Young people's experiences of periods and period pain

Yeah. Oh, that’s the other thing that’s been really difficult is accessing GPs between my home city and my university city: I’ve basically, when I moved to university, I got crossed off the register for my old GP, and because my... my college said that we had to sign up to a GP here, and so then when I went home, and I think... I can’t remember what I needed to access a GP for now, but I had to re-sign up to my GP at home, which—

Mm, and then you got thrown off the list here.

Yeah, kicked me off here. And it’s... it’s really difficult and annoying because each time I sign up... Well, when I signed up to my one at home, I asked to be signed up as a temporary like user, or something, so it wouldn’t kick me off the one at uni. And they didn’t. I... I filled out a specific form to become a temporary patient, or whatever, and they still signed me up as a full patient, which meant I... I’m now not signed up with a GP at university.

Yeah. And I think that’s a really important thing as well.

Yeah, it’s... [sighs] I just don’t even understand how there’s not a better system for that.

Yeah.  It... it took me... so when I wanted to access the GP at home, it took me... well, I had to go in and get the forms, had to bring the forms back, so that took a few days, and then after that it took them over a week to sign me up. And then like they thank... it’s quite a good GP, so they managed to get me an appointment within a few days, but I think if that had been other GPs, it would have taken like two weeks to get an appointment and then it’s I’ve been almost a month just to get one doctor’s appointment.

So, I remember going to the doctor’s, I think I had a male doctor at first, when I was about... when I was about 13, and I just re... remember being told... like, they didn’t do many checks on me, they just felt my stomach, which isn’t really effective, you know, and they didn’t wanna listen to my prob... to my problems, so I... I would have needed about a 40-minute appointment, but I was only given 10 minutes because that’s what you get at the... the GP surgeries, unfortunately, so I couldn’t go through all of my problems. And like I re... remember going in with this list of problems on my Notes app on my phone of about 20 problems and they told me they couldn’t go through all of them in that session, so I had to pick out the top three, which obviously isn’t that amazing. And I re... remember just being told that people have period pains and I should basically get on with it, and I was like: “I do understand that, but I wouldn’t be here if I didn’t need pain medication or other precautions.”

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.

And, I mean, you talked a bit about finding the phone tricky and the e-consult as an option: are there any things that you think could have made it... could have... can make it easier to go and see a doctor or nurse or get advice about period pain options?

I think... well, the e-consult option was a bit hard to navigate, and I didn’t feel like I was doing the right thing for it; my Mum did have to help me quite a lot with that. But also, I think a lot of my friends don’t even know that that is an option, so maybe just making that more clear as well, because I know a lot of people don’t like to speak on the phone. And yeah, it’s good that they offer it. It’s just like hard to actually find the link to do it, that’s the only thing, and they just like made it... But the doctors were all really nice.  I guess also I was a bit confused as to why they were trying to make me go on the coil bit. And... and yeah, she tried to... she really tried to make me go on the pill early on when I... when I... I mean when I... I can’t actually... ’cause it was quite a while ago, but I think maybe if I hadn’t gone in there with an idea of what I wanted, I would have come out feeling a little bit more confused, because 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.

So... yeah, so that was one of the things I was interested: did anybody... did you ever talk to anybody about the pain or... or what might—?

Yeah, ’cause it was quite explicit that the main reason I wanted it wasn’t for contraception, it was for cramps.  Like, the contraception was just like another thing, and... oh, but I just think they didn’t really have anything to say, they just... they just… I think that’s fine. I don’t know.

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

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

Yeah, yeah. I think, well, listen to basically what they’re saying. If they say they're in pain, actually look into it and also checking up on people, when they're like a few months down the line to see if what they're on is working because especially as a young person, if you're like busy or you might just think that didn't work for me. So, whatever, I'll just leave it. But if you had someone coming to you a couple months later saying did this work and if you can then go, no. Well then you can get another appointment to then find a different option and then they like help you do that is a lot easier than having to do it all yourself.  

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.

