not making these mistakes? How do we make sure we can be better doctors for our patients?
And so the, you know, overwhelmingly it’s been very, very positive. You do get a certain section who aren’t as willing to lower that ego and to have the conversation. And they get very, very defensive. And to some extent I can understand, you know, they’ve been taught that they are academically high achievers.
They’re very, very intelligent. They’re the best of the best. They get into medical school and they’re taught that, you know, they are the sort of pantheon of medical knowledge and health knowledge. And so for them to have patients or a group of patients challenging that and saying, well, actually you are harming patients sometimes.
It’s, it’s hard for them to take because you don’t go into medicine because you want to hurt people. Right. You, you don’t, because you want to help them. You’d hope so. It, it can be a lot to kind of process. So it’s, it’s finding that balance of allowing them to have that moment of, whoa, hang on. You know, I don’t agree.
But also then sort of talking them round gently and showing them that it isn’t. An attack on them. It’s an attack on the system that they were educated in, and not even an attack. It’s just a, an effort to improve it really.
Le’Nise Brothers: Mm-hmm.
Jen Moore: But then you do, so you do get some then that come round, but then you do just get the hardcore ones.
And I, I hate generalising because we are all different and all human, but it tends to be the older ones and the, you know. Older white males, if I’m being honest, but just are like, no, this is ridiculous. Absolutely ridiculous. And this doesn’t exist. And, and calling it gaslighting is harmful to real, uh, victims of gaslighting.
So, you know, instant victim blaming, there you are not being gaslit. Whereas actually when you look at the definitions of gaslighting, it’s, it’s pretty much textbook. But yeah, so you do get them. But I’m very, very grateful that they have been in the overwhelming minority. The ones that kind of just, just aren’t interested.
Yeah. Yeah. It is important to work with the clinicians though, and so I’m always conscious that it isn’t just about, you know, attacking them because that’s not productive for anyone.
Le’Nise Brothers: Yeah, and thinking more now, speaking more now about your patient advocacy work, your book, which is Endometriosis, Understand your symptoms, Get the right treatment, Reclaim your life has just come out and it’s basically as a patient yourself, a way for other people with endometriosis to advocate for themselves, have the right information. I want to just understand a little bit more about how the book came to life. As an author myself, I’m really interested in this side of it. So can you talk more about how the book came to life?
Jen Moore: Sure. So I have always loved books.
I was kind of nicknamed Matilda growing up. You know, I was obsessed with Bell and Matilda and two bookish icons. And so I always had it in my head that I would love to write a book at some point, but I just didn’t really know what, what it would be. And then when I started doing my Instagram account and, you know, putting information out there and working with experts and trying and also patients and just gathering all of this information. I realised there was nowhere that it was all in one place. It was, you would have to scroll through a feed sometimes going back a year to get to a certain topic or, and I just thought that’s, that’s great and it reaches a lot of people, but wouldn’t it be nice if it was all in one place?
And so I basically created what I wished was around, um, I. There are some fantastic books that are a little bit more like memoirs in terms of their own experience with endometriosis, and I, I didn’t want this to be that because my story is not unique. It’s not any different to any other patient that I talk to if I’m honest.
In fact, it’s quite often a, even though it took 22 years and a failed surgery, it’s, it’s quite often better than most people that I’d speak to because I don’t have these kind of other intersectional hurdles that I have to face. So I didn’t want it to to be my story. I wanted it to be our story collectively with voices that don’t often get to be heard both from patients and also experts, you know, the patient, the, um, sorry, the surgeons that are normally in the operating room, so we don’t often hear from them, you know, which is fantastic. We’d like, please stay in the operating room. But it was just amazing to get them on board and just to have up to date information and be able to say, here it is, in one like nice little package.
Was just something that I thought would be incredible. So I, I put the proposal together and then it sat on my computer for a while. ’cause I, I had the imposter syndrome and I thought, well, nobody, like, I’m not a doctor, nobody’s gonna want this. And I was speaking to an author friend Sarah Graham, who wrote Rebel Bodies and we were having cake in a bookshop, very fittingly.
And I mentioned that I had this proposal and she said I think my agent might like this. So she put me in touch with her agent and then within a few months, Bloomsbury had signed on and suddenly I was writing a book. So that was, yeah, it was a very, very intense few months because we wanted to get it out as soon as possible, because whilst I do think endometriosis is having a bit of a moment in terms of awareness, it’s important that that awareness is accurate and diverse.
