Molly

Age at interview: 20

Age at diagnosis: 11

Brief Outline: Molly, aged 20, has had acne since she was 11. She eventually went to a GP for help at age 14 and tried various prescribed treatments. These methods were unsuccessful and she wants to ask for a referral to a dermatologist for Roaccutane (isotretinoin).

Background: Molly is 20 years old and a university undergraduate student.

More about me...

Molly’s acne started when she was 11 years old. Her skin became progressively worse before she visited a GP when she was 14. She has visited various local GPs for treatment in the last nine years. Her triggers for acne include changes in water type/quality (such as hard or soft water in different places) and stress. She also thinks that diet may play a role in exacerbating her acne. 

Molly initially tried prescribed antibiotic creams and tablets. She felt more comfortable using the creams compared to the long courses of antibiotic tablets. She had some side effects, such as dry and flaky skin, but found that both of these were manageable. She was unable to take the contraceptive pill due to family health risk factors. Molly also tried at-home remedies such as lemon juice and toothpaste, but she found that they burned and were not effective. She avoids wearing make-up on her face and has cut out dairy from her diet to see if it will improve her skin. After much deliberation, she is starting to consider trying Roaccutane (isotretinoin). She was against this medication in the past because she read about the possible side effects (e.g. depression) and did not want to jump straight into what is considered a “last resort” prescription. However, after 9 years of visiting local GPs with no effective treatment for her acne, she feels ready to ask for a dermatologist referral for Roaccutane. She has sought out information about the side effects and plans to take the medication over the summer so her parents can monitor her. 

Molly has had some negative experiences during GP consultations, primarily when GPs have been insensitive in discussing her acne. She describes the process of finding a good GP as “trial and error”. Molly believes that GPs often think that acne is not a legitimate reason for seeking help and that they see it as just a natural part of puberty. However, Molly feels that coming to the consultation with a lot of knowledge about acne and treatment options has made GPs take her more seriously. Nowadays, she feels like she has more control over her treatment decisions. Molly appreciates that her GPs have told her that acne treatment is not a “miracle overnight cure”, giving her a realistic set of expectations for treatment. Molly has sought information online and finds the acne forums especially helpful. She believes that the wide variety of opinions and experiences shared on forums are useful in creating a full understanding of acne management. However, she believes more information is needed on the ways in which acne can be a symptom of another condition (e.g. polycystic ovary syndrome/PCOS). 

Molly feels much better about her acne now, although she still has her bad days. Her advice to other young people with acne is to take control of their treatment and ask a GP for what they want (e.g. specific medication). Her advice to healthcare professionals is to remember that acne can be a sensitive issue for young people. However, she also thinks it’s important that doctors be honest about the severity of the acne and help the patient to be realistic about the estimated length of treatment. 

One of Molly’s GP's showed her a chart for measuring acne severity.

I mean I, since I’ve come to university I’ve gone to like a different doctors surgery, I did stick with him for quite a while. And I found him quite useful like one of his things was like he had like a chart and it had like a numbered boxes and different like shots of skin like with varying scales of acne so like eight was the worst, one was the least like, the most mild and he would kind of like point out where you think you are on this scale. So where I pointed out was kind of much more severe than his diagnosis which actually did make me feel a lot better about it because I realised that potentially some of the like how I was conceiving it was maybe a bit worse than it was at that point. 

So that was a helpful exercise and it kind of, I think it was useful in terms of like maybe calming me down a bit.

Molly finds it challenging adjusting her diet to work out food triggers for her acne.

But like at the moment, I’m trying to also experiment with my diet. So like I’ve heard about dairy, I’m currently cut dairy out of my diet. Only like the last two weeks, like this isn’t like a, haven’t done this for very long. Because I heard there’s a big link between dairy and acne, but like again that might be a long-term thing, lifestyle change, but at the moment I’m still kind of keeping it up and see if that does anything, I don’t know.

How are you finding that change with cutting out dairy from your diet?

