Young people's experiences of periods and period pain
Information young people wanted to find out about periods and period pain
In this section we hear about what young people would have liked to know about periods and period pain, including how to make sense of their own experiences.
These might be things that they learned about from talking to people or that they themselves had looked up to try to find out more. Some finding out about periods and period pain happened passively, for example hearing from a friend about periods and period pain or seeing information on a social media reel in their feed that they hadn’t looked for. Sometimes people actively searched for information in response to questions they had about periods and period pain. This section covers:
- What young people would have liked to know about the reality of periods and period pain
- What young people would have liked to know about managing periods and period pain including medicines and medicine side effects.
- What young people would have liked to know about health conditions that can be associated with periods and period pain.
What young people would have liked to know about the reality of periods and period pain
For a number of young people, like Emily Z and Hannah X, learning about the biology that underlies the period cycle and the possible mechanisms of periods and period pain helped them make sense of their periods. For Rosie ‘learning about biologically why things happen, like what’s happening at each stage of your period was helpful’ …because it makes it seem less scary and more of a natural process’. Ela finds she thinks differently about her period pain, having learned about the mechanism of period bleeding in GCSE biology: ‘I almost feel the pain differently after knowing like how it works. Like the pain doesn’t feel so much like a cramp anymore, but it... almost is like sensory in the sense I can almost imagine like my uterus lining actually shedding.’
However, while knowing about the ‘biological side of it’ could be helpful information, a number of young people felt this didn’t answer all of their questions or help them navigate periods and period pain. As Lola explained ‘we were told the whole cycle of the menstrual cycle, but we weren’t told of the effects.’ Emily said that in her experience, she had learned about biology but not period pain: ‘we don’t talk anything about side effects. It’s always the biology, how to deal with it, different things you can use for it’. As Rahma explained, while knowing about the biology was helpful, it could have been accompanied by more practical information because ‘OK, this is something you’re gonna have to go through your life, it’s not just a GCSE paper,’ you know.’
Rosie learned about the biology of periods, but not about cramps or the ‘physical experience of a period’. She had to find that out for herself.
Rosie learned about the biology of periods, but not about cramps or the ‘physical experience of a period’. She had to find that out for herself.
And it became sort of like... I don’t know, we got taught about it in Biology, in a very sort of like inhuman way, and there was not... you know like a picture of a woman, and we didn’t get taught what, you know, pads were, but it was just like, literally, like cycles of hormones and things, which was weird. But I kind of... you know, by that age, we all already knew what it was, and we’d figured out for ourselves, so it was all right. But interesting that none of the boys would be able to sort of like help some... or like another girl, because they hadn’t been taught anything.
Yeah. I’m interested that you say it felt inhuman.
Yeah, there was never sort of any personality tied to it. There was no sort of like humanity and was quite, you know, cold and reified, sort of like you were kind of just... it was just like a picture of a womb and then ovaries and you were like: ‘OK.’ But there was no sort of... it was just like how we were taught about the digestive system, or brain cycles, and things like that. It was just like just another thing that was like biology, rather than it being something that affected your life, or that was like, biologically, like already happening to you. I’m not explaining it very well.
No, you are actually explaining it absolutely... you’re explaining it really brilliantly and really clearly. So, it was almost, it was objective, but it didn’t relate to your experience. And I think you’re saying that it also made you think that it maybe wasn’t equipping the boys to know how to support someone, or what it might feel like. Have I got that right?
Yeah. We were never taught about cramps or like a physical experience of a period. It was literally just the biology behind it and why, or like at what point in the cycle which hormone correlated with menstruation or the like ovulation, and things like that, there was never any... Again, no-one ever taught us about what cramps were. No-one taught us about pads or tampons and which one to use. There was never any kind of even like pain relief advice. There wasn’t any of that, which was strange. And we all had to kind of find out ourselves.
