River
River is 15. He started his periods during the COVID pandemic, whilst at primary school, which was a difficult experience because of the lack of preparatory education and toilet access. Toilet access has remained a challenge throughout their school journey. He has marked pain, which was with their periods but is now throughout the whole month, meaning he is always in pain. He has seen GPs and specialists about this, including a paediatric pain specialist and a gynaecologist. He has not found explaining his pain and feeling heard by professionals easy. None of the medications, including hormonal contraception and pain relief, have really helped with his pain. The paediatrician arranged an MRI, which showed possible signs of endometriosis, although they only saw the scan result when it was explained to them when they had been admitted to a paediatric ward with pain. He thought he was going to be followed up by a specialist centre, but had a letter from them saying they had reviewed the scan, and thought it might not be endometriosis, and saying they would not be seen but should have a follow up ultrasound locally in 6 months. He and his family found having this communicated by letter, without scope to ask questions, really difficult. They have worked tirelessly researching endometriosis, pain and options, and this has placed a significant burden of work and effort on them. He is currently not able to attend school because of the daily pain, which is an additional burden. He thinks young people need to trust their knowledge of their bodies and be able to challenge doctors if they don’t think they are right or don’t feel heard. Clips are read by actors.
More about me...
River started his period during the COVID pandemic. He was allocated a set unisex toilet for his class. When he had a period and the toilet didn’t flush properly, a class mate reacted strongly which he found embarrassing and difficult (read by an actor).
River started his period during the COVID pandemic. He was allocated a set unisex toilet for his class. When he had a period and the toilet didn’t flush properly, a class mate reacted strongly which he found embarrassing and difficult (read by an actor).
River: Yeah, it was more when I went back. And like since it was Covid and when people were going back so like we had to share toilets with the boys, and so maybe I had a period and then like a boy would find that since... once a, the toilets couldn’t flush, and so... yeah.—
Mum: And so that... so what you’re describing is an experience: you went to the toilet, you weren’t particularly happy about sharing the toilets at that point—
River: Yeah.
Mum:—’cause it’s, you know, a thing, and some of the... you know, obviously a lot of boys don’t even realise... haven’t been told about periods.
River: Like you can... you could hear his screams down the hallway.
Mum: So, he... so the boy, I don’t think was... I think he... he was thinking: ‘oh, somebody’s really ill,’—
River: Yeah.
Mum:—and immediately kicked up a fuss; whereas probably if he’d had some education about periods himself, he might’ve handled it differently that’s it—
River: That... that... what’s it, the... the first time I... like in my... in my class, wh... when we had period education, was at the very end of primary school, like the very end of Year 6, so that wasn’t very helpful because I had my periods like a year and a half before that.
Mum: So... so coming in, we were having to educate other... other people in his class, and then the... then the school found that they were going to have to start doing the bit about periods, and whatnot, and... but it was kind of already... the stable door was already open on that front, and... But it... yes, it was interesting; a lot of the children hadn’t been—
River: No.
Mum:—given any information.
That... so yeah, that’s really int... I mean, I think that’s a really interesting kind of challenge. So, for you, your period started before you got the education at school?
River: Yeah.
Mum: Yes.
OK.
River: But that my... my mum told me about this stuff when I was like maybe seven years old, before anything happened, so I was already prepared.
Mum: I’ve worked with a charity to do with safeguarding and one of the things they’d always plug was, you know, the... that teaching people their body parts, blah-blah-blah, and I always thought the period thing, if you know about it, whichever gender you are as well, you know, your siblings, your classmates, they can be supportive in that situation ’cause it is a... a bit of a... a worrisome time, isn’t it, when somebody first starts, isn’t it, and you want... you’d hope people can help them, if they’re informed, they could be a bit more empathetic.
River started his periods before many of his peers. He and his mum explain how being asked questions about what periods were like and how to manage them could be a bit awkward (read by an actor).
River started his periods before many of his peers. He and his mum explain how being asked questions about what periods were like and how to manage them could be a bit awkward (read by an actor).
Mum:—and they don’t want to scare them. So, it ended up, you became kind of like the agony aunt of sex education—
River: Yeah.
Mum:—when you didn’t want to be that person.
River: Yeah.
Mm, yeah, so people would come and ask you for advice?
River: Yeah, they... they always ask me things like: “Does it hurt?” Like... oh, like: “What do you use, like, pads, tampons?” whatnot, like, stuff like that.
Mum: All the normal things that you... if you were a kid who hadn’t had them... which again, would you say it was a bit awkward?
River: Yeah.
Mum: You didn’t... you didn’t really sign up to be that person.
River: Yeah.
How... did that change over time as other people started their periods? Can you kind of...—
River: It... it...
—what happened then?
River: —yeah, it was only once I got to secondary school where I met other people who had already started their periods, and so then I didn’t feel so weird.
Yeah. OK. So... so that helped as other people kind of—?
River: Yeah. ’cause then you could just talk to each other about like different experiences.