And I don’t think it necessarily has been. And I think a lot of it has been very trauma dumping and click baiting. Um, which, you know, the media is the media. They gotta do what they gotta do. But just to have this opportunity to actually talk about nuance and depth and intersectionality and all these things that we don’t often get the space to, um, was really, really important to me.
So yeah, it kind of. I still feels like a bit of a whirlwind ’cause it hasn’t even been a year since we signed contracts to now, so it happened really fast. But it’s something that I’m proud of and I don’t, I don’t often say that I’m not very good at saying that about myself, but I am very, very proud of it.
Le’Nise Brothers: Well, you should be proud. It’s amazing to have a book out in the world and someone said this to me when my book was being released. She said, this is just the beginning and it really is, and I you’ll see this like in a year, in a couple of years because the book, it will, it will always be there. You know, like someone has a heart, but hopefully many people have hard copies of your book and instagram can go away. You know, social media can go away, but you know, this will always be around and that’s something that I think is quite exciting to know that, you know, you, someone doesn’t have to scroll through a feed to find information. You can just say, okay, well pick up a copy of my book and you know, you can get more information there.
And I think, yeah, you should be really proud of that.
Jen Moore: Thank you. Thank you so much. And the feedback has been so. I say it’s been like heartwarming and mind blowing in equal measure. It’s to, to see people sending me pictures of it in while they’re in the hospital waiting room, and a surgeon messaged me and said, my, my client or my patient just walked into clinic today and with a copy of your book.
And to hear that and just to read the reviews, that it’s giving people back their confidence and that just, yeah, it’s every, all I wanted to do was do this community justice, all of us. All of the community. And yeah, that’s all I wanted to do. And the feedback is, is maybe saying that I, that I kind of did that.
So, yeah. Yeah. I am proud. I am proud and I’m very excited to see where it leads.
Le’Nise Brothers: Yeah. One thing I did wanna ask you, and I, as a nutritionist, every sort of book like this, I always flip and see what people are talking about food. Mm-hmm. And you know how they’re talking about supplements and when I looked through your book, I was like, oh there are only about two pages on nutrition. Can you talk a little bit more about why you decided not to include a bigger focus on nutrition and supplements?
Jen Moore: Sure. So nutrition, when it comes to endometriosis is a bit of a hot topic, and so I wanted to handle it delicately because so many of us are taught just lose weight or that, you know, you Google and you find this endo diet that is going to magically fix you. And to be honest, there is no such thing as an endometriosis diet that is gonna work for everybody. And so what I didn’t want to do in this book was to say, here’s an endo diet that is gonna work for you.
Because if it doesn’t it kind of then leads to, well, why didn’t that work for me? What did I do wrong? Did I, and there’s a lot of shame and judgment around nutrition when it comes to chronic illness. Sadly, we know it is incredibly important and that, you know, following basic anti-inflammatory principles, for example, can be helpful for symptom management.
But beyond that, it is so individualised.
Le’Nise Brothers: Hmm.
Jen Moore: And so I didn’t want to go down this track of presenting false hope and saying, these are the rules, you know, this is the right way to do it, because there’s no right or wrong way. And when, what I worry about with some of the discourse around nutrition and endometriosis in particular is, and I’ve had this, and I know numerous patients have had this ’cause they’ve told me.
Well, if you are not doing this, you are not taking your disease seriously. You are not, you know, you can’t be that bad because you’re not willing to do this. And so instead what I wanted to do was, was bring it up and say, you know, nutrition can have and want your mental impact on symptoms for some people, and it is worth exploring.
But I also wanted to start introducing some little seeds of thought that it isn’t the same for every person. That actually there are cultural differences that make saying, you know, follow this diet a little bit more difficult and sometimes borderline racist. You know, there are sort of economic issues behind some of the diets that are presented that are, you know, just so many things.
Actually sometimes I think some of the nutrition discourse can be a bit victim blamey at the minute on social media, and it can be, well, you need to do this, and even if you’re in the middle of a flare up, then you know it must be because you’ve eaten something wrong and you need to do this. So it was a tricky one because.
I, I didn’t want to ignore it. It felt like an elephant in the room, but I wanted to start sowing these thoughts of we are all unique and we all have unique triggers. And so working with somebody who is understanding of chronic illness and able to guide you through that in a more gentle way, that’s what I wanted to put forward.
Not say I know about nutrition. Here’s the perfect diet because it worked for me. It might be somebody else’s worst nightmare for numerous reasons. It might include flare foods. For them, it might be economically impossible. It might be completely alien to them culturally to, to, to follow this diet and something that they don’t want to give up.
