Zaynah

Brief Outline:

Zaynah is 18. She hadn’t heard about periods when she started them, which was a bit scary. They have always been heavy – but she found the advice about how many teaspoons full of bleeding was normal or heavy difficult to make sense of. When she was 13, she had to change her pads more than hourly, and her mum supported her to see a GP. She had a blood test and was so anaemic she needed a blood transfusion. She had medicines for the pain and flow that helped for a bit, but then her periods became really difficult again. She has had a complicated journey through healthcare, and has seen a number of GPs and specialists and tried lots of medicines. She has found finding information and advocating for herself as a young person a bit difficult and lonely at times, but her mum has been at her side throughout. She has now been diagnosed with adenomyosis and endometriosis, and has a hormone coil which has so far made a big difference to how she feels. She thinks doctors and teachers should listen to and believe young people when they are explaining the difficulties and impacts of their period pain and bleeding.

Zaynah had heavy periods from the start that could last for 12-14 days. She initially thought they were just something she would need to get used to, but has learned that this is not the case

I’d say my like journey with periods has been very confusing, jumbled, and overwhelming because they started when I was 11, and before that, I didn’t know what a period was. So, I hadn’t been taught it at school yet, so when it like appeared on my underwear, I was a bit like: ‘why is there blood, what is this?’ So I think from that point, from the beginning, it was a bit confusing.

Before my period started, I used to experience pain, and I went to the doctor’s once and she’d asked me what... if I had started my period, and I didn’t know what that was, and then I was too scared to ask my mum what that was, so then obviously when it started, it was a bit confusing.

It was often heavy at the beginning and lasted quite a few days, quite a few days longer than it should have, often about 12 to 14 days. So, I think from... from the beginning it was not right, like it just wasn’t what... what it was supposed to be; it was really heavy. So, from the beg... from the beginning, I was in school, so Year 7, I hadn’t... so it was really heavy and I often had to change my pad within like three hours. And I thought that was normal, and I thought everyone else was experiencing the same thing. I was... yeah, I just thought that I just had to get used to it and, you know, it wasn’t really like that and it was just quite tough to get used to. And then it caused a lot of like issues with like iron and B12 and vitamin D, yeah, things like that; I’m not really sure which ones they link into. And then I think about a year and a half into my... have... having started my period, I ended up in A&E because of low iron levels and I had to have a blood transfusion because of it. Yeah, and then...—

Oh.

—yeah, and then I ended up on tranexamic acid and mefenamic acid for that, and they both worked quite well in the beginning. Because at that point I wasn’t experiencing much pain, but it was just really heavy and just making me really tired and like causing a lot of like fatigue and just... yeah, like it wasn’t very nice. And then I think about two years later, the mefenamic acid kind of started to wear off a bit, like it didn’t work as well anymore.

Zaynah talks about how her period bleeding and pain act together to impact on her life.

How much would you say that your periods, the pain, bleeding, separately, but both, have impacted on kinda school and school life and—?

I think a lot because from Year 7 I was quite like anaemic. Like I’ve been anaemic all the way through, and I feel like that on its own affected me quite a bit, like whether or not I did sport and like how much I could do. Even like stairs, like how... how quickly can I climb stairs, things like that. How long you can walk, things like that. Like I feel like they’re really little things, but like they... it does affect it, yeah. And yeah, I just feel like it affected quite a few things. And then attendance. Then also exams, and then I feel like that causes you stress as well because then you’re like: ‘if I miss school, how will I perform in exams because I’ve missed so many lessons?’ or ‘I’ve missed so many days of school?’ whether that’s because you’re in pain or because of appointments. Yeah, I just... I do feel like they’re all very, very linked.

Zaynah was told how much blood was normal to lose in measures of teaspoons. She didn’t know how to make sense of this in reality. When she was leaking through pads in less than an hour, she realised she needed to ask for help.

So, what sort of things did they cover?

So, periods and about pads and about how much blood is normal to lose, but they did that in like... I think it was teaspoons, so I just... I didn’t think that’s a good measure because like how does that reflect on a pad? Like I just don’t think that makes a lot of sense, yeah.

No.

Like that’s all I can remember from those sessions of the teaspoon thing and, yeah, that’s it, yeah.

And then... and then knowing what to do with teaspoons. I guess you... and it’s quite hard to know what... what’s... what’s happening with your bleeding, then.

Exactly, yeah, I was just like: ‘how is that supposed to be reflected onto a pad, like?’ I remember Googling that actually: “How many teaspoons of blood goes onto a pad before, like, it leaks?” and Google wasn’t very useful either because I don’t think that made a... much sense, yeah.