But you waited four months for an appointment, so it does sound like you got heard when somebody referred you at least, and so there were—

Mum: I think it was the second referral. We had been round the referral cycle once already, and we saw a different specialist the first time, and they essentially said the same thing. I think that’s when you moved from norethisterone to the desogestrel the first time,—

Liv: Uh-huh.

Mum: —and they said, “Oh, that... that will be fine, that will work, that really will work, give it a couple of weeks, give it six weeks, give it six months,” and then we started the cycle again.

I think it’s... it’s kinda disappointing that it took for me to nearly become... for... it... really ill for the rest of my life, for someone to kind of say that something’s not right. It took for me to bleed for 13 weeks without a break for someone to go: “Actually, that... that’s not OK.” And when I mentioned it to my friends: “Oh, yeah, I’ve been on my period for seven, eight weeks,” the kind of... the... the like the horror that like the... the hor... the horrified look on their face was kind of why isn’t that something that and like medical... the people in the medical field feel when I say that, like, I’ve been on my period for this long, why isn’t that a kinda immediate, like, alarm bells that something’s not right?

And your reaction was that that... So, did you go a couple of times in that 13-week bleed?

Yeah, I kind of... I kind of got used to it, and I kind of... it kind of became something like the normal in my life, and I kind of, not forgot about it, but kind of, it just grow... grew used to it, and ’cause it takes so long to get an appointment with the NHS, periods aren’t seen as important enough to be kind of like fast-tracked to get an appointment, so I had to wait three, four months till my appointment, and I was just blee... like, it was just having it for every week until the appointment.

And then I kind of, a couple of years later, I went back to the doctor’s, tried out different pain medications, that acid tablet, and then finally naproxen. And then I asked for a referral to the hospital, I think it was [hospital name], and I was on the waiting list for six months and then I changed GP practices and the referral was lost, so then I had to be re... re... referred, so altogether it took about 18 months to be seen by a specialist at the hospital. And then, again, I remember just not feeling very valued and they didn’t really wanna listen to me, and were telling me: “This pain’s normal,” when it’s clearly not.

And, again, I had a... a... a male doctor, so I... I didn’t feel completely comfortable with him, un... unfortunately, and I found, like, he was using a lot of, like, medical words, which I wasn’t really understanding yet at that point, and I was like: ‘what is actually going on?’

Was that in an adult gynaecology clinic?

That was an...

Or paediatric?

I think adult at that point.

Mum: So thankfully the private gynaecologist, who’s called Dr... Dr [name], and she’s very good at advocating for women’s health and... and for young women’s health, and she was so helpful. And I think really that, to me, a big problem was that the NHS were saying she was too young to see Gynae, but whenever actually... the Paeds picked it up, they said this was a gynae problem, so we were falling between the two stools.

Mm.

Mum: So, thankfully I... I had... I have, you know, [insurance name], so I was able to... she... we were able to see the private gynaecologist and it was covered through that, thankfully. Although, do you know what, I would have paid anything to get it sorted, but I understand, so... But that I... I feel then that there’s children out there maybe who wouldn’t be as close to their Mums, and Scarlett can talk... feels like she can talk to me about anything, but there’s probably girls out there who maybe don’t have a good relationship with their Mum and maybe some vulnerable families who aren’t maybe as well educated as me. So, I’m just glad that we’ve come out the other side of it, but you just realise that there are people out there that would not be in the same position as me.

Once they started taking it seriously, it was quite good because there was quite... there’s quite a few nurses who also like work in the like health centre on site, and yeah, I feel like they were all really understanding. And then when I... whenever I used to explain my pain to them, they would often be like: “Maybe you need to see a gynaecologist,” but the GP would always say like: “You need to... you need to look at all of the routes that are possible.” So, like I saw an endocrinologist, he thought it was IBS for a bit, so I kept a food diary for like six months. Yeah, there was loads of little things that they thought it could be, and I saw loads of different specialists. And then eventually I saw a gynaecologist. But even she wasn’t very good at the beginning, and then I switched quite a few times. I saw six in the space of from September until March, I saw six different gynaecologists because... And this was... they were all privately because they hadn’t been taking me seriously. They just like... like: “you’re young, like you’re... like it’s fine, like it’s just normal period pain.” Yeah, so I feel like that was quite tough as well.

