Transcript: Open Up the Conversation - How to Advocate for yourself in the Doctor's Office

Note: This transcript was created using the tool TurboScribe.ai - and whilst efforts have been made to rectify any mistakes, some errors might still occur.

[Lauren - Freja's Volunteer]

Hi everyone and welcome to Freja's first of our Open Up the Conversation series. So before we start I wanted to do a quick introduction just for anyone who might be listening who has not yet heard of Freja's. Freja's is on a mission to change the way that society talks, thinks and feels about reproductive health conditions.

We believe that a key step in creating real and meaningful change is by building a better understanding of how conditions like fibroids, endometriosis, adenomyosis, premature ovarian insufficiency among many other reproductive health conditions really affect a person's day to day life. Therefore Freja's has been collecting and sharing written stories from across the UK and we have now invited three amazing guests to help us to open up the conversation further. So in this series of chats we want to take a deep dive into the topics we know can be difficult to open up about when it comes to our reproductive health conditions so that we can learn from and inspire each other.

In this first instalment of Open Up the Conversation we are going to be discussing the topic of how to advocate for yourself in the doctor's office. So before I hand over to our guests to introduce themselves I want to quickly mention that nothing discussed here is intended as medical information. This is purely all of the participants sharing their own real experiences so if you are at all worried about your reproductive health you should consult your GP immediately.

If we now just do some introductions very quickly my name is Lauren, I'm a volunteer content writer with Freja's and have been volunteering for about a year now and I'll hand over to Sheree.

[Sheree]

Hello I'm Sheree, I'm 23 and at 15 years old I was diagnosed with premature ovarian insufficiency which some people also call early menopause or premature menopause. I've been on an eight year journey trying to find what HRT, hormone replacement therapy works for me. I have struggled with pretty much the whole list of symptoms and have been suffering with mental health and bodily physical symptoms.

And now I use my platform Life of POI to help educate other people using my story to facilitate conversations around women's health.

[Lauren - Freja's Volunteer]

Thank you Sheree. Jen if you want to go next.

[Jen]

Hi I'm Jen Moore and I'm 35 and I am diagnosed with endometriosis and until my hysterectomy last year I did have adenomyosis and fibroids as well. I was diagnosed in 2022 so just over a few years now but it took me 22 years to get that diagnosis for a variety of reasons. But since my own sort of health struggle I am now an endometriosis and adenomyosis, campaigner, educator and also I do a lot with medical gaslighting and campaigning to finally change that as well.

[Lauren - Freja's Volunteer]

And Rebecca.

[Rebecca]

Hi I'm Rebecca Brown. I am 45 years old and I was diagnosed with fibroids last year, literally last year in April so it's very new to me. I am quite rare in the sense that I was asymptomatic so I haven't come across many women that have had fibroids to the extent that I've had fibroids and not have any symptoms.

I did have symptoms of heavy bleeding. I did think it was due to the coil I was on because that's what I was told. But after putting on weight and experiencing extreme bad debilitating pain it then was discovered that I had fibroids and I had 25 removed in September, very large ones.

And I'm still on the journey because I had have some return and I've also got cysts so I am very new to the world of helping other women. I am a member of the Guidance Suite team run by Dawn Heels and I am very much involved in facilitating and helping with that group and also putting on support events throughout the year. And I'm just very very keen on helping other women now.

If it wasn't for the online platform I wouldn't have been able to advocate the way I have and I've managed to make a lot of change in the sense of speaking to doctors and getting my surgery put forward quite quickly. Diagnosed in April, had surgery in September so pretty fast and that was all down to advocacy so yeah that's a short brief of my story.

[Lauren - Freja's Volunteer]

Amazing. So maybe we can start with another question and maybe Jen can kick us off with this one. Because although this question is for Jen, I’m sure we all have similar experiences. Could you tell us a bit more about your journey to diagnosis and what healthcare professionals you saw and how those interactions kind of looked?

[Jen]

Sure. So like I said it took me 22 years so I will do my best to keep it truncated. But I first experienced symptoms when I was 11 years old.

It was with my first period as well and I mean, it was my first one so I didn't really know what to expect but I definitely didn't expect to be curled up on the floor of my parents' bedroom screaming unable to straighten up passing out from blood loss. It was absolutely horrific. My mum also has endometriosis so she took me straight away to the doctor and I was just told oh she's one of the unlucky ones.

She's just got heavy periods. They're going to settle. She'll be fine.

After a few cycles of them being, if not the same thing, but if not worse then we went back and they said look just put her on the pill and she'll be absolutely fine. That will sort them out. It's the best thing for her.

So I went on the pill very very young and that was that for 22 years pretty much. I stayed on the pill for 22 years with no further investigation as to why I was in so much pain, why I was losing so much blood. Any time I would go to the doctor's not just for period issues but you know at the end when they're like oh is there anything else we can help you with.

