Introduction
Period pain is one of the most commonly experienced gynaecological issues [
1,
2]. Clinically, period pain is referred to as dysmenorrhea, and can be categorised into two groups: primary dysmenorrhea and secondary dysmenorrhea. Primary dysmenorrhea is the experience of pain without an identifiable pathological cause [
1], while secondary dysmenorrhea is menstrual pain accompanying a gynaecological condition such as endometriosis [
3]. Period pain is characterised as cramping that originates from the uterus, or pain within the lower abdomen, back, or legs, beginning prior to, or at the onset of menstruation and lasting up to several days [
4,
5]. Period pain can be detrimental to functionality and is one of the leading causes of school and work absences globally [
6,
7]. Moreover, many menstruators report that period pain impacts their ability to engage in social activities and sport [
8,
9]. Overall, research has found that those who experience period pain have reduced quality of life [
10‐
13]. Despite the prevalence of period pain and its detrimental nature, it is often underdiagnosed, undertreated, and normalised as an inevitable part of menstruation [
11,
14,
15].
Research literature exploring experiences of menstruation has grown considerably in recent years. However, there remains a dearth of research exploring menstrual health among individuals with disabilities. Despite being relatively understudied, there is evidence indicating the commonness of period pain in autistic populations [
16,
17]. Autism is a neurodevelopmental condition, with differences in communication, interactions, and sensory experiences [
18]. Literature is beginning to show higher rates of menstrual problems such as heavy periods (clinically described as menorrhagia), irregular cycles, and period pain in autistic menstruators than allistic (i.e., non-autistic) menstruators [
16,
19]. However, due to insufficient research examining the relationship between autism and menstruation, it is difficult to determine why a higher prevalence of period pain may exist.
Empirical literature demonstrates several potential determinants of period pain. From a pathophysiological perspective, gynaecological disorders such as endometriosis and polycystic ovary syndrome (PCOS) may be a cause of pain for menstruators, particularly for those in later reproductive years [
20]. Interestingly, there is evidence to suggest PCOS and endometriosis are common comorbidities in autistic menstruators [
21,
22]. This could indicate, and explain, a greater prevalence of period pain in autistic menstruators. In the absence of clinically identifiable gynaecological disorders causing secondary pain, prostaglandins have been found to link directly to the occurrence of period pain by inducing contractions within the uterus, ultimately leading to pain hypersensitivity [
14,
20,
23]. Moreover, irregular periods and a heavy flow are risk factors for painful periods, particularly in younger menstruators [
4,
24]. These risk factors are often more frequently reported in disabled populations than non-disabled; however, due to limited research, it is unclear if this is the case specifically for autistic menstruators [
25]. Other risk factors for period pain include lifestyle, such as exercise and diet which has been found to impact menstrual pain occurrence and severity [
26‐
29].
Despite limited research into autistic people’s experiences of menstrual pain specifically, evidence from the broader autism and pain literature suggests differential pain tolerance may play a role. It is well established that differences in pain experience exist for autistic people compared to allistic people, with increased hypo- and hypersensitivity to pain, differences in pain expression, and heightened interoception (i.e., the perception of sensations from inside the body) reported [
30‐
32]. Although there are no studies examining the link between autism and period pain to date, a recent study into autistic experiences of menstruation by Steward and colleagues [
25] reported that menstruation can exacerbate heightened sensitivities. This suggests that differences in pain sensitivities may contribute to the increased prevalence and severity of period pain in autistic menstruators. However, further research is required to establish a clear understanding of autistic experiences of menstruation and period pain.
Various treatments exist for period pain such as medical intervention, nutritional intervention, exercise, and holistic approaches. Pharmacological therapies are among the most common treatments for period pain and include hormonal contraception and over-the-counter or prescribed non-steroidal anti-inflammatory drugs (NSAIDs), which aim to reduce prostaglandins and subsequent uterine contractions [
33,
34]. The effectiveness of pharmacological therapies is debatable, with some research indicating side-effects reduce quality of life further, while the original symptoms remain unchanged or only minimally changed [
35,
36]. This may be partly attributable to inappropriate choice of treatment due to lack of education on period pain and/or limited engagement with healthcare professionals about menstrual pain [
33,
37]. Menstruators do not always choose the most effective pain treatments, despite similar availability and cost; a common example of this is the use of paracetamol over NSAIDs like ibuprofen [
38,
39]. Nutrition and exercise interventions are less frequently used than pharmacological approaches; however, various studies have shown the effectiveness of these in reducing the intensity of pain and its interference on everyday functioning [
27,
40]. Holistic and complementary treatments such as acupuncture, massage, and reiki can also be used to manage period pain [
41‐
43]. These treatment options appear to be effective in reducing symptomology [
42,
44,
45]; however, menstruators are often unaware of their suitability to treat period pain [
46].