And was that your start of... ’cause it’s... at what point did you realise... you said your... you realised that your periods were really heavy: at what point kind of did you start thinking that might be the case?

So, I’m gonna say about a year on, because I was in PE and I leaked, so that morning... the day before I’d started my period, and this was the second morning and I’d woken up at 7.30 and I’d changed my pad then, and by eight it was already full, so it... it had only been half an hour, so I was like: ‘this is not normal, like I don’t know what I’m going to do today and like this just isn’t normal.’ Like it hadn’t been that bad before, so I think that at that point I was like: ‘this isn’t normal, I need to ask somebody for help, I need to do something,’ and then I changed my pad at eight, and then I went into school and changed it again and it was already full, and this was before nine; I’m gonna say this was about 8.45. And then I had PE ­– period one – and I’d leaked, so I was like: ‘yeah, this isn’t normal,’ and then I... I went home and I did tell my mum that day, yeah.

OK. And how did that all feel?

I think really overwhelming and in some ways embarrassing because it goes back to that point of like being able to manage it, but at the same time at that point you kind of realise that this isn’t something that should be managed, but something that should be like looked into instead.

Zaynah had convinced herself that heavy and painful periods were something that she just had to get used to. She didn’t talk about them in detail with friends or family initially.

I just thought that like this is something new that I have to navigate and learn how to manage and it’s once a month and I need to be able to like use a pad, know when to change it. Like I just thought... I just thought that there were loads of things that I had to learn, yeah.

OK. And how did you learn those things?

I don’t... I don’t know how to answer that because I don’t think... I think it’s something you get used to, if that makes sense? Because that... most of that year, I had to convince myself that everybody had a period and therefore I just had to get used to it, and no one like had issues with periods, because if everyone had one, like no one’s could be worse than someone else’s, if that makes sense?

Yeah.

And yeah, I just thought it was kind of... this is... like a person-to-person basis and you just have to get used to it.

And was that a message that you sort of picked up from when you learnt about periods, or just—?

Yeah, I think so, ’cause I don’t think they were talked about. They weren’t talked about at all like amongst like anyone, like friends, family, whatever, so I don’t think it was a thing of like you could go round and ask people for help or like flag something, if that makes sense?

Mm.

And be like: “I think my periods are causing me issues,” because that was never raised as like an issue.

Yeah.

Yeah.

So from your perspective, periods kinda weren’t something that you talked about much with other people?

Yeah, yeah, not really.

Can... can you tell me a bit more about that?

So, I had a few conversations with like my friends in school about it, like sometimes in the playground, like at break times like: “Oh, I’m on my period,” and someone else would say, “So am I.” And like conversations about pads and like the brands of pads that we used, but like that was literally it. And conversations with my mum as well, and just about like doubling up on pads when I went to bed, so that it wouldn’t leak, but like that was literally it. Nothing more about like how it can cause pain, or how it can cause other issues, like it was never flagged as something like that, yeah.

And do you have any... did you ever want to say those other things?

I’m not sure to be fair because... because at that time I didn’t see it as an issue myself, like I’d convinced myself that it wasn’t an issue and that again that it was just something that I had to get used to, so I don’t think I did, yeah.

Zaynah has searched for information online but finds it is not always relevant, and has learned over time, through conversations with her Mum and doctors, that some of what she reads may be inaccurate.

And without your Mum saying that, were they things that you’d come across at school, or was that the first time you heard of them?

Yeah, through my Mum, yeah.

OK. And when you heard those words, what did you do? Did you...

I definitely Googled them of course.  Yeah, I Googled them and... yeah. But I find Google’s not always the best source of information because it gives you the set definition of something and that’s not always right and it’s not always one-size-fits-all either, so... yeah.

Yeah. So how do you work out... I guess that’s the thing, isn’t it, how you work out which bits—

Yeah.

—are...?

I feel like that’s quite tough to do because like if you’re immediately hearing it and you’re still quite young, you’re going to immediately like listen to Google and think whatever Google’s saying is correct. But then I find that as you... if you go to a doctor and you bring it up, or even by speaking to my Mum, you realise that Google’s not always entirely correct.

Zaynah found it difficult to find online accounts from young people with similar experiences of periods, pain, and related health conditions, but discovered some on social media, which helped her feel less isolated.

