Liv

Brief Outline:

Liv is 14. She started her periods when she was 10, during the COVID lockdown. They were heavy and painful immediately, and from the start she and her mum had a strong sense that something was not right. This was partly drawing on her family experiences with endometriosis and PCOS (Polycystic Ovary Syndrome). They saw a GP fairly early on in her period journey because of this. Liv has seen a number of healthcare professionals in trying to find effective treatments for her period pain. She has had experiences of feeling dismissed, but also experience of feeling heard and supported. She reflects that explaining reasoning behind decisions and offering options with enough supporting information for people to make choices can help, but does not always happen. She has tried lots of things for her period bleeding and pain, none of which are wholly effective. She has had some difficult side effects from hormonal contraception, and now has a hormone coil with hormonal tablets. She needs to use strong painkillers with these, but is only allowed to take them for three days, which means she finds the other days really difficult. She has now had an MRI scan and told she has signs of endometriosis and adenomyosis, which she found personally validating for her pain and experiences. She wonders if she also has PCOS, but understands that she can’t be diagnosed with this yet, or have treatment for this. Knowing about her diagnoses has helped her negotiate support systems in school, like breaks and exam support. She would like periods and period pain to be something that everyone can talk about freely, to reduce stigma and help people feel able to access healthcare advice and support.

Liv started her periods when she was 10. She recalls hearing how periods meant becoming a woman and something to look forward to, but this didn’t tally with her experience when she started.

I think it was... I don’t think it would have been as bad if I w... if I wasn’t so young, but I was... I was 10, and even though mum was eight when she got her period, and I was... I was a bit older, still seemed that... seemed something and feeling not right at 10, and not being able to really talk to anyone about... anyone about it, it was... it was, yeah, it didn’t feel very nice.

No, and I’m... I’m... yeah, I can... I can, I really hear.

Yeah.

And, so you started your period before the per... the period talk.

Yeah.

But had you known about periods from—?

Yes, I’ve grown up with it, and from... from my family and from being told you’re gonna get this when you’re older, and I think at school they’d kind of said to the older girls, like: “It’s when you become a woman, and it’s like something you should look forward to,” and then getting a period and being like: ‘I don’t...’ like, you don’t want it, ‘I... I wanna go back, I don’t want it anymore, I don’t wanna be a woman, I wanna be young again and not have my period.’ But yeah, it... yeah, the period talk didn’t really do much other than let me know that everyone else had their period as well.

Yeah, so actually that’s one of the things that I’m really interested in hearing about. Well, I’m interested in all of it, but those... the experience of thinking about what you’ve learnt and how that then translated into the reality of having periods, I think, I’ve been hearing quite a lot about that.

Yeah.

So can you re... so your recollection of that talk was that... that they... there was this kinda story that it was becoming a woman—

Yeah.

—and something to look forward?

Yeah, I think that’s ridiculous.

And was that a sense that you had amongst your friends, that it was gonna be cool, and who was gonna get their...?

Everyone got really excited when they got their periods for the first time. And I didn’t... when I got to secondary school, some of my friends still hadn’t got their period, and I didn’t... ev... they’d ask me about: “Like, what... what’s a period like? Like... like what’s it like?” and I... I couldn’t tell them because it’d scare them and I didn’t want to make them feel like that when they were waiting to get it, like everyone else was, and... yeah. But quite a lot of us got it in primary school, and it was kind of a thing, like a very exciting thing, like: ‘ooh, I can tell my friends that I got my period now.’

Liv loves sport, but has had to give up on clubs and team sports, because her period pain was making it impossible to attend sessions, but she made sure she can keep going with scout leading.

I played netball for a league, and I was in a swimming team in my village... and not in my village, in a vil... a few villages over, and I had to quit them both because doing all my GCSEs and my coursework, and doing sports, and being affected by my period, I was missing so many of the club days, that there was kind of not... not really a point doing it anymore. And kind of sport is one of the main things in my life, and I can only do kind of workouts and running at home now, because the days I can’t do it, at least it’s not my parents paying for something that I’m not going to, so I packed it. I have only... and I’m only able to go to one club now, and that’s... that’s my young leader thing, because I’m... I’ve been in it for 10 years and I’m not... I’m not leaving it.

Liv felt she was taught more about the science of periods, than what they would feel like. She has done her own research and tends to look for other people’s stories because she finds comparing experience helpful and validating.

