Jayden

Brief Outline:

Jayden is 19. He started his periods in primary school, and they have always been heavy, irregular and very painful. He has had really long periods of sustained pain and bleeding, which was difficult. He was diagnosed with PCOS (Polycystic Ovary Syndrome) with a specialist endocrinologist when he was about 13. He thinks not enough is known about PCOS and pain, and it is hard to find information relevant to him and his healthcare situation. Having his friends and family know he has PCOS and pain does help, because they are supportive if he has really bad cramps when he is with them. He would like healthcare professionals to not be dismissive of period pains and difficult bleeding, or to not look further into options. He thinks fear of judgement puts young people off coming to ask for help from healthcare professionals, and this is isolating and frustrating. He thinks young people need better education in schools and more support, with more inclusive spaces and language.

Jayden found his first period bleeding ‘scary’ because he didn’t know what was happening. Knowing he was trans he was also distressed about this sign that puberty was starting.

It was weird ’cause it wasn’t... I mean at that point in time, there wasn’t like any talk about it because I was probably like on the younger end of when people were probably like expecting them, so yeah, and I mean I didn’t really know what... what was happening. And it was distressing as well, ’cause like, well, with being like trans, it was just something that I didn’t really want to happen. Like I already knew at that point that I was trans, so like, yeah, it was just mi... well yeah, mixed feelings about it. But honestly, like with not having any talks about it, it... it was quite scary, like I thought I was like dying or something like that. And then like, I don’t know, ’cause something happened to come up like with like... like my mum or like something like on the TV, and she had a conversation about it, and that’s when I was like: ‘oh, yeah, by the way, like that makes sense then.’ Yeah, so it... it was a little bit scary considering like I didn’t know what was happening.

Yeah. So... so your first period came before you’d had like the talks at school or anything like that?

Yeah.

And so, can you remember what you did or how you made sense of it? Did you tell anyone?

No, not for a couple of days, ’cause I was like: ‘oh, maybe it’s just something.’ But yeah, but... yeah, like I... like I say, I... I didn’t tell anyone ’cause I didn’t really know what... what it was until potentially something like will just pass, but then... and it was like a few days. And then, like I said, the conversation came up like with my mum, and that’s like... that’s like when I told her. But then I didn’t... at the same time I didn’t really want to tell her ’cause I didn’t... it was kind of like I’m in denial sort of thing. Yeah, yeah, that... that... yeah, and pretty much it.

Yeah. And you said... you said it felt quite scary?

Yeah, just ’cause it was like really... like I said, it was almost like really, really like heavy, so it was like a lot... like... like I was bleeding like quite a lot, so... And you know I was never... I had often not had anything like that before, not even like a cut that’s bled that bad, so it was something that was a little bit scary, yeah, seeing that much.

Yeah. And you said that for you, it was something that was a bit dis... you were a bit disappointing and it was a bit hard to start because of where you were at.

Yeah. And so, what was the last bit, sorry?

Because of where you were... were... because of how you were feeling where you were at.

Yeah, yeah. Yeah, I did... I did think it was like a bit difficult, and I did, once like... and kind of like my mum was like: “Yeah, definitely, it is like, you’ve started like puberty then.” And I did cry a bit ’cause I was just like: ‘I don’t want to.’

Jayden recalls being taught about puberty, periods and contraception by school nurses in year 6 at primary school.

And can you remember anything about the kind of less... the... the education that you had at school, or what that was like, or what that felt like?

Not complete... I remember that they... like they split it into like two rooms, and then it was pretty much just like a... they... they played like videos of just like, male puberty, female puberty, and it was like cartoon things.  Well, so... sorry, well, there was two nurses and like they played them. And then after that, it was a thing of like, here’s how like your... here’s like different sanitary products that you can use, this is how like they’re used.  And then there was also like a brief talk about like contraceptives as well, but it wasn’t like anything too... and too in depth.  And then, you know, people... people would leave them with like the little goody bag things of like a pack of like period pads and a notebook or, you know, something along them lines. It was probably... like it was probably like an... an hour, 45 minutes max. But it was obviously... helped people.

Jayden recalls being told they could use paracetamol for period pain, but does not think they were ever advised about when to get help or further support.

