Young people's experiences of periods and period pain
Healthcare appointments or seeing doctors about periods and period pain
In this section, we hear about what it was like for those young people who had seen a doctor about their periods and period pain. Not all of the young people we spoke with had seen a doctor. We hear about their experiences, and thoughts about:
- What young people told us they liked or found helpful in healthcare appointments.
- What young people told us they had found difficult in healthcare appointments
The kinds of doctor young people had seen included GPs and specialist doctors, for example specialists in children and young people’s health (paediatricians), specialists in female reproductive health (gynaecology), sexual health, and sometimes specialists for their other health conditions (for example bowel doctors or hormone specialists (endocrinologists)). (See period pain and other health conditions). A few people told us about their experience of seeing doctors in A and E. Some had seen specialists through the NHS and some privately (because their parents had private insurance, or they paid extra to be seen).
What young people told us they liked or found helpful in healthcare appointments
Seeing a doctor about periods and period pain meant needing to find a way to bring up the subject of periods and explain what had been happening. Talking about periods and explaining pain could be difficult to do [see explaining or describing pain, see talking about periods]. Feeling that the doctor was happy to talk about periods could help young people bring the topic up to start a conversation. Reham went in to talk about her periods, although she had been a bit nervous. She appreciated seeing a GP who she felt was ‘open-minded’. She was glad to be offered iron tablets as a practical treatment to try. This hasn’t helped hugely but she feels comfortable about planning to go back for review.
Iris’s GP helped her feel comfortable to talk about periods. She was given space to explain what was happening so that they could agree on a treatment option to try (read by an actor).
Iris’s GP helped her feel comfortable to talk about periods. She was given space to explain what was happening so that they could agree on a treatment option to try (read by an actor).
OK. So... and then did you... and when you went to the doctor, can you tell me a bit about what that was like and what happened then?
Oh, it was... it was really nice actually. So, I... I went in and the lady who was there, I think she made me... she made me feel really nice and comfortable and I think she asked me a bit about how my periods were, like were in general, like heaviness or lightness. But she made me... she did make me feel quite comfortable as if it was quite a normal thing. Because if you think about it, I only... I wouldn’t really talk about periods that much and say, so, “Oh, look, I need to go to the bathroom to change my pad,” or “my tampon”. I think it was, yeah, she made me feel very comfortable and then asked me a bit about how my periods were, and then... yeah, and then how bad my cramps were and then she could then suggest some options. So, it was... yeah, it was really beneficial actually, yeah.
Were you worried about it at all before you went?
No, I wasn’t actually. I think the only thing I’d be worried about was if I could get a good solution about it, but I was... I was more or less confident that I would manage to... manage to find something, yeah.
So, it was good to get someone who I think I could relate a bit more to. And I think she seemed quite open with everything and, yeah, it was really good.
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.
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.
Sometimes it was the doctor who brought up the subject of periods and period pain, which could help begin the conversation. Eidra was seeing her GP about her migraines when they ‘noticed the correlation’ between her headaches and her menstrual cycle. For Leila and Jayden, who were seeing specialists for other aspects of their health care, periods and period symptoms were asked about as part of their routine appointments, which provided an opportunity to ask about concerns.
Willow went to the GP feeling exhausted. The GP connected this with her heavy long periods. She hadn’t wanted to talk about periods, but she knew it was important (read by an actor).
Willow went to the GP feeling exhausted. The GP connected this with her heavy long periods. She hadn’t wanted to talk about periods, but she knew it was important (read by an actor).
OK. So, did you go to the doctor to talk about your period?
Willow: Yeah.
OK. And can you tell me a bit about what you remember about that, what that was like?
Willow: Yeah. I didn’t feel like I wanted to talk about it that much, but I knew it was important, so I did. And the medicine tasted horrible, like fire.
Mum: The other thing I’d... just to sort of provide a bit of explanation: when we went to the GP, it... it... it wasn’t actually so much for the period, it was that [name] was exhausted-
Mm.
Willow: Yeah, so tired.
Mum: — and very tired. And al... also one of the things we mentioned is that she’s... she’s... she’s had a period for two weeks, so...