You know, it is, it’s so nuanced and yeah, it’s, it’s a tricky one because it would be lovely if there was a perfect diet and a perfect supplement blend for four endometriosis symptoms, and maybe one day we will find one, but I, I wanted it to be more about general principles that can be helpful to encourage people to seek support from people who can guide them through gently, and also reminding that we are all in very, very different situations. In lots of ways. Hmm. So just because it works for one doesn’t mean it will work for another. So that’s the way I wanted to kind of focus it and to bring it in. And maybe one day there will be a much more inclusive, look at nutrition when it comes to endometriosis in, in book form. And I would welcome that.
Like I’m, I’m a person that will try anything, if there’s a chance of it reducing my symptoms, I’m trying it because we all deserve that relief. But yeah, I just didn’t feel like I was best placed to put that forward, if that makes sense.
Le’Nise Brothers: Yeah. No, I appreciate that. And , I respect that because I just, like I said, I always look and I see, okay, well what are they saying about food?
Because in my book, I wrote a lot, a lot about nutrition for endometriosis, and I, the work that I do with my clients is who have endometriosis is of course it’s extremely individualised and I appreciate that point as well because, you know, we, when you see things on social media like, eat this, don’t eat that, or don’t eat meat, eat, you know, eat loads of plants.
It doesn’t take into account bio-individuality, which is basically what you’re saying. We all are different. All of our experience of endometriosis is very different. You know, I have endometriosis myself but my experience is very different to yours and I really, I appreciate that.
Jen Moore: Thank you.
Le’Nise Brothers: I want to talk a little bit now about diagnosis because you know, you talked about your experience of diagnosis and it was a very long path for you. And this is something I see a lot in my practice. It’s, I think I might have endometriosis or it’s not even that it’s there, it’s my periods are really painful.
Yeah. Or. I’m having really painful bowel movements. You know, the myriad of symptoms that you can experience with endometriosis. What do you say to people who come to you and say like, I know there’s something going on. I don’t know if it’s endometriosis, but I know something’s going on. Mm-hmm.
What do you say to them about getting a diagnosis or speaking to a medical professional?
Jen Moore: It’s a difficult one because chances are when they bring it up to me, it’s not their first time bringing it up. Normally they’ve seen multiple medical professionals and, you know, been turned away or told there’s nothing that can they can do or that it’s normal.
So it is tricky. The first thing I do say is to track their symptoms via whatever method works for you. Whether that’s an app, whether that’s, you know, paper and pen on your phone. Whatever it is, is to track them and just to, you don’t have to do it forever, you know, but just start noticing patterns, noticing if things are you know, getting worse at certain points in a month. Like, you know, just start noticing things and, and get the data, because doctors appreciate data and you start talking their language. The second thing to do is to keep going to a doctor. Keep finding one that will listen. And if you’re finding that you’re seeing the same doctor and they’re just, you’re just hitting a brick wall, ask to see another one.
You know, you’re perfectly within your rights to do that. Keep doing that until somebody listens. You can find out if there’s somebody at your practice with a, a special interest in, in women’s health to call it its broad term. You know, it doesn’t mean they’re an expert, but it means that they might have at least come across these terms and, and these issues before.
So that can be helpful. Another thing I say is if they’re experiencing a lot of gaslighting is, and you know that brick wall is to take someone with them in appointments to. That person can do whatever you want ’em to do. You know, you, you can say, I’d like you to advocate for me vocally. I’d like you to, to sort of challenge the doctor or, or remember to ask these questions because sometimes I forget.
Or they can just sit there quietly and take notes so that you can look back later. Or they can literally just be there for when you are done and you want to go and do something nice afterwards. So there’s lots of things that, that somebody can do. But it does help. I found, and I hate saying this, but I found it’s much more helpful when my husband is in the room and I hate saying it, but it’s true.
And then, so keep going. Tracking your symptoms, taking somebody with you and being really clear with your language in that doctor’s office, saying things like, I have painful periods, which is what I did for 22 years. ’cause that’s what I thought it was. It’s just instantly put into their head period pain.
Whereas now if I go in and say, I’m concerned about my endometriosis symptoms, or, you know, I’m having excruciating pelvic pain that is waking me up at night, stopping me from sleeping and interrupting my life, saying things like that, they’re little alarm bells for a doctor that actually. You know, your life is being interrupted.
You are not getting sleep. That, that’s not right. So being really, really clear with language and if you’re still being refused, I, I say to people, ask them to put it on your notes, say to the doctor. Okay, great. Thank you for listening. Could you just put on my notes that you are refusing to send me for a scan or refusing to refer me for gynecology?