[Sigh] I really miss cheese which is sad but like I’m having like soya milk and like almond milk which isn’t, doesn’t taste too different in a c-, it tastes different like if you drink it but if you put it in a cup of tea which is where I use most of my milk it doesn’t taste much different. So I haven’t, it’s been more expensive as well but I haven’t, there’s been a lot of, also a lot of things which I haven’t necessarily sillily, like in a silly way, I haven’t realised they were dairy. So like chocolate I was like, I didn’t realise that was dairy until somebody pointed it out and I was like ‘yeah I should cut that out as well’. So yeah it’s kind of a, that’s been more of like an experimental one, so I’ve probably had a few like blips where I haven’t realised that I’m eating dairy. And like when you’re, I think that those kind of dietary changes like you do have like points where you just completely forget that like you’re, you’re cutting something out especially if it’s like something you’re doing on your own terms rather than like being explicitly advised by a doctor. It doesn’t, you don’t always remember. I had eggs, oh I forgot I had scrambled egg today [laughter] that’s got dairy. Oh gosh, so yeah stuff like that.

Where did you find out about the research that's been on like links between food and acne?

I mean my mum was the one who came to me, like my mum is really into like stuff like that. Like she really wants me to go to like an allergy doctor, which I’m considering maybe cos she thinks that like it’s, there’s a link between like food and acne. And the thing isn’t, because I’ve had to for so long I wouldn’t necessarily know what to take out of my diet because it, yeah I’ve had it since I was eleven so, I’ve always drunk milk so maybe. But I would consider going to an allergy doctor specifically and seeing if there were maybe anything in my diet that like wasn’t agreeing with me. Because I, I mean I don’t know much research on the links between diet and acne but I definitely find like when I eat some foods that that can have an implication, so like I cut milk out because, and diary, because I cut milk out for a while just on kind of advice and then when I ha-, and I had milk again, it flared up. So I kind of assumed maybe there was some, I don’t know if that was necessarily a link or a coincidence.

Molly thinks her acne is affected by water quality.

Are there any other things that can make your acne flare up more?

I have a thing where like, so like changes in water so like when I go ho-, so I live between home and university. So when I come to university and have like the change in water then that usually is, is quite bad and then like I’ll go a few, maybe a week or so and it will calm down. And then yeah when I go home again it’s, it’s the same thing, it’s the change in water which I don’t, I don’t necessarily understand why it happens when I go home because I’ve always had that water but yeah the change in water does seem to have an effect which I don’t nec-, I don’t really understand why.

I’ve kind of just accepted that at the moment that’s a standard thing that it’s gonna happen when I go home and when I come back to uni. I’m not sure if I've just got very sensitive skin to like changes in water, I don’t know how different the water I, it’s a different water area, like I think [university city] like hard water or I’m the opposite so whichever one, I live in the opposite area.

Molly had an upsetting first appointment with a GP but later found a doctor she felt was more understanding.

My first appointment was really horrible in that like I was really in like, it sounds wei-, it sounds weird for it to be an embarrassing illness when like it’s literally on my face and like anybody can see it, like. I feel like sometimes that doesn’t make sense is to be embarrassed about it. But I j-, the first time I went I was really embarrassed and I kind of been trying to goad my mum into taking me for a while because she was really like against…I mean in her, from her perspective it was just a natural kind of puberty thing and I should just kind of, just let it go. But I think once she realised that like it was upsetting me and it wasn’t really going away as like a lot of, I think experiences people during puberty do, she took me. So I went to the doctor and he was like ‘What are you here for?’ and I was like ‘I've come about my skin,’ and his first comment was like ‘Well if you have-hadn’t mentioned it then I would have,’ which made me feel hor-, like really horrible and I was just like ‘okay’. 

But I didn’t go and see that doctor again, I did find a doctor in the surgery who kind of had a bit more of a understanding of it and was a bit more sympathetic because I think some doctors, and the impression I’ve got at times is that they kind of think that with this kind of thing you’re wasting their time because it’s just a natural part of growing up. And like to a certain extent I do agree that like having spots or whatever is kind of a normal part of growing up but there has to be a, a point at which you’re like that's beyond the kind of the normal experience and like I think it’s sad if you feel like you’re wasting somebody’s time when actually like it does affect a lot of teenagers when it goes past that point. But yeah I found a doctor that was quite a bit better and was like really willing to like talk about it a bit more extensively so it was kind of trial and error really. 