Some young people wished they had been taught about the whole menstrual cycle, rather than just about the bleeding. Ela had found out about the possibility of mid-cycle ovulation pain, which she found really frightening until her mum explained what it was. Emily Z, Eidra and Poppy had all learned about changes in energy levels through their own experiences and wider reading and learning. Emily Z said ‘it’s everywhere in the media that like you get sad when you have your period, but it’s so much more than that for me. You know, it’s... it’s a cycle, it’s not just about having periods, it’s about ovulating as well. It’s the whole cycle that affects a woman; I don’t think it’s just her periods’.
Eidra looked for information about all of the phases of periods. She found it helpful to learn about possible ways energy and emotions change through the whole cycle .
Eidra looked for information about all of the phases of periods. She found it helpful to learn about possible ways energy and emotions change through the whole cycle .
So, a lot of the things I’ve Googled, so it’s to do with like the phases of your period, so knowing like what... where my body is at depending on my cycle, or like looking at symptoms I have, like if I’m feeling really sick, or if I’ve got really like a bad stomach pain, and like what I can do to like make that better. So yeah, just things like that.
OK. And that’s mostly been through Google?
Yeah, just through Google.
And are there any things that you found helpful through doing that?
Yeah, a hundred percent. I think the thing about your cycles, I find that really helpful, ’cause obviously like as women we are... like we... like our energy levels are constantly changing, like what we need is constantly changing in like... because of our cycle, so knowing like where I am in that, really like helped me like know my energy levels, know like when I’d be tired or more emotional. And I think like I looked up a lot of like natural cures, and like a lot of like natural supplements you can take, or like more vitamins that you can help to like make your period less painful. I think that was really helpful, so... yeah.
Ela and Emily Z and others said they would have liked to learn more about hormone and emotional changes through the period cycle when they were learning about menstruation. Although she learned about the biology, Elsa didn’t really feel she learned about how this might affect how she felt: ‘in Biology in secondary school, I had a few lessons on like: “This is the menstrual cycle and ovulation” and then all the different steps. But, in that case, they didn’t really talk about hormones or mood swings or any of the other many sort of side effects or symptoms, or whatever. That I just sort of had to learn from experience and my friend’s experience’.
For Abi, how “miserable” she feels with her period doesn’t match up with the “mood swings” she was told to expect.
For Abi, how “miserable” she feels with her period doesn’t match up with the “mood swings” she was told to expect.
And the other thing as well I struggled with was really... I was really emotional on my period, I was really... I got really, really unhappy, and it would be about two or three days, I was really miserable, and in that time, you think, ‘this is not my period, this is just... this is just how I feel.’ And I convinced myself I had depression sometimes because I had two days of feeling so unhappy, and then my period would end and I’d feel fine. And I think nobody warn... they said, “Oh, you might get mood swings,” but they didn’t mention how miserable I would feel.
No. And that’s something I’ve been hearing about quite a lot, that... that... that there was a mechanical explanation, but maybe a bit less about what to expect or how it might impact on you.
Yeah, definitely.
Is that something that you would have found helpful, you think, when you then started experiencing those things?
Yeah, I think also if people knew more about it, then, yeah, I’d feel more likely to be able to say, “This is... this is what I’m dealing with.” And I think it would have been helpful.
Another aspect that some young people had not felt prepared for were the changes in vaginal discharge through the period cycle. Anayaa told us how ‘after my period, I get lots of discharge and I feel like if we were taught about that, then maybe it would make it easier, so like you know what to expect and stuff, and how everyone’s experiences are different, instead of knowing the actual science behind it and knowing like how to actually deal with it’.
Bella was really frightened when she first experienced the change in her vaginal discharge through the period cycle because she wasn’t taught to expect this.
Bella was really frightened when she first experienced the change in her vaginal discharge through the period cycle because she wasn’t taught to expect this.
So many things, not just relating to periods, but just general like sexual health and stuff to do with being a woman in general, like for example something I can think about... like discharge and stuff like that, just... and I thought... I... I literally thought I was like my... I was broken.
Yeah.
I thought I was broken when I first saw that discharge, I was like: ‘oh, my gosh, I’m peeing myself,’ but I wasn’t, it was just discharge. I... I wasn’t taught about that; I wasn’t taught that was a normal function of your body.
Zaynah tried to make sense of what she had been told about how much bleeding could be expected: ‘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’.
