Lily

Brief Outline:

Lily is 17. She hadn’t heard about periods when they started, and was helped by her friend who had. She had really marked pain, which went on for a few years, and heavy bleeding. She felt she wasn’t given much advice about which products to use, or how to use them, and worked this out through the internet, friends and reading packets in shops. She reflected that the pain and bleeding are difficult and exhausting but this is added to by the work of being constantly aware of her periods, and anticipating and managing them.  When she was 15, she felt she couldn’t manage it any longer, and her mum suggested trying the depo-provera injection. She went to the GP, and they agreed to try this – and it worked well at reducing her bleeding and pain, but she found she had side effects like weight gain on it and decided to stop. When her period started again, it went on for weeks and was really difficult. She went back to the GP, which she found really helpful, and started oral progestogen-only contraception and mefenamic acid. She has learnt a lot about periods and health conditions that can be linked to periods through the Flo app, and finds this helpful, though thinks that this is education that should be given to everyone in school. She found that being asked to try to grade or explain her pain to doctors was difficult, and appreciated that her GP took her pain seriously and worked with her to find things that could help it, and this made her feel that she would be happy to go back if it wasn’t working for her. She would like schools and society to believe people about pain and support them, and not make people feel invalidated or judged, but able to ask for help.

Lily knew about periods, but when hers started and looked ‘brownish’ she wasn’t sure what was going on. She asked her friend, who assured her this was a period and gave her some pads.

Can you tell me a bit about when your periods started, what they were like then, maybe whether they’ve changed since then, what they’re like now?

I think I started when I was 11 and I just didn’t particularly know what it was at first. I was educated about it, but I just thought like it ... it didn’t really look like a period, you know, it... it looked sort of brownish, so I thought, ‘what’s gone on here?’ And I was with my friend at the time and she had already gotten hers, so I asked her, I said, “What... is... is this my period?” and she said, “Yeah, it’s 100 percent,” I said, “OK.” And she gave me some pads and sort of stuff to keep me going, ’cause we were staying at my Nan’s house. And then that was sort of it.

I was a bit scared to tell my Mum at first ’cause we didn’t have a lot of conversations about sort of periods and stuff. But she sort of... it was more of my Nan, even though I don’t live with her, it’s just she... she got there before my Mum, of course. So, I was a bit scared to tell her, but I... I did, and that’s... we didn’t really talk about it really, we just kind of get on with it.

Lily hadn’t wanted to take part in PE at school, but felt the teachers were not understanding.

So there was school. Does it impact on hobbies like sport, social, hobbies, holidays? Are there other things where your periods have had an impact, maybe?

Yeah, definitely with PE I did try and get out of with... with my periods because it’s just they’re expecting you to do cross country and running and I’m like really heavy and I just, I can’t deal with it. You know, and they’ll just say, “It’s not an excuse really,” or you have to have a letter from your parents, and I think it’s quite embarrassing having to ask your parents: “I’m on my period, can you sign me off?” And my parents would just be like: “Go and do some exercise,” you know, “get... get some oxygen in you.” So, they’d sort of just like not allow me to stay off PE for it.

Lily thought it was normal to have period pain, because she had been told periods were painful. She thought she was ‘unlucky’ to not be able to go to school with the pain, until she read more about periods and period pain on her period app chat function.

Can you tell me a bit about the pain that you’ve had with your periods, kind of, was it always there when it started, and... and what you kinda thought, what you... but yeah, what you thought, where you looked for information, or anything like that?

I think before I started using Flo, or before I went on those secret chats, or where... I... I would be sort of on the floor in pain feeling really, really sick, and like I couldn’t go to school because they were so painful.  And I just thought that was normal, to be honest. I just thought that’s sort of how... how everyone experiences period pain – but appar... apparently not – because I... and compared to others, I did compare to others and so... “Do you experience this?” like: “No,” so I just thought I was a bit unlucky really with... with my period pain.

OK. So I was gu... I was gonna ask that. So... And the pain that you had, was that something that anyone had ever talked to you about in lessons, in preparation, or when you learnt about periods that they might be painful?

