Young people's experiences of periods and period pain

Absolutely. So, even just be given a booklet about... I think there... there should be, like, a sort of pamphlet about every single medication which can be given to someone. And especially when you’re 12 or 13, and you don’t really understand medical words, it should be simplified and there should be like, you know, pictures saying, you know, “you take this once a day,” or this and that.

And has anybody ever told you what to do when you’ve tried something, so they’ve given you a medicine, can you remember anything about the kind of advice you got about what to do next? Or what to do if it helped or it didn’t help or... or reviewing things?

Yeah, so I was kind of told like you can try this medication, so-and-so, for two or three months and see how that will work, and what I found annoying was a lot of things would take months, and even like six months just to start working. So, especially for the pill, I found it took three or four months still to actually be effective, and during those first few months when I was feeling quite low and kind of de... depressed and more anxious, I was still experiencing the pain. So, I think it just takes time to settle in. And even though I was informed about that, I wasn’t really given regular reviews, like I had to actually go back to the doctor’s myself and say “this... this isn’t working. I want to discontinue this”.

OK, and that... I think that was at the heart of...?

Mm.

So, would you... would you like to have had a: let’s review things in six months’ time?

Yeah, so I would have liked, you know, things in place—

A plan.

—and like actually then booking the tele... the telephone appointment rather than putting that on a 14-year-old to like book this in six months’ time, phone up, and stuff like that

OK.

—so regular reviews, yeah.

When people come and see us often, the first thing we'll do is offer you what we would call medical management. That can be things like painkillers, tranexamic acid to reduce how much bleeding you have or hormones. And that can be hormones to try and reduce how often you have your periods or even stop your periods altogether.

We know that all of these approaches are safe. We wouldn't prescribe them if we didn't think they were safe. And people often worry that we just masking your symptoms by giving you treatments like this. But actually, what we're doing is trying to understand what's going on. Because certain types of symptoms might respond to certain types of treatments, but also, we might be treating anything underlying that's causing the problem as well.

So actually treatments like hormones have lots of different reasons why we would suggest them.

So, then we went to the doctor’s and then they managed to prescribe me some mefenamic acid. And then I’ve been... I’ve been taking that ever since actually and it’s like, yeah, three tablets once every... once after breakfast, lunch and dinner, and it’s... I don’t get period cramps anymore.

Had you researched up any options or did she give you any options of things you could try?

Yeah, so she said... she said I could go on the pill. She said I... I think she... mefenamic acid was one of those things that she said was good and I think she suggested this one thing, she said, “If you have really, really heavy periods and bad cramps, and this is a good thing.” But she... yeah, she gave me lots of... lots of very valid options.

Mm. And can you remember what it was that made you think you might try mefenamic acid first?

I think... I think that was the one that she most strongly recommended because I think my periods weren’t... they were... weren’t particularly light or weren’t particularly heavy, leaning slightly more towards the heavy side, but they weren’t... they weren’t completely crazy, but... And then I think... I think the mefenamic acid seemed the most... the... the best... the best option for my lifestyle; I don’t think it seemed like it would affect it that much, and then it wouldn’t be much of a change, and... yeah.

OK. And it’s worked?

Oh, yeah, definitely, yeah, 100 percent it’s worked.

That is fantastic.

Yeah, it’s really, really good, yeah.

So how do you feel about them now, now that you’ve kinda found something that does work for you, does that make a difference?

Oh, definitely, 100 percent. I think I was actually, yeah, really terrified of my periods, but I think now having mefenamic acid, or knowing that there’s a way that actually does work, I think it’s... it’s made me feel so much less stressed and a lot more comfortable with my periods. It’s more just the bleeding that I have to deal with now and obviously the emotional aspects, but re... it’s really doesn’t impact me that much actually.

I don’t... I think it was probably one of those ones which I’d be leaning less... less towards. I think I’d rather... I’d rather take something that was also more dedicated to period pain. I’m not entirely sure how to describe it, but I think I felt I... I’d feel more comfortable using... using something else rather than the pills dedicated... or more used for something else like getting... getting pregnant rather than... rather than period pain. So, I think it felt better to use... yeah, to use something that was specifically for that, yeah.

Oh, massive game changer for me. I know it might not work for everyone, but for me I think, yeah, if you do have really bad cramps, which actually do affect your lifestyle, it’s actually really beneficial to get something like that ’cause it’s really changed my like view on periods completely.