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.
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.’
Jian was told at school that everyone’s periods and period pain were different, and felt able to have conversations with her peers at school about this (read by an actor).
Jian was told at school that everyone’s periods and period pain were different, and felt able to have conversations with her peers at school about this (read by an actor).
I think it was so drilled into us, that it wasn’t gonna be the same, but I guess it did come into actuality and I was starting to like actually connect the dots that my period wasn’t your period, when, you know, I would see girls go on the pill, I’d see girls who would use pads instead of tampons. We actually would have discussions about like: “Which one would you use?” “And I would never use a tampon,” things like that. So that it... it really drilled it into my... like in my mind that that was how it worked in the actual world, yeah, instead of just the theoretical that everyone is different, kind of, but... yeah.
Scarlett didn’t know how much pain to expect and found herself ‘usually looking up like how often should you be getting pain, and what is a ‘normal’, quotation marks, amount of pain? And how many clots you should get normally’. Poppy agreed that there was a lack of ‘forewarning’ about the possibility of period pain. Lucia agrees that young people should be ‘taught more about the side effects and stuff’.
Emily was shocked about how painful and bad her period pain was. She found it ‘worrying’ the first time she got the cramps and thinks there should be more awareness.
Emily was shocked about how painful and bad her period pain was. She found it ‘worrying’ the first time she got the cramps and thinks there should be more awareness.
I don’t think... I don’t think pain is talked about enough.
Yeah.
It was quite a shock to me when it was that painful and that bad, but I... It’s almost, I forget how painful it is until I actually have cramps.
Mm.
It’s quite hard to describe something that you’re not experiencing, so it was quite a shock to me that they were that painful and that bad.
Yeah. So, would you have any thoughts on that and whether they’re...?
I think it should be discussed more because I think... Sorry, my brain’s gone completely frozen. And yeah, I think it’s... it’s quite important to prepare girls for the pain that they could... I know that I’ve got some friends who don’t have cramps at all, but very lucky, but it was... it was worrying when I had the... the... the cramps for the first time because they’re quite a different feeling because they’re low down and they’re sort of like an aching, throbbing pain.
Mm, mm.
Yeah, I think there needs to be more awareness about it.
Some wanted to know more about real-world experiences of period pain, including from friends, family, period tracking app chat functions and social media [see Learning about periods: information from other places]. Sarenna wanted to find ‘people’s actual words explaining that you’re gonna get cramps, or something like that’.
Candice tends to focus on social media posts when they are relatable: ‘It’s just the moment you hear like something that actually links with you. Like, say they mention like a side effect you’ve realised about yourself, something that’s changing about you that you’re actually looking out for, and then you hear them mention it, that’s when I’ll actually start paying attention to that one video’.
Finding other people’s comparable or ‘relatable’ (April) experiences online could be really helpful, though Scarlett noted that it was sometimes it was difficult to find other teenagers and young people’s experiences. For Zaynah, finding other people’s experiences that she could relate to her own was ‘in some ways like a hug to know that like other people are experiencing this, and like to even read about people’s stories, to think that like you’re... you’re just not alone, like other people do have a tough time dealing with, yeah, like pain’. Jayden acknowledged that some people will be reluctant to share their experiences: ‘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, 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’s not helpful for people that need advice’.
For Ivy, seeing other people’s stories that she could relate to helped her realise that her pain wasn’t ‘right’ and that she could ask for help.
For Ivy, seeing other people’s stories that she could relate to helped her realise that her pain wasn’t ‘right’ and that she could ask for help.
And when you looked for information, you went to the NHS website?
Yeah, I remember, and just sort of typing in ‘period pain’ and that was the first one which came up, and that sort of led on to my more deeper research into different articles, news extracts, even using so... social media like TikTok, especially TikTok which really influenced me, you know, just putting ‘period pain’ into the search bar and seeing doctors who have actually gone onto that plat... and onto that platform as influencers and saying “if you’re in this much pain, it’s not normal”, and gi... and they sort of give more ed... and they gave me more education on social media a... about these things, which are so needed.
And how did that... so you said that influenced you: is that something you found really helpful?