They did say they were painful, which, that’s sort of why I thought they were normal of... of my pain experiences, because I just thought everyone else was going through that.  Because people would complain, of course, being like: “Oh, God, I’m in quite a bit of pain,” they’d be like... Honestly, my periods are bad as well. But the... the pain is... is awful, and I just... Oh, I can’t get over it, really.

Lily found the 'secret talks' on her tracking app supportive during her periods and pain, connecting her with others with similar experiences. These shared insights also helped her decide to give hormonal contraceptive treatment "a go."

What sort of things made it feel like a good website to look at for you, if you see what I mean?

NHS websites I think were... were really important to... to look at because they are... they are trusted throughout the whole of the UK. And I definitely did... did look at the NHS website and sort of...  I also used the Flo app, and they have like secret talks on there about their experiences, so I would sort of... it would come up on there like what pad should you use, what’s helpful. And so that also did bring me to the whole world of periods and sort of helped me through... through all of it, I guess.

Yeah, yeah. And the Flo... the chat that you were accessing on Flo, which is also something that actually I really wasn’t expecting that I’ve... that I’ve heard from lots and lots of people about, is that... and that’s the chat function that... where people post the kinda Q&A board, is that right?

Yeah, yeah, that’s correct.

And... and that was something that you found really helpful?

I think it was probably one of the most helpful things because you would see sort of... you’d worry about abnormalities with your periods and you would see, you know, you’d... you’d search up: “Is this normal in my periods?” or, “has anyone ever experienced this with their periods?” and then you would sort of look on that chat and see other people’s experiences and you’d go: ‘oh, right, OK, it’s normal,’ or, ‘this other person’s experienced it, so I’m not alone in this situation.’

OK. And what sort of things were you kinda wanting to check out whether it’s normal or not? You talked about heaviness of bleeding. Were there other things that you worried about or was that the...?

Period pain as well.  Obviously, I... I found out the root of like endometriosis and... and sort of, you know, it’s not normal to feel that much pain, ’cause I... I did have a lot of horrific experiences with my periods in the past.

OK. OK. Can you tell me a bit about the pain that you’ve had with your periods, kind of, was it always there when it started, and... and what you kinda thought, what you... but yeah, what you thought, where you looked for information, or anything like that?

I think before I started using Flo, or before I went on those secret chats, or where... I... I would be sort of on the floor in pain feeling really, really sick, and like I couldn’t go to school because they were so painful. And I just thought that was normal, to be honest. I just thought that’s sort of how... how everyone experiences period pain – but appar... apparently not – because I... and compared to others, I did compare to others and so... “Do you experience this?” like: “No,” so I just thought I was a bit unlucky really with... with my period pain.

— 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 sorts of things, definitely.

Yeah. So, it’s actually, that’s been a massive source of comfort for you?

Yes, yeah.

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.

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.

Lily appreciated that her doctor didn’t ask her to rate her pain. She offered her options for treatment and arranged follow up, which helped her feel confident in the care.

I think it was because she didn’t ask me a bunch of questions, you know: “How... how high is your pain tolerance?” or, “on a scale of one to 10, how do you rate your pain?” Didn’t ask me any of that. She just... she knew that I was in pain and that she didn’t feel like she needed to ask me those questions of my pain threshold. And she just thought, ‘I’ll try you on these, see how you feel, let me know if you have any problems. We’ll take you off whenever you need to. Let me know if they work.’ And I think because she was so helpful with that, it made me more confident and more relaxed that... that I was getting the help that I needed.

Brilliant. And also that you could go back if it didn’t help.

Definitely.

And would you... would you feel... you’d feel happy to go back?

Oh, definitely, yeah.—

Yeah. I’m really interested in what you said about pain scales, ’cause actually one of the questions on my guide is, has anyone ever asked you to describe your pain?  And I guess there’s two aspects to that: one is whether you find it helpful or easy, but the other is how it kinda makes you feel? Do you... and... and it... they obviously had quite an impact on you, the pain scales, kind of—

Yeah.