River has pain throughout the cycle. He tries to remain positive by masking his pain. He thinks doctors should believe what people say about the level of pain they are in (read by an actor).
River has pain throughout the cycle. He tries to remain positive by masking his pain. He thinks doctors should believe what people say about the level of pain they are in (read by an actor).
River: I mean, with the pain scale, I... I don’t really... I... I feel like it’s kind of hard to like tell other people my pain, ’cause my... like other people’s pain levels are zero; whereas my... my... all of... like, my lowest pain level is a four, and so it’s... it’s kind of hard to...
Mum: But you’re... you’re more operating at the upper levels most of the rest of the—
River: Yeah.
Mum:—rest of the time, so... And you found that, I suppose me speaking to doctors…sometimes they don’t always...—
River: Yeah.
Mum: They... And so, this thing of understanding pain, when you’re speaking even to a medical person, they’re trying to get you to justify: are you really in pain?
River: Like one time I went into the A&E, I think it was in the summertime, and it w... it was a guy and he asked me: “Oh, but you... you’re happy and you’re smiling, are you sure you’re in pain?” and I’m just like: “Yeah.”
Mum: So, it’s... do you know like if you’d... and so River copes by we try and laugh about a situation, so that’s a coping mechanism,—
River: Yeah.
Mum:—so we’ll laugh about it, but if... if he went the other way, he’d be crying.
River: Yeah.
Mum: But then you can’t communicate to somebody about the problem that you’re experiencing if you’re crying.
River: It’s... it’s just like I’m... I’m constantly having to mask the pain ’cause otherwise I wouldn’t be able to function.
Mum: And... and you kind of... you present yourself in a... yes, so a masked way—
River: Yeah.
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.
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.
River sees a gynaecologist and a paediatric pain specialist (read by an actor).
River sees a gynaecologist and a paediatric pain specialist (read by an actor).
River: —I mean, yeah, it... it’s like when I... when I did end up going to a gynaecologist, they said that I couldn’t have it because my pain wasn’t... wasn’t cyclical and that it... it wasn’t relating to my periods – my pain was all the time – so I couldn’t have it.
OK. So, it was the gynaecologist that said that?
River: Yeah.
OK. And how... and how did you kinda work with them to end up getting an MRI, or what happened next?
River: That...
Mum: That is interesting.
River: So, we had two appointments with the gynaecologist and she referred me to a paediatrician, and I got...—
Mum: In pain.
River:—I got an MRI through the paediatrician, not the gynaecologist.
OK. And what did... so what did the... so, what... so that was your first appointment with the gynaecologist: can you remember if they suggested any treatment for you?
River: Erm...
Mum: She gave... she gave you another pill.
River: Another... another pill.
Mum: And was it mefenamic? Is that what you got, yeah?—
River: I... I think it was like Microgynon or something like that, it was called, yeah.—
Something like that, OK. So, you tried another pill and some mefenamic acid, and then did you go back to the gynaecologist again?
River: I... I went back to the gynaecologist again either six or three months later. I don’t remember. But she... she kind... like I told her everything, and it—
Mum: Tell her what happened on the first one though. She let slip on the first meeting that if it was endometriosis they won’t do anything if you’re under 16.
River: Yeah, she said that.
Mum: That slip out in the first meeting, and there was a room full of people, I think, [er] trainee doctors, or whatever,—
River: Yeah.
Mum: —and then on the second meeting, so many months later, there was nobody else in the room, just us and the gynaecologist and it just—
River: And she... she kind of had like a pre-plan... planned thing to refer us to the paediatrician and just like leave us.
Mum: And so, it was like minutes with her, can’t—
River: 10 minutes.
Mum:—‘and I can’t do anything for you,’ but she didn’t say that, but that was the vibe we were getting.
River: Yeah, we—
Mum: We could sense that.
River: That... that was when I was like... maybe like just before I turned 14, or when I was 14, and we haven’t seen her since.
River: And then... so, oh, she... was it—
Mum: —her or the paediatrician who referred you to the endometriosis centre?
So, the gynaecologist referred you to a paediatric pain specialist or a general paediatrician?
River: A paediatric—pain specialist, I think.
Mum:—pain specialist.
Mum: So, this is where the: “in your mind,” comes in.
OK. And then... and who... but they’re the people that did the MRI?
River: Yeah.
Mum: But she was... she kept saying, “I don’t know more about... that’s not my area,” every time we said that... but we think this is related to her being a more... a physical symptom. And she said, “But it could be to do with what’s happening in your mind,” which I can understand could be another reason; I do get that.
River: She said something about like the fire-truck theory, or something.
Mum: Yeah. Anyway, but the thing is, she then... and she was good because she said at the end to you: “What would you like to...”
River: And I... I... I... I definitely said that I wanted an MRI scan. That’s... that’s what I wanted out of it.
OK. And then she... and she arranged that for you?
River: Yeah.