Willow: Mm, I’m not sure how we had actually figured it out.
Mum: Well, I mean I think it... as soon as I mentioned that to the GP, it was like there is a connection and that was the answer…
Yeah.
Mum: I... I don’t know, what do you think of the... the way the GP treated you and that I can then say what I thought, but what did you think about talking about it with your GP?
Willow: I think it was better than having a male doctor because it was like a female doctor that made me feel better.—
Mum: Oh, interesting, OK.
Willow: It was like the most OK bit about it.
Mum: Uh-huh.
Willow: Yeah.
Mum: Yeah.
Do... is there any other... that was the most OK bit about it?
Willow: Yeah. I just generally don’t like talking about my period most of the time, most of the time, like this is... I’m not sure.
Mum: Her GP was actually very good, like she’s very...—
Willow: Yeah, she’s a very good GP.
Mum: —she’s a good GP and having a good relationship with her, and seeing the same person each time I think really...
It really helps.
Willow: Yeah. Whereas with the dentist, it’s random, even though it has nothing to do with this.
Having someone else at the appointment (e.g. a parent, sibling or friend) sometimes helped with opening conversations about periods. Elsa reflected that because she ‘was maybe like 14 or 15, so I sort of would have been doing everything with my mum and she would have helped out a lot and sort of taken care of most of it’. Sage had been talking about her difficulties with her mum before the GP appointment and so she ‘knew to bring it up’. Hannah X went with her mum when she was 14, which helped on the whole, but found it awkward when she was asked about being sexually active, though she understood why they had asked.
It helped when health professionals gave young people explanations about what they were doing and what to expect. This could include why they were asking specific questions, what tests might (or might not) be helpful – and why, and which treatments could be tried, as well as what to do if the treatment didn’t help.
Liv had seen a number of doctors, before she saw a specialist who took the time to explain. This was transformative, and she would like to be able to see the doctor again and thank her.
Liv had seen a number of doctors, before she saw a specialist who took the time to explain. This was transformative, and she would like to be able to see the doctor again and thank her.
So, then we went to the hospital so many times over the next couple of years, and it was... and I think it was... the worst part was that they were all ladies and it was kind of... they probably didn’t have any conditions that made their periods worse, and they probably thought that I was just like blowing it out of proportion and that I was just saying it because I didn’t like it, like everyone else does. But yeah, they were just all... they were all 10- 15-minute conversations: “Nothing we can do, try this pill, if it doesn’t work, come back,” and kind of waiting months between appointments, even if there was something wrong.
And then finally going back and seeing... I can’t remember what her name was, but I really wanna see her again, just to thank her for what she’s done. But spending an hour and a half, and actually getting answers, getting probably more answers in that hour and a half than I had over the... over the four years from one person who actually listened to me.
I think she’d been... I think she hadn’t been in health care for, I think, 10 or 15 years, and in... as a... in... like as a gynaecologist, and she just... she just listened and just kind of asked questions and said, “Right, could be this, have you tried this? What have you been told? What have you not been told?” and just giving us options and kind of hope that there would be something. And I think that was the first hospital appointment I left and I didn’t feel like crying ’cause there was nothing that came out of it.
And then... but yeah, it’s just...it’s just... was just disappointing that they were all ladies, and it was only one... the first person was... was a man who... like, who just said that it was nothing and that I was a teenage girl who just wanted a bit of attention because of her period, and just then ladies saying the same thing of: “It’s just a period, it’s normal, there’s nothing... like, nothing special that we can do,” and then finally someone saying, actually it is, and there is something wrong.
Because in... in that appointment with that... the final... like the final hospital appointment, she... well, she went over everything, from what I’d already heard, to what I’d never heard, to things that doctors had done that they shouldn’t have, because there was no way it would have gotten... gotten you anywhere, and kind of saying that... One of the things... one of the biggest things we came across was wanting... like, requesting a laparoscopy, because that would have given a better view of what was going on internally, but they kind of... we just got told no, but we didn’t get told the reason why they said no. And the reason was actually because they don’t do them anymore and it’s kind of out of fashion, because they’re... like, the maj... the majority of the time, if you’re younger than 18, the results, there’s no results, because they... they can’t really see anything. And I think they should just... I think it’d be better if they just explained more. And because the younger you are, the less you know about all the kinds of things, and yeah, I just think you should explain all the possibilities, and not just the... what you think at the moment it could currently be.