I think that sounds a extraordinary experience.—

Yeah.

So you had... you had some months of seeing kinda other specialists, so endocrinology and gastroenterology.

Yeah.

OK, so stomach and endocrine—

And a urologist?

And a urologist.

Just two, yeah.—

So, is that ’cause you had pi... bladder symptoms and...?

Yeah.

OK. But then you finally... So can you tell me about your kinda journey through those six [er] consultations?—

Yeah. I feel like that was really like a weird like bubbly time like now, because it just feels like really like a long time ago, but it really wasn’t that long ago. So, when I started in September 2022, think '22, I started seeing consultants privately, like literally from September. And then I’d seen one gynaecologist and she didn’t take me seriously at all, and then she gave me... I can’t remember what she gave me, but it did not help. And then when I took it to the GP, he was like: “I don’t understand why she’s given you this.”  Then he said maybe I should see an endocrinologist, which then I booked to see, because my Mum said that if we went to see another gynaecologist, they might ask if you’ve seen this other specialist, and you can say, “I’ve already done that,” like: “this is where I need help and you need to give me like your advice, don’t push me off to someone else and make me someone else’s problem.” And then I saw another two in between in October and November.

Gynaecologists?

Yeah, two different ones. Then in Decem—

And... and what happened? Can you remember what...?

Yeah, they weren’t very understanding either. And my... yeah, my Mum just wasn’t fine.

So, did your Mum come to all of the appointments?

Come, yeah, she came to all of my appointments, yeah. And, then November I also saw a urologist, but this was on the NHS, and he was like: “I don’t think your issue lies, like, with me and my department here.” I’d also seen a gynaecologist on the NHS in November, and she was quite good, but she’d just given me the pill; I think it was the progesterone-only pill. So, I feel like she was quite good, but regardless of who you see, I feel like there’s a process that they just have to go through it and... [coughs]—

Do grab your glass of water.

—I feel like often that can be quite tough if you’re having to take like four month... four-month gaps in between like seeing—

What, to try different treatments? Yeah.

And if like they’re not working, and having to wait until that appointment can be quite tough. And I feel like by this point me and my Mum kind of knew what we were talking about in some ways, like... like we knew what we wanted from her, if that makes sense? And like the first time I went to see... like she gave me a diet sheet and my Mum was just like: “This just isn’t like good enough,” like: “we need more support than this.” In December I went to see a gastroenterologist and he was quite nice and he also said that: “I don’t think your issue lies with me,” either, so then I continued to keep my food diary. Then I saw the same gynaecologist in February, and me and my Mum had taken like a book of like questions and like things, and she just wasn’t very happy with like what we’d said. I just... I think she might have thought that we were a bit like... a bit too much, like coming on, if that makes sense? So, like... so I don’t think she was very like impressed. Then we saw... then the whole idea of having a laparoscopy was up in the air. So, then I saw someone else privately in March.

So that was the NHS consultant?

Yeah,—

And that was what... yeah.

—and then... yeah, and then I don’t think she was very happy with like the way me and my Mum went about it because we just like... I feel like we were quite full on with questions and things, and like... Yeah, I don’t think we came off as demanding, but I just don’t feel like we came off with loads and loads of questions, and sometimes that can be a bit overwhelming as well for like the consultant if... yeah, like... yeah, so I feel like that was a bit of a weird patch.

And then in March we’d seen someone else privately because at that point teachers at school were also like: “Maybe you should have a laparoscopy done.” So, we saw this consultant privately and he’d done an ultrasound and then he’d diagnosed me with adenomyosis. Yeah, and then we spoke to him and then he suggested that we stay on the NHS with that consultant, because she was quite good, which, yeah, I also thought that she was quite good. So, we stayed on the NHS and then I had my laparoscopy in June. So in between, I did struggle with pain, but like I had... I did have that laparoscopy in June, which I think did help.