OK. And then when the results came through, can you re... and... and... and can you remember what?—
Mum: That... nobody contact us.
River: What’s it? When... when the results came through—
Mum: We were contacted by telephone to be told that we had... there was... they had done an analysis of the report,—
River: But she couldn’t see it, yeah.
Mum:—but the. the... the gynaecologist was on... and fine, they were on holiday in the summer, it’s fine, but we thought probably they would... the gynaecologist would maybe go through the... the MRI. They didn’t. And then we had already got a booked-in meeting with the paediatrician, was it?
River: Yeah.
Mum: But again, they didn’t go through what was on the MRI. Nobody told us what was on the MRI.
River: That was until, what’s it, August 7th is... this year, is when I got the results.
Mum: well—
River: Not the results. It’s when they took... I got a phone call from the paediatrician saying that I did have MRI... I... I did have MRI... I did have endometriosis.
River had an MRI and they were told it showed extensive endometriosis which should be reviewed in a specialist clinic. The specialist centre wrote saying this was not the case, which was confusing, they had no chance to ask questions (read by an actor).
River had an MRI and they were told it showed extensive endometriosis which should be reviewed in a specialist clinic. The specialist centre wrote saying this was not the case, which was confusing, they had no chance to ask questions (read by an actor).
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 [erm] 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.
OK.
Mum: But I also realised there were a lot of people waiting. I also realised they don’t like to operate on under 16s... under 16- 17-year-olds.
River: Yeah. So, the letter says: “We discussed River’s case in our endometriosis MDT last weekend and the MRI images were reviewed by our endometriosis radiology specialist. On the re... on review, there did not appear to be any obvious deep infiltrating endometriosis.”
Mum: So, the deep infiltrating, was the key.
Yeah.
“We also... we also took this opportunity to review her previous ultrasound scan, which confirmed the ovaries were correctly positioned and the feelings were that most of the changes on the MRI did appear to be positional rather than evidence of endometriosis. For reassurance, it was suggested that River could have an ultrasound scan in six months’ time, and I have copied her consultant into this outcome letter to kindly arrange this. Given the distance, given the MRI findings, I do think it is sensible that River is reviewed by the paediatric team at the hospital, yeah, the... the hospital to see if they can add anything further. A laparoscopy may well be indicated, but I think given the MRI did appear to be normal, it is... it is sensible to get the paediatric team here involved at this stage.”
OK. And did that...—
Mum: So, we feel a bit that letter is a bit—
—was that from a specialist... was that... sorry, you feel that this letter was...?
Mum: A bit of a... a bit of a fudge. I do maybe...
River: Like it’s very contradicting what the letter says. It says that... and so...—
it... it... it says that my MRI was normal, but it also says given the MRI findings, like ‘investigate further,’ like it’s very contradictory.
Yeah. And so... yeah, I’m sorry. Ha... ha... so where are you up to now with it all?
River: I’m... we... we’re kind of not...
Mum: We’re le... we feel... we... after that, we felt a bit lost hope again.
River: Yeah. That... that was... that was from October, that letter was.
Mum: And also, that letter was kind of whack... we feel it was whacked off and it would have been nice if that actual consultant personally spoke to River.
River’s mum described feeling like they are walking a “tightrope” between their young person, their education and medical professionals (read by an actor).
River’s mum described feeling like they are walking a “tightrope” between their young person, their education and medical professionals (read by an actor).
Mum: So River was fortunate that I had written in, done as much backup on written notices, etc, to the school, so that I’d communicated things too, and I tried to make sure if a... a staff member was being not helpful, shall we say, that... that then I could communicate directly to them. But not everybody’s... a parent can do that—
River: Yeah.
Mum: —and not everybody has that kind of relationship with their parents to get them to do that as well.
Then the fear is they’re now creeping into me as a parent, and like it... I... it’s... so I’m hanging on a thread of somebody believing us and being supportive on the thread. And you... and I still to this day feel that at any time,—
River: They could switch off.
Mum:—they could switch on us. And then that also affects as a parent, whether I complain about the education side of things now that he isn’t so much in school.
River: Yeah.
Mum: So, I don’t... if I complain, could that put us in jeopardy?
River: Yeah.
Mum: So, I... I feel like we’re on a tightrope between education, the medical profession, and trying to keep this young human being going in their lives so that they’re not missing out, and keeping hope as well, ’cause sometimes, as we’ve explained, some of the interactions are, you know, not always what you expect, blah-blah-blah, and like we were talking about sometimes he giggles or laughs, which is normal at his age, but, you know, then afterwards, you know, he’ll be really upset. Like at... when you’re away from the medical professional and you’re back at home and you’ve re... you know, you’ve thought about it for a while, he could be really upset about what’s going on and—
River: Yeah.
Mum: —and feel frustrated or the... those—
River: Angry.
Mum: —kind of angry, those kinda feelings. So, it is a tightrope, isn’t it?
River: Yeah.
Mum: the education side...
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.