Tell you anything about... that you can remember about what to expect in terms of them being regular or period pain or when to get help?  Do you remember anything like that?

Not off the top of my head. I think I remember... vaguely remember something about like maybe like pains, or whatever, and like how it can like be like eased, and it was just like the typical thing of like: “If it... it’s too bad, have some paracetamol, have like a hot water bottle,” or something like that.  But I don’t remember anything about like: “If it’s so bad, get help,” or anything like... yeah, I don’t remember anything like that specifically.

Jayden was told by a friend that POP tablets can help with period cramps, but not interfere with testosterone treatment. They checked this out with their gender clinic who confirmed this and were glad to learn that these are an option for their pain.

Recently  a... a friend told me... ’cause I... well, it was a friend that told me about like this research, ’cause... well, ’cause like... well, yeah, like well, it was to my partner, and my partner was like: “This is actually really useful,” ’cause I was actually like in the middle of having just like a really bad, like... so like hour... yeah, hour.  And then like he’d said progesterone-only birth control can help with cramps without interfering with being on testosterone.  And funnily enough, like pretty much like the next day, or something, I had an appointment with the [place name], like, gender clinic and they said the exact same thing saying that I... it could be something beneficial and... But I... I haven’t given it much thought since, ’cause this was probably like a week ago, or something.  But yeah, it’s... it’s something that I’d probably go for because it is bad sometimes.

Jayden has found finding information about PCOS (Polycystic ovary syndrome) difficult. He finds there is not much research about PCOS and period pain and even less for trans men with PCOS and period pain.

Not specifically about like periods. I’ve... Yeah, I’m not... only things that like I know are just pretty much anecdotal.  I... I do find that it’s like pretty under-researched area, so I don’t... yeah, period pains, it does... I don’t think that there’s all that much to do with like PCOS (Polycystic ovary syndrome) and this... particularly like how I struggle with it. But also, then again, the issue of trans men with PCOS, it’s... that’s an even smaller group.

I mean, I think you’ve... yeah, I couldn’t agree with you more. I think... I think PCOS and pain, PCOS in general, certainly PCOS in trans men, and actually periods in trans men and where you find information and... and what you know. And maybe a bit... and I think you’ve kind of touched on this throughout a few of the things you’ve said, but... but there’s... yeah, there’s that kind of experience of periods and... and then the pain that goes... goes with it when it’s been quite unwelcome, and I’m thinking perhaps...?

Yeah. ’cause I know people when they’re like: “Oh, it’s really bad, paracetamol,” but it’s like, people... obviously people like... you know, they’re gonna have different pain thresholds, but it’s like, I don’t know anybody... like, other... other than my sister, who also has PCOS, I don’t know anybody that’s like been... like that has threw up before because of how bad like the pain has been, or even like passed out. ’cause my sister, she’s fainted so many times, like when she’s had like a bad like period, like usually like a bad period or like really bad cramps, there’s been many times like she’s passed out and I don’t know anybody else personally that has had that level of pain where it’s caused them to do that. And even like when I have like researched things on like how can I... it’s basically like: ‘what is it that I can take?’ there’s like nothing other than just: ‘Oh take paracetamol, it’ll help,’ but it doesn’t.

Yeah, no, so... And where... where have you... are there places where you’ve tended to look or where you’ve tried to look and kinda not found things?

Well, the first thing that always comes up is like the... like the NHS website, you know? That that’s always like the first thing that comes up and that’s not something that I found particularly helpful, but that’s like, yeah, again, like anecdotal things, whether it be just like talking to people or even do you know like on a different forums, like I’ve seen people post things on... like Quora, or Reddit, or something like that, and again, obviously, everybody’s thing is like unique to them, but like I said, the things that I’ve tried, I’ve just not found it helpful, or it’s just the same advice getting repeated.

I think having like PCOS is something... obviously it makes like a typical cycle very different. Yeah, it... it just... it’s very different to like a typical one, so I... and I couldn’t think of a single like website or organisation, or just anything, that can provide information or helps people with like PCOS. So, I think on... I think... I think something that would just be very beneficial is like... like I said, the thing that always comes up first, like the NHS website, if they... but it could be very kind and just link somewhere, it’s like: ‘if you’re having something that is like irregular or, you know, it’s just not something that’s typical, here’s different places that have more information in that area,’ just being able to find something easily. But like I said, the... the... I don’t think there’s anything that’s easy to find.