And although I feel like doctors and these, like, commercials for like Feminax saying... saying like: “Take... take these two £5 tablets and your pain’s gone in 20 minutes.” Although you can take that, I feel like you can try and combat your period pain, but once you take the tablets you’ve got to deal with the... the... the side effects with those tablets, so... I take naproxen which can obviously cause stomach ulcers, so I have to take omeprazole with that, which I don’t like taking ’cause it just feels a... a bit weird inside you. So, there’s a lot of things I have to con... consider as well.

So yeah, I think there’s just... I think there’s a lack of information and knowledge, and people aren’t informed about what’s gonna happen to them. So, I was told just to take the pain medication when I’ve got my period, but I wasn’t told when to take it or the side eff... effects of that, which would have been so important, especially on naproxen, which gives me quite bad brain fog – it makes me feel quite sick.  I wouldn’t... I didn’t really know that was gonna happen to me, so I was quite shocked because I didn’t know was it not actually combating my period pain, and was the sickness from my period pain, or from the... the tablet? So, I think definitely having more leaflets and in... information about that would have been so ben... beneficial for me. 

And yeah, so it got really bad and my Mum said, “Right, well, we have to do something about this.” So, I... we booked a doctor’s appointment and they prescribed me with some tran... tranexamic acid, which really helped. Yeah, so that really helped. I still had to take that every time because I tried to not, but it was just awful, you know, when you wake up and you can’t do anything about it and it’s really painful. And then after a while it was like that, and they just stopped, and they went away, but it was incredibly awful and, yeah, it was not a good experience for me.

And is there anything that... that it would be helpful to reflect on about when you went to the doctor and what that was like?

Yeah. So, I went to the doctor’s and it was a female and she was very, very supportive and just said, “Yeah, you know, we can pres... prescribe you some of these, you know, they work in part, really strong pain relief and make the periods less heavy,” and yeah, I was very lucky to have a good experience at the doctor’s and it was very simple and straightforward. And I was happy that the first medication that they offered me worked as well because I know obviously some people, you know, there are... there are quite a few different methods and they don’t work as well for some people, yeah.

And did they offer you any other options if it didn’t work or did you have a kind of idea about what to do if they hadn’t helped?

Yes. So, they did offer me the pill for my age. Right, I’m not sure... it’s not the one where you take it every... I think you have to take it every morning, and my Mum was quite reluctant to let me... to... for me to go on that just because she didn’t want... I think she was on it a while ago and she didn’t want it to be... she had a bad experience. Or not necessarily a bad experience, I just think she just thought that it wouldn’t be the best option for me, I’m not really sure. So, she... she just said, “Oh, you know, we’ll go with the tranexamic acid because that means you...” I... I wouldn’t have to take it every morning, that was it, yeah.

But I’ve had one GP visit about how bad my period cramps are, and it was on the phone, and she just said, “Have you heard of tranexamic acid?” And I said, “No,” and she sent me a link to look at what the tablets were. And she said, “Well, we’ll do that then,” after like, you know, not much sort of talking about it or explaining what they were. She said, “I’ll send you a link, read that and I’ll, you know, put you down as a, like, prescription and you can come and get it,” and that was sort of the phone call.

And I read this sort of information page that she’d sent me. And I didn’t really want to go on it because one of my other friends had been on it for period pain, and she said it didn’t work for her. And reading the side effects, I’m sort of like always apprehensive of, if this isn’t gonna like drastically change anything, I’m not gonna risk anything. So, you know, they kind of asked me if I wanted to go on Accutane for my acne earlier and there were, like, horrible side effects, like strokes, and I’d have to go on birth control as well because of, you know, sort of it causes birth defects.  So, I was just like, I’m not bothered enough about my acne to like risk all these things. I’m quite functional, you know, a practical person. But yeah, so...

And... but did ever try... did you ever try the birth control for your...? No, and... and that wasn’t offered for your periods?

No, she just said “tranexamic acid.” And she was like: “’cause that’s what we usually offer the first time,” and she’s like: “if that doesn’t work for you, I can move you up to something else,” and I was like, you know, a little bit confused as to why I couldn’t have something stronger after sort of explaining all my symptoms, and things like that, so... yeah.

And so... so how did you find explaining the pain and... and...?

I can’t... usually when I’m asked about it, I’ll just explain like the physical symptoms, rather than like how painful it is, because you can’t really convey pain to somebody. But also like, I guess, it’s less believable, or like it du... you can’t conceptualise how much it hurts, least of all if you’re a man. So, I tend to sort of say that I faint and vomit and I’m bedbound rather than I have really bad pain, because like physical symptoms are more likely to like get you listened to. Yeah, so that’s what I explained to the GP. Yeah. So, I had that phone call.  And I said to my Mum that I didn’t want to do tranexamic acid, and she said, “OK.” Because I’d meant to ring her to ask for the insert or, you know, just—

You mean the implant thing?