It wasn’t anything about the pain, it was just about why you bleed, when you bleed, what your cycle is, and why it happens, and that’s it. It was more the science of it than what you’re gonna feel and what you should expect, or like why... yeah, and what... why, what happens, happens, and... and... but nothing about the pain or conditions that come with it or things that can go wrong that you need to see a doctor for, or... that it was never... there was never a thing of: ‘ooh, yeah, if you... if you bleed this amount and this amount, or if you have to change your pad once every two hours, it... there’s... something’s wrong and you need to go talk to your doctor.’

Yeah.  Have you looked for information? Have you Googled period pain? Have you Googled these other conditions? What... do you... where have you kind of looked for information?

I’ve done a lot of research, probably more than I should have before seeing a... seeing healthcare, but I do know quite a lot about all three of them and that I know what I could... I know what to expect, I know what possibilities there are of things that they could impact, and things like that, and it’s kind of... kind of accepted that kind of things are going to change and there’s gonna be things that I’m not able to do when I’m older and there’s... there’s gonna be problems in the future, but that I... I know that, and that I know that it’s coming, and I know that it’s gonna affect things.

OK. And where have you tended to look? What information have you found helpful? Where’ve you looked for information?

I’ve mostly looked on like the NHS of kinda symptoms, and things to expect, and things to do, and kind of I know why... why what happens, happens, and what... what’s happening that creates all of the symptoms.

OK. When you’re looking for information online, what are the things that you kinda look for? Are there things that you find helpful, or that you look out for?

I kinda look for other people’s stories. And... and I was saying to Mum on the way here that there was a thing that the... the BBC did about a video of three women that told their stories about endometriosis and what they were comparing their pain to, and that some people compare it to a heart attack, some people compare it to contractions when in childbirth, some people just compare it to a stabbing pain, and it’s kinda different for everyone, but kind of what other people have experienced is really helpful to kind of, again, validate your own, like... like: ‘ooh, yeah, that’s what I’ve got,’ like, ‘oh, that happens to me as well.’

Liv has been diagnosed with endometriosis. She tells her friends about it because in school, she felt it was ‘brushed over’ with advice to look it up if she wanted more information.

I do talk to my friends about it, and I do tell them about it, because it is something to look out for if... even if they’re... someone in their family has had it, or I think... I don’t think within families it’s even talked about, like: “Ooh, yeah, I’ve got endometriosis, but it’s not... it’s not too bad,” but you could have it as well. It’s... it’s not talked about at all in schools, and even more in families, it’s not really talked about either. But when we do have PSHE about periods, or we do something called ‘FameLab’, in Science, in Year 9, and you pick a topic to talk about, it’s like even when people were doing things on periods and researching it, endometriosis came up, and like: “Ooh, you could have endometriosis,” but they didn’t explain what it was, and no-one knows what it is, and the effects it can have, the pain people feel when they have it, how rare it is, and when to... what... like what to look for if you have it or not. And yeah, even when it is very briefly brushed on, people don’t explain it, and like they just say, “Oh, yeah, it... it’s a condition, like if you wanna know about it, Google it,” or something, but it’s not talked about. And I... I never... if Mum hadn’t brought it up that she has it, I wouldn’t know what it was, and I don’t think that’s right that people don’t know about it.

Liv recalls her experience in A and E with reflux as a child when a doctor disagreed with her about her pain score. She thinks doctors should believe what people say about pain.

And did anybody ever ask you to do a kinda nought to 10 or a smiley face scale?

Yes.

Do you have any thoughts on that?

I think they’re awful, because saying... it was a completely different thing, but I had acid reflux and we had to go to A&E for it, and I think I was like, seven, eight, and having that emoji line from one to 10 and saying that you feel like you’re a 10, but them saying, “Actually, you can’t be a 10 ’cause you’re not crying.” Well, that’s... that’s not how it works, I’m afraid, but... But them saying like: “How would you feel on a scale of one to 10?” and you saying, “maybe 10, 11, 12,” and them going: “Well, it doesn’t look like it,” ’cause everyone experiences it differently. Like, I’ve been living with it for four years now, I’m not gonna cry... I’m not gonna cry every time I get cramp because that’ll be always. And it’s like you... you get used to it enough for it not to be... You kind of have to remember when you first got the pain, to remember what the original pain feels like, because then you know that if it gets... if you feel it worse, it’s on top of that original, not just you’re feeling that original. ’cause if you... if you do get used to it, it... you can’t... it doesn’t hurt as much anymore, ’cause your head tells you... like, you get used to it.