I would always say well I'm still struggling you know, and it was still the same thing. It was I mean it went on a spectrum of painful periods are normal to what on earth makes you think you're more special than half of this world’s population and everything in between and then there were the ones who said well you on the pill already that kind of the best thing that we would be able to offer you anyway so you're just going to have to figure out how to get on with that.

And then in lockdown I attribute it a little bit to lockdown boredom that I read a book and it was about your cycle and understanding your period and I realised that because I've been on the pill for such a long long period of time, that I had never experienced my body's natural hormonal cycle so in my infinite wisdom I was like yeah that feels like a great thing to do I'll just come off the pill and see what happens and figure out what it's like and it was like within two to three cycles it was like I had been hit by a truck with symptoms. The symptoms that used to be confined to my period were every single day of the month, I was bed bound. When I could get out of bed I had to use walking sticks because the pain in my legs and my hips they would just give out when I'm walking.

I was having so much nausea I was vomiting from pain I was passing out from pain and blood loss I'd have to crawl from my bed to the bathroom. I gave up my job my work, my career. And yeah it sort of reached a point where I couldn't see a life beyond pain anymore and my mental health was just the lowest I'd ever known it. And so I wrote everything down on two sides of A4 paper and it was still at the time where you couldn't actually get in to see a GP in person so it was all done on my phone.

Then I, the poor poor woman, I didn't even give her a chance to respond to anything at first I just read these two sides of A4 and read it all out and she at the end was just like: okay yeah we need to get you seen because that's not right. So she sent me off for a scan, the ultrasound which is normally the kind of first step that they like to do. And it was honestly one of the most horrific medical experiences that I've had to date and I've had a few, but they couldn't find half of my internal organs and I'm kind of like ramming the probe around and trying to locate things just by brute force and it was absolutely excruciating.

And I got a text message a couple of days later, it was about 5.30 on a Friday evening and it said your ultrasound has come back abnormal you need to contact us as soon as possible. So I tried obviously, but at 5.30PM on a Friday at a GP's isn't really going to happen, so I waited until Monday I rang back and the guy who I'd never spoken to before said yeah it's abnormal but there's no further action needed so there's no endometriosis on it, you're absolutely fine and I was so so distraught because I thought finally somebody was believing me and going to help me get to the bottom of what had basically ruled my life my whole entire adult puberty life.

But I'm really fortunate that my parents were able to step in and said: no you know, go private we’ll sort it but get to the bottom of this because this is ruining in your life. So I went for an MRI privately and that's when I was first diagnosed with endometriosis and adenomyosis. But yeah it's been in terms of the health care professionals that I see I've seen a lot because one thing that happens when you go with any kind of period related symptoms is you get pushed from pillar to post a little bit.

With endometriosis especially it's a full body disease so you can have symptoms anywhere in your body. I have chest pain. I had pains in my legs. I had urinary issues so I was going to urology department I was going to muscular skeletal departments I was going to thoracic departments. So it's a bit, I have seen a lot, I've seen a lot of different medical staff and departments and I think it would be very very easy for me to say they've all been diabolical but that's not actually true.

I have seen some pretty horrific and heard some pretty horrific things but there are also some incredible, incredible clinicians out there who want to help and who are curious and want to do the right thing by their patients. But it ultimately comes down to education because if they're not taught what to look for or what to do and somebody presents with certain symptoms they're going to do what they were taught is the right thing to do. So it would be easy to bash a lot of doctors over my 22 years of being told that it's absolutely normal but that's not the whole picture.

And I would say as well that once you get to diagnosis this as well it doesn't then become super easy. So I was diagnosed in May 2022 and I had my first surgery that month and I thought oh my God amazing this surgeon is like he's really going to help me out. Turns out he missed a whole load of disease and then dismissed me in my post-op by saying that he was the surgeon not me and he's done his job.

But actually it turned out I was at risk of double kidney failure from the disease that he left. So yeah it's an ongoing experience for sure. But yeah I think I just wanted to put out there that it isn't always negative and that there are some amazing amazing clinicians out there.

But I think you don’t go into medicine wanting to make somebody's life more difficult. There's a lot of easier, cheaper, faster ways to do that if that's your goal. But yeah so I tried to keep it short for two decades worth.

But yeah I'd be interested to know from Sheree and anyone else's experience whether they shared that too.

[Sheree]

I mean I completely agree with the whole like ideology that it isn't each doctor and I understand that I mean I've had people say horrific things to me as well. Like the way I was told about my diagnosis was quite horrific. I was 15 years old, never thought about anything to do with sex or relationships like you know wasn't on the start of a career ladder like literally my life hadn't even fully started yet.

And they sat me down and said you're infertile you can't have children. You've got something called premature ovarian failure that it was called at the time. And then did a whole spiel of medical jargon that I had absolutely no idea what they were talking about.

And all of these things that I'm going to potentially suffer with in the future like dementia, osteoporosis, diabetes, heart failure. All of these things were being basically shouted at me. And that's exactly how it felt.