And do you feel like your... from your observations and your experience, do you feel like your age played a part in how those-
Yes, yeah.
—or did your age get used in explanations to you, is that something that was part of it?
I think... I think the... it was more: ‘oh, yeah, it could be this, but you’re too young,’ ’cause it... yeah, it could be rare, but that doesn’t mean it’s impossible, ’cause even though it is rare, it could be one of the rare moments that it is actually happening, because it is rare in young child... in young girls to have a diagnosis at their age, but it’s not impossible, and if it’s not impossible, it should be one of the options for testing. ’cause a... again, I think if I had been 18 to 20, it would have been quicker because it would have been: actually, could be this, ’cause you’re not too young, could be this, because you’re the right age for symptoms to start... start showing. But yeah, I think there’s a lot of... and it’s not... if it’s not common, it’s not happening, kinda thing.
Having information about options helped young people make choices about what treatments they would like to try. Sharing information about what matters to people, and what treatments are available could help people make decisions with their doctor and feel more confident in their care. Information about why particular treatments were suggested, and what might be the alternatives and possible side effects, helped young people make their decisions about what to try [see treatment, see deciding to see a doctor]. This could also help them engage with healthcare, both at the time and later. Leila has Down’s Syndrome. Her family support her with her healthcare and appointments and have written a personalised patient passport, with information about her periods and period pain, to help them have a way to make sure that things that were important to them and would help keep Leila safe.
Poppy discussed options with her GP and decided to try tranexamic acid. She liked that she could just take it with her period and has found that it has helped her period pain and bleeding. She felt lucky to have had such a good experience at the doctors.
Poppy discussed options with her GP and decided to try tranexamic acid. She liked that she could just take it with her period and has found that it has helped her period pain and bleeding. She felt lucky to have had such a good experience at the doctors.
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.
Across these specific things that were helpful in healthcare encounters and settings, there was a common sense of being treated with kindness and empathy. For Ivy, a new GP reviewing her notes, acknowledging that her pain was significant and arranging a referral meant that she ‘felt like I’d been taken seriously and it actually made me... me feel valued and empowered’.
Scarlett saw a private gynaecologist who was ‘so helpful and so sympathetic’. Her understanding made her feel that she was not alone and ‘wasn’t invisible’.
Scarlett saw a private gynaecologist who was ‘so helpful and so sympathetic’. Her understanding made her feel that she was not alone and ‘wasn’t invisible’.
But we were so grateful whenever we met her in her clinic, and she was just so helpful and so sympathetic and made Scarlett feel like she wasn’t invisible, you know?
Can you remember anything about what it was like to talk about it or how you felt or how you experienced any of those appointments?
Well, the most enjoyable appointment for me, well, enjoyable, you know, like as enjoyable as a doctor’s appointment can be.
Fair enough.
But the most enjoyable appointment was with the... the private gynae. She was lovely. She was very understanding. She... she made me feel like that I... that I wasn’t alone and that other girls have this too and it just wasn’t just, you know, just take a hot water bottle and go to school.
What young people told us they had found difficult in healthcare appointments
The things that could make healthcare encounters feel uncomfortable or tricky, are pretty much the opposite of the things that helped.
Where having a doctor make a connection between periods and what was happening could be helpful, some young people said that when they had tried to explain about difficulties with their periods, the doctor had attributed the problem to something else, which stopped the conversation being about period problems.
When Zaynah first talked to the school GP about her periods, her difficulties were attributed to homesickness, until she showed them the strong painkillers she was taking, but that were not helping.
When Zaynah first talked to the school GP about her periods, her difficulties were attributed to homesickness, until she showed them the strong painkillers she was taking, but that were not helping.