Yeah, definitely. So, I think because as teenagers we’re... we’re so on social media all the time, on TikTok, Facebook, you know, Twitter, Instagram, we don’t really go onto Google and start looking at articles, because teenagers aren’t really interested in the news half the time, and young people, so it just really helped. And like even on my feed, I... I was seeing stuff about period pain and I remember seeing someone who was documenting their experience with end... endometriosis – they were in their early 20s I believe – and they were... they were showing themselves on the floor bent over in pain, and also experiencing their... and also explaining their symptoms, and I re... remember being like: ‘I relate to this so much and something isn’t right here and I shouldn’t be experiencing this pain.’
What young people would have liked to know about managing periods and period pain including medicines and medicine side effects
Young people also looked for practical tips and advice for managing period bleeding and period pain, including what products were available for managing bleeding, which ones to choose and how to use them [see Managing period bleeding]. Willow Z thinks people should be told that ‘there’s more of an option than just pads and towels, like pads and tampons. It’s like they should probably be talking about menstrual cups, you know, you’ve got different types’. Bella Z was given a voucher from a family friend for a ‘website where you can buy like period products. ’cause there was like period pants and like the cups. So I think if people knew about that, and actually that would be quite helpful for a lot of people’.
Lily learnt about the menstrual cycle at school but used Google to work out what period products to use, as this wasn’t covered.
Lily learnt about the menstrual cycle at school but used Google to work out what period products to use, as this wasn’t covered.
Can you remember what they said in that assembly or... or what sort of things they covered, and was it just girls or was girl... was it like mixed?
It was mixed and it was more of the menstrual cycle and what happened on it, and it was sort of the biological side, but I... I don’t think I’ve ever had an assembly or a talk on what sort of products you should use or when you should use them and sort of like the level of heaviness to lightness and how to sort of differentiate... differentiate them I guess, which I guess as kind of hard ’cause you had to sort of figure it out yourself or ask other people.
Yeah, and I think that’s really, really interesting and... and something that I’ve heard from quite a lot of people. So that kinda process of figuring out kind of level of heaviness, level of lightness that you figure out for yourself, can you tell me a bit about kinda what that was like for you, maybe how you did that working out?
I think I did a lot of Googling. I... I did search up online sort of like when you should use pads or what’s better, pads or tampons, or sort of they were the only sort of options in my mind anyway before we had period pants and DivaCups and loads of other options. So, I sort of just Googled things, and I went into shops and sort of went: ‘right, OK, how heavy am I?’ And I would just kind of sort of guess and would just think, ‘right, OK, I’ll get normal ones. If they’re not... if they haven’t got the right amount of absorbency, then I have to try heavy ones,’ and I sort of just sort of trial and error.
OK. And did you ever... so when you Googled it, did you... what did you find? Did you find any kinda information that was helpful? What was that like?
It was... it was sort of helpful. It was... there is a lot of information out there. I... I can’t particularly remember what I would Google, but it would be something along the lines of sort of: ‘when should you use tampons and when should you use pads?’ ’cause we were educated a lot about toxic shock syndrome, quite a lot with tampons, ’cause one of the girls in my school passed away from it. So, we... I think we were educated a lot more than other schools were educating others on it. So, I was a bit scared to try tampons at first, so I sort of was more Googling pads and absorbency. And you see a lot of adverts online for... for pads, and so I sort of just, I guess, trial and error with Google and a mixture of going into shops and... yeah.
Young people also sometimes looked for information to help them with managing period pain. Chloe thought that ‘it would be like helpful to know like why you’re getting cramps, or like how to help ease them and stuff’.
Reham looks online and on social media for advice about practical things she can try which might help her with managing her periods and period pain. She would also use it to find out when to see a doctor.
Reham looks online and on social media for advice about practical things she can try which might help her with managing her periods and period pain. She would also use it to find out when to see a doctor.
Have you looked anywhere... what about things like social media?
Social media: I have looked there a few times, and it has helped me a bit, like especially with female creators, like that’s... and that’s what I ever I go onto, and they’ve helped me a lot and they’ve told me about like: “Oh, this is what you should do, this is what not to do, this would be very bad for you, this would be very good for you,” like they’ve given me actual advice that I could use.