And I kind of just went into this like phase, like a frozen person. And the only two words that were swirling around in my mind were failure and infertile and a week before, bear in mind I hadn't sat my GCSEs yet so I was that young. And a week before we were doing a revision class in science and this is a bit of a detour for me for this whole point but I'll come back to it I promise.

We were sat in silence and we're whizzing through a few one markers really easy thing. And they were like quickly just whizz up put your hands up answer these questions and the teacher says what is a species? And it took about a few minutes for people to shoot their hands up and it would be that the answer was: an organism that can reproduce.

My mind went straight back to that science lesson in that doctor's office. I've just been told I can't reproduce. I've just been told that I'm a failure.

I'm not only thinking, am I even a woman. I'm thinking am I an alien, like I'm a child thinking like I feel so alienated in this moment right now. So going back to the point there are obvious ways of dealing with certain situations that could be massively massively beneficial for the patient. Using diagrams for children, making sure that you are explaining things in a more considerate way.

Yes, it's shit news. Sorry. Yes, it's bad news.

And you're going to feel really bad about it because you're being told something that's life changing but there are different ways to go about it. And so the point that I'm building on from Jen is yes there are bad people, there are bad moments but the people themselves aren't bad. It is a systemic issue.

There is no education. I mean menopause is not taught on the curriculum and it impacts 51% of the population. It's an optional module at university when doctors are being taught to be doctors which is just absolutely mind blowing to me.

Never mind someone who is like, who is so, so young going through something like that. There is a lack of sympathy I would say and the amount of patients going to a singular doctor because there's no funding because there's no resources out there because there's no extra help for NHS doctors. They are swamped with waiting lists and people to see and everyone pretty much they're giving the same news to and so they kind of get blind to this thing that is so personal for one person because there's not enough doctors.

There's not enough funding. There's not enough research. There's not enough education.

So yeah, it definitely is a systemic issue.

[Lauren - Freja's Volunteer]

And I want to to ask Rebecca, is that kind of similar or different to your journey to diagnosis?

[Rebecca]

This is resonating a lot and we had an event yesterday with the Guidance Suite suite and at the end of that session we were speaking to the ladies about what needs to change and exactly what Sheree and Jen have both covered in the sense that it's very important to capture and it explains when you're young we all realised in the room that there are different ages. None of us knew. Some of us were in our 30s, 40s and we never knew anything about fibroids or it wasn't discussed or as you said, that's a really good point, Sheree, menopause.

Why is that not in the curriculum? Because it affects just over half the population and it's something that you can educate young children, not just females, but also if it's taught in primary school age at mixed schools, you've got those young boys that are going to have mothers and sisters and aunties and girlfriends and wives and it affects your partner, it affects your brother. If you're living at home in a household with a male, they're going to see you go through that pain.

Your partner's going to have to understand what you go through with any menstrual issue, condition. It affects people around you, your family, they have to support you, whether it's financially, whether it's emotionally, mentally, physically, you might need them to help you get to the shop etc. It's really, really important that research is done, that a change is made in 2024 and it's astonishing that things like this isn't being taught at child age, it affects so many women and women give life and I'm just totally in shock that something, it's only because now it's happened to me, so I was oblivious, I heard of fibroids previously but I just put it down, I thought it was just cysts that women got. Now going through it myself, it's just opened a whole new world for me in the sense of my health, how it affects other women, being around other women, being exposed to other women's stories and yesterday at the event, I said no one story is worse than another. Some women, they say you had one fibroid removed or you have endometriosis or you have 20 removed, just because you had 20 removed, it does not mean your pain and your suffering, your journey was any more than somebody you had one because someone could have one fibroid that could make them infertile, they can't have children, their mental health is affected.

And then somebody could have 25 like myself, I didn't even know until April and then literally I'm under the knife, it all happened in a rush for me and I've learned, it's almost like I've had a crash course and everything and I didn't have time to even think before I was on that surgery table but that might sound oh my gosh, you've went through all of this but then I'll speak to another lady and they've been suffering for 20 years or like Jen etc. So it's every single story is something that is life changing that affects you in a devastating way and it affects your family and your friends, your job, your employees are affected. There's so many avenues we can say this goes down and it does start from a young age and I think there's so many things that have been implemented in schools now with other subjects and the rules are changing and new things are coming into play.

Why is this not coming into play? They're speaking about menopause more, celebrities are talking about it more but there's so many womb conditions that affect women for years and years and years and that suffering, that lack of knowledge from the medicals I've had the same, I would say it's sort of like 50-50 just like Jen and Sheree said, there's some amazing medical professionals out there.

Unfortunately, I had to go down the private route as well and a lot of women I know where things have changed, we have to say go down a private route but not everyone can afford that and it's just a shame that you have to think to do that in order to get that result. But there were also NHS doctors that were also amazing but then I also had bad experiences with them as well. So it is a mixed bag, there is a lack of education, especially for general practitioners, they're not trained in gynaecology, you can ask to have a doctor that is trained in gynaecology.