Mm.

But yeah, it’s... yeah, it’s... I don’t think they should do it, I don’t think they should use it, ’cause everyone experiences it differently, and that you should just take it at face value if they say, “On a scale of one to 10?” and I feel... feel like 11, ’cause you... it’s better to kind of believe them than say, “Right, you’re... you’re being dramatic, it’s... it’s nothing,” than kind of... yeah.

Liv had seen a number of doctors, before she saw a specialist who took the time to explain. This was transformative, and she would like to be able to see the doctor again and thank her.

So, then we went to the hospital so many times over the next couple of years, and it was... and I think it was... the worst part was that they were all ladies and it was kind of... they probably didn’t have any conditions that made their periods worse, and they probably thought that I was just like blowing it out of proportion and that I was just saying it because I didn’t like it, like everyone else does. But yeah, they were just all... they were all 10- 15-minute conversations: “Nothing we can do, try this pill, if it doesn’t work, come back,” and kind of waiting months between appointments, even if there was something wrong.

And then finally going back and seeing... I can’t remember what her name was, but I really wanna see her again, just to thank her for what she’s done. But spending an hour and a half, and actually getting answers, getting probably more answers in that hour and a half than I had over the... over the four years from one person who actually listened to me.

 I think she’d been... I think she hadn’t been in health care for, I think, 10 or 15 years, and in... as a... in... like as a gynaecologist, and she just... she just listened and just kind of asked questions and said, “Right, could be this, have you tried this? What have you been told? What have you not been told?” and just giving us options and kind of hope that there would be something. And I think that was the first hospital appointment I left and I didn’t feel like crying ’cause there was nothing that came out of it.

And then... but yeah, it’s just...it’s just... was just disappointing that they were all ladies, and it was only one... the first person was... was a man who... like, who just said that it was nothing and that I was a teenage girl who just wanted a bit of attention because of her period, and just then ladies saying the same thing of: “It’s just a period, it’s normal, there’s nothing... like, nothing special that we can do,” and then finally someone saying, actually it is, and there is something wrong.

Because in... in that appointment with that... the final... like the final hospital appointment, she... well, she went over everything, from what I’d already heard, to what I’d never heard, to things that doctors had done that they shouldn’t have, because there was no way it would have gotten... gotten you anywhere, and kind of saying that... One of the things... one of the biggest things we came across was wanting... like, requesting a laparoscopy, because that would have given a better view of what was going on internally, but they kind of... we just got told no, but we didn’t get told the reason why they said no. And the reason was actually because they don’t do them anymore and it’s kind of out of fashion, because they’re... like, the maj... the majority of the time, if you’re younger than 18, the results, there’s no results, because they... they can’t really see anything. And I think they should just... I think it’d be better if they just explained more. And because the younger you are, the less you know about all the kinds of things, and yeah, I just think you should explain all the possibilities, and not just the... what you think at the moment it could currently be.

And do you feel like your... from your observations and your experience, do you feel like your age played a part in how those-

 

Yes, yeah.

—or did your age get used in explanations to you, is that something that was part of it?

I think... I think the... it was more: ‘oh, yeah, it could be this, but you’re too young,’ ’cause it... yeah, it could be rare, but that doesn’t mean it’s impossible, ’cause even though it is rare, it could be one of the rare moments that it is actually happening, because it is rare in young child... in young girls to have a diagnosis at their age, but it’s not impossible, and if it’s not impossible, it should be one of the options for testing. ’cause a... again, I think if I had been 18 to 20, it would have been quicker because it would have been: actually, could be this, ’cause you’re not too young, could be this, because you’re the right age for symptoms to start... start showing. But yeah, I think there’s a lot of... and it’s not... if it’s not common, it’s not happening, kinda thing.

Liv was bleeding every day for 13 weeks. She explained this almost started to feel normal in the time she was waiting to see a specialist, and does not think the NHS treats period problems as urgent.

I think it’s... it’s kinda disappointing that it took for me to nearly become... for... it... really ill for the rest of my life, for someone to kind of say that something’s not right. It took for me to bleed for 13 weeks without a break for someone to go: “Actually, that... that’s not OK.” And when I mentioned it to my friends: “Oh, yeah, I’ve been on my period for seven, eight weeks,” the kind of... the... the like the horror that like the... the hor... the horrified look on their face was kind of why isn’t that something that and like medical... the people in the medical field feel when I say that, like, I’ve been on my period for this long, why isn’t that a kinda immediate, like, alarm bells that something’s not right?