OK. So... so influencers, is that Tik... TikTok, Instagram, a bit of both?
Some TikToks, and yeah, usually TikTok.
So, what sort of things have they recommended that you’ve found helpful?
They... some of them have recommended me like things, like different foods. Like some people have told me to put honey and like, not boil, but like heat up a lot of... some milk, which sounds really weird, but honey and milk... hot milk, actually go well together and it actually helps.
OK.
And like they’ve given me different things like: “Oh, put a sleeping mask on, that would really help your kind of...” why it might help you with your dizzy and dizziness, if you do feel that. And some of them have even given me like yoga things, like: “Oh, people this... sleep in this position and that would help you, do this.” There’re some pressure points that you can use, which I think are really helpful.
OK. So, you’ve actually found those things incredibly helpful, and they’ve been things that nobody taught you at school, but that you’ve picked up from influence, so people who’ve got experience of it?
Mm.
OK. Hot milk and honey sounds great. And then, so yoga positions and pre... pressure points,—
Yeah.
—and things to help with sleep. Are there any things that they’ve said definitely don’t do, or things that you’ve tried that haven’t helped?
Well, some of them have been like trying to... some of them have tried to like... how to explain them very well, but some of them have like tried to be like: “Oh, you could talk about this to a doctor, or something, but from my own experience doctors don’t usually do much.” And some of them have even tried to be like: “Oh, you can use it for a lot of things to get what you want.” I agree, since I used to do that in primary school, but that’s not what I’m looking for specifically. But it wouldn’t... it would give me some advice, but it wouldn’t be helpful to me. Like it might be helpful to others, but I wouldn’t relate to that.
Yeah. I’m interested in your experience that doctors don’t usually do a lot: are there things that you would like them to do that you would find helpful?
I would like them to look more into, like, periods instead of just the effects of it. Like I’d like to see how it can... and like how it can make me feel better, how I can feel better when I’m on my period. But I don’t really have a clear idea of what they could do, no.
In order to look things up online, young people needed to know what to search for, including what sorts of options there might be for helping with periods and period pain. Iris agreed that knowing more about what the possible options could be would be helpful. She found mefenamic acid really helpful, but until she went to the doctor she had ‘never... never heard of any of those kinda thing, and I think the only things that I heard about, which were mainly from my mum, I think were basically paracetamol and ibuprofen, and I hadn’t... I didn’t know anything else about those kinda things that you could use’.
Abi wishes she had known about options for managing periods and period pain, including medicines like Mefenamic acid or using contraception medicines as treatment for period pain.
Abi wishes she had known about options for managing periods and period pain, including medicines like Mefenamic acid or using contraception medicines as treatment for period pain.
And also, ways to manage it as well, what to do, because I just... yeah, I had... I thought, ‘you just got to put up with it, and there’s nobody...’ Like I didn’t even realise that you can get contraception – not just for contraception – but also to stop period pains as well. Because I feel like that would have been nice to know earlier, even if I hadn’t gone on contraception earlier, just to know that there was other options available when I wanted to... to do it.
Yeah. Because you talked really powerfully about feeling almost a bit kinda pessimistic and a bit that you didn’t know... Look I hope...—
Yeah.
— I didn’t mean cope, but that you... dreading them. So, something about knowing that there might be things out there?
Yeah, definitely, and that there is other options available for you. Like, well, I remember my Mum said “mefenamic acid” I thought, ‘I’ve never heard of this in my life, what is it?’ and that helped me for a little bit of time. So even something like that, which I’d never heard of before, would have just been nice to know. I was thinking, ‘why have you been hiding this from me this whole time?’
Yeah. And actually, so if you hadn’t heard about it from your Mum, or you haven’t been able to find out in that way, that’s just not something you would have known to know about.—
No, because I spoke... I remember I spoke to the GP, and she really wanted to put me on the pill before, and I had to ask: “Oh, I’ve researched this, can I have this?” and I had to ask for it, which I got a prescription for that. And that... that was good, that was like a short-term solution for me that it did help for a little bit. And so, yeah, if my Mum hadn’t told me about it, then I wouldn’t have... I definitely wouldn’t have gotten that prescription.
