Young people's experiences of periods and period pain
Tests, investigations and diagnoses for periods and period pain
Many of the young people we spoke to had not seen a doctor about their periods or period pain. [See Healthcare: Deciding whether and when to see the GP]. People who had been to see a doctor were sometimes offered treatment as a first step [see Healthcare: Experiences of treatments]. They might have had other health conditions relevant to periods and period pain that could influence what tests or treatments were available to them. This could include health conditions that were already known about and also health conditions that people wondered about or suspected, including PMOS Polyendocrine Metabolic Ovarian Syndrome - PMOS (formally known as PCOS), endometriosis, adenomyosis, and developmental differences in the womb and vagina. [See Healthcare: Periods and period pain in relation to other healthcare conditions]. This section includes:
- The different types of tests that people had to look into periods and period pain.
- What people hoped for when having tests to look into period pain
- Experiences of asking for, or being offered, tests to look into periods and period pain
- How people felt when they heard about the results of tests to look into period pain
The different types of tests that people had for periods and period pain.
The types of tests we heard about include blood tests, ultrasound scans, MRI scans and laparoscopies (this is a type of operation - see Resources section) done with a general anaesthetic when a small camera is placed through the belly button so that a surgeon can look at the organs directly. Surgical treatments to things that are seen at laparoscopy, for example spots of endometriosis or ovarian cysts can also be done at the same time, so sometimes laparoscopy can be both a test and treatment). Zaynah had a laparoscopy, Scarlett, Liv, Ivy, River had had MRI scans, and Leila, Liv, Ivy, River had had ultrasound scans. Leila had an ultrasound scan, and then a call with a doctor who ‘said everything was normal’ and that ‘there was nothing sort of in the wrong place, or anything’.
Scarlett had blood tests and an MRI. These didn’t ‘find anything’. Her gynaecologist then started her on treatment with a contraceptive patch, which has been really helpful.
Scarlett had blood tests and an MRI. These didn’t ‘find anything’. Her gynaecologist then started her on treatment with a contraceptive patch, which has been really helpful.
And... and then you had the tests, and can you remember... yeah, is there anything that you want... that it would be helpful to think about, about having the test or hearing the results, or anything like that?
Scarlett: I can’t really remember most of it, but I remember most of the tests.
Mum: And where we got the MRI done.
Scarlett: Yeah the MRI.
Mum: It was around Christmas.
Scarlett: Yeah. The MRI, most of it was just blood tests, scans and MRIs on my stomach and, you know, just like testing my blood, and stuff, to see if anything was wrong.
Mm.
Scarlett: And we couldn’t find anything, but it was just so unbearable. So, the... the doctor... the gynaecologist put us on the patch immediately.
Mum: —we don’t... it’s... it’s then: ‘oh, are... are we gonna just have to live with this?’ But then it were... then that it was Dr... [Dr name] said, “No, we’ll put her on the patch.” She... she wanted to run these tests before... you know, before she gave any medication, she wanted to have a good look at what was going on in there. And then we got the medication and I said it was a couple of months then when it started to kick in. But there were really from... from that December to March, I was still concerned that, you know, there... there is nothing that’s gonna be able to be done here. And I think I was maybe phoning her office a few times, you know, kinda saying “is there anything else you can give?” But we gave it the time, and it definitely, it was a March time it kicked in, and she... and Scarlett started to notice a difference.
Great. Brilliant. So now that you’ve had that other experience on top of it, Scarlett, so you said initially you were... felt a bit upset: how’s... how’s that, has that transition... how do you feel kind of now, now that you’ve found something that thankfully works for you a little bit?
Scarlett: I feel quite relieved that I can continue doing what I... what I love, you know? Going to school and doing my hobbies.
Mm.
Scarlett: I am still a bit curious to figure out what was actually wrong, but I know... but I know I probably won’t be figuring that out till a bit later. So yeah, I just feel a lot better than I used to. And I just feel a lot more relieved.