Yeah, just for my arm, because I was too scared to get like an actual IUD or, you know, have tablet birth control because I’m very scared of side effects.  And that’s like a big thing for me. I’m very scared of medical sort of, you know, unnatural things happening in my body, because I already have really bad periods, so I think... And then some people say it makes it worse or, you know, their periods are more heavy, and I’m just like: ‘Oh, my God, I can’t imagine that happening,’ so I just kind of stay out of it. Yeah, I just sort of let natural... I just let it run its course, even if it is like terrible. ’cause there’s not much sort of advice on what to do with yourself, you know, like if you don’t want to go on birth control, the side effects are too much.

So, then he gave me some... I’m trying... I can’t remember what it was called, but he gave me something that was supposed to like put... like stop the ble... not stop the bleeding, but like at least make it a little bit like lighter, so it wasn’t as heavy, and then he gave me something that was supposed to help with the... I think that was like Buscopan, or something like that, to help with the cramps. But then he was saying like obviously if you wanted to kind of stop it: “You... you might be able to go on birth control,” or something like that, but he said... like the doctor was saying that the... at the point... at this minute, there’s no... “don’t start taking birth control now ’cause you don’t know... like there’s so many side effects of it, that you might... like try this first, and then see.”

OK. OK, and... and have you tried those things that they gave you?

Yeah. So, I mean I don’t know if they... I can’t tell if they actually work or not though because like obviously when I used to get them and I’d take like paracetamol and ibuprofen, and stuff, but like I don’t think it really... I don’t know if it’s just me, but I don’t think it... I can’t really tell the difference, like it doesn’t really seem to help, so...

No. OK, and what... what was your kinda hope when you went to the doctor? Did you have any...?

It was more just to see like if there’s anything that could help the cramps not maybe hurt as much, because like they were bad at that point. And then... but then, even then like... so even with like this... like the Buscopan and the stuff they gave me, it didn’t really seem to help though, so...

OK. And did you have a plan about what to do if it didn’t help?

I think he said like if it didn’t help, then he was like “then you might have to take birth control.” But then, like, even my Mum was saying, “maybe just leave that bit for...” ’cause like she was like “’cause you’re on 14 at the minute,” and she had to take it when she was younger, and stuff. ’cause she... ’cause she had painful ones too, and she was like: “I wouldn’t take it just yet because there’s loads of like side effects and stuff like that that you can get from it.”

So in the lessons that you’ve had at school, has anybody ever talked to you about kind of when you might want to get advice or... or anything else about it?

I’d only be about... about 12 or... or 13, and they just wanted to go straight to biological in... in... inter... intervention, so they... they put me on co-codamol when I was 13, which obviously made me quite dizzy and tired at school.

Yeah, so I sort of went to the doctor when I was about 13, 14, I think I was about 13 though, and I was given co-codamol, which I later found out I shouldn’t have been put on early, by a different GP. So, they weren’t really following the correct policies and procedures for that time, and that just made me feel so sick.

Yeah.

And although it did help with the pain, I shouldn’t have been 13 and struggling to stay awake in school

Awake in school.

—on my period because I was taking these medication

And like I remember doing my GCSE English exam, which was, like, poetry, so that was two and a... two and a quarter hours, and I was doing that while taking codeine tablets, which make me so sleepy, and obviously the brain fog as well, so it does have such a big impact on your studies ev... even if you can control them with medication.

The medication has... no... Yeah, and actually asking about impact on things like exams was one... and that’s really difficult when you’ve worked so hard.—

It is, after working so hard for 10 years in education and then it comes down to that final exam.

Dad: And... and obviously can’t take things orally,—

Can’t take orally.

Dad: —so it’s... got limited options.—

And the... and the suppository forms, you’ve tried the paracetamol,—

Dad: Yeah.

—which does... the botty pill helps.

Dad: Yeah, botty pill does help, yeah.

Mum: But paracetamol does—

But paracetamol and Nurofen upset the stomach.

Mum: Yes, something weird. We’ve... I’ve tried giving it to her orally mashed up in things, Nurofen, and that gives her a terrible tummy.—

Leila: Yes, yes.

Can you take syrups if it was like Calpol or...?

Mum: No.

Dad: No,—

No, no, no medicine, no.

Dad: —ooh, no, no, it comes straight...

[overtalking]

Dad: Stand well clear, yes.

Mum: And we have told them that in hospital, and they take no notice, give it to her anyway, and then end up with it on their shoes.

Dad: Yeah.

Mum: Yes.

You can but try.

[chuckles]

Mum: Like I say.