A lot of people don't know to do that, a lot of people don't know you can ask to change a doctor. So there's a lot of education that still needs to happen for us but also within that medical field. They need to be educated as well and I think a lot of the time when we're just kind of brushed off and a bit like Jen and even the way that Sheree was given her diagnosis and just the way that things are brushed off, it's the lack of education internally.

So the education needs to start within the medical professionals, they need to have ongoing training in this area and other areas but we're talking about this particular area. And also targeting the children from a young age, imagine if we knew about what signs to look for or we knew what to do, we could have prevented some things, not everything, but if I had known I could have prevented having a major, major abdominal surgery. So I agree in the sense that there's good and bad in the sense of the medical professionals' experiences and it is easy to talk about the negative but there are positives, there are doctors out there that are really willing to help and go the extra mile and I've been fortunate to have that.

But the second cause of hysterectomies is fibroids and again endometriosis affects so many women, adenomyosis, there's so many conditions that are just overlooked and I don't understand why because women are the givers of life. So why is it not, why is the light not shone on and why is there not more change happening because, you know, it is devastating. So yeah, that's my input on that particular question.

[Lauren - Freja's Volunteer]

And I know Rebecca, you said that, you know, you kind of got diagnosed in April, went for surgery in September but I'm just curious, was there a point in that at all where you thought to yourself, I'm going to really have to advocate for myself here?

[Rebecca]

Thousand percent. What happened, it was with the coil that actually flagged up that I had fibroids so I just randomly just had pain out of nowhere and it didn't feel right and it felt in that area. And I went to the doctors in pain could hardly walk and they just said, Oh, we can't look at it.

We haven't got the tools to reach. We can't see the wires. And then, you know, from that, they told us go to a sexual health clinic, the sexual health clinic have the scans, they're able to look for your coil and remove it.

They couldn't see it. There was a black mass on the screen. And just like Jen, even though I got diagnosed in April, my story I could talk for hours, but just to, you know, cut it quite short.

When I went to sexual health clinic to get my coil removed, they couldn't remove it because the fibroid was so large it pushed it and embedded it and they couldn't see it on the screen. So I had to have a transvaginal. And when I had the transvaginal, they were more focused on seeing if they could get the coil out rather than the fibroid.

So they just went, Oh, you've got a 10 centimetre fibroid. And it's only because of, you know, Dawn Heels and all the information she puts out there. I knew that 10 centimetres was a large size, but the sonographer didn't make it sound as if that was an issue.

They were just like, Oh, the coil is still in there. My doctor said I would have to wait till February this year. So this is April last year, 10 months for me to see a gynaecologist to get the coil removed.

And imagine, I'm in so much pain, the fibroids have grown even bigger and it's the coils pressing on it. So I went to see a private consultant. He was a consultant that doubled up as an NHS doctor.

I felt more comfortable with this because I thought, you know, I've never gone private before. At least if it's, you know, an NHS doctor, you've got that kind of reputation behind their name. I found him searching online.

NHS have an amazing website, by the way, where you can type in the area that you live in. You can go to a subject, you know, by alphabetical order. And then you can read up on each doctor to see who you feel, you know, comfortable with.

I had that appointment. It changed my life. So I had to advocate because I was trying with the doctors.

I was making loads of phone calls, but all they kept saying was the earliest appointment is February next year, just to get the coil removed. They weren't even focused on the fibroids. So I went to see the private consultant and it was a 45 minute appointment.

He changed my life. He removed the coil free of charge. He didn't charge me for it.

He did a scan free of charge. I would have left that appointment with at least a £1,500 bill and I just paid £250 for the initial 45 minutes. I'm not saying everybody's going to get that treatment, but he took, you know, he literally looked at my case and was like, you cannot suffer like this.

And because of him, he wrote to my doctor, I said there was a rapid expansion because we had a time frame from when I had my smear 2020 to 2024. So when I had my smear, they would have been able to see the wire, the coil wires. So we had a little window, small window for years.

Always had heavy periods, seven day periods, triple pads, the tena lady pads. You know, I would, yeah, I didn't have pain. So I didn't think I had it.

I just thought, oh, it's just a heavy period because I was always told coils give heavy periods. I had no pain. I'd put on weight, but I thought it's because I was working from home, you know, work from home, we get the takeaways.

That's all I thought. And it's only now there's little other symptoms. I'm thinking, oh, I overlooked that, overlooked this.

And this is why it's important to, you know, have that education. Because if you're not suffering yourself, I was, you know, I was following my friend's page, I was following things and I would see it in my face, but I was like, oh, I haven't got painful periods. Oh, I haven't got a belly sticking out like that.

I haven't. I've put on weight. So sometimes it can stare you in the face.

But because you're not educated, you're not thinking to do anything because, again, the doctors and the medical professionals, I believe that when we have our smear, we should have a transvaginal. Every three years, transvaginal scan so that you're having your smear and you're getting checked to see if there's any fibroids there. Because as much as there's a strain on the NHS, when I think about how many appointments I had in a short space of times, how many MRIs I had, scans, so many appointments, that's a strain on the NHS.