What people hoped for when having tests to look into period pain
Young people we spoke with who had wanted, asked for, or experienced these tests were usually trying to find out whether there might be something that was causing or contributing to their pain. Zaynah was seeing her GP often and reflected that ‘it felt quite rubbish because it was just like: ‘I’m having to come back here at least twice a month, so something is obviously wrong,’ like... And I don’t think that she didn’t believe me, I just don’t think she knew what to do herself’.
Although it’s debilitating, Ivy feels she can handle her period pain, but wants to know what is at the root of it so she can work out what treatment approach to take.
Although it’s debilitating, Ivy feels she can handle her period pain, but wants to know what is at the root of it so she can work out what treatment approach to take.
I remember just not feeling valued, or like I was having my symptoms heard, and I just felt so inferior, almost, because, yeah, that they just jump... I feel like with a lot of GPs, obviously not comparing it to you, but a lot of the NHS, they just want to treat the problems and not get to the root of things. And since then, I’ve been... since then I’ve been to the doctor’s probably about... about 10 times. I’ve also had MRI scans and ultrasounds, and I... I just told the... the doctors: “I’m fine managing the pain, I just wanna... want to know what’s causing it.”
And... yeah, and then I was finally referred for an ultrasound. I had a kidney and pelvic ultrasound, and that came back clear, and then I still went back to the doctor’s and was like: “This pain is still so intense.” So, I was referred back to the gynaecology clinic, sort of rebounding, and I remember going in and they tried to put me on the new pill for endo... endometriosis, which I told them before, I don’t want, because I can manage the pain, I’m fine managing it even though it is debilitating, I just can’t get to the root of it because I want to know what’s causing it because if it is a... a nerve problem, I can have, like, holistic treatments for that, like acupuncture. If it’s endo... endometriosis, that’s actually growing inside me, I want that removed or I want to know how I can treat that, almost. So, the doctor basically tried to turn me away again with those tablets. And then I went back.
Another important reason for wanting tests was to see what treatments could be helpful. People thought that looking into the cause would inform decisions about treatments. [See Healthcare: treatments for periods and period pain]. Abi recalled that ‘they kinda just gave me a lot of options, but didn’t actually, like, talk to me about why I was getting it, which was my cramps’. This made Willow Z reluctant to take hormonal treatment: ‘And when I wasn’t having my periods, they didn’t think, ‘let’s look into it, wonder why this is happening? That’s not normal.’ They just went: “Take the pill, off you go.” I don’t wanna live on the pill for the rest of my life, but I’m not given a choice.’ Even when treatment had been helpful in relieving symptoms, some people, like Scarlett (who had tests which didn’t confirm a definite cause for her period pain) were ‘still a bit curious to figure out what was actually wrong’.
Hannah has stopped contraception treatment because she didn’t find it helped. She had an ultrasound scan, but has not heard about the results. She doesn’t think the doctors understood that what she wanted was to know if there was something wrong.
Hannah has stopped contraception treatment because she didn’t find it helped. She had an ultrasound scan, but has not heard about the results. She doesn’t think the doctors understood that what she wanted was to know if there was something wrong.
Yeah, well, because I when I got put on the pill and then I had, then I came off it. They didn't really do anything to find me another like alternative because it's like they've never come back, or anything. And it was quite, yeah, like because I got a scan, it- I don't know what the scan is called, but for endometriosis, but they never came, got back to me on it or, like, gave me any advice on it. So, I still don't know what the result of that was because I don't think they really understood that it was like I actually wanted to know if there's something wrong.
So, did they offer? Can you remember how the scan came up? Was, was... Did you ask for it, or was it offered?
I think it was offered.
And was that something that you'd thought about before? I mean, had you had anybody ever said the word endometriosis to you in school, or education?
Not in education. It was more something I found out myself from, like research. And if, like I said to someone, ‘oh, it's this bad,’ They might be like, ‘oh, it could be endometriosis.’ But I never got. I didn't know what it was through education.
Was that from friends, or did a doctor ever mention it to you?
Not a doctor until they referred me for the scan, but I don't think they ever specifically said endometriosis. They just put me through for the scan.
Was it an ultrasound?
Oh yeah, if that's what it’s called?
Is it like a little a kind of probe, like a tampon that went in the vagina? Or was it just on your tummy? Yeah.