We all need to learn the lesson about listening sometimes.

Dad: Yes, listen to the parents, yes.

Mum: Yes, yeah, “don’t try that, no, please... oh, dear.”

OK. Yeah. I think—

Mum: And they’re like: “Oh, no, I can squirt it down the side of her mouth,” and you go: “I really wouldn’t.”

But that there... there are lots of aspects of treatment, and not just periods, but treatment that I think... just like when she haemorrhaged that they... they said, “Oh, she’s got to gargle with this,” I said, “Leila never gargled with anything.” “No, but she mustn’t swallow it,” I said, “Well then, don’t give it to her,—

Dad: No, don’t give it to her.

Mum: —you need to think of a different tre...” And I think that applies to periods that, OK, we can’t take oral painkillers.—

Leila: We don’t need pills, do we?

Mum: We need a different thing. And I think that’s... that’s one of the things that’s really difficult for people with learning disabilities because the ordinary standard treat... you know, [sisters name] might take an ibuprofen for a pain, but that doesn’t work for Leila. But we need more alternative.

So, it's important to say that people with pain shouldn't have to suffer without treatment. It is really important to see your GP if this affects you. And there are lots of different treatment options, including things like hormonal medication. So, lots of hormonal medication is also described as contraceptive. So, contraception. But there's lots of evidence that they can also be used for period pain or period control.

There are lots of types, including things like tablets, patches or devices like implants or coils that people will probably have heard of, but what you can take really depends on your individual health history, and of course, your own preferences for your body. I often encounter people who are worried about starting hormonal contraception, or hormonal medication, especially because of side effects.

Because you used the word ‘stigma’, which is a really important word I think.

Yeah.

And do you feel like that’s something you’ve encountered?

Oh, yeah, definitely. I mean just in that experience of itself, the stigma, tampons, birth control. I mean I have a... on my... on my English side of the family, they’re... they’re quite liberal, they’re obviously... I mean I remember one time my aunt sat me down and she was like: “Oh...” Like, I was talking to her about my periods, she was like: “Oh, why don’t you go on the pill?” and my Mum’s like: “No, she can’t do that, that’s... and she’s not having sex yet.” And... and I was like... and my aunt was like: “No, it’s not just for that, it’s because it stops it.” But even saying to someone: “Oh, I’m on birth control,” that... that’s a stigma, like: ‘oh, OK, you’re having sex.’ But, you know, not saying that’s a bad thing, but it’s not always people don’t go on the pill for that all the times, ’cause they deal with... I know I have a lot of friends who are not sexually active, and never have been, but they go on the pill and that’s because they just can’t handle their periods, so...

Yeah, so it’s a medical treatment—

Yeah.

—that can be used for contraception, it can be used for periods, but it was something that you felt wasn’t necessarily an option that... I mean you’ve also talked, for really good reasons, about why you decided it wasn’t the right one for you,—

Yeah.

—but if you had wanted to try it, would that have been a difficult kind of option to navigate?

Yeah, because it would have been an awkward conversation about sex that when I was, you know, 14, and I didn’t not wanna talk about that with my parents, and I did not want, you know, my Mum... I didn’t really wanna talk about it with my Mum because she was a bit... My Mum’s not like super-strict or anything, she... I remember she told me about sex about the same time she told me about periods, you know, she was just like: “From 16 your... it’s your body, your choice, I just want you to be safe.” So, she... right, she educated me, but I felt a bit awkward, and also I didn’t really wanna have that conversation, and also with my Dad, I didn’t want people to know, like I didn’t want people to perceive it like that, ’cause I just felt a bit awkward about the whole thing.

Would that have been something that worried you when you were going to the doctor’s that your parents might have found out, or that—

Yeah.

—if the doctor offered you the pill in front of your...?

Yeah, that sort of thing. And even if I... and, you know, became sexually active, you know, having to go up to the doctor’s and them... them asking the questions and my parents being there, it’s just a bit... You know, I don’t... I’m not... I don’t... I’m not particularly that close with my parents, but I wouldn’t... I wouldn’t really... I don’t really tell them about that aspect, it’s quite private, and like private with everyone, so I felt that I’d be a bit awkward about the whole thing.

Well, so I was put on the contraceptive pill, which I never actually took; I never actually took. And I was just doing my research and I was talking to my other friends who’d been on it, and it’s just, I think I’m quite... I’m very like... I don’t know how to describe this: if my hormones off balance, or my... I can tell my hormones are off balance, and so I like have decided that having a drug that actively changes something like that in me, isn’t like a good idea. I’ve had a lot of friends become like very emotional or like... like they’ve gained a lot of weight and become like very unhappy with themselves. I’m not saying that gaining weight is bad, but it’s like... and had like physical changes they haven’t liked and they haven’t felt physically their best. And I... it’s just not... for me, it’s not worth it, yeah.