Molly would like to see a dermatologist but finds her GPs reluctant.

I think I’ve raised it like twice and both times it’s kind of dismissed that that wouldn’t be something that we would do, cos obviously I’d need like a referral from them. Which at the time I felt was quite like unjustified because like I had been on treatment for a few years and like it wasn’t like, if I’d gone to them like initially and been like ‘I want to see a dermatologist’, like I’m probably, I'm pretty sure that they would want to maybe like have a go at their own treatment. So like yeah, I’ve never actually, maybe if I’d pushed it like I was always like ‘okay well, we’ll do it your way then’ but like I’m definitely at a point now where I’m more willing to be like ‘I want to see a dermatologist’. And I've always like, apart from that I’ve always felt quite in control of the treatment. So now that I’m kind of resolute, maybe I was like kind of half-hearted and like, especially cos I always linked the dermatologist to the stronger treatment, which I was unsure about. So I didn’t really force it. But definitely now that I do want to see a dermatologist I feel comfortable to be like, I don’t know how that will work out but I think I can kind of ask for it, I won’t feel bad about asking for a referral after like nine years of seeing GP’s locally.

Molly finds it helpful to sometimes have her mum’s support with acne appointments and treatment.

Do you remember what sort of age that first transition would have been where you started going to the appointments on your own?

I think it was probably like once I was just going for like, so I initiated a lot of check-ups on my own, so the doctor would be like maybe come back in like two months and when it was just check-ups like it didn’t really make sense, and I wasn’t having any like side effects, it didn’t really make sense for my mum to come because I was literally just going there to say ‘it’s all fine can I have another prescription?’ So once I was like in a course of medication, she didn’t come but when I was exploring my options and going to different doctors, that’s when she did come. And like so, I mean it probably sounds quite sad, when I go to the Roaccutane (isotretinoin) my mum is coming with me to the doctor just because like I think asking for like a referral can be quite daunting so it would be useful to have somebody else there. 

And when I go to the dermatologist my mum will also probably go with me, because I mean like she’s also very aware of like the history of it so it’s sometimes useful to have somebody in the surgery with you. Especially if it’s something you’re embarrassed about, like my mum’s not gonna be embarrassed on my behalf about it, I say she’ll probably be, she need, she doesn’t generally interject but like if, if I wasn’t saying something like she’d probably be willing to mention it.

Yeah. So that’s like, she knows your history of treatments and stuff as well.

Yeah, I mean she knows kind of, I mean more like my history of like how long I’ve had it like and she knows I’ve had a lot of like medication. I mean even I’m not very well versed in like the history of medication, I’d probably need to look at like my medical records.

Molly thinks GPs should do more check-ups with patients taking antibiotics for acne.

I don’t necessarily know all the, the names of them because there’ve been quite a few. But there’ve been like antibiotic medications, which the only reason I have been wary about taking them is that like I don’t necessarily feel like the doctors I've seen there’s not much like, …like any check-up has been initiated by me and so I kind of felt uncomfortable with being on antibiotics cos it’s, obviously it’s a long term thing in my case, I didn’t necessarily want to be on antibiotics for that long period of time without feeling that like I was, had doctor who was kind of continually aware of it and since, yes since I was initiating the check-ups that didn't really feel like that, that way to me and I kind of feel a bit more comfortable about creams than pill medication. 

Molly hasn’t tried hormonal contraceptive pills because of a family history of deep vein thrombosis. She wants to have a test to find out her risks of this.

I had like one doctor offer like, when we were talking about the contraceptive pill as a thing, she wanted to do like a test, like a lipid test or something like a scan. And then she was, but she was like only there for a little while and then I went to see another doctor and they were like that’s really, it might not be lipids I don’t know much about science, but they were like that’s a really expensive test, what she wanted. It’s basically to see like whether I would have like whether I would be inclined to like have a blood clot, which I wouldn’t necessarily like to know either like I, so I probably would’ve said no. But yeah, when I went to s-see another doctor they were like ‘those tests are really expensive and like we don’t really use them for like this purpose’. Cos I wasn’t like going because I was, I felt like I was at risk of having a blood clot. That has been, so that’s been offered to me but that was kind of blown out of the water by another doctor and I would’ve turned it down if I’d been offered it because I just wouldn’t, I probably wouldn’t wanna know.