Yeah, both.
OK, OK. OK. And that worry about whether there might be something with it?
Was that something you'd been thinking about? Was that something that had been important to you?
What, that I had endometriosis?
Oh yeah, or that there might be something causing your pain.
Yeah, that does because it's like seeing, if I see other people I'm like, it just like, I question why I'm like this and other people aren't. I'm like, is there something wrong? Or is it just, I don't know, the way I am?
People sometimes asked for a blood test for anaemia, so that they could see if they needed treatment for this. [See Healthcare: associated conditions].
Elsa managed her initial GP interaction including asking for a blood test for anaemia entirely online. She was glad of this option, as she was ‘introverted’, but as time went on, she realised she would be glad to go in and see someone.
Elsa managed her initial GP interaction including asking for a blood test for anaemia entirely online. She was glad of this option, as she was ‘introverted’, but as time went on, she realised she would be glad to go in and see someone.
When you first went to the doctor and it was with the question of... of anaemia, can you remember... So, I think that... I think you said that was what kinda drove you to think you might go and get some advice: can you remember what you were hoping for? Were there things that you wanted to talk about or were there... can you remember if they gave you any options?
Not really. I don’t really remember it, but I... I think I would have just gone for a blood test. Like I don’t think I would have explicitly said, “I get heavy flows, what can you do?” Because what I would have had to do was book the test directly, and then they would have known it’s for anaemia, or whatever. Also, I think I 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, probably.
So, you didn’t go in and say, “I’m worried about my periods,” you went in and said, “I’m worried about anaemia.” And when you had the blood test and it confirmed anaemia, did they ask you about periods? Did anybody at that point?
No, it was all very like online, so I sort of... I booked the appointment on... I didn’t go in and speak to someone, I just booked the appointment online, went, got my test, and then they sort of like emailed or texted the results, I think. And with like a prescription for iron and the acid.
OK. OK. So, it was all over kind of an online forum. Was this in Covid?
It... it was probably at the end of Covid, yeah.
Mm, OK. But... so you don’t remember anybody ever speaking to you or talking to you about it?
No.
I mean, is there any way, if you’d been given a choice, how might you have managed that first going... going to the doctor’s?
It probably sort of depends, like, mm, at the time, I probably would have preferred to do it online, but that’s just because I was sort of a lot more introverted; whereas now it’s like I wouldn’t mind going. Also, because sort of having done a lot of emailing and back and forth, it’s sometimes it’s nice to just talk to someone and not have all the, like, complication.
Yeah.
So, I think it’s good that there are options. I think it’s good to have sort of being able to do it online, maybe being able to call, or go in person, or text, or whatever, ’cause I know that for a lot of people, they would rather not book an appointment than just walk in or call, or whatever.
So they would rather just be able to go?
Yeah.
Experiences of asking for, or being offered, tests to look into periods and period pain
Wanting to know whether something might be causing or contributing to difficulties with periods and period pain could be related to how young people made sense of their period. [See learning about periods from experience]. This also could relate to what young people knew or had learned about periods, including about health conditions that can be related to period pain, like endometriosis, adenomyosis and PMOS (used to be known as PCOS). Some young people reflected on how it is hard to look things up when you do not know they exist or what they are! [See learning about periods: information young people wished they had known earlier].