So, on balance, that kinda worry about the side effects and things makes you feel like it’s... it’s just not the right thing for... for you?

Uh-huh.

Can you remember anything about why... why you thought you might have been given it or why you were offered it? You don’t have to say if you don’t want to.

Oh, it was for contraception, but I didn’t... yeah, so I didn’t take it ’cause it wasn’t... I didn’t think it was right, yeah.

One of the challenges for us is trying to work out the right treatment for the right person.

We have so many different options that often we just have to go through a few before we can find one that suits you. So, if you find that the treatment really doesn’t work or has side effects that you don’t like, please don't sit at home and suffer or just stop the medicine without coming and discussing it again. Please come back and then we can try to understand what it is about the medicine that isn’t suiting you and also offer you an alternative.

We know that stopping your periods with hormones can be really helpful, and we also know that that's a really safe approach. Some people might want to do that all the time, but for other people, you might just want to do that around the time that something important is happening and that might be around your exams. Or that might be around nice things like going on holiday.

The important thing, though, is that we have enough time to get a bit of a run in. Sometimes it takes a while for bleeding to settle down, or for us to make sure that those hormones suit you. So, if that's an approach you'd like to take, and it's definitely one that we often recommend, then please come and talk about it with enough times that we can get you settled on a treatment.

Don't come and ask us the week before the exam.

Mum: So, what happened then was she said... so you think this is still an 11-year-old child. The gynaecologist was willing to put her on the contraceptive patch, Evra, and I was willing to try it ’cause I couldn’t... we weren’t sleeping, she... it... it was just awful, unbearable, and I thought this cannot be her life. So, she went on the patch in the December and then it was really by the March things started to regulate, and to be honest she hasn’t been back.

She... well, to me, what now she has is normal period pain, what I would have had when I was... when I was a teenager that would have been resolved with paracetamol or ibuprofen.

Scarlett: A lot of the times I was just sitting down randomly and I would get this sharp like stabbing pain in my stomach, and it would go on for like a few hours and I wouldn’t get any sleep. I was thinking, ‘oh my goodness, when is this going to end? Am I gonna have to live like this?’

Mm.

Scarlett: And it was just really just awful.

Mm.

Scarlett: I’m so glad that I have... that I’m on the patch now, that... that the pain has stopped and that I can finally get some sleep.

OK. Great. And can you tell me a bit about your experience with the patch, and with the medicines that you’ve tried?

Scarlett: It’s been quite well so far. I don’t experience any pain unless I like take it off and leave it off for a few days.

Mm.

Mum:  Yeah, she gets the... she gets the... you know, it’s a bit like being on the pill, so it’s... and so every... every Friday, and actually you’ll be changing tonight. Every Friday night she gets a new patch for three Friday nights, and then on the... on the fourth, she takes it off and has a... a break for the period. And, well, there’s breakthrough bleeding, I don’t... I’m not really sure what it’s supposed to be called, but she then... the pain that she gets isn’t as bad as what she was having. It still is enough to make her have to take, yeah, Nurofen or, you know, Feminax, or paracetamol, she like alternates, and sometimes she would even ask for a hot water bottle, but it’s nowhere near as bad as it was previously.

OK, brilliant. And have you had any side effects or any trouble taking them?

Mum: Just a rash.

Scarlett: Yeah.

Mum: She gets a... a rash on her back from the—

Is that from the glue?

Mum: We’ve decided... we’ve decided that is better than the pain.

Scarlett: Yeah.

Mum: So, any time it’s annoying her, I say, “What would you prefer, the rash or the pain?”

OK. And how do you feel about your periods kinda now? Has it made a difference to how you feel Scarlett?

Scarlett: Yeah, I just kind of, like, you know, I kind of, you know, like,—

Mum: Mm, it’s OK.

Scarlett: —I kind of just go on with them, you know? Like I can go to school fine now, I don’t really miss any days unless I’m sick, or something, but because of my period, I don’t miss any days, like I don’t miss any days because of this patch, and I don’t miss any days like once I’ve taken a break, because it is so dulled down—

Brilliant.

Scarlett: -than what it used to be.

And do you remember if they gave you any other choices; did you ever try any other treatments?

I think they did, but then they brought up the pill, so I was like: “Yeah, I need that,” ’cause it was, sounded like the best option. And they brought up both of the pills and I thought the... the one that... the progestogen-only one would be way better suited for me.