I wouldn't have needed to do that if my fibroids were caught at an earlier stage. So I had to make a lot of phone calls. Fortunately, my workplace gave me, you know, time off and were flexible.

Not everybody has that. You've got to sit on the phone for hours on end listening to, you know, music waiting on hold. You get through.

Somebody's not there. You've got to call back again. I couldn't have done that if I was having to work all the time or I was a mother with three children or I had to go to a school run.

People don't understand that you have to make phone calls. You have to wait. You have to chase up appointments.

Sometimes your appointment gets cancelled and it's not for another two, three months. So I learned really quickly to have to keep, luckily, I'm a person that is quite outspoken and I, you know, don't take no for an answer. And now I'm helping other women to do that because not many women, they're not outspoken.

They feel that they have to just say, you know, listen to what the doctor says. But actually, I found on my journey that me speaking up more, asking questions, knowing the names of my fibroids, knowing what to ask, where's the locations. Ask for cancellation.

Is there any cancellations to the point that they get used to knowing your name? You know, when you call the hospital because they like, oh, yeah, I've had so many people say, I'll call you back if I get an appointment. That's because I've called back so many times.

Not everybody has the time to do that, but when you just need to, you know, make a change and you're desperate, you just try anything. And I think that's what, I think most importantly, what I'd wanna get across today is that you have every right to keep calling.

You have every right to ask your doctor for a scan. You have every right to ask for a blood test. I asked for blood tests until the cows came home.

I asked for tests that they didn't even mention to me, but I found these things out myself. I had to go to A&E a number of times. A&E, I asked them to print out my results.

When I had my surgery, I took a picture of the screen of all my surgery notes because they didn't know how to print it out. Just ask the questions. When I had my MRI, the doctor talked me through it.

I took a video so I could share that with other women. Don't just sit in a room, let them tell you what they want to tell you, and then you leave confused. That is your time to ask your questions about your body and what's gonna be done to your body.

And yeah, I've just learned to build up a relationship with my doctors as well. So you go back regularly, you ask for the same doctor, build up a relationship with your doctor so that they then start doing things for you, like, you know, ordering things for you or, you know, going the extra mile. But if you're not going to see the same doctor, you don't have that relationship.

So I think that's also really important in advocacy, just to, you know, speak up, don't take no for an answer, and build a relationship up with your doctors. 

[Lauren - Freja’s Volunteer]

And you made a good point there, Rebecca, as well, saying, some people might not feel comfortable or they might be a bit hesitant. You know, not everyone knows straight away, how to advocate for themselves.

I'm just curious because, Sheree, I know that you were so young when you first went to the doctor and I can imagine that's very intimidating, especially for a 15-year-old. But you had some help, didn't you? Some support around you. I wondered if you could tell us a bit about that.

[Sheree]

Yeah, so I actually started going to the doctors at about 12 years old for multiple different things. So I had really bad joint pain, chronic headaches, couldn't sleep. And as a teenager, like 13, you're meant to be sleeping bloody every hour of the day.

You're meant to be, you know, being so active and going out and playing out and having fun. I was so lethargic, like, couldn't concentrate in class. Like, all of these different things I went to the doctors for.

You know, I broke six bones in the space of seven months. And I went to the doctors each time. No one asked for a DEXA scan, so a bone density scan.

No one thought to say, oh, well, you actually came in for chronic headaches. You actually have come in for insomnia. You've actually come in for all of these different things.

And until I actually mentioned that I hadn't started my period to my mum, was when we both were like, right, this is a bit concerning just because all of my friends had started their periods. And I was like, feeling insecure that I hadn't started my period. Because it's such a celebratory kind of right of passage for women when they start their periods.

And so like, I felt like I was missing out on something. And so I kept going to my mum and being like, I've got all of these other issues. I'm also sweating every single night where the bedsheets are wet through.

All of these things, and I haven't started my periods. And my mum's like, right, we'll go back. So we went back.

So I went at 12, went at 13, 14, multiple times in the year. At 14, my mum was like, we need answers. Like all of these things can't be right.

They were like, she's too young to start worrying about it. She's too young, too young, too young. They just threw that at us all the time.

Like too young to worry about anything. It will come, don't worry, just wait, blah, blah, blah. And at 15, I literally remember turning 15 and the day after I said to my mum, now I'm 15, can we go back? Because I was like, now I'm a bit older, maybe they'll take me more seriously.

I was 15 still, still a baby. But I was like, maybe they'll take me more seriously now I'm one year older. Every year it felt like I was doing that.

And then my mum was like, do you know what, Sheree? Enough is enough. We are not leaving that GP surgery until we have you an appointment with someone who knows what the hell that they are talking about. And so that is basically what my mum did.

So I was, obviously I never knew anything really, but my mum was like soaking in the information like a sponge and like teaching me things, reading things like on the side and then teaching me in small bites of like, this could be happening. Like, let's find this out together. Like, let's learn about our bodies.