Molly talks about decision-making and isotretinoin. She also has some unanswered questions about the treatment.

Could you tell me a bit more about why for quite a long time you didn’t want to go on Roaccutane (isotretinoin)?

I mean I think, there’s a few reasons. The first one was that like because it was a last attempt I didn’t want to take it and not have any result from it and then be like ‘okay well I’m stuck with this then’ so it has been a kind of thing where I’m like I’m willing to try everything else and go through that process and, which takes a long time and I spose I’ve probably had a bit of patience in doing that. But also like there’s, there is a lot of stuff I read in, in the newspapers about like links to depression and suicide so the more I looked into it the more I was kind of, not sceptical I wouldn’t say that, but willing to look past that aspect. But for like a long time it, it didn't seem like a good idea because I was like a lot of the medications I do have don’t have those kind of side effects like supposedly. So why would I then switch to one that did? But I’m at this point I’m like ‘I’m just gonna go for it’.

I mean I decided to go on it in this summer because like I don’t suffer from anything like depression or anything, but that is a link that keeps cropping up. So I think if I take it when I’m at home then I have my kind of mum and dad to kind of monitor my moods potentially better than like my flat mates could and like I don’t really expect them to monitor my moods either like that’s not their job. So in that sense, I’ve gone for that. I‘ve heard that like it can give you like joint pain and that you have to have, so you can’t get pregnant on it and you need to have like monthly pregnancy test and blood tests because like it has a big impact on your liver. 

But I’m not, I’m not sure of the mechanics of the pill itself but I’ve heard that a lot of people who have taken it have had quite dramatic results. But then that is the most generally, I think the most severe acne has, is given Roaccutane. But I don’t know why it's different from other medication, that’s never actually been spelled out for me like, what it’s doing differently from anything I’ve taken before and like why is Roaccutane like, why is there more caution around Roaccutane? Cos it must be interacting with like your liver differently and your organs but I don’t know I’ve never had it explained to me like in what way.

For Molly, over-the-counter brands didn’t work well and were too expensive in the long term. She thinks it’s better to get products from the doctor.

I’m personally I’m not for like buying from a pharmacy a lot of medications just cos I was saying like it’s difficult to sustain financially for the amount of time I think you would need to have it and also like it’s just there, there’s so much stuff out there that I feel like I’m unlikely to find like a miracle cure on the market that I’ve never found from like a doctor. So yeah I don’t really use them. But for a long time I did but I didn’t see any change personally.

And so those would have been like the branded ones like…

Yeah.

…Clearasil and Neutrogena and stuff?

I feel like they probably work for milder acne and like a few spots or whatever but I nev-, I didn’t find them very helpful. But that, but that was potentially because I couldn’t afford to sustain them, like had I been able to afford, cos some of them are like £14 for a small bottle, had I been able to afford to have that over, and also you can get through those bottle in like two weeks, three weeks or something. I’m not sure what the impact would have been, but that’s a difficult method to sustain so I would always say go to a doctor if you can just like purely financially it’s a lot more like, it’s a lot easier to afford and potentially even it’s free.

Before she went to her GP for help with her acne Molly bought skincare products from her pocket money but found it was not sustainable.

I think I was kind of, I bought a lot of over the counter like, I dunno, Neutrogena whatever, stuff like that which if I was to advise anybody it would be that a lot of that stuff is really expensive and the like the amount you need cos, cos obviously even with that stuff it’s, you can’t have a short term solution generally. So being able to afford to buy those things again and again and again I find that I couldn’t sustain that. Like I was like 11 years old, I maybe got like a pound a week, so that was kind of impossible. 

And so those would have been like the branded ones like…

Yeah.

Clearasil and Neutrogena and stuff?

I feel like they probably work for milder acne and like a few spots or whatever but I nev-, I didn’t find them very helpful. But that, but that was potentially because I couldn’t afford to sustain them, like had I been able to afford, cos some of them are like £14 for a small bottle, had I been able to afford to have that over, and also you can get through those bottle in like two weeks, three weeks or something. I’m not sure what the impact would have been, but that’s a difficult method to sustain so I would always say go to a doctor if you can just like purely financially it’s a lot more like, it’s a lot easier to afford and potentially even it’s free.