Mm.

Yeah.

Was it some... had you researched it, or kind of looked up what... had you kind of thought what they might ask and looked it up beforehand, or was it just on the explanations?

I think we did... like they... I think they gave us like a little bit of time to think about it before we actually got prescribed, so we did do a bit or research afterwards, yeah.

OK, OK. So... and where... was that when you went to the internet?

Yeah.

OK. So... and what... do... do you remember what you looked up, or what you thought? What was it about the pill that made you think that’s what you wanted to try?

I think because it wasn’t the one that you had to like get off it and it was just like you were taking it every single day; that was what made it better for me, I think.

OK. So, you were a bit worried about having the... the gap?

Yeah, yeah, I didn’t want that.

OK. Was there anything else about the pill, or hormones, that you wondered about, or you thought about?

I don’t think so; I don’t actually remember, to be honest.

No, no, OK. So, you were just really glad to be offered something—

Yeah.

—that you could take every day?

Mm.

Yeah. And then how... how quickly did it help? What... what was your experience of starting the pill?

I think for the first few months it just... it didn’t really work, not the first months, for the first month it didn’t work, and then it would just... it just kicked in and I just had periods and there was no pain – it was brilliant. But for... it did like... it did... I did still bleed for a lot of it, but then it just... it got rid of them completely and... yeah. And I loved it, but I was like, ‘yeah, I’m gonna get off them now,’ and I’m really happy that I did because it completely like cured my period pain to be honest, being off them.

OK. And the irregular bleeding, was that... you... were you OK to manage that, or was it... was it regular bleeding still?

I think for a bit it did make my bleeding a bit more stranger, ’cause I would just randomly like start bleeding, but it wasn’t that bad ’cause I just wear like a pad if I saw it happen, but it wasn’t like the worst thing ’cause at least it wasn’t pain, so...

Yeah. So, from your point of view, the fact that it had stopped being painful was absolutely fine?

Yeah, that was a good thing.

Yeah. [chuckles] And, did you have... and did you have any side effects or anything on the pill apart from that?

Yeah, I did, my acne got really bad, I did have like pretty bad acne; it’s still like not going away. I have so many scars on my face now because of it, but I guess it’s not the biggest deal ever, so... yeah.

Then I went to the doctors and looked at options and went on Um. The progesterone only pill, I can't.

Desogestrel?

I'd have to. Yeah. That's just it. And you remember? Yeah, I was on that for four months, but it was. It stopped my period. No, it stopped the cramping. But then I was just on my period for four, like, basically three months straight. My skin got really bad, and it didn't help my mental health. So, I kind of came off that because it wasn't help- like it was making everything else worse. And then when I came off it, the doctor said that it might, erm like, settle down a bit. So, like, I mean, off it might have been sorted them and they were fine for me, like, a couple months. but then within this last year and especially the last three months, they've got really bad again where I'm like throwing up and feeling like I'm going to pass out and have to be in bed for like at least a whole one day, possibly 2 every time I get a period.

And I've not, because I can't go on the combined pill because I get migraines. So, then they say I'm not allowed to go on it. So, I'm kind of limited with options.

And I've taken mefenamic acid or like since it started and it used to help, but it doesn't really help anymore.

Yeah, they didn't really tell me much about it because I used to have very bad skin when I was like younger. So going on the pill, that was my biggest concern. So, I asked them about that and they said that that was not like not an option. It like could be a side effect, but they didn't tell me that there was a chance that I was going to be on my period for like 3 months straight. They didn't say anything about that. And then when I did call them up about that, they put, I can't remember what it was called, but it was something to try and stop the bleeding. It just didn't work.

So, then I just by myself came off it.

Tranexamic acid?

Yeah, that one. But it didn't work, but yeah, they didn't say it. Like, they didn't tell but me any side effects, apart from me asking about skin. They didn't like, they didn't tell me that without me asking.

But it did help the pain?

Yeah, I didn't. Yeah, I didn't have any cramping or throwing up. I was just, like, bleeding the whole time, but without any pain.

Yeah. ’cause I think it was that I’d like had... I had like a bad cramps, and then I’m... I’m pretty sure I tried the paracetamol, and the ibuprofen, but it wasn’t really like enough, like I wanted something that would like make it stop, like more, and work a bit better. So, I think I got an appointment with the GP just over like the phone, and then they subscript... like they gave the subscription for the mefenamic acid. So, I think it’s just about talking about... like with the GP about what like is the best option to help, yeah.

And can you remember what options you kind of were given?

I think they probably gave the option of the pill, but I’m... I’m not too sure. I think like more the... my thought process was going for mefenamic acid, and then if that wasn’t... that didn’t help enough, then I’d probably... then I’d obviously tried the pill in the end.