Jayden thinks people often don’t talk about periods or share their experiences, making it hard to find people to relate to or find helpful advice.

I don’t think it’s something that really gets spoken about, really.  Yeah, like... like I said, like when it was like in school, the whole topic, it was just like being like tiptoed around, unless it was like biology lesson and you have to do about the reproductive system and, you know, you talk about that a little bit more in depth, but when it came to like that one day that we had where it was meant to be something insightful, it just left people probably confused, or just no better off, because people didn’t wanna say the terminology. People didn’t wanna explain more in depth or even talk about different personal experience ’cause it just feels like a little bit too invasive.  And I think, yeah, the... the... of... well, people... people know that is just a stigma against it, it’s something that it’s like: ‘oh, you... you don’t talk about that, it’s a private issue,’ but that... that that’s not helpful for people that need advice because, you know, it’s like a: ‘oh, well.’ Like I say, I don’t know anybody who has had the exact same experience as me, but there potentially could be, but people don’t wanna talk about it. And then it’s like, they could have something that is actually helpful, but I’m not gonna know.

Jayden has worked out how to describe his back pain, but finds period pain really difficult to explain because of how it feels and because it fluctuates.

I do still think it’s hard to explain how bad it can actually get because it’s the only... yeah, and I don’t know, and I do think it is hard... you can convey how... how bad it can be because anybody has like that sort of pain at all time, but it’s like it’s extreme. I guess, well, for... for me, obviously some people... I know that people that probably have it, prob... it’s probably more painful than for other people, but...  Yeah, no, and like I say, it’s just so hard to try and explain the type of pain because it feels like a specific source, and it just feels like unique to what it is. And like I said, it’s just, yeah, like ’cause I mean I have like backpain anyway, so it’s... and that’s always constant. I can explain that a little bit more, but when... yeah, I don’t... I don’t know, like I said, I can’t explain it, and you just have to kind of see me in that sort of moment to understand, yeah, and it is bad.

Do you think there’s anything about how it gets heard? Like it’s hard to explain...

Oh, no, yeah. No, I... yeah, and it is just hard to explain ’cause it... like I don’t know, it just feels like you can’t put your finger on it a little bit. Like, yeah, and I... I don’t know. Like I can... ’cause it... like I say, like with like my backpain I know with that it’s like nerve pain, or sometimes I just like feel stiff, I can explain that all right, I can pinpoint, you know, where it is, what causes it, or something, but it’s sporadic. It’s not nerve pain, but it’s not exactly muscular, so I don’t know what else to kind of like call it.  It can fluctuate, and like I said, it just... it’s not constant, it just happens with like an hour like time period, so... Yeah, and because of like the way that I am, sometimes it just also feels like I’m just exaggerating a little bit when I say I can... like I get like lightheaded and I threw up before, it like makes my legs feel horrible and I can’t like do much. It just feels like... like I’m over-exaggerating a little bit as well because it’s like: “Oh, well, you... you should be used to it, it happens all the time.” And it’s like: ‘yeah, but that doesn’t make it... and that doesn’t make it less painful.’ In fact, like I said, it feels like it consistently gets worse each time.

When Jayden wants to talk about period difficulties, health professionals seem to disregard pain and period symptoms and just focus on weight, which doesn’t help.

I just think it’s... well, me, and also just other people that I know just get very easily dismissed. It’s going to be X... it’s going to be this, this, and this, you know?  Of... I think often it’s just like: “Oh, it’s overweight, you need to like lose weight,” but then it’s difficult because of like PCOS (Polycystic Ovary Syndrome). ’cause that was the reason why I got put on metformin. It wasn’t because to... to help with the PCOS, it was to get rid of the excess weight that I have, and then the PCOS will be dealt with, but that’s not... my weight’s not my biggest issue, it’s the pain. But actually, I was gonna say, it’s something that you can like write down in like... yeah, for like the research: the doctor said that the medication will essentially give me anorexia to lose weight “and then we’ll look at it later,” which just wasn’t helpful at all. Yeah.  Yes, and... you see I... so I just think that that’s just something that I’ve just noticed that it’s like I’ll go somewhere and they’ll just look at me and go: ‘it’s clearly another issue.’ When even though they... they won’t even look at my medical records and see I am diagnosed with X,Y, Z, it’s just: “You’re overweight, sort that out first and then we’ll look at you.”