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Endometriosis is a condition where tissue similar to that lining the womb is found outside the uterus. It is thought to affect up to 10 percent of people who menstruate. Although people used to think this was rare, we now know that endometriosis can happen in teenagers. Endometriosis can cause no symptoms, or can be associated with period pain, heavy period bleeding, pelvic pain (pain in between periods), and fatigue. It can be linked with difficulty getting pregnant. The NICE guideline on endometriosis suggests this diagnosis is considered in people, including teenagers, with these symptoms especially if treatments like hormonal contraception or painkillers like naproxen or mefenamic acid have not helped with them, or not been acceptable or tolerated. There is more information in the resources section. Endometriosis can be difficult to diagnose and needs specialist tests for a confirmed diagnosis. The ideal test is a laparoscopy, which is a type of operation where a tiny camera is put through the belly button, and which needs a general anaesthetic. Other tests that can be used are scans, including ultrasound scans or MRI scans. One difficulty is that none of these tests are perfect – and a ‘normal’ or clear scan, especially if it was an ultrasound scan, does not mean someone definitely doesn’t have endometriosis. Adenomyosis is a condition where tissue like the lining of the womb extends through into the muscle layers of the womb. It can cause heavy and painful period bleeding. It used to be only diagnosed in older women, but the possibility of this condition is increasingly recognised on ultrasound. Adenomyosis and endometriosis can overlap in some people, but it is thought to be different from endometriosis. While they can overlap, people can also have either without the other. |
Dr Katy Vincent explains about endometriosis and adenomyosis and how these can sometimes be related to period pain and bleeding. However, she says the most important thing is having support for impactful symptoms, whatever the cause.
Dr Katy Vincent explains about endometriosis and adenomyosis and how these can sometimes be related to period pain and bleeding. However, she says the most important thing is having support for impactful symptoms, whatever the cause.
So, endometriosis is really common. About 1 in 10 women have it. We know that you can have it when you're younger. For other people, it develops when they're older. The endometrium, that's the tissue that lines your womb. So that's the tissue that grows each month and that you then shed when you have a period. Endometriosis is where that tissue ends up outside of the womb.
So, the most common place we find it is on the lining tissue of your pelvis. But we can also find it on the bladder, on the bowel, on the ovaries, or sometimes in sort of further away places. For some people, they don't get any symptoms from that at all. But that tissue does grow each month and it does bleed in the same way the lining of the womb in the right place does. And so, we do find that for other people that will cause some inflammation and some irritation and some pain, and that can then go on to cause some scarring and some thickening of tissues. And so that's what endometriosis is.
Adenomyosis is a related condition. But this time the lining of the womb stays within the womb. It just ends up in the muscle layer of the womb. And again, it still behaves exactly like the lining tissue in the right place. So, we see that it grows and it bleeds. And muscles don't really like that happening within them. So, they get a bit sore and bruised, a bit like if you had a little tear in your calf muscle, for example, when you over exercised.
And so, people with adenomyosis will often find that their periods are really heavy and really painful. I think the important thing to know, though, is that both of those conditions are much less common than just having period pain or heavy periods, for example. So only 1 in 10 people will have endometriosis where it was 30 to 40%, so 3 to 4 out of ten will have period pain bad enough to interrupt their life.
So just because you have period pain doesn't mean that you have an underlying condition like adenomyosis or endometriosis.
But what's important is if you have symptoms, then come and see us. We're happy to see you and we're happy to offer treatments. Whether or not we find a disease underlying this.
When people did know about these conditions, and specifically asked about them, some recalled being told that either the condition or the tests were not likely, possible or available to them because of their age.
Zaynah was worried that nothing would be found from her laparoscopy and was ‘quite happy’ that they found endometriosis which meant that her pain ‘had a name.’
Zaynah was worried that nothing would be found from her laparoscopy and was ‘quite happy’ that they found endometriosis which meant that her pain ‘had a name.’
When you heard that, after the laparoscopy, can you tell me how that... what that meant to you and how that felt?
I think I was quite happy that, like, all of this pain had a name and that, like, it wasn’t nothing. Like, because I feel like before I went into that laparoscopy, I was quite scared because I was like: ‘imagine having this and nothing shows up,’ and I’d like, wasted resources and maybe there’s someone else who needed it more than me. Like, I feel, like at this point I was quite convinced that it was all in my head, like the pain. Like, I was like, with blood, like you can physically see that, but with pain, it’s whatever you say, like no one is in your head to say that like, your pain is there, if that makes sense? I feel like I did struggle with that quite a bit. So, I feel like it was quite a relief that, like, something did show up, yeah.