OK. And what’s that been like? I think you said you’ve had still some pain and bleeding with it?

Yeah, I think with the first one, I just had irregular bleeding. And then this one, I literally had one day where I had really bad cramps, but it must have been like linked to something else, because it’s been only one day, and then... I’ve still got some bleeding on this one, but I... I don’t know if it’s just ’cause it was earlier on in the... like, that I’d taken the pill, but... I don’t know. But it’s obviously my cramps are less, like because... like you don’t... on the pill, you don’t get real periods, so you obviously don’t get as many cramps. But I have... where on the days where I haven’t taken them, like, I think earlier on in the pill, like now it’s got better, but I did get like cramps, like not as bad, but you could still feel that they were there. But yeah, no, definitely been better.

OK, good. I’m very...  really.

Yeah.

Did you have any worries about hormones or...?

Well, I know it does have side effects, like it comes with the side effects, but that it’s not gonna affect me like long term, like seriousness, so... And I think you obviously, when taking the pill, you agree... or like you think, ‘oh, it does have these side effects,’ but you’re kind of taking that risk. Well, not risk, but like you’re taking of... like is you get pros and cons from both. Yeah, you know what you’re signing up to.

Yeah.

Yup.

Yeah, yeah, yeah, you’re seeing... you’re weighing it up.

Mm.

But those things that you were able to get reassured about, do you think those are things that may... that other people, or maybe your friends, do worry about?

Yeah, I feel like on the internet...or on like... like TikTok and stuff like that, people ask... I can’t remember what they’re saying about it, but they’re saying, yeah, like that the hormones aren’t like natural.

Mm.

So, I guess people could get worried about that, and it’s stuff that the... like social media just... like it just sounds like they think they’re better than like the actual professionals, which is obviously annoying, ’cause if you don’t have reassurance, then people might think that it’s not good. But I think from my friends, like I think a couple of them are also on the pill, and I think they feel like fine about it. I know one of them went off it and... and was like: “Oh, like it’s so much better.” But I think people have to just remember like it’s different for different people. Like it’s a completely different like experience for taking the pill. Like you really don’t... like you don’t get the same experience as other people might get, so it... it just depends.

I think it’s good that when you’re on the pill you have like frequent like GP appointments, so obviously to check up that it’s not doing anything serious, and I guess people just like be honest in those appointments, ’cause obviously otherwise something could be happening that’s not good, but...

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.

Can I ask you a little bit about kinda going... deciding to go to the doctor, and then we’ll think a little bit about... yeah, I think you’ve... and talked a little bit about what happened, so... but the first time you’d thought, ‘I’ve had enough, I want to go and see the GP,’ can you tell me a bit about how you kinda came to that decision or what you thought about?

I think it probably was when I started getting closer to my GCSEs as well and I was thinking, ‘I cannot let this affect something like that,’ and I went to my mum and just... I think maybe one period I was on the floor crying, walking back and forth, and I said, “I can’t... I just can’t do this anymore,” I said, “there’s got to be something else I can do,” because it was... yeah, there was times where it was really hard. And she said she knew about mefenamic acid. And I was probably 15, so I didn’t really wanna go on any birth control, and I wasn’t... I didn’t need it for contraception, so I didn’t really see the point in that. So, then she got me the prescription, and I did and e-consult for that ’cause I didn’t... I didn’t know how to... I didn’t really want... I get a bit nervous speaking on the phone, especially when I was younger, so I did an e-consult and they just gave me the prescription for that. And then I went to college, and again, and then I was a bit older, I was 16, and I’m at college now, and I’m thinking, ‘this is not... this is not what I wanna... this is not a long-term solution for me because I’m still in a lot of pain.’ And I think then I felt ready that I could go on, so... and a lot of my friends were as well, and I thought, ‘well, it’ll be good anyway, like, for... for my period, and it’ll be... it’ll be a good contraception,’ so I thought... I remember one day I was just in college and I just phoned the doctor’s up – I don’t think my Mum even knew that time – and I just said, “I really, really want the pill.” But I’d spoken about it with my Mum before and she told me that I couldn’t get the combined, ’cause I got migraines with like the visual thing. So, then I told... I made sure I told them that on the phone, and they put me on it straightaway.

OK. And then that was when you had trouble with bleeding, and you had looked on TikTok about some of the other side effects?