Jayden was diagnosed with PCOS by an endocrinology specialist as a teenager and offered metformin as a treatment. They were a bit worried about the possibility of liver impacts, and also about oestrogen levels during their trans healthcare journey.

And can you tell me a little bit... so about your kinda journey with PCOS (polycystic ovary syndrome) and how you came to know about that and how that impacts on you and your period pain?

So, I... well, I became obviously trans when I was 11 or 12. Well, I came out to family, and then I went... well, my Mum... like my Mum booked a doctor’s appointment just because like, she was like: “Well, how do I get seen by [gender clinic name]?” She was like: “I don’t really know who else to go...” obviously, doesn’t know who else to go to, went to the doctors, and stuff. He referred me to an endocrinologist, and... But at first... at first, he thought I... I was... I’d just be diabetic. Well, he... he did that, so... sorry, he sorted the referral to [gender clinic name]?”. Then the endocrinologist thought... just thought I might have been diabetic ’cause like I am like overweight, and... but I’m also like got some like extra... I’ve got like excess body hair, especially for like, at the time, like a 13... yeah, just 13- 14-year-old. So, he done like blood tests, and stuff. They came back: oh, I’m not diabetic. And then, he’d done like a scan just to see like if I’ve got like a fatty liver, or other things, like I can’t remember, it doesn’t matter. Well, it does, sorry. Yeah, just done... done a scan and that, well, yeah, he seen that I do have cysts on my ovaries. And then, yeah, so I found... like I said, I found out when I was like 13-ish. He did... after a bit, he did try to put me on metformin, but I didn’t know... ’cause I do... I do have like damage to my liver ’cause of like previous medication that I was on, but that’s like over time repaired itself, but at this point in time my liver was still quite damaged. Yeah, but one of the side effects could be liver damage, and I was like, I don’t... of like metformin and I was like but he never told me that. And done my... well, my partner did research on it and was like: no, you should... basically, they shouldn’t take this because, yeah, that’s one of the... Actually, no, it wouldn’t be 13 when I got put on medication, so I would have been 16. Big difference. But I was diagnosed with PCOS 13, 14.

And that was after some blood tests and a scan?

Yeah, yeah. And then it was like two years, yes, and then within two years later when I got put on metformin at 16. Yeah, so it was like, probably best just steer clear, so I did. And then another thing as well is that I can increase oestrogen by 25 percent. And like the... well, the reason why I got referred to the endocrinologist is to... well, they just monitor like my hormone levels for if [gender clinic] did put me on either like blockers, or even like testosterone. And so like... and like I say, he knew that I... like that I’m trans, so... it just didn’t feel right. But I know I... I didn’t... I didn’t end up taking the medication, but I took like a week until I was like: ‘no, I’m sure I probably shouldn’t.’ But... but I moved to [place name] when I was 16, so like mid-August 2021, I’d moved, and I’ve not had like anything looked at since then.

Jayden thinks doctors need to hold a human connection and be listening as well as thinking technically, and to not ‘fob off people’.

I mean I... well, to me, it just feels like it’d be common sense, but don’t fob off people.  Yeah, ’cause like I said, like a lot of the time it just doesn’t feel like I’m being, like, listened to, or like as you walk in they already have like an idea of what they think is gonna... like the issue is gonna be before you even open your mouth. And, I don’t know, just like so... so many just don’t seem to be open-minded because obviously they’re gonna be thinking quite... Yeah, obviously, you know, the... they’re gonna be thinking quite technically, medically, academically, but... and I feel like sometimes they can be like that bit of like loss of like a human connection, almost; they’re not hearing what you’re saying. They’re just thinking, ‘what did I learn?’ Or... that’s what it feels like sometimes, you know, ‘what... what have I learnt?’ And they’re just applying that where obviously that isn’t... isn’t helpful.