Sarenna said that when she saw the doctor, ‘they were just asking like kind of like: “Why do you think you’re getting them?” and stuff like that, and then I’m just saying that like: “Oh, I have cramps,” and stuff, and they were like: “There’s not too much you can do about it,” ’cause they don’t... like ’cause obviously they were saying stuff about like endometriosis, and stuff like that, but they’re like: “There’s no way to really properly know about that.”’. None of the tests used in evaluating possible endometriosis are 100 percent reliable, so that even if they are reported as ‘normal’, or do not find anything definitive, this may not mean that there is no possibility of endometriosis. Some of the young people we spoke with struggled to make sense of this.
Ivy asked her specialist for an MRI scan. When it was reportedly normal, she was discharged from follow up without another appointment by letter. She understood they had said they would not do any further tests like a laparoscopy because of her age.
Ivy asked her specialist for an MRI scan. When it was reportedly normal, she was discharged from follow up without another appointment by letter. She understood they had said they would not do any further tests like a laparoscopy because of her age.
So did you need a re-referral each of these times—
Erm...
—or was this... you were still under them?
I think I was still under them; I was only referred twice once I changed G... GP practices.
Mm.
Yeah, so then I remember going in and I said, “I’ve done loads of research and I know endo... endometriosis...” which I thought that I had, and I may still have, I’m not too sure, “can be diagnosed with an ultrasound,” but it’s better to have an MRI. So, I basically said to him... and then he didn’t want to re... refer me for an MRI, obviously due to the cost on the... the NHS, and he was... he was basically giving me loads of info... information. Like they... they usually don’t de... de... detect it on MRIs and you... if you’ve got it, they probably won’t be able to see anyway. So, basically gaslighted me almost, which I sort of identified that, so I kept pushing, and although it sounds bad, I literally said to him: “I’m not leaving unless I get referred for an MRI,” and he did it. So with a bit of pushing he did that, and then I went along and had that, I think this was June, the end of June this year, and they couldn’t give me the contrast dye for a cannula. So, the sort of results were impacted a bit ’cause they couldn’t actually outline the areas inside me, but I was told that was clear, and since then I’ve had... I haven’t been back to the doctor’s.
Have you got any follow up with them?
No. I got a letter saying that I’m being discharged, but I didn’t have any say in that, they just told me I was being discharged.
Did you... did they ever talk to you about other tests or... or laparoscopy?
No, no.
No, you never...
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.
However, when there was a shared understanding, this could be helpful.
Liv says it is important for doctors to explain to young people why tests might (or might not) be chosen or useful, so that they can understand the decisions and options.
Liv says it is important for doctors to explain to young people why tests might (or might not) be chosen or useful, so that they can understand the decisions and options.
Most of my hospital appointments up until then had been kind of 15 minutes: “Nothing we can do, sorry, like, come back in a few months, maybe.” But that appointment, I think we were in there for a... an hour and a half, with the lady that was at the hospital, and it was kind of the best appointment I’ve ever had, because something actually came out of it. And she... she told us things that I hadn’t been told before, that I didn’t know about, the opt... other options that we could have, reasons why maybe these things were happening, and she said that it could be endometriosis and PCOS, which is what Mum has, and it could also be adenomyosis, which is just slightly different from endometriosis, but it’s not found as much in younger people, or just as well as endometriosis. And she said, “OK, we can... I know you’ve done loads of blood tests, you’ve tested for everything, but have you done M... MRI yet?” and we said, “No, we haven’t,” and she said, “OK, I’ll book you in for MRI, and if there is something, it will show it.”
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.
As well as age being suggested as a reason for not performing a test, age was also used in explanations about how likely a young person was to have period pain, or a health condition. People told us it was hard to find information specifically by or about young people online [See learning about periods: information from other places]. As Scarlett explained ‘I only saw like stuff to do with, you know, older women like 30-year-olds and 40-year-olds and like scans that you can get, but for... for us, scans didn’t really do anything.’ Lola said that she was told her concerns about PCOS (now known as PMOS) and endometriosis could not be looked into until she was 18 years old. She told us that she was advised that the type of ultrasound scan that would be best was an internal one, which would not be possible until she was 18 years old. Although this age restriction is not in line with NHS or radiology guidance, this is what Lola understood from the conversation.
Dr Neda Taghinejadi talks about PMOS (also known as PCOS), which can affect how often periods come, along with other changes in the body. It is difficult to diagnose definitively in teenagers, but if worried she advises young people to see a GP.