So, I had a GP on site at school. At the beginning, they were not like understanding at all. Like they were convinced that I was just stressed about like moving away from home and that this was like homesickness and that it was just like coming out through all of these like signs, and I was like: ‘it’s not that because I’ve been struggling with this for like over a year like before I came here, like it’s not that.’ Like, and they just continued and kept on trying to say that it was homesickness and that like maybe I was just feeling lonely, and things like that. So that was quite tough at the beginning. Because my first weekend there, my... like the teacher who look after me in like the house that I lived in, sent me down, and he just sent me home, and I was like: “That’s not gonna fix my problems.” And he was just like: “No, like, I know you’ve only been here for five days and that like, and you probably just wanna go home and like see your parents and sleep in your own bed.” So, he just sent me home for the weekend, which didn’t do much. So obviously he saw me again like two weeks later, ’cause then he was like: “Oh, maybe we need to do something about this.” And then I told him what painkillers I was on, so then I think he kind of realised that maybe there is an issue here, because when I told him I was on co-codamol, and it was the strongest version, the 30—
500.
—500, yeah, he was kind of in shock, so he was like: “OK, maybe we do need to take this seriously,” yeah, yeah.
When Jayden wants to talk about period difficulties, health professionals seem to disregard pain and period symptoms and just focus on weight, which doesn’t help.
When Jayden wants to talk about period difficulties, health professionals seem to disregard pain and period symptoms and just focus on weight, which doesn’t help.
I just think it’s... well, me, and also just other people that I know just get very easily dismissed. It’s going to be X... it’s going to be this, this, and this, you know? Of... I think often it’s just like: “Oh, it’s overweight, you need to like lose weight,” but then it’s difficult because of like PCOS (Polycystic Ovary Syndrome). ’cause that was the reason why I got put on metformin. It wasn’t because to... to help with the PCOS, it was to get rid of the excess weight that I have, and then the PCOS will be dealt with, but that’s not... my weight’s not my biggest issue, it’s the pain. But actually, I was gonna say, it’s something that you can like write down in like... yeah, for like the research: the doctor said that the medication will essentially give me anorexia to lose weight “and then we’ll look at it later,” which just wasn’t helpful at all. Yeah. Yes, and... you see I... so I just think that that’s just something that I’ve just noticed that it’s like I’ll go somewhere and they’ll just look at me and go: ‘it’s clearly another issue.’ When even though they... they won’t even look at my medical records and see I am diagnosed with X,Y, Z, it’s just: “You’re overweight, sort that out first and then we’ll look at you.”
Several young people told us that they felt that their age might have made a difference to how health professionals responded to their period symptoms, or how seriously they took them. Lola remembers being told that her period pain would settle, with time, and that she would need to get used to it. When her exams were coming up, and ‘a couple of years went by, still wasn’t used to it’, she decided to go back to the doctor and try again (see managing pain and deciding to see the doctor).
Ivy thinks doctors don’t take young people seriously. She tried to learn medical words to convince them to listen to her.
Ivy thinks doctors don’t take young people seriously. She tried to learn medical words to convince them to listen to her.
The laparoscopy, they did mention, but because I was only 17 at the time, they don’t like to do it under 25, or something, which I totally understand, he was again giving me information against that, rather than for it. So, he was saying “you’re so young, it probably isn’t this”, and again just gaslighting and pushing me away from it. And if I didn’t mention the MRI, or even the ultrasound, I wouldn’t have had that, and being age 16, 17, 18 now, I shouldn’t be having to tell the doctor what I want and you shouldn’t be having to do that research by yourself and looking at these massive Harvard studies to try and work out what you actually need.
Do you feel like the age that you were, has had an impact on...
Oh, definitely, abs... absolutely. So, I think the normal age to sort of start your period’s around age 13, 14, so I consider my... myself early, even though I was 11, and I just think... I think a lot of GPs and doctors and specialists don’t take young... younger people seriously and they don’t... they sort of think we’re like over-exaggerating our symptoms almost, if that’s the correct way to put it? So, I just feel like I wasn’t taken seriously by it. And although I was doing research and trying to think of like special words to sort of tell them, like... like literally telling them the medical word for period pain and all of these things to try and be taken seriously and to try and actually make them realise I’m serious about this and I’m actually going through this.