And then what did the laparoscopy...?

So, endometriosis and adenomyosis, yeah, yeah.

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.

Were periods something that when you see the general paediatrician, was that something that get talked about in...?

Dad: Yes. Well, but... oh, it tends to be not every meeting, yeah.

Mum: But she just asks: “Has she started them?” and we say, “Yes,” and she says, “And how is she with that?”

Leila: [sound]

Mum: You know, “She needs help at every stage and they’re very painful,” and then we moved on to something else like ears.

OK.

Mum: So, it was... it wasn’t very in depth, was it?

Dad: No.

No. Do you feel like they kinda get enough consideration, given the extent of the impact it’s having on—?

Leila: [sound]

Dad: No. And... and obviously, I mean we see with... you know, with... with [sisters name], with her sister, but it’s... it is very different. But I... I think I... my feeling is that the perspective is that it’s not going to be a significant thing; whereas actually for Leila it is.

Mum: It’s a big thing. It is a big thing, and it’s... it... it’s... it affects her ability to engage with everything else, but—

Dad: And it’s... it’s a quarter of her life, you know, it’s... it’s a week that she’s...

Mum: Yes.

Dad: Yeah

Mum: Yeah, and it’s... it’s looking at it stretching out into the future.

When you went and you kinda asked people about how difficult they were and you ended up having the scan, were you able to have any—

Mum: That was over the phone.

That was over the phone.

Mum: That was just over the phone talking to somebody who just said, “Oh, well, I can book you in for a scan just to...” ’cause I said,—

Leila: Scan.

Mum:—“I’m just worried that there’s something wrong, that, you know, is it endometriosis? Has she got polycystic ovaries? Is it... you know, she’s very hairy.

Leila: Hairy all over, thank you.

Mum: You know, is... is there... are there other things going on?” And they said, “Well, you... we can have a... you can have a scan.” We went in, had the scan, and they basically rang back a couple of weeks later and said, “No, shows it normal.”

And then it kinda that was—

Mum: And that was it.

And would it have been helpful to have followed up?

Mum: They didn’t even meet her, the... the consultant didn’t even see her in person and it was just a phone call.

Dad: And we took one that we’d made [patient passport], and they sort of said, “Ooh, you can get one,” but when you go on the [placename] website, there’s not just one template for a patient passport because I’m... I’m quite good at the tech. There are lots and lots of different one and it...—

Leila: And me.

Dad: —and they tried to work out the one that’s the right one, and then we... we found really the one that we think that is on their own website, of the various options, it’s the best one, but then how do we attach that to her records? There’s... there’s no pathway. There’s no sort of central information and there’s no kind of ‘this is how you do it’, and it’s... that is a little bit—

Mum: We gave our copy to the paediatrician and made her photocopy it.

Dad: Yeah.

Yeah.

Mum: Yes, and it’s just like ‘this is what we want’.

Dad: No.

Was that a kinda general one about Leila health in general, or was that a specific one about managing per...? I mean I guess I—

Mum: No, not... and it wasn’t about manag—

Dad: No, it wasn’t.

Is there a patient... there isn’t a patient passport about periods?

Mum: No.

Dad: But... but we will put it on there, but it’s... I mean although it’s a concern, I mean obviously our concerns around that are huge ’cause it’s like eating, but, you know, if she goes in... into hospital and they bring her just a menu, I mean, you know, she can’t...—

Leila: I do, and... and... and I love penguin.

Dad: —she can’t eat any food by herself. Everything has to be cut up and she needs to be supported and have tiny little bits and it’s... it is... it is worrying.

Mum: Yeah, there are lots of aspects to her care that she won’t be independent with at 18, and won’t suddenly magically...

And is that accounted for or you’re trying to navigate how you—?

Dad: Well, we... you know, you’ve got to… at the mom—

Mum: No, we want to kind of... we kind of want to put it up and put it out there—

Dad: Yeah, and nobody seems to be able to...

Mum: —that if there were an issue, we... we want to kind of have it on her records, and everything, before there’s an issue.

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.

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.