A total number of 16 women were asked to participate on the study group. Twelve participants agreed to enter the focus group. The mean age of the participants was 33 years (range 23—45). The participants (previously) practised mainly cycling (n = 6), triathlon (n = 4), speed skating (n = 4), athletics (n = 2), running (n = 2) and mountain biking (n = 1). A number of women (n = 6) practiced multiple sports. Half of the participants (n = 6) were (ex) elite or professional athletes.
A total of three focus groups took place, each with four Dutch female participants. After the third focus group, the researchers decided no new information was provided, appropriate to data saturation.
Reasons for not reporting the absence of menstruation
The five most important reasons for not reporting the absence of menstruation derived from the interviews were (1) normalizing of amenorrhea within surroundings, (2) the absence of menstruation is not perceived as a problem by athletes, (3) shame and taboo, (4) prioritising performance and (5) denial. Each reason is further described below, supplemented by indicative quotes. The quotes were translated from Dutch, with F = focus group number and P = participant.
Normalizing within surroundings
Participants indicated that one of the main reasons for not reporting amenorrhea was normalization by doctors, coaches and other athletes. Some participants mentioned that the general practitioner told them in the past that the absence of menstruation was ‘part of exercising a lot’, so these women did not report this complaint to the general practitioner afterwards (F2, P2: “Especially, if you have reported it [the absence of menstruation] and a doctor says that it is okay, then you will certainly never raise the alarm again, even if you do not get it for much longer.”). In addition, these women knew several (elite) athletes who did not menstruate, so they thought this was a normal phenomenon, or a sign of fitness (F3, P1: "Because it's very much a shared thing [absence of menstruation], so it is, yes, nobody really worries about it. It's kind of seen as normal anyway, I think, if you are very fit then that is something that comes with it." F3, P3: “In the world of athletics, the girls I trained with at the time, it was also a bit of a thing sometimes, to say, to show that you were fit. Because then you also had a low- fat percentage. It was actually used more among the girls themselves, so to speak, as ‘look I am super fit, because I do not even have my periods anymore’.”).
The absence of menstruation is not perceived as a problem by the athletes themselves
Another reason was that many participants did not experience the absence of menstruation as a problem. For example, women thought it was convenient and also because they had no current whish for children. (F3, P2: "It is the case with me and it [the menstruation] stopped at one point. And yes, I did not really see the seriousness of that. It was like that for a number of years. One, because I found it very easy and did not, did not immediately notice or feel anything about it. So I was not worried either, I did not have a desire to have children."). In addition, they trusted that menstruation would return when decreasing exercise intensity (F1, P4: “Because in the winter, when it was of course relatively quiet with competitions, then I noticed that maybe I was not having my period very regularly, but I was just getting my period. And that it was mainly during the summer period with a lot of competitions in which this was absent.”). The participants indicated that there was an ignorance about the consequences of the absence of menstruation (F1, P4: “You also do not know how it will affect you later in life, because that education is not available.” F2, P2: “Because the fact that I did not report it at the time was really because I genuinely did not know that it was so bad so to speak. And I think there are really a lot of people who do not know that either.”).
Shame and taboo
For some participants, shame and taboo played a role. Women were ashamed of not having their period because they were afraid of being judged for a lack of femininity (F2, P1: “That you are judged on that, that it does not happen, that it does not happen, well that something is wrong then because every woman basically gets her period every month and if it does not happen then maybe there is something wrong with your femininity.”). Also, in some cases there was an underlying eating disorder, which was a difficult topic for them to discuss (F2, P1: “That was partly due to sports and partly an underlying eating disorder I developed at the time” … “For me, it was mainly shame at the time why I did not raise the alarm. Because a lot of other things were also involved.”).
Several participants experienced a taboo around discussing menstruation (F2, P4: “And I certainly think that talking about it is a taboo. That a lot of women still feel like, I would rather not.”). There were different opinions about the relevance of the gender of the care provider or coach regarding this topic (F1, P2: “Now I have a female general practitioner and before I had a male general practitioner. I found it less pleasant to discuss something like that with a 60- year old man than with a woman.” F2, P2: “I have always had male coaches and I personally do not have a problem talking about that… So I feel like that is a much discussed topic. So whether that is a woman or a man does not really matter to me.”).
Performance is priority
According to the participants, performance is an absolute priority in an elite athlete’s life. Therefore, as young adults, they only had an eye for sport (F3, P3: “In an elite sports life or in a phase of that part so to speak, yes, then your goal is to perform… then that is number one. And it really is not anything else. Then you are not concerned with having children or anything else I think.”). According to the participants, performance was also a priority for coaches at the highest level. Therefore, athletes experienced an additional barrier to approach a coach or doctor with any health concerns (F1, P4: “I have to live with it because then I perform better. And if I tell my coach that I have this problem which means I actually have to weigh more, then I will not perform the way I normally would. So of course that creates a huge threshold to present something like that to a trainer or coach.”).
Denial
Some participants knew that a lack of menstruation was not a good sign but did not want to be confronted with this. The elite athletes were afraid that they would have to make adjustments in their diet or training regimen that might worsen their performance (F3, P1: “That you are afraid that if you go to a doctor, that he or she will tell you to change something. So getting fatter, gaining weight, becoming less fit. So that if you go to get help, that someone is actually going to tell you what you do not want to hear.” F3, P2: “It is kind of that it is not normal, but especially something would have to change in your pattern… Especially the fear of that. That exactly… No I would not have wanted to hear that, for example, at the time when I was really sharp, I think at that time I would have especially not wanted to hear that I should have gained, say, 5 kilos.”).