Yeah. And it was... it was quite a few things, because I just would forget to take it for a lot of the days, so it wasn’t really actually that. I tried my best, but... I don’t know. And then, yeah, I was bleeding every single day, and I remember I was still getting cramps – they weren’t as bad – but I was still getting them. And the bleeding was really... it was almost worse than the cramps in a way because it was... it was like... it was like long term and it was heavy. And also, I had... I was worried that I was getting anaemic as... I basically convinced myself I was having everything. So, I was worried I was getting anaemic ’cause... and my hair was falling out a lot as well, and I don’t eat meat, so I really kinda got myself worked up. So, I went to the doctor’s and I got a blood test, and I came off the pill, and I’d seen everyone’s experience, and I was... again, like 16, 17, I was starting to get really conscious about like how I looked and I really didn’t wanna put any weight on, on the pill either, so I did come off it then.

OK. And then what happened to your per... and then did your period pain...?

And then it came back, and it went back to normal. And that was... so that was when I was at college, and I remember coming out of lessons, and stuff, missing lessons, and I was like: ‘oh, this is... this is quite... this is my A-levels now,’ again, like: ‘I can’t let this stop it.’ And then I spoke to my Mum again and I looked at other contraception and basically the only one that I wanted was the implant because that was the only like long-term one, and I really just didn’t want the coil. So I went to the doctor, and I think they had a phone call appointment with me. Yeah, I had to book in for a phone call appointment to speak about it, and then she did run me through the process of it and what it was gonna be, and the... and probably the side effects, and then I booked in for my actual one, and I went in and got that put in. And that was a year and a half ago I had it put in, and yeah, it’s been in there since.

And how... and what... how has that impacted on you? Has that helped?

Yeah. And I think also because it was like a permanent thing, I couldn’t forget to take the pill. It was... I didn’t have to do anything. And I got the same thing as on the pill, I got bleeding for a long time, and that started to get annoying, so I also looked at what I can do to stop that, and... and some people said that you can double up on the pill and the implant for... to stop the periods. I remember I went... in October I went to Costa Rica, and yeah, I was volunteering, and like they don’t have access to tampons there, and things like that, and I was like: ‘I really, really can’t be bleeding every single day here,’ that’s like just...’ oh, it was just... was not good. So, I brought a little packet of the pill that I had left over with me, and I just took that when I was there, and that stopped it. And I still get quite irregular bleeding on the implant a year later, but I get no cramps at all.

OK.

And the bleeding’s quite light, and it doesn’t seem to last that long. It’s just really irregular, but it’s... it’s manage... it’s completely manageable.

So, on the whole, given everything you’ve tried and where you’re at...?

It’s... it’s been the best one for me, yeah, definitely. But then also I... I feel like maybe when I was 15, 16, I probably might have been a bit like young to have it, just for how... and just for how I was at that age.

Part B – interviewer question missing?
Yeah, yeah, I definitely did. I know some people don’t like contraception, ’cause they don’t like the idea of changing their hormones, like, I understand that, but I just think it saved... it saved me, so... so...—

Yeah, yeah.

And... and then once I got my implant as well and it stopped my cramps altogether, then my... and quite a lot of my friends have now got it as well, so we’ve all got... we’ve all got contraception because of that. And also, another thing the doctor told me as well before is that she told me that it wasn’t definite that it would stop my bleeding, and I think that was actually really nice to know as well. And she told me that like a third of people it... they, like, get their periods as normal, so it was good that she told me that. So, I was fully aware of what I was doing, so... yeah.

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.

So, have you ever been offered... and do they help you, those pills? You just take them when you’re bleeding, is that right?

Yeah, yeah, it just stops it.

OK. But you don’t like doing that every time?

Like I’m fine with it, but like, I don’t know, I feel like there could be another solution.

Has... has anyone ever talked to you about other solutions or other ideas? Have you been offered kinda any other treatments?

Like it’s all mainly... I think once I’ve been given like two options between two pills, but like the side effects of the other one was like lifetime side effects that were kinda negative, so I was like: ‘no, I’d rather just take this one and I have to stop it each time.’

OK. So, were you offered one that you took every day and you were worried about the side effects?

Yeah.

OK. And so, you’ve gone for the one where you just take it when you have your period?

Yeah.

OK, and that does work for you a bit?

Yeah.

If you find that the medicine we prescribe works, then that’s fantastic. But at that point it’s really important you understand how you can continue to get that medicine.

What we don’t want is for you to run out of tablets and then find your symptoms come back again. Particularly if that’s at a really inconvenient time in your life. So, make sure that either you or your parents are taking control on keeping an eye on how many tablets you’ve got left and thinking about when you need to order some more. We can’t turn around new packs of tablets very quickly so make sure you give us enough notice that you see your coming towards the end of your supply and go back and ask for your next pack.