Medical guidance does not restrict the age at which different tests and procedures are available but tests and interventions should be offered with a careful weighing up of the possible pros and cons of having the test. For the tests often used to look into period pain, considerations could include the possibility of tests being uncomfortable (for example ultrasound scans), or for laparoscopy (laparoscopy is a kind of ‘keyhole’ surgery done under a general anaesthetic, where a surgeon uses a small cut to put a small camera in the tummy, which lets them see and make diagnoses of things like endometriosis, and sometimes also do treatment), the risks of a general anaesthetic and operation. Doctors balance these possible worries against how likely they think it is that the test will be able to help with treatment decisions. However, some young people thought that their age had influenced what tests they were offered for period pain [see tests and diagnoses]. For example, Ivy and Liv both believed that their doctors did not recommend a laparoscopy for them due to their age, and Lola remembers being told that she could not have an internal ultrasound scan until she was 18.
Like for Ivy, who looked up and used medical terms, sometimes young people felt they had to make extra efforts to convince health professionals to listen to them and take them seriously.
Candice resorted to taking photos of her menstrual bleeding when she was trying to persuade the GP to take her period bleeding difficulties seriously (read by an actor).
Candice resorted to taking photos of her menstrual bleeding when she was trying to persuade the GP to take her period bleeding difficulties seriously (read by an actor).
Can you tell me anything that you’ve maybe noticed or thought about trying to explain about periods or about their heaviness or what they’re like for you, or questions you’ve been asked?
Me... like me, at first I was like really shy about talking about it; I made my make my mum do most of it. But now ’cause like I’ve like gone to the GP quite a lot for it, tried the thingy, talked to them so much about it, like every time something goes wrong, I’ll take a picture, I’ll show it them ’cause that’s the only way they’ll like bat an eye to it, like that’s the only time they’ll pay attention to it. But I feel like... like the photos are just really needed for it or else they don’t believe.
For many young people, pain could be difficult to explain. This was generally the case for any pain, because it is subjective and hard to compare with others. Period pain could be particularly tricky to describe because it changes through the period cycle and through the month [see talking about periods; describing pain].
When period pain was talked about with doctors, some young people told us that they didn’t always feel heard or believed. This included being asked directly to describe pain or if asked to rate their pain on a scale of 1-to-10, or on a scale of happy to sad faces.
River thinks doctors should believe what young people say about how much pain they feel. Having to keep explaining his pain all over again with each doctor is hard (read by an actor).
River thinks doctors should believe what young people say about how much pain they feel. Having to keep explaining his pain all over again with each doctor is hard (read by an actor).
River: I don’t... I don’t know. I’m... I’m just generally a happy person, so I... I... I just... and like if... if like a doctor’s asking me questions, I... I’m just like maybe smiling, but like I’m at a really high pain level and sometimes they don’t believe me, but I... I don’t know.
River: Like if I’m telling them my pain level and I don’t physically look here, I... I feel like if they just took my pain level as I’m saying it and just believe me, then that would be helpful.
Yeah.
Mum: Also, would you say like clearly River’s been to doctors and hospital quite a few times,—
River: Yeah.
Mum:— just even the doctor having a cursory scan before they start saying some of these statements back at you, is it?—
River: Yeah.
Mum: So... so obviously there’s some people who maybe... who might go in for the first time, but... so, you know, River’s obviously been several times and... or many times, and so being asked something that you... you... you feel like you’re having to relive the same thing.—
River: Yeah, and I have to explain myself over and over again.
Mum: And it kind of... that’s traumatic after a while.
We have heard above about how young people appreciated being given information to help them make decisions about healthcare, including side effects and alternative options. Emily Z explained how feeling they were not being given options and information about treatment side effects, had put them off medications or seeing the doctor.
For young people, like River, who had been back and forth to a number of doctors, it could be difficult to ‘have to explain myself over and over again’. They think it would be helpful if doctors took time to read the person’s records before they come in, and listen to their accumulated experience and personal knowledge.
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