Dr Neda Taghinejadi talks about PMOS (also known as PCOS), which can affect how often periods come, along with other changes in the body. It is difficult to diagnose definitively in teenagers, but if worried she advises young people to see a GP.
So PMOS ( Polyendocrine Metabolic Ovarian Syndrome) used to be called PCOS (Polycystic Ovary Syndrome) lots of people will be familiar with the term PCOS. But the name recently changed to PMOS because it better describes sort of what's going on in the body.
And PMOS stands for polyendocrine metabolic ovarian syndrome. So PMOS is very, very common. And some of the symptoms that people with PMOS might experience could be things like irregular or infrequent periods, periods that are heavy when they do come. Skin changes like excess hair growth or acne. And it can sometimes affect how your body handles sugar.
It's a really common condition and it can affect different people in different ways. One thing just to be aware of is that, as a young person, doctors are very cautious about diagnosing it definitively when you are younger. So, for example, within eight years of your period starting. And that's because there can be so many changes to your periods anyway during that time.
But still, if you suspect that this might be relevant for you, please do see your GP.
Polyendocrine Metabolic Ovarian Syndrome - PMOS (formally known as Polycystic ovarian syndrome - PCOS) is a hormonal disorder associated with irregular periods, and hyperandrogenism (acne, changes in hair patterns, raised testosterone levels). It is linked to metabolic conditions including insulin resistance, overweight/obesity and type 2 diabetes (Polycystic ovary syndrome - NHS 2026) . It can be diagnosed on the basis of irregular or infrequent periods, signs of excess ‘male’ hormones like excess facial hair, or seeing enlarged ovaries with lots of immature follicles on a pelvic ultrasound scan. Guidance advises caution in diagnosing this in teenagers, especially without clear evidence of irregular periods. In the UK, NICE CKS (National Institute for Health and Care Excellence - Clinical Knowledge Summaries) suggests considering young people to be at risk of, rather than definitely diagnosed with, PMOS before they reach maturity, defined as 8 years after periods starting.
Candice and Liv were told that they were too young to be tested for polycystic ovarian syndrome. While some young people, like Jayden are diagnosed with PCOS (now known as PMOS) with specialists during adolescence, others told us about their experience and understanding after hearing that they could not have specific tests yet. Candice found it difficult to make sense of the responses she had to whether she could have tests for her period difficulties. She recalls how ‘my mum, she started questioning, and she’s like: “Oh, is there like any possible like scans she could get?” And they kept saying “no, she has to wait another eight years before she could do a scan”, as like part of the rules, and my mum’s like: “What if it just gets worse? And we don’t know what it is,”’ When she saw a doctor when travelling overseas to see family over the holidays she had a scan and was told she had PCOS (now known as PMOS). She hadn’t yet talked to her doctors in the UK about this.
How people felt when they heard about the results of tests to look into period pain
Young people who had test results that helped explain their symptoms told us what receiving a diagnosis had meant to them. River said that getting a diagnosis of endometriosis in the context of persistent difficult symptoms made him feel ‘like I wanted to cry. Not so much like out of sadness that I did have endometriosis, but more out of like it took me so long to get here and I finally got proof… and like people would believe me in what I was saying.’ Having a diagnosis helped him navigate support and time off school. Jayden finds that having a diagnosis makes things easier with other people: ’cause everybody knows that I’ve got like PCOS, and that is painful, so it’s like if I do just need to like stop for a minute and I’m like: “I’m in a lot of pain,” and for the most part, everybody knows and understands’. Candice felt ‘relieved’ to hear that she had likely PCOS because it helped explain the ‘reasons why’ she had changes in her weight and hair since puberty, alongside the difficulties with her periods.
Zaynah was worried that nothing would be found from her laparoscopy and was ‘quite happy’ that they found endometriosis which meant that her pain ‘had a name.’
Zaynah was worried that nothing would be found from her laparoscopy and was ‘quite happy’ that they found endometriosis which meant that her pain ‘had a name.’