When medicines were suggested or mentioned as possible options, whether by friends, family, health professionals, or on social media, young people would often look on the internet for information, including about other people’s experiences of taking these medications, to help them make a decision. A number of people looked for information about the possible side effects with hormonal contraception medicines. Rahma found an online list of contraception types: ‘they sort of had a list of all the different contraception types and that’s kind of how I realised: ‘OK, a lot of the side effects make sense,’ ’cause they list some of the side effects. And I think, yeah, what my friends are telling me about, makes more sense’. Willow Z thinks that ‘people should be taught about, like, the pill, I think, and all of the side effects you could possibly have on them in a way that makes you feel safe, because I was quite scared to take Rigevidon because it was like: ‘oh, heart attacks, strokes,’ all of this. And for me, I have health anxiety so that really scared me’.
Jayden found out from a friend that the ‘progesterone-only birth control can help with cramps without interfering with being on testosterone’ and was then able to be prescribed this from his clinic. Candice explained how she looks for more information if she wants to find out about medications, side effects, or changes she notices: ‘so it’s sometimes like the side effects or if I wanna take this medicine, or like if like there’ll be like a sudden change in something in me, I’ll like Google it up’.
Lily looked across a range of sources including the internet, social media, and her period tracking app chat function to explore the possible side effects of hormonal medication for period pain.
Lily looked across a range of sources including the internet, social media, and her period tracking app chat function to explore the possible side effects of hormonal medication for period pain.
Do you reckon there are other kinda worries about hormones? I mean, you talked a bit about side effects and the big leaflets, but did you find anywhere else you looked up about that? Did that come up in the Flo chat or... or on social media, TikTok, Instagram?
Yeah. I... I think there is a lot... a lot of worry around sort of these... these products to help, because, you know, I have a history of, like, breast cancer in my family, and so the mini pill, it... it... one of the first things it says on... on the side effects is... is breast cancer. It’s like the first thing you possibly read on it. And I think that would instantly put off a lot of people.
Yeah.
And then you look into sort of the figures and statistics about how many women it affects, you know, it might be one in a million. And I think people just don’t look at that and they just think, ‘no, not for me. This is too scary of a side effect. I don’t wanna do it.’
OK. So, something about balancing how we give the risk to make it a bit more in context might be helpful?
Yeah.
And you got most of that from the packet insert, is that right? Or would... was it—
Yeah.
—from websites? Or were you given any other links?
I did have a look on Google and sort of those sort of links. And the NHS website I did look at. And it does come up with the side effects. And you sort of read the statistics on those different apps and you sort of level out: ‘OK, what’s the likelihood of this happening to me?’ And you sort of weigh that up and you think, ‘I’m in pain. I need to regulate this. I’ll just try it.’ Because you’d... you’d sort of weigh up the statistics on websites and... and Flo. I definitely did look at Flo with all of this, and I... I saw that people were still recommending it, even though you had all of those side effects, and I just thought, ‘if these people think it’s all right, then I’ll give it a go.’
OK, brilliant. But you think that that is a worry for lots of people?
Yeah. I think if... if we didn’t have access to the internet and support from other people that are online with the same experiences and worries, I think we’d all be a lot more worried and a lot more anxious about... about these sort of things, definitely.
Yeah. So, it’s actually, that’s been a massive source of comfort for you?
Yes, yeah.
Having a place where young people could find reliable information about options for managing period pain, or one place where there were trustworthy links to more information was appreciated. For Abi, the ‘NHS website was where I saw most of the side effects’ because ‘any time I would start a new contraception, or I’d start a new medication for it, I’d always look on the NHS website, and like I wanted to know the side effects and things like that’.