Just see what happens, because not always, but sometimes that’s enough for them to suddenly change their mind. And so yeah, that, that can be helpful. But it’s, it’s such a tricky one. ’cause like I say, a lot of the time people have been doing all of this and they’re still finding those brick walls and it’s, what do you say to that person that’s, that’s just running out of steam to fight for themself.
Le’Nise Brothers: Mm-hmm.
Jen Moore: And it’s, it’s hard ’cause I’ve been there. I, I’m great at telling people to advocate for themselves, but I sat in a doctor’s office even recently and just been like, oh, okay, great, thanks. And walking, you know, walking out and. It, it is tough. It’s really tough. But yeah, there, there are things you can do and there’s some great advice from GPs in the book as well about how to kind of navigate those, those scenarios.
Which I think can be really helpful. But yeah, it’s, it’s just persistence a lot of the time and it’s such a rubbish answer ’cause it puts all the effort on us, right? It, it is saying that you have to keep fighting, not. You know, to the system or the doctors, you’ve gotta do better. But that is happening behind the scenes.
But until then, we, we just have to keep going.
Le’Nise Brothers: Yeah, I know what you, what you mean. I remember about, you know, just feeling like it’s not the best answer because it puts so much on, on the client, the patient. Like you have to expend even more energy and you are in a flare. You’re dealing with all of this physical and emotional pain and having to advocate your for yourself on top of that, it’s just a lot. And you just, you’re thinking, where am I gonna find the energy to do this? And I remember a few years ago I was on this panel and we were talking about exactly this topic and the doctor was saying, oh, you know, you just have to be, be a diva, be a, you know, be kind of like, you know, like be annoying, be a pest.
And I just thought, you know, I get what you’re saying, but at the same time, doctors just need to listen, you know? Yeah. Like, we shouldn’t have to do that. Doctors should just listen the first time and not dismiss us. Anyway, rant over.
Jen Moore: No, it’s so true though. But if you went in and you were a diva or whatever version of that, that means to you, you would be labeled as aggressive or difficult or uh, dramatic or hysterical, you know, all of these things and that doesn’t help you either, and you are like, well, the doctor told me that I had to do, and my husband, bless him, has never had to be a diva to access healthcare. He just has a concern. Walks into the GP, tells them the problem, they tell him what to do, or you know what they are going to do, and he walks out.
He doesn’t have to be a diva because they listen and they believe. And it’s silly things like the amount of us who have had to worry about what to wear. Before a doctor’s office or should I do my makeup? Would that make me look too well or should I go without my makeup and look worse object, you know, in, in quotes.
But then will they take me seriously or will they think, I dunno what I’m talking about? Or you know, should I dress nicely and smartly so they think I’m very intelligent and put together? Or will that make them think, oh, you can’t be in that much pain. Look how nicely you addressed. My husband has never had to think of that in his entire life, ever.
He used to think dressing smart was putting on a polo shirt to go to the dentist just so that the dentist would be nicer. That was the level of like, but he has never worried that he would be denied healthcare because of how he’s dressed, and that to me was such an eyeopener. Just, yeah, so you know, God bless that doctor for being be a diva, but all that’s gonna do is get us labeled as as angry, hysterical women.
Le’Nise Brothers: Yeah, I, yeah, and then you kind of add the racial element on top of that. And like if you are like a mixed race or black woman going in and being a little bit more assertive. Aggressive, angry, and it’s rage, rage inducing. Yeah. On that note, what is the one thought that you’d love to leave listeners with today?
Jen Moore: Ooh, just one. I think it would be how individual this disease is and how individual you are. Your life is, and so, you know, sharing our stories is important, but don’t compare our stories because we are not all in the same boat. You know, we’re in the same storm, but we’re all in very different boats. Some of us are in luxury liners and some of us are on little handmade rafts, and some of us have to navigate rapids while other of us have the smoother stretch of sea.
You know, it’s it’s so individualised, so please don’t compare your journey. The only comparison really is, is with yourself. You know, how are you feeling today? What are your symptoms like today? Do you need any extra support today? That’s the comparison we should be encouraging. And yeah, it’s very hard to pick one, but I think have I, if I’d known that maybe I wouldn’t have just, you know, thought I was being weak for so long. So, yeah, I think that can be an important one to, to remember.
Le’Nise Brothers: Thank you so much, Jen, for sharing your story, for your wisdom, and for all of the amazing campaigning work that you do.
Jen Moore: Thank you.