And your reaction was that that... So, did you go a couple of times in that 13-week bleed?

Yeah, I kind of... I kind of got used to it, and I kind of... it kind of became something like the normal in my life, and I kind of, not forgot about it, but kind of, it just grow... grew used to it, and ’cause it takes so long to get an appointment with the NHS, periods aren’t seen as important enough to be kind of like fast-tracked to get an appointment, so I had to wait three, four months till my appointment, and I was just blee... like, it was just having it for every week until the appointment.

Liv found it was hard needing to wait ‘months’ between appointments with different specialists when she was trying different medicines to see if they might help her period pain.

So, then we went to the hospital so many times over the next couple of years, and it was... and I think it was... the worst part was that they were all ladies and it was kind of... They probably didn’t have any conditions that made their periods worse, and they probably thought that I was just like blowing it out of proportion and that I was just saying it because I didn’t like it, like everyone else does. But yeah, they were just all... they were all 10-15-minute conversations: “Nothing we can do, try this pill, if it doesn’t work, come back,” and kind of waiting months between appointments, even if there was something wrong.

But you waited four months for an appointment, so it does sound like you got heard when somebody referred you at least, and so there were—

Mum: I think it was the second referral. We had been round the referral cycle once already, and we saw a different specialist the first time, and they essentially said the same thing. I think that’s when you moved from norethisterone to the desogestrel the first time,—

Liv: Uh-huh.

Mum: —and they said, “Oh, that... that will be fine, that will work, that really will work, give it a couple of weeks, give it six weeks, give it six months,” and then we started the cycle again.

Liv was happy and relieved when she had confirmation in a letter that she had endometriosis as it made sense of her pain. Before this, she had experienced a difficult time with her periods and healthcare.

And I was really struck by what you said about the day you got the letter with your result, that it was a... a great day. Can you tell me any more? Or... or a little bit about what that meant to you, and what made it a great day?

Yeah.—

Does that make sense? Because that feels really important.

Yeah. It was kind of, again it... after three or four years of so many dead ends and tests with no good results, and not hearing back anything, and being told it was nothing, or that I was being dramatic, or... and then finally getting a letter and saying, actually, it is something, and that it is something important that we need to look at, it was just... I... I’d usually, when there was a letter from the NHS, it’d be: “Thank you for coming to see us,” like, and that’s it, and nothing else. But kind of getting... actually getting a result and being told that it was something, and that I was right, and I... and it kind of validating what... I was... what was happening and what I was going through, and finally be able to say, actually, the pain I am in, it’s actually a condition, and that it’s something and I’m not just saying, “Oh, I’m in pain,” or saying that: “oh, I’ve just got... I’ve got really bad period cramps.” ’cause it’s not, it’s not just really bad period cramps, it’s a condition. And also, being told that there is a very high chance that it could also be PCOS, but that they can’t 100 percent say until I’ve been tested for it, but that I can be treated for it, and that it’s... We’re working towards me getting better now.

Mm.

But yeah, it was... Well, I was in the back of the car and like I read... and I read the letter and I was expecting it to be: “We didn’t find anything,” like, and that’s it. And just reading it and saying... I took a... I took a photo of it and then sent it to my Dad, ’cause he was at work, but I just started smiling, and Mum looked at me in... in the mirror of the car, and she saw me smiling and said, “What is it?” and I told her that they’d got the results back from the MRI. And I think she was happier than I was that it was finally something that... something, and that I’d been told that I’d finally got a result. And ’cause I... yeah, I’d kind of got a... got a bad view of hospitals, and things like that, because of just being turned away, and like uneventful hospital trips, but there being so many of them, and so many of them being uneventful, and so many blood tests that had no result. And I have... I’ve had like three ultrasounds, and internals, and things like that, and just nothing coming out of it, and just, yeah, it’s just been…

I think the... the... when it started to get better, there was a lady who did my internal, she... she kinda said... we told her what... what had been happening, she said, just like: “Keep pushing and keep pushing back to...” like: “go back to the hospitals, try... keep going to try and get a result because you... and you’ve just got to keep... keep get... asking for it until you get... get the answer you want.”