A number of young people had looked for advice about what to do next if medicines had not helped with period pain, or if the medicines advised was not something that a young person felt able to take. Hannah has a type of migraine which means she can’t take combined hormonal contraception containing oestrogen. She has also not found it easy to find advice that connects with her experience of vomiting when she has period pain, which has made it harder to find information that feels relevant to her: ‘a lot of people have really bad pains, but I've not found many that actually throw up quite a lot from it. So, I think that's a big factor, and a lot, because a lot of people do just go on the combined pill and that's just not, I'm not allowed to do that. So, it's there's not many other people like, it's just quite a lack of specifically what's wrong. So, it's there's not many other people like, it's just quite a lack of specifically what's wrong, like my problems if you know what I mean so it’s quite hard.’
Hannah has found looking for information about medication options for period pain a bit difficult because of her experience of medicines that she can’t take or that haven’t helped, and has found it hard to find guidance about what to do next.
Hannah has found looking for information about medication options for period pain a bit difficult because of her experience of medicines that she can’t take or that haven’t helped, and has found it hard to find guidance about what to do next.
And you said that you've done your own research and reading, can you remember where you kind of looked and what you're looking for and how you how you found that?
Yeah. Well mainly it was just all been through like Google just searched mainly like. different like treatments for it or like what you can do. And then when I start, when I knew I couldn't take the combined pill and desogestrel didn’t work for me, I started looking at other types of birth control because that's probably something that I've leaned towards the most because I'm going to go to the doctor soon about the Mirena coil.
Yeah.
Because. I feel like if I go with, but if I go and like say this is something that I'm looking to, they might then go oh OK yeah. Because if I because like I when I went the first time, they kind of just gave me that and then rushed me off and then didn't like and then it didn't work for me and I've got nothing else.
OK, so you did your own research and it was mostly through Google. Were there sites that you tended to look for and did you find it? Did you find them helpful or there are things that you would like to have found and weren't there, I guess?
Yeah, I think I looked a lot on like NHS websites. I can't remember any of the websites specifically, but there wasn't really… It would mainly just be like saying things like this could be endometriosis and not much else. And then the like treatment options. A lot of them said mefenamic acid, which hasn't worked for me or going on the pill, which again hasn't really worked for me. So, there wasn't anything else.
When to go to the doctor or ask for advice was something else young people had tried to find out. Eidra explained that this was ‘stuff that I looked up myself’. Some people, like Lola and Ivy found useful information online (including from doctors speaking on social media) about when to ask for advice or see a doctor about periods and period pain. Lola said that while she hadn’t especially looked into this, she knew through conversation that ‘a couple of my friends use TikTok ’cause there’s a lot of really good doctors on there that will talk through things and there’s getting to be more that will talk about periods and stuff – which is great’. Ivy was encouraged to ask for support when she put ‘period pain’ into the search bar and seeing doctors who have actually gone onto that platform as influencers and saying 'if you’re in this much pain, it’s not normal'.
Other people, like Hannah found the advice online about when to ask for further support or healthcare less clearcut.
Emily finds social media posts that give permission to rest when you have periods and period pain reassuring.
Emily finds social media posts that give permission to rest when you have periods and period pain reassuring.
If you... or do you ever get kind of influencers or information on... on Instagram or TikTok about periods?
On Instagram, there is... there is quite a lot of stuff that’ll sometimes come up. Hon... honestly, I probably spend a bit too much time on Instagram; I don’t remember half the things that are on there. But some of it is advice on how to deal with it. Quite a lot of it is... it... like it’s... it reassures you that it is OK to have periods, but it is OK to have a day off, like if you’re not feeling right, and just sit down, yeah.
OK. So, is that something you found helpful?
Yeah. Sort of that reassurance that I don’t have to keep going, that I don’t have to do things, that it is more than OK than, to on a weekend, just have a... like a day off.
Bella said that she would like ‘a whole guide of things that can help with periods and period pain. And I think there are a lot of guides, you know: eating well, you know, painkillers, medications, water, exercise, just the general healthy things can help you feel a lot better’. Jade ‘would have liked to have been told about like different methods for just like easing the pain, and stuff’.