My mum was a very hippie mum and was always naked as a child and everything. So we were always like, you know, talking about vaginas and vulvas and always talking about boobs and things like that. So it was very open, hippie lifestyle growing up.

So my mum was always very on it with things like that. She, yeah, she like propelled the conversation forward in the doctor's surgery. So when we did get a specialist appointment, well, a gynaecology appointment, they were then like basically, my mum had like come with like a big folder of notes with like all the appointments from like when I was 12 all the way to present day, everything, all the results, all of her Google stuff.

And she was like amazing. But also was like the support system that I needed when I couldn't listen to things that the doctors were telling me because it was just impacting my mental health so badly. Yeah, she was just like that support.

She advocated for me and she taught me to be a strong woman. And so, yeah, so now I want to take the lessons that I've learned from my mum and from all the other strong women online. Like there's so many amazing women online advocating for us and for other people who have menstrual issues.

And it is so important to build this community, build each other up. Because like Rebecca was saying, not everyone is strong enough to advocate for themselves. And that is okay.

You don't need to be strong enough. You just need to have a support system that will help you through the process, because it is hard. There are some lucky ones who do end up getting diagnosed early or whatever and things have been caught, but you do need that support system, whether that is online friends or whether that is your mum or your sister or brother or son, daughter, whatever that relationship is.

Like people will help you. If you start telling your story, you know, people will help you. So yeah.

[Lauren - Freja’s Volunteer]

I think that's right, Sheree. Like as much as we are saying like, you have to advocate for yourself, and we really want you to advocate. Like it can be exhausting. it is kind of never-ending. But Rebecca, I know that you raised your hand?

[Rebecca]

Yeah just quickly, Jen probably has something to add as well, but just quickly. Yeah, you are so right about having that support system. And yeah, not everybody, you know, can be outspoken.

So, you know, you can take someone with you to appointments. So Dawn Heels of the Guidance Suite, she always advises that take someone with you to that appointment. Because sometimes when you're given news, you just totally blank out.

And also it's a lot of information. It is very overwhelming. I love what Sheree said about it's okay.

It's okay to not be someone that talks and asks questions. And the most important thing is to ask those questions. And to, you know, I want people to understand that it is okay to ask those questions.

Because sometimes, you know, you think, oh, it's a doctor, I shouldn't question them. I've questioned so many things that I've actually got results from them. And sometimes they also make errors.

So even though, you know, we know that they're in their position, they don't know everything. They can't be educated in every single, you know, imagine all the conditions that are out there, you know, so, you know, it's okay to ask questions. It's okay to question things.

It's okay to, when I look back at my notes, I see things that wasn't discussed in my appointment. I call up and I say, can I have an appointment to discuss this area in my notes that wasn't discussed with me at the meeting? And sometimes it's something just to put my mind at rest, because I'm worried if I see something, I saw something that said partially distended bladder on my note, and I'm like, and then now I'm panicking, thinking, does it mean I can't hold my wee, you know? And if it's in your notes, but then nobody's discussed it with you, you could be worried unnecessarily. And mental health is a massive part of this.

You know, I had to have, you know, therapy done after my surgery. And it, you know, as Sheree and Jen have both, you know, said, it affects you in so many different ways. And it's just a shame that, you know, it is kind of like not talked about enough and not discussed enough.

But thank God for, you know, 2024, the way the technology is now, thank God for people that are open enough to talk about things and to share things. I just wanted to ask Sheree one question in regards to talking about support. What was the support like from your peers at that age? Did you feel like you could share with them what you were going through, and also your teachers? Because, you know, as adults, we can share with our employees and employers, and there's a lot of employee assistance programmes in now.

And there's a bit more talk about helping women in the workplace now. But back then, you know, Jen and Sheree, because you've been suffering for quite a long time, what was your employees like? And also, what was it like at school, your teachers and your peers? If it's okay to ask that, Lauren. 

[Lauren - Freja’s Volunteer]

Yeah, of course.

[Sheree]

I'll just be quick. Well, I kept my diagnosis a secret. I was very ashamed, very embarrassed.

There was never any positivity spoken about my body or the function of my body. And so I'm also an oldest sibling, and I felt like I wasn't a role model. Like I didn't tell any of my siblings.

It was literally just me and my mum and dad who knew about my diagnosis, like basically didn't tell anyone at all. Until COVID, really. And because I just threw myself into education, wanting to distract myself going out, you know, the classic teenager malarkey.

And so I just distracted myself. But then in COVID, when obviously the whole world slowed down and no one could go into schools, no one could go in, all my exams were cancelled, everything was cancelled, just like everything else was. It was the first time I actually grieved my genetics and I grieved parts of my like sexuality and like really got to, you know, sort out what my feelings were towards my gender and towards my sexuality and towards my body and all of these things.

And so the first time I ever told anyone was when I put my first post out on social media. I put my post out and I threw my phone across the room, scared that everyone would just think that I'm a weirdo, alien person. And about two hours later when I could bear to look at my phone because I was so terrified that everyone would think I'm an idiot or stupid or whatever I thought, the reaction was just amazing.