Yeah, yeah, quite often. Like when I was seeing all those gynaecologists, like loads of different ones all at once, in that period, a lot of them were just like: “You’re quite young,” like: “it’s surely not this,” which like often didn’t feel very nice, because then I would often go back and Google it and see if I could find anyone online who was younger than the ages of like 40 and who had it, or like... yeah.

So... Oh, I see, so you were looking for other young people who might—?

Yeah. And that was quite difficult to do. I don’t think I like found any at the beginning, and then through TikTok and like Instagram, so through social media, that’s how I started to find people that did in fact have these issues or were now in like their 20s, but these issues started when they were teenagers, yeah.

Zaynah thinks people should be taught that everyone’s period is different, and how they can be linked with health conditions like anaemia or endometriosis. She thinks it is hard to know when to ask for advice if you “don’t know that these things exist”.

That everyone’s period is different. That people start them at very different ages. Like some of us started their period at like 10, or some would start at like 17. Like I feel like that’s something else that’s not talked about very widely. Getting rid of the teaspoon thing, huh. Talking about how like periods can cause anaemia and can sometimes cause... like cause underlying issues to come to like... light... like endometriosis and like adenomyosis. I feel like that should be spoken about more widely because otherwise you’re convinced, again, that your period’s normal and that like you just have to deal with it. Because if you don’t know that these things exist, then how are you supposed to know that it’s not normal? Yeah.

Zaynah has learned that to keep on top of her period pain she had to take her pain medicines promptly and not expect it to go on its own. Working this out for herself made managing things slightly easier for her.

OK. Yeah, how... in... in... in what way did it affect your first year?

Sleep, again. How often I’d be in lessons. How often I’d go home if I was in a lot of pain. Like I was like off lessons for like two or three days because of pain, then I’d just come home because it... it... it’s not that far from [city name], so it wasn’t that bad, yeah.

How was it managing your pain, kind of somewhere new, or...?

In the beginning it was really, really tough because it was like: ‘when should I take painkillers and when should I let this kind of go away on its own?’ and I quickly realised that I had to take the painkillers, like I couldn’t have instances where like I’d just let the pain go away on its own because it just didn’t work like that. I think as soon as I realised that it became slightly easier, it was still quite tough, but yeah, I just think you need to be able to do everything in your power for yourself in order to manage it even slightly, yeah.

The risk of bleeding through, not being able to find a bathroom, or developing pain made Zaynah feel fearful of going out. She tends to defer plans because of this.

I think... I think it was mostly was built on like fear of like if you went out with like your friends for like the whole day and like there wasn’t a bathroom nearby, like was that worth doing, because if you leaked or if you ended up in pain, like what would you do if you’re just out like somewhere and how would you get home, and things like that. I feel like often that... like even now I still do cancel plans if I’m in pain, I’ll just be like: ‘I’m in pain,’ like I’d... I’d rather not go out because I don’t... I won’t be as engaged in whatever we’re doing as I usually would be, so it’s just worth postponing, maybe, yeah.

Zaynah thinks describing pain is difficult, because the type and extent of her pain varies quite a lot through the month.

And did you ever kinda get asked to do a kinda scale or... or one to 10?

Yeah, a scale of one to 10. But I feel like that’s also quite hard to do because pain varies quite a bit, and if you’re always in pain, or like across your period and... So, like the... the week of your period and like a week where you don’t have your period, I feel like the scale can be completely different, because on your period you’re also dealing with blood, which can make the scale go like... go beyond 10, and then a week without your period, like maybe the scale stay... the scale stays within 10, like, yeah, I... I feel like it’s quite hard to do.

Yeah. So, describing pain is quite difficult?

Yeah, I think so.

Zaynah thinks pain is a “weird” concept, and that how people feel and talk about pain can be completely different. She has found this difficult in healthcare appointments.

Yeah, exactly, because I just feel like one person’s way of describing pain can be completely different to someone else’s pain, and both of you can be experiencing the same pain, if that makes sense?

Mm.

Yeah.

And I think you’ve touched a bit on trying to explain your pain to other people and trying to feel heard, but I don’t know if that’s something that you’ve thought about at all? It’s obviously something you’ve... you’ve had a lot of—

I think... yeah.

—kinda experience around.

Yeah, I just... I just think pain’s a really weird like concept. Like I’ve come to like just decide that pain is a weird concept and like... like I just... I’m not... and I still don’t really know how to explain it because I feel like from my first gynaecologist appointment, the first thing you need to be able to do is explain the pain that you’re having, and where it is, and what it’s affecting, and how long it lasts, and things like that, and I feel like that can be really tough because if you’re in constant pain too, like explaining it is a bit like... like I don’t know how to do that. Like I just... like it’s quite tough, and... yeah.