What young people would have liked to know about health conditions that can be associated with periods and period pain
Many of the young people told us that they wanted to know more about health conditions that can be linked with, or contribute to, period symptoms. Many felt they hadn’t been taught or learned much about these health conditions. As Rosie explained: ‘sort of illnesses that affect your period, I would have liked to know about, like, you know, endometriosis or PCOS. I didn’t know what they were till I had sort of like access to the internet really’. While these were things that young people might want to look up and find out about, some recognised the difficulty that before you can look something up, you have to know that there is something to look up.
This included a health condition called Toxic Shock Syndrome (TSS) that has been linked with using tampons. While Lily was at a school, where there was widespread education about this condition. Grace learned about this from reading tampon boxes and online.
The connection between periods, hormones, and emotional or mental health symptoms or conditions was something that a number of people, like Abi, told us they wanted to know more about. Emily Z and Eidra told us about having a diagnosis of pre-menstrual dysphoric disorder (PMDD) [see Healthcare: conditions associated with periods and period pain]. They both felt that there was not enough education, research or conversation about PMDD. Other young people, like Zaynah wished that they had been told about the possibility of becoming anaemic (low in haemoglobin or ‘iron’) with period bleeding.
Others had heard about a health condition called polycystic ovarian syndrome (PCOS). This is a condition that can be linked with irregular periods, and with other hormone related symptoms linked with hyper-androgenism, which can be found on a blood test or linked with symptoms like excess facial or body hair.
The diagnosis of PCOS requires caution in adolescence because some features linked with the diagnosis can be changing in that time, and guidance suggests that some young people should be considered ‘at risk’ of PCOS until 8 years after their periods start.
Anayaa pointed out that if you don’t know about the possibility of a condition, then you won’t know to ask a doctor: ‘I feel like PCOS quite, like, affects loads of women in their life, and not being taught that in school, quite like... ’cause of the symptoms of PCOS, you don’t... if you don’t know it, then you don’t know that you have it, so you don’t go to a doctor about it, which I feel like being undiagnosed with that and not having medication for it is like a bit weird’.
Abi said that people had asked her: “Oh, have you been tested for like these different...” and like “PCOS?” or something, and I thought, ‘that’s quite scary for you to say to like a 15-year-old girl that’s just started her period,’’. This could lead to uncertainty as Rosie explained: PCOS was sort of thrown around, and I still don’t understand what it is now, to be honest, it’s just sort of like a word that you hear to sort of like explain away every problem with sort of your reproductive system. On the other hand, Rahma feels that awareness of conditions like PCOS is improving ‘I think awareness is very good. And I think people’s... people spreading awareness has caused me to be... become aware of things like PCOS. So, because of that, I think just growing older is what, you know, helped me realise all this stuff’.
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.
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.
Endometriosis and adenomyosis were other health conditions that young people looked for information about. Endometriosis is a condition where tissue similar to the womb lining can be found outside of the womb. It can cause no known difficulties or can be linked with symptoms including painful periods, pelvic pain, and heavy period bleeding. Adenomyosis is a condition whereby the womb lining tissue grows into the muscle layer of the womb, and which can also cause painful or heavy periods. While it was thought to be rare in teenagers, it can occur.
Ivy saw the conditions mentioned in an information post when they looked up period pain: ‘in primary school I’d never heard the word, I literally hadn’t heard of the word ‘end... endometriosis’ till I was about 12 or 13 when I was actually doing my own research and I was looking on the NHS period pain sort of website and seeing what conditions it’s re... related to and seeing the big list of conditions’. For other young people, someone else, like a friend, relative or doctor, mentioned the word to them, and then they could look up more about it. Grace learned about endometriosis by chance when watching a TV programme. She thinks ‘that could have been mentioned to me before’ because it’s a ‘serious condition’. Lily thinks people should be educated about endometriosis, because ‘endometriosis is... is a big one because I think there’s a lot more people out there that have it than... than they think. And I think because I wasn’t educated on it in school, I’m still a bit blurry about it and still a bit unsure about it.’
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.
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.
When Scarlett and her mum were looking into her painful periods, they did ‘a bit of research on the internet to see, you know, what it could be, and endometriosis is something that kept coming up’, though it was hard to find anything specific for her in terms of research or information at age 11.
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”.
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.
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