—describing pain, so I don’t know if you’ve got any thoughts on... on that, but... but... but I’m... [erm] think that’s a really interesting observation.

I think because it’s like: ‘oh, if your pain’s not... not that painful,’ which is a silly thing to say really, because pain is pain, obviously there’s just different levels, of course. But I think any pain to do with periods, it sh... it should just not be overlooked, and it shouldn’t be overlooked at all. And so a scale, it’s hard to... it’s hard to pinpoint with... with pain, because you could be stabbed, and it’d be a 10, but you could also have horrific period pain and it’d be a 10. It’s obviously hard to differen... differentiate that pain in relevance to other things, not to do with periods, yes.

Yeah, no, I... I agree. And... and it seemed to have quite a strong...  So there... there’s the fact that it’s quite hard to know what to do with it, but it seemed to kinda cause quite a kinda emotional response in you as well, that kinda: ‘can you describe your pain?’ I might have...  No, du...—

Sorry?

—does it kind of... yeah, did it... it sounds like it was something that really put you off when you’ve been asked to do it, or threw you off a kilter.—

Yeah.

Yeah.

Yeah. I think... I think I might have actually put a form through it and it did say, “How do you rate your pain on a scale of one to 10?” and I just thought, ‘it’s so hard to... to pinpoint,’ because it depends on what... what time of the day, and when it is, as well as, I guess, are you measuring it from the lowest point of pain that I’m in, or the highest point of pain that I’m in? It’s so sort of general that I just thought, ‘what a silly question.’

Lily decided to go to the GP when she felt nothing else was working for her. Her Mum had found the depo hormonal injection helpful and so she went to the GP to ask for this.

And what... Can you remember in what way it changed or what kinda helped it... you think about it differently?

Just dealing with it, I think. I think just it got to a point where I thought, ‘I can’t... I can’t deal with it anymore, and I can’t...’ I’m not particularly sure. Like I just sort of gave up with... with dealing with it and definitely just thought, ‘nothing is working at the moment.’

OK. And you said that you... your Mum suggested Depo, —

Uh-huh.

—so, can you remember... and that it was time to go to the doctor?

Yeah.—

Yeah. And that was when you were 15. Was that the first time you’d gone to the doctor?—

Yeah.

OK. Can you tell me a little bit, from what you remember, about how you kinda made that decision to go to the doctor and then what it... what that experience of going to the doctor about your periods was like?

So, my Mum was on the Depo and she just... she just enjoyed it. She, you know, liked not having the periods and so she suggested that. She said there is other options like the... the pill and that sort of area for... for helping with the regulating of the periods, or not having them at all, so I would avoid having the cramps.  So, we did speak about those sorts of options and I just thought, ‘if this is gonna help me, I’ll do it.’ So, then we went to the doctor’s, of course, and they were like going through the procedures: “Are you sure you want to do this? Obviously, you’re quite young.” They normally ask you to wait till you’re about 16, they said, “But because your periods are so bad, we’re... we’re gonna give it to you at 15.”

Lily’s GP was ‘open-minded’ about periods and gave her options and advice about follow up. She appreciated this because it can be hard to talk about something quite private.

I think it was because she didn’t ask me a bunch of questions, you know: “How... how high is your pain tolerance?” Or, “on a scale of one to 10, how do you rate your pain?” Didn’t ask me any of that. She just... she knew that I was in pain and that she didn’t feel like she needed to ask me those questions of my pain threshold. And she just thought, ‘I’ll try you on these, see how you feel, let me know if you have any problems. We’ll take you off whenever you need to. Let me know if they work.’ And I think because she was so helpful with that, it made me more confident and more relaxed that... that I was getting the help that I needed.

I think that... that, you know, it’s... it’s helpful having someone who’s... who’s definitely open-minded when... when patients are coming in and they’re talking about something that’s quite a private thing. Definitely keeping a open mind and sort of, you’re not particularly sure what they’re experiencing, so it takes a lot for people to come in and talk about it, definitely.