And it sounds like it’s something that you found quite worrying.

Yeah, exactly. Because I feel like as well like sometimes you think that there’s a set answer, and if you don’t give that set answer, they won’t believe you, or they think that you’re faking it, or like you’re making it up on the spot, if that also makes sense?

Mm, mm.

Yeah.

When Zaynah first talked to the school GP about her periods, her difficulties were attributed to homesickness, until she showed them the strong painkillers she was taking, but that were not helping.

So, I had a GP on site at school. At the beginning, they were not like understanding at all. Like they were convinced that I was just stressed about like moving away from home and that this was like homesickness and that it was just like coming out through all of these like signs, and I was like: ‘it’s not that because I’ve been struggling with this for like over a year like before I came here, like it’s not that.’ Like, and they just continued and kept on trying to say that it was homesickness and that like maybe I was just feeling lonely, and things like that. So that was quite tough at the beginning. Because my first weekend there, my... like the teacher who look after me in like the house that I lived in, sent me down, and he just sent me home, and I was like: “That’s not gonna fix my problems.” And he was just like: “No, like, I know you’ve only been here for five days and that like, and you probably just wanna go home and like see your parents and sleep in your own bed.” So, he just sent me home for the weekend, which didn’t do much. So obviously he saw me again like two weeks later, ’cause then he was like: “Oh, maybe we need to do something about this.” And then I told him what painkillers I was on, so then I think he kind of realised that maybe there is an issue here, because when I told him I was on co-codamol, and it was the strongest version, the 30—

500.

—500, yeah, he was kind of in shock, so he was like: “OK, maybe we do need to take this seriously,” yeah, yeah.

Zaynah had heavy painful periods. She saw a number of specialists including 6 gynaecologists before finally being diagnosed with endometriosis and adenomyosis. Her Mum helped support her.

Once they started taking it seriously, it was quite good because there was quite... there’s quite a few nurses who also like work in the like health centre on site, and yeah, I feel like they were all really understanding. And then when I... whenever I used to explain my pain to them, they would often be like: “Maybe you need to see a gynaecologist,” but the GP would always say like: “You need to... you need to look at all of the routes that are possible.” So, like I saw an endocrinologist, he thought it was IBS for a bit, so I kept a food diary for like six months. Yeah, there was loads of little things that they thought it could be, and I saw loads of different specialists. And then eventually I saw a gynaecologist. But even she wasn’t very good at the beginning, and then I switched quite a few times. I saw six in the space of from September until March, I saw six different gynaecologists because... And this was... they were all privately because they hadn’t been taking me seriously. They just like... like: “you’re young, like you’re... like it’s fine, like it’s just normal period pain.” Yeah, so I feel like that was quite tough as well.

I think that sounds a extraordinary experience.—

Yeah.

So you had... you had some months of seeing kinda other specialists, so endocrinology and gastroenterology.

Yeah.

OK, so stomach and endocrine—

And a urologist?

And a urologist.

Just two, yeah.—

So, is that ’cause you had pi... bladder symptoms and...?

Yeah.

OK. But then you finally... So can you tell me about your kinda journey through those six [er] consultations?—

Yeah. I feel like that was really like a weird like bubbly time like now, because it just feels like really like a long time ago, but it really wasn’t that long ago. So, when I started in September 2022, think '22, I started seeing consultants privately, like literally from September. And then I’d seen one gynaecologist and she didn’t take me seriously at all, and then she gave me... I can’t remember what she gave me, but it did not help. And then when I took it to the GP, he was like: “I don’t understand why she’s given you this.”  Then he said maybe I should see an endocrinologist, which then I booked to see, because my Mum said that if we went to see another gynaecologist, they might ask if you’ve seen this other specialist, and you can say, “I’ve already done that,” like: “this is where I need help and you need to give me like your advice, don’t push me off to someone else and make me someone else’s problem.” And then I saw another two in between in October and November.

Gynaecologists?

Yeah, two different ones. Then in Decem—

And... and what happened? Can you remember what...?

Yeah, they weren’t very understanding either. And my... yeah, my Mum just wasn’t fine.

So, did your Mum come to all of the appointments?

Come, yeah, she came to all of my appointments, yeah. And, then November I also saw a urologist, but this was on the NHS, and he was like: “I don’t think your issue lies, like, with me and my department here.” I’d also seen a gynaecologist on the NHS in November, and she was quite good, but she’d just given me the pill; I think it was the progesterone-only pill. So, I feel like she was quite good, but regardless of who you see, I feel like there’s a process that they just have to go through it and... [coughs]—

Do grab your glass of water.