And people were supportive and even boys in the class that used to like kind of pick on me a little bit was kind of like, oh, well, that's like interesting or like had questions or were like, or say you'd never know or all of these things and was very supportive. And then I started to realize, oh my God, I'm getting like direct messages off other 15 year olds who are now looking at me as a 19 year old being like, wow, if I'd have had someone on social media talking about this, honestly, I would have saved an absolute bank in therapy. And yeah, I would have just been like so much kinder to myself and yeah.

So yeah, basically I didn't have any support because I didn't ask for the support. So again, like advocating for yourself is super hard. Like you are taught as a society that women are mothers, like that is it.

Like you are meant to have babies and that is everything. And because I couldn't, I thought, well, I've already failed. Well, what's the point in telling anyone because no one's going to want to fancy me.

So yes, and it's just also such an impressionable time. And then even when I did tell, sorry, I'm now rambling, but even when I did tell people at university, I was in my Master's and I told them, because basically big, big, long story short, it's so hard when all three of us have such big stories to like condense it down. But anyway, I was struggling really badly with my HRT.

I was put on a trial. I was hospitalised. And they thought that I needed a hysterectomy after they were telling me that I was having a miscarriage and all of this stuff.

And I was like, that's impossible because I'm also a lesbian and I'm infertile. So that's literally impossible. And yeah, so after that, I wanted like some extension or like some help on my assessments.

Literally just got out of hospital a week earlier, had an assessment due week after that. And I was like, please give me an extension. And even with medical notes and my diagnosis letter, I was not given an extension because it was not deemed as like a, like it wasn't deemed as a condition that like can impact your studies basically.

So I still had to submit my work. I mean, I smashed it obviously, but I didn't get any help on that. So yeah, that needs to change big time.

Sorry, Jen. 

[Jen]

Don't apologise. I'm like in awe of you. I would say mine is very, very similar in that. So I didn't get my diagnosis young, although I suffered a lot young. But because I was constantly being told, no, this is normal, this is normal, this is normal, this is normal.

I then started to internalise that. And so I was like, oh, okay. So everybody else around me is experiencing the exact same thing that I am.

What's wrong with me? Why am I weak? Why can't I like live like this? Why, what is wrong with me? And I started to think there was something wrong in my head rather than something wrong in my body. And I think that lasted for an exceptionally long time. And then I went to university.

Again, no support. I would have to take spare clothes with me everywhere I went because of blood loss, pain. I was on so much pain relief.

Yeah, just again, no support. I wouldn't talk about it because I thought everybody else was experiencing the same thing. So yeah, I didn't really talk about it.

I just thought that was what happened and what went on. And because I was on the pill as well for that whole entire time, it was quite confined to just my period. So I was like, oh, okay.

It didn't strike me as like, no, this is absolutely out of the question, not normal until I came off the pill and it was every single day. And I was like, well, I know people aren't going through this every day. So yeah, for me, it wasn't really until I met my husband actually.

And he was quite possibly the biggest advocate. He was the biggest advocate and support of my health alongside my parents who are the reason that I had my surgeries and was able to access specialists because especially with endometriosis, they are very few and far between. And unfortunately, a lot of them are private.

That doesn't mean all private is good, by the way. My first surgeon was a butcher and he was private. But yeah, my husband is constantly the one that reminds me, you know your body better than anyone else.

And if you want a second opinion, we'll get it. If you need this, we'll do it. Like he's been absolutely incredible.

But yeah, in terms of when I was younger, I think my mum was incredible because she could see I was suffering, but there was just nothing that anybody was doing for us. But also it was normal for her because she had endometriosis. So her periods were exceptionally bad, exceptionally heavy.

So it was normal for her. So it was more with my mum. She was an amazing support in terms of getting through it.

You know, anything I needed, it would be there. You know, the stack of towels, the constant loads of washing, it was all done and no questions asked. But it was more about getting through the cycle, literally.

It wasn't so much in terms of what you would hope as a child in terms of school or then employment support or anything like that. There was absolutely nothing. And I would say if you feel like you haven't got any support, these diseases and conditions and all these things, they're incredibly, incredibly clever at making you feel like you're alone and that you're isolated.

And I think if you take endo as just one example, 190 million women in the world or those assigned female birth in the world at least have endometriosis. You are not alone. And yet this disease makes you feel like you are.

And it is the most isolating place that can take you to some really dark places. But there are so many of us that want to help each other, want to lift each other up, want to be there when you just need to rant about how shit it can be. And the place that I found that was online.

And I think a lot of the medical professionals can sometimes be a little bit hard on social media advocates and online forums. I mean, my first surgeon told me to be careful online. There are a lot of angry women on there.

So, and I was kind of a bit like, well, yeah, we're angry. But when I found that community online, my life changed completely. And in fact, it was social media that saved my organs and quite possibly my life.

In that, after my first surgery, I was told it was done fine. They'd done their job. And it was somebody online that I was speaking to who said, uh-uh, get yourself a second opinion with somebody who really knows what they're talking about.