So, was that... and was that helpful, that sounds like...?

Yeah.

So, there was something, you used the word ‘validating’.

Uh-huh, yeah, it was just... ’cause I knew it was something, but I didn’t know if it was... if I was be... like being dramatic, like they said like it was just a period and they were... ’cause I didn’t know if it was normal or not, ’cause like I was 10, I was... it was really young, and I only had off of... I only could base it off of what I’d been told about periods, and I thought it was normal, and kind of just realising that actually it’s not and that there is something wrong and that it is something that is gonna affect my life, and kind of actually finding out that it is what I thought it was, and that it is not normal and that I do need help for it. And yeah, it was just... it... it was very nice to know that it was... it was something, and that it was just... just wasn’t something that you can just brush off.

Yeah, and there’s so much in that. So, validating, but also hopeful?

Yeah.

Liv says it is important for doctors to explain to young people why tests might (or might not) be chosen or useful, so that they can understand the decisions and options.

Most of my hospital appointments up until then had been kind of 15 minutes: “Nothing we can do, sorry, like, come back in a few months, maybe.” But that appointment, I think we were in there for a... an hour and a half, with the lady that was at the hospital, and it was kind of the best appointment I’ve ever had, because something actually came out of it. And she... she told us things that I hadn’t been told before, that I didn’t know about, the opt... other options that we could have, reasons why maybe these things were happening, and she said that it could be endometriosis and PCOS, which is what Mum has, and it could also be adenomyosis, which is just slightly different from endometriosis, but it’s not found as much in younger people, or just as well as endometriosis. And she said, “OK, we can... I know you’ve done loads of blood tests, you’ve tested for everything, but have you done M... MRI yet?” and we said, “No, we haven’t,” and she said, “OK, I’ll book you in for MRI, and if there is something, it will show it.”

Because in... in that appointment with that... the final... like the final hospital appointment, she... well, she went over everything, from what I’d already heard, to what I’d never heard, to things that doctors had done that they shouldn’t have, because there was no way it would have gotten... gotten you anywhere. And kind of saying that... One of the things... one of the biggest things we came across was wanting... like, requesting a laparoscopy, because that would have given a better view of what was going on internally, but they kind of... we just got told no, but we didn’t get told the reason why they said no. And the reason was, actually, because they don’t do them anymore, and it’s kind of out of fashion, because they’re... like, the maj... the majority of the time, if you’re younger than 18, the results, there’s no results, because they... they can’t really see anything. And I think they should just... I think it’d be better if they just explained more. And because the younger you are, the less you know about all the kinds of things, and yeah, I just think you should explain all the possibilities, and not just the... what you think at the moment it could currently be.

And do you feel like your... from your observations and your experience, do you feel like your age played a part in how those...—

Yes, yeah.

—or did your age get used in explanations to you, is that something that was part of it?

I think... I think the... it was more: ‘oh, yeah, it could be this, but you’re too young,’ ’cause it... yeah, it could be rare, but that doesn’t mean it’s impossible. ’cause even though it is rare, it could be one of the rare moments that it is actually happening, because it is rare in young child... in young girls to have a diagnosis at their age, but it’s not impossible, and if it’s not impossible, it should be one of the options for testing. ’cause a... again, I think if I had been 18 to 20, it would have been quicker because it would have been: actually, could be this, ’cause you’re not too young, could be this, because you’re the right age for symptoms to start... start showing. But yeah, I think there’s a lot of... and it’s not... if it’s not common, it’s not happening, kinda thing.

Liv said that hearing that her MRI showed endometriosis was ‘such a good day’ for her because she now knew what it was. She recalls being advised by a scan operator to keep going back and pushing until she got the answer she wanted.

And so, I had... I had a loads of trips over the summer, so I kinda forgot about it, and then I had my MRI in September, I think, at the start of Septem... September, before we went back to school. And usually, if you don’t get... if you don’t hear anything for the... for the few weeks after, you kind of think like: ‘nothing’s come out of it,’ so I’d kind of lost hope, and like there... there was nothing we could do and it was kind of I’d have to wait till I was 18 to test for PCOS, and then get treated for PCOS. But then we... when we came home from... when I came home from school one day, there was a letter from the NHS and it said, “We’ve got the MRI results back, you had... there are traces of endometriosis and adenomyosis, and there’s nothing more we can do than what we’re already doing, we just have to wait now till you’re older for us to test for it.” And so, it was kind of... it was... it was su... it was such a good day because it was... we were kind of... there was... it wasn’t a dead end, it was, we knew now, we knew that it was endometriosis, we knew that it was adenomyosis, and we knew that it was something and we knew what it was.