—I feel like often that can be quite tough if you’re having to take like four month... four-month gaps in between like seeing—

What, to try different treatments? Yeah.

And if like they’re not working, and having to wait until that appointment can be quite tough. And I feel like by this point me and my Mum kind of knew what we were talking about in some ways, like... like we knew what we wanted from her, if that makes sense? And like the first time I went to see... like she gave me a diet sheet and my Mum was just like: “This just isn’t like good enough,” like: “we need more support than this.” In December I went to see a gastroenterologist and he was quite nice and he also said that: “I don’t think your issue lies with me,” either, so then I continued to keep my food diary. Then I saw the same gynaecologist in February, and me and my Mum had taken like a book of like questions and like things, and she just wasn’t very happy with like what we’d said. I just... I think she might have thought that we were a bit like... a bit too much, like coming on, if that makes sense? So, like... so I don’t think she was very like impressed. Then we saw... then the whole idea of having a laparoscopy was up in the air. So, then I saw someone else privately in March.

So that was the NHS consultant?

Yeah,—

And that was what... yeah.

—and then... yeah, and then I don’t think she was very happy with like the way me and my Mum went about it because we just like... I feel like we were quite full on with questions and things, and like... Yeah, I don’t think we came off as demanding, but I just don’t feel like we came off with loads and loads of questions, and sometimes that can be a bit overwhelming as well for like the consultant if... yeah, like... yeah, so I feel like that was a bit of a weird patch.

And then in March we’d seen someone else privately because at that point teachers at school were also like: “Maybe you should have a laparoscopy done.” So, we saw this consultant privately and he’d done an ultrasound and then he’d diagnosed me with adenomyosis. Yeah, and then we spoke to him and then he suggested that we stay on the NHS with that consultant, because she was quite good, which, yeah, I also thought that she was quite good. So, we stayed on the NHS and then I had my laparoscopy in June. So in between, I did struggle with pain, but like I had... I did have that laparoscopy in June, which I think did help.

And then what did the laparoscopy...?

So, endometriosis and adenomyosis, yeah, yeah.

Zaynah was worried that nothing would be found from her laparoscopy and was ‘quite happy’ that they found endometriosis which meant that her pain ‘had a name.’

When you heard that, after the laparoscopy, can you tell me how that... what that meant to you and how that felt?

I think I was quite happy that, like, all of this pain had a name and that, like, it wasn’t nothing. Like, because I feel like before I went into that laparoscopy, I was quite scared because I was like: ‘imagine having this and nothing shows up,’ and I’d like, wasted resources and maybe there’s someone else who needed it more than me. Like, I feel, like at this point I was quite convinced that it was all in my head, like the pain. Like, I was like, with blood, like you can physically see that, but with pain, it’s whatever you say, like no one is in your head to say that like, your pain is there, if that makes sense? I feel like I did struggle with that quite a bit. So, I feel like it was quite a relief that, like, something did show up, yeah.

Zaynah had a hormone coil inserted when she had a laparoscopy. This was initially really helpful for her, which was a relief after trying lots of other things that had not helped consistently beforehand.

And before the laparoscopy, I wasn’t like... I hadn’t been offered the Mirena coil before until that day, so then when I went in, and I’d spoken to her before the laparoscopy, she’d said that maybe the Mirena coil would be a good idea, depending on like how like bad things were, like how inflamed things were inside. So, she said she’d insert it if she felt like she needed to. And I like felt like that was a good idea, so I said yes. So, then she had inserted it. And in the beginning, it worked quite well, like it stopped my periods, but since about January, like the pain’s just come back quite badly, and like spotting, yeah. So as soon as I had it put in, so in June, like the middle of June last year, up until December, I was bleeding, but no pain. So, I was like: ‘I’m... I’m willing to take that, like I can manage this pain like as long as there’s no...’ I was... ‘I... I can manage this bleeding, as long as there’s no pain, I don’t mind it,’ and then, yeah, so that was a period from June until December, which right now seems a bit much, yeah. But like it wasn’t... it wasn’t really heavy, so it was manageable, and it did help with the pain, and I just felt that like I could just do a lot more again. And like I went back to school in September and I just felt like I was a lot happier than I had been before like the summer holidays and I just... yeah, it all felt a lot better and I just... I felt like a better person as well.