And that's when they saved my organs. So, well, some of them. But yeah, so I would say support comes in many, many, many different guises.

Not one size fits all either, but it does exist somewhere. You just might have to look for it a little bit. 

[Lauren - Freja’s Volunteer]

That's so, interesting like hearing all three of you, like you all have different conditions, but there's so many similarities in what you're saying.

It's so good to bring everyone together and try and learn from each other. But I did want to just ask a kind of final question for everyone. So thinking, going back to thinking about advocating for yourself in the doctor's office, you've all said some amazing tips for people that might be at the start of their journey, might be kind of halfway through their journey or not satisfied with whatever treatment they've been given.

But can you think about maybe one thing that either you did to advocate for yourself that you would hope others did, or maybe even something that you wish you'd done or even wish you'd done sooner? I'll start with Sheree because you're nodding along. So we'll go with you first. 

[Sheree]

I would honestly say my number one thing. And I know that Jen has mentioned this, but believe in yourself and believe that you're not going crazy. You know your body more than anyone in the world. Like regardless of what PhD, what degree, what letters they've got after their name on an email, regardless of everything about that, you live in your body every single day.

You are nurturing your own body. So if one day is different to another, even if you think it's a small thing or you're saying that it doesn't matter, check it out. Always check things out because the amount of people who I know personally who have, you know, not checked out lumps or ignored bleeding or not bleeding or, you know, things that are abnormal for them, not abnormal for you and you and everyone, abnormal for them or just you, you just need to believe that you know your body more than anyone.

So that's the knowledge that you take into the doctor's office. You don't need to know all the studies. You don't need to know all the treatments, the symptoms.

You just need to know your body. And that's the only thing that you need to take in a notes app is what's wrong with you. 

[Jen]

And just to build on that as well, the best doctors that I've ever seen have acknowledged that too.

They say to me, you're the expert. You tell me like what's going on. I can then recommend stuff and tell you what I can do for you, but you know your body better than I ever will.

But yeah, like if a doctor doesn't say that or makes you feel like that that isn't the case, major red flag. And that leads on to my tip, if I'm all right to go next, which is you can walk away. It's your body.

It's your body and nobody gets to operate on you unless you consent to it, unless you fully understand it and you fully agree to it. And if you don't like what's being said to you, then walk away, find another doctor. Know what is the right sort of treatment pathway, know what's recommended, educate yourself in that way.

But then also have enough faith in yourself to put your health and your body and your future ahead of any ego in any room and walk away. Yeah, that would be mine. 

[Lauren - Freja’s Volunteer]

And Rebecca, I wanted to ask you as well, but there's one thing you said earlier that I think is really helpful.

And that would be asking for your medical notes or you said in your case, you'd taken a picture of your medical notes and I think that that is a really amazing tip for people. Yeah, is there anything else you wanted to add? 

[Rebecca]

Definitely, definitely echo what Sheree and Jen have said a hundred percent. I'm literally shaking my head like yes, yes, yes, yes.

For me, I would say exactly what they both said as well, but do not be afraid. So we've got, don't, you know, we've got, listen to your body, you know your body. We've got from Jen, you can walk away.

And my one is, you can never ask enough questions. So ask the questions because you can get given all of this information and you don't understand what's being told to you. Also, what's been a game changer for me is I did a lot of research.

So you'll get a lot of things online and you'll Google things and you'll, but then for me, what I did was I got my information from all different sources and then did what worked best for me. So you'll get people say, don't eat this or change your diet, do what works for you, what makes you feel comfortable, what makes you feel like you're looking after your body the best way that you can. So my research was, I purchased books, I spoke to people that lived through it, I followed support groups, I looked online, I looked up case studies.

So, and then when you see information that is repeating itself in all those different forms, you then think there must be some truth in this because I've read this, I've spoken to someone that said this, my doctor said this, I even asked my doctor questions. And if I'm getting the same thing from five different avenues, nine times out of 10, it's gonna be true or it's gonna resonate to me that I feel comfortable doing it or making that change or, you know, so ask questions, do your research, and yes, medical notes, do not be afraid because once you're in that appointment, you're gonna kick yourself when you come out because you can't remember what was said. I also asked the doctor, is it okay for me to record this meeting? So I just press record on my phone and then when I leave, there's some things that I missed because, you know, you're overwhelmed or you've missed what they've said.

Also, if they use a term that you don't understand, don't be afraid to say, sorry, what does that term mean? Or write that term down and go and look it up once you've left. Sometimes they give you names of conditions or of cysts, et cetera, look it up afterwards so that you're clear on it. So ask questions, ask questions, and just don't be afraid, just don't be afraid.

[Lauren - Freja’s Volunteer]

Amazing, thank you. Well, thank you all for this conversation. It has been amazing and I want to thank you all for your time and I'm sure that anyone listening to this is gonna pick up a lot of helpful tips.

So yeah, thank you all. Thank you, Lauren. Thank you.