When you heard that, after the laparoscopy, can you tell me how that... what that meant to you and how that felt?
I think I was quite happy that, like, all of this pain had a name and that, like, it wasn’t nothing. Like, because I feel like before I went into that laparoscopy, I was quite scared because I was like: ‘imagine having this and nothing shows up,’ and I’d like, wasted resources and maybe there’s someone else who needed it more than me. Like, I feel, like at this point I was quite convinced that it was all in my head, like the pain. Like, I was like, with blood, like you can physically see that, but with pain, it’s whatever you say, like no one is in your head to say that like, your pain is there, if that makes sense? I feel like I did struggle with that quite a bit. So, I feel like it was quite a relief that, like, something did show up, yeah.
Liv said that hearing that her MRI showed endometriosis was ‘such a good day’ for her because she now knew what it was. She recalls being advised by a scan operator to keep going back and pushing until she got the answer she wanted.
Liv said that hearing that her MRI showed endometriosis was ‘such a good day’ for her because she now knew what it was. She recalls being advised by a scan operator to keep going back and pushing until she got the answer she wanted.
And so, I had... I had a loads of trips over the summer, so I kinda forgot about it, and then I had my MRI in September, I think, at the start of Septem... September, before we went back to school. And usually, if you don’t get... if you don’t hear anything for the... for the few weeks after, you kind of think like: ‘nothing’s come out of it,’ so I’d kind of lost hope, and like there... there was nothing we could do and it was kind of I’d have to wait till I was 18 to test for PCOS, and then get treated for PCOS. But then we... when we came home from... when I came home from school one day, there was a letter from the NHS and it said, “We’ve got the MRI results back, you had... there are traces of endometriosis and adenomyosis, and there’s nothing more we can do than what we’re already doing, we just have to wait now till you’re older for us to test for it.” And so, it was kind of... it was... it was su... it was such a good day because it was... we were kind of... there was... it wasn’t a dead end, it was, we knew now, we knew that it was endometriosis, we knew that it was adenomyosis, and we knew that it was something and we knew what it was.
And I was really struck by what you said about the day you got the letter with your result, that it was a... a great day. Can you tell me any more? Or... or a little bit about what that meant to you, and what made it a great day?
Yeah.
Does that make sense? Because that feels really important.
Yeah. It was kind of, again it... after three or four years of so many dead ends and tests with no good results, and not hearing back anything, and being told it was nothing, or that I was being dramatic, or... and then finally getting a letter and saying, actually, it is something, and that it is something important that we need to look at, it was just... I... I’d usually, when there was a letter from the NHS, it’d be: “Thank you for coming to see us,” like, and that’s it, and nothing else, but kind of getting... actually getting a result and being told that it was something, and that I was right, and I... and it kind of validating what... I was... what was happening and what I was going through, and finally be able to say, actually, the pain I am in, it’s actually a condition, and that it’s something and I’m not just saying, “Oh, I’m in pain,” or saying that: “oh, I’ve just got... I’ve got really bad period cramps,” ’cause it’s not it’s not just really bad period cramps, it’s a condition. And also, being told that there is a very high chance that it could also be PCOS, but that they can’t 100 percent say until I’ve been tested for it, but that I can be treated for it, and that it’s... we’re working towards me getting better now.
Mm.
But yeah, it was... Well, I was in the back of the car and like I read... and I read the letter and I was expecting it to be: “We didn’t find anything,” like, and that’s it. And just reading it and saying... I took a... I took a photo of it and then sent it to my Dad, ’cause he was at work, but I just started smiling, and Mum looked at me in... in the mirror of the car, and she saw me smiling and said, “What is it?” and I told her that they’d got the results back from the MRI, and I think she was happier than I was that it was finally something that... something, and that I’d been told that I’d finally got a result. And ’cause I... yeah, I’d kind of got a... got a bad view of hospitals, and things like that, because of just being turned away, and like uneventful hospital trips, but there being so many of them, and so many of them being uneventful, and so many blood tests that had no result. And I have... I’ve had like three ultrasounds, and internals, and things like that, and just nothing coming out of it, and just, yeah, it’s just been...