Molly pays for her prescriptions now but thinks you get a good amount of product for what you pay. She thinks paying for prescription creams has made her more likely to stop a treatment that wasn’t giving results.

The prescription charges are like £8.20 and the, the doctors I found are very willing to give you like quite a, a good amount for that. So like enough to last me like two or three months maybe so that’s, in that sense that’s very affordable I think. But yeah, I did have it free for a long time and it's definitely made me more, even though it’s not a massive expenditure at all, it’s made me more aware of like really being in control of the…cos if I’m paying for it like directly, being in control of what I have and if I don't think something’s working, like I didn't think this cream was working and I didn’t see the point in paying for it which… maybe when I wasn’t paying for it, I was just like ‘well we’ll carry on and we’ll see’ I think it made me a bit more maybe critical of, of like treatments now that I am paying for it. But I mean I think doctors that I’ve had have generally been quite good in like giving a, a substantial amount, I’m sure there’s limits on what they can give you but like a substantial amount for the prescription charge.

Molly compares different sources of information. She finds internet forums most useful.

The newspaper stuff’s kind of been like with the Roaccutane (isotretinoin) that was just stuff that like cropped up I didn’t necessarily go looking for that but it was kind of in a few headlines and stuff, that’s kind of where I saw that. But I’ve, I mean I’ve looked on like forums and stuff, there’s quite a lot of information there. Like I kind of feel like the-there are obviously like information websites, like NHS kind of set up or whatever. But the thing is I’ve tended to go towards it generally being like more experience-based so like I mean forums are good for that in the sense that we have a lot of people giving different perspectives of medication. And also I feel like sometimes their like account on the medication is a bit more candid than on other websites, so that’s kind of where I’ve gone to seek advice out.

I mean I’ve never posted before except for recently where I’m part of like this Facebook group which is like a self-care group, and I posted about if anybody had used Roaccutane cos that’s been the only one where I’ve really felt like I needed more answers like generally things have been quite like well set out. And I got, y-you know, some really helpful responses, like really different experiences which is always really useful because I wouldn't wanna, I-I’d rather go into something like aware of kind of all experiences rather than kind of having like maybe like a party line or whatever.

Even if your doctor doesn’t seem concerned about your acne, Molly thinks you should push for whatever you feel you need.

I think my advice would be like even if you feel that like your doctor is not that concerned about it, if it’s a concern to you then it’s a valid concern. And even if like you don't think it’s that bad or you think it’s really bad like if it’s affecting like your confidence then like medication can seem scary but it’s often like a, a really good way to go and like just ask for like what you need. Like if you do need no-, emotional support then ask for it and if you do need, if you do research and you find you that you want a particular medication or to be, have a referral don’t be afraid, to kind of push it because like it’s your treatment and like you should be really in control of the treatment. So yeah, just don’t be afraid to like say you’re not happy with the medication, say you want to try another medication, or say you want to see somebody else. That would be my main advice.

While it’s good to be honest about the extent of someone’s acne, Molly thinks doctors should acknowledge that a young person coming to see them may already feel “mortified” about being there.

My advice is to just be, be really aware and of the fact that like a lot of teenagers who go to doctors like they’re probably at an age where like it’s just, it feels like it’s mortifying and it’s like the- the worst thing and they probably don’t wanna be there. And it’s not something that I don’t think, nobody enjoys it and like yeah just be really aware that like it’s probably really difficult for them to come to you and, and kind of I think it’s really important to be honest about how severe it is but also be aware that like being too, like there’s got to be a line like being too expressive about how bad it is can also be really unhelpful. And also be honest in the sense that like I’ve never had a doctor who’s pretended it’s gonna work immediately and that’s been really helpful. But had I been to a doctor who had said like ‘this is, you know, a cure, here you go’ that would’ve not been, I would, that would’ve been really upsetting when it wasn’t. Cos yeah it, you do want a miracle cure and the fact is there isn’t a miracle cure so you should never pretend that there is. Which I’ve never had experience of but I would just warn against that in case.