And I was really struck by what you said about the day you got the letter with your result, that it was a... a great day. Can you tell me any more? Or... or a little bit about what that meant to you, and what made it a great day?

Yeah.

Does that make sense? Because that feels really important.

Yeah. It was kind of, again it... after three or four years of so many dead ends and tests with no good results, and not hearing back anything, and being told it was nothing, or that I was being dramatic, or... and then finally getting a letter and saying, actually, it is something, and that it is something important that we need to look at, it was just... I... I’d usually, when there was a letter from the NHS, it’d be: “Thank you for coming to see us,” like, and that’s it, and nothing else, but kind of getting... actually getting a result and being told that it was something, and that I was right, and I... and it kind of validating what... I was... what was happening and what I was going through, and finally be able to say, actually, the pain I am in, it’s actually a condition, and that it’s something and I’m not just saying, “Oh, I’m in pain,” or saying that: “oh, I’ve just got... I’ve got really bad period cramps,” ’cause it’s not it’s not just really bad period cramps, it’s a condition. And also, being told that there is a very high chance that it could also be PCOS, but that they can’t 100 percent say until I’ve been tested for it, but that I can be treated for it, and that it’s... we’re working towards me getting better now.

Mm.

But yeah, it was... Well, I was in the back of the car and like I read... and I read the letter and I was expecting it to be: “We didn’t find anything,” like, and that’s it. And just reading it and saying... I took a... I took a photo of it and then sent it to my Dad, ’cause he was at work, but I just started smiling, and Mum looked at me in... in the mirror of the car, and she saw me smiling and said, “What is it?” and I told her that they’d got the results back from the MRI, and I think she was happier than I was that it was finally something that... something, and that I’d been told that I’d finally got a result. And ’cause I... yeah, I’d kind of got a... got a bad view of hospitals, and things like that, because of just being turned away, and like uneventful hospital trips, but there being so many of them, and so many of them being uneventful, and so many blood tests that had no result. And I have... I’ve had like three ultrasounds, and internals, and things like that, and just nothing coming out of it, and just, yeah, it’s just been...

I think the... the... when it started to get better, there was a lady who did my internal, she... she kinda said... we told her what... what had been happening, she said, just like: “Keep pushing and keep pushing back to...” like: “go back to the hospitals, try... keep going to try and get a result because you... and you’ve just got to keep... keep get... asking for it until you get... get the answer you want.”

Liv’s Mum thinks that parents should listen to their children, and that doctors should listen to young people and their parents.

Mum: Only two things really: 1. how proud I am of Liv and 2. ... well, 3. The second one is parents’ experience isn’t listened to either: from day one I was saying, “It’s endometriosis and PCOS. I know it is. Please can you help my child?”

Liv: Mm.

Mum: And that wasn’t even... it wasn’t even written down.

I think focussing on what Liv said about the listening and trusting your instinct, I mean, as a parent, listen to your child. We know our children better than the doctor that you see, you know, twice a year does, obviously, so if we say “this isn’t a teenage-angst moment, there is something clinically wrong here”, then that should carry a little bit of weight.

Liv thinks health professionals should not hold back on communicating directly with young people because of assumptions about their age, when they are the one’s experiencing the problems.

I think there should be more communication, especially... and like regardless of age, and I think age is the... and probably the most common thing that holds people back, it, like, thinking you’re not mature enough, or... I... Yeah, I think the maturity thing is one of the biggest, and that even though it is your health, they don’t think you’re mature enough to handle it, and that’s quite... probably where most of the problems are rooted in that they don’t think you’re responsible enough to talk about it and that they’ve got to talk to your parent, but your parents are not the one feeling it.

 And yeah, I think... I think there needs to be more conversations between the patient and the doctor, especial... again, especially if they’re young, because they don’t know anything, they don’t... they might not have access to research, they might not know people who have the same experiences, and you’ve just got to explain every possible outcome, no matter like whether it’s... like, seems outlandish and nowhere near what the person’s going through, it’s... it’s better to kind of say that ‘it could be this, but it might not be’, than say... than just, like, not mention it at all.