Optimization of care around menstruation problems in female athletes
Participants mentioned several factors that could contribute to an optimization of care around menstrual problems in athletes. The five most important factors distilled from the interviews were (1) informing athletes, coaches, trainers, and mentors, (2) informing general practitioners and other health care providers, (3) conducting more research on long-term consequences, (4) breaking the taboo on menstrual problems, and (5) developing multidisciplinary collaboration between different health care specialists.
The factors are explained in detail below.
Informing athletes, coaches, trainers and mentors
According to the participants, athletes, coaches, trainers and mentors should all be informed about the significance of absence of menstruation in female athletes so that awareness can be created. For example, athletes could be reached through social media or be educated at schools (especially schools for elite athletes).
Informing coaches or trainers during for example course days was considered important because of their signalling function (F1, P4: “Informing coaches, trainers and guidance about this. Those [coaches, trainers] are the people who have to signal it, or at least with whom a cyclist has to feel safe enough to discuss that problem. And that is only possible if cyclists know that this problem has also been mentioned during courses.”). Participants indicated that athletes often feel safe with their coach or trainer, and therefore they should (be able to) start a conversation about menstrual problems. Informing the parents of athletes was also mentioned, because they can monitor the development of their child (F2, P1: “If they [parents] also know more about it, suppose, perhaps, being informed by coaches who indeed know more about it, then they can also keep more of an eye on it. Because they of course see their child every day, so to speak, and they might also talk with them more.”) and identify changes.
Informing doctors
According to the participants, there is still a lot of progress to be made in informing doctors (F1, P1: “I notice that I still have to find out a lot of things myself and then I present it to both my gynaecologist and sports physician, then they will have a look at it. But that there is still a lot of ignorance.”
F2, P1: “At the time [of amenorrhea] I was advised by one general practitioner to just take the contraception pill to induce it, and the other general practitioner said ‘you actually should not do that, your body should do that on its own.’”), for example, by organizing refresher courses or (additional) trainings about RED-S. Participants expected this would enable physicians to better inform athletes. Some participants indicated that a general practitioner or physician does not need to know all the details about the subject but does need to know when a referral is necessary (F1, P1: "But maybe a general practitioner can have some kind of a red flag list, for when should I refer in such cases.").
More research on long-term consequences
Participants indicated that they would like to be educated on the long-term consequences, especially on fertility (F2, P2: "Because I think I am most afraid that my elite sport would do something to my fertility, yes. Because that is really, yes I would find that very bad, so to speak."). They indicated that more research should be done on this subject (F3, P3: "When someone comes, what can you tell them? What are the rates of infertility, I am just saying something, how likely is it that the menstrual cycle will just come back?"). According to participants, this would allow an athlete to be better informed and to make a better assessment of the risks (F3, P3: "The ultimate goal is maybe to provide insight into what it can cause or what it can mean for the future, to provide insight into the dangers.").
Breaking the taboo
Participants repeatedly mentioned the importance of breaking the taboo surrounding menstrual problems (in athletes). In part, this could be achieved by making the existence of the problem known to a wider audience (F2, P4: "And the more people know about this, that this is an issue at all, the more people will also be interested in it and will talk about it more easily."). The way in which menstrual problems are discussed with an athlete by a coach or doctor is important according to the participants (F3, P3: "I think the way you start the conversation matters a lot. For example, you can say 'I know of women with a lot of injuries that they very often do not have their periods, that actually happens quite often, is that the same for you?' That is already a different question than simply asking an open question, I think.") to find out how an athlete can be helped in the best way (F3, P3: "That is actually the most important thing, that you start the conversation. What belief does someone have, what idea does someone have about it? I think that is the most important thing.").
Multidisciplinary collaboration between different specialisms
According to the participants, a general practitioner ideally plays an important role in the care surrounding amenorrhea. Besides a signalling role, the general practitioner could assess what kind of help an athlete exactly would need (F3, P3: "I think that is just the job of the general practitioner so to speak. That you are going to look at what is the request for help and what is the problem, so to speak, and who can I involve."). Physical therapists and chiropractors may also have a signalling function (F3, P1: “I think many athletes also see physiotherapists, chiropractors, a bit of paramedical care. I could imagine that they also have a signalling function. They see you, quite simply, in your underwear so they can see how you are, how trained you are or not. Certainly at the moment when you are lying there on the couch every week, then they might be someone who can start that conversation much easier than, for example, a general practitioner who you see once in a while."). Participants additionally mentioned the importance of a multidisciplinary collaboration between different specialties and paramedics, including a gynaecologist, sports physician, sports dietician, and psychologist (F1, P4: "That a gynaecologist and sports physician communicate about this together about the effects of sports on hormones." F3, P1: "And then there is a small group that might want to do things differently, but it does not work out, I would perhaps rather refer them to a psychologist than to a gynaecologist. Because I think that if it is really about being well-trained, being light, being good, yes, in my opinion there is much more of a psychological aspect to it than a gynaecological one.").