I think the... the... when it started to get better, there was a lady who did my internal, she... she kinda said... we told her what... what had been happening, she said, just like: “Keep pushing and keep pushing back to...” like: “go back to the hospitals, try... keep going to try and get a result because you... and you’ve just got to keep... keep get... asking for it until you get... get the answer you want.”
However, not all diagnostic journeys were straightforward, River was confused and distressed to have a letter contradicting what was said at the clinic and in A and E. He and his parent would have preferred the opportunity to have a conversation about the results and be able to ask questions.
River was told his MRI scan showed definite signs of endometriosis which mapped onto his pain. He was referred to a specialist clinic. A letter arrived saying after review it was now not clear whether it was endometriosis (read by an actor).
River was told his MRI scan showed definite signs of endometriosis which mapped onto his pain. He was referred to a specialist clinic. A letter arrived saying after review it was now not clear whether it was endometriosis (read by an actor).
River: I... I asked them... So there’s different stages of endometriosis and I asked them what’s... like what stage of endometriosis I had, and they told me that I had stage 2, possibly stage 3 endometriosis, and I wrote down, like, where was it, and they said that I had it kind of like... they... they... like they were just reading off the report and they showed us the report and we read it.
Mum: But that was actually a key moment that he said, “Have you ever seen a report or anything?” and we went:—
River: “No,” yeah.
Mum: And it was like quite a... and so he said, “Would you like to read it rather than me just...?” you know, and we said, “Oh, yeah, that’d be really good.”
River: Yeah.
Mum: So you... you started to read it. And so, this thing of, you know, people not feeling like they don’t believe you, you know, where you’re feeling your pain, you could... on the report,—
River: Yeah.
Mum:—it seemed to follow where the areas you’ve been feeling your pain.—
River: Yeah. It... it was like it... it was saying about compartments again, but then it also said that I had endometriosis on my appendix, and then I also had it... I forgot where it was, but it was also on the other side. And they said that I had a thickened lining of my womb, or something like that.
Mum: And I think one o... o... ovary was sticking.
River: One ovary was sticking to something.
Mum: Was it the appendix?
River: Yeah.
Mum: Anyway, but the thing was, like we can’t remember the verbatim report, but it then again, it was another moment when you... you felt as if... that it was... you’re not imagining these areas of pain.
River: Yeah.
Mum: Clearly there is something happening here, so... And obviously the go... the gold standard is having a laparoscopy to confirm things, but just having an MRI to confirm what’s happening does help.
River: Yeah.
Yeah. And did you say that you’ve then been since referred to a specialist endometriosis centre? Have you seen them yet or are you waiting?
River: No, so I have been... I... I... I was referred to it, but then I got a letter back and they said I... I think... I... what’s it, they said that I was... I could get the letter out actually. It’s a very weird letter.
Mum: So again, it was another moment where if you read it, you could read it one or two... two ways: either that he hasn’t got endometriosis or actually I think what she was trying to say, the clinician, was it wasn’t severe enough for them to do the operation.
These accounts show how hearing that a diagnosis has been identified can help people to make sense of their symptoms or feel ‘validated’ (Liv). Of course, many people undergo tests that do not definitively identify a condition that can be diagnosed while others are unable to access or negotiate tests. Ivy explained that a normal MRI scan meant she was discharged from specialist follow up ‘without a say in it’.
Scarlett felt upset and ‘unseen’ when her MRI scan did not show anything. She was told that this was possible early on in her period journey, but it was still ‘scary’.
Scarlett felt upset and ‘unseen’ when her MRI scan did not show anything. She was told that this was possible early on in her period journey, but it was still ‘scary’.
And so, when you found out that the tests hadn’t found anything definite, is that right? How... how did that... how did you then feel? And... and was...
Scarlett: I... I felt like very upset that they couldn’t find anything and very, you know, unseen. I remember—
Mum: It’s... it’s strange. It’s... it’s obviously should be a relief that there was nothing there, obviously. But whenever they turn around and say, “We don’t know what this is,”—
It’s very scary —we don’t... it’s... it’s then: ‘oh, are... are we gonna just have to live with this?’
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