There is no literature on treatment uptake for period pain in autistic menstruators, and minimal research for allistic menstruators; therefore, there are many unknowns about menstruators’ experiences of seeking and receiving treatment. A systematic review and meta-analysis by Armour and colleagues [
39] found that only 11% of adolescents with period pain sought medical treatment, which reflects an earlier study by Proctor and Farquhar [
47] that found menstruators more likely to self-manage their own pain than seek treatment. Another early study by Spears and colleagues [
48] found interaction with healthcare services a barrier to receiving treatment for period pain, and therefore poor treatment uptake. As evidenced, there is a lack of research investigating treatment-seeking behaviours associated with period pain in both allistic and autistic menstruators.
Aim of study
This study aimed to explore the experiences of period pain and treatment uptake within allistic and autistic menstruators. The intention of this study was to improve understanding of experiences of menstruation and treatment-seeking behaviour, contributing to the growing literature on understanding, knowledge, and experiences of menstruation. Moreover, the study aimed to establish an understanding of experiences of menstruation and treatment uptake specifically within the autistic population specifically, where empirical literature is sparse.
Results
A total of six themes were identified relating to the experience of menstruation and treatment uptake. Initially, analysis of all data determined three themes (1–3). A further three themes (4–6) were identified while analysing data from autistic menstruators separately, in relation to their experiences of period pain and uptake of treatment. Table
3 illustrates the themes and subthemes derived from the data. Each theme is also described below. To ensure anonymity, quotes labelled with “AP” and a numeral identify quotes from autistic menstruators, while quotes labelled with “NAP” and a numeral identify quotes from allistic menstruators.
Table 3
Themes and subthemes
1.Social Perception of Menstruation | 1.1Normalised Pain 1.2Experience of being female 1.3Menstruation is Taboo |
2.Menstrual Healthcare and Education | 2.1Ineffective Treatment 2.2Dismissive Interactions 2.3Menstrual Education |
3.Impaired Functionality | |
4.Sensory Impact of Menstruation | |
5.Social Aspect of Menstruation | |
6.Pain Communication | |
Theme 1: Social perception of menstruation
Menstruators highlighted that the societal perception of menstruation impacted their experience of period pain and treatment uptake.
Subtheme 1.1: Normalised pain
Menstruators discussed the normalisation of period pain in relation to their experiences. Some menstruators highlighted the normalisation of pain within medicine, while others mentioned the social expectation to cope with period pain. All participants discussions reflected a shared experience of normalisation of period pain within society and healthcare.
“It’s just normalised in medicine, like, ‘well yeah, you’re a woman, what do you expect?’” (NAP1).
“I think my experience, as I said, it was just something that’s there and you have as a person who menstruates, and you just need to live with it.” (AP9).
“I guess when I was younger there was a lot of shame attached to the pain because I felt like I should just be able to get on with it even though it was really sore.” (AP11).
Subtheme 1.2: Experience of being female
A glimpse of the experience of being female, suffering with period pain, and seeking treatment was given by participants. Many participants identified an expectation to display socially acceptable behaviour around their pain experience because of their biological sex. This links closely to the normalisation of period pain and indicates a wide societal issue that is contributing to the suffering of menstruators.
“I think speaking really broadly, in society it’s seen as something that just occurs for women, and they need to deal with it… and of course, we know that women’s pain is dismissed regularly in healthcare settings and society generally.” (NAP9).
“I think culturally, I think especially people without uteruses who haven’t experienced it, they tend to not really believe that pain. Especially, if that person looks like a woman. Women are often disbelieved by people or seen as over-exaggerating, so I think it’s probably not taken as seriously.” (AP17).
Subtheme 1.3: Menstruation is taboo
Both allistic and autistic menstruators discussed the taboo nature of menstruation and period pain. As in previous sub-themes, participants reiterated the engrained societal beliefs around menstruation, highlighting not only that menstrual pain has been normalised and is an innate female experience, but also that is an experience that should not, and has not been talked about for generations.
“Periods and menopause are such taboo subjects…” (AP8).
“I think culturally, it’s not talked about I don’t think, it’s very much a taboo topic, do you know what I mean? […] Nobody talks about it, it’s very hush hush.” (NAP7).
Theme 2: Menstrual healthcare and education
Menstruators who had sought medical support for their period pain described unsatisfactory healthcare experiences.
Subtheme 2.1: Ineffective treatment
Many allistic and autistic menstruators expressed that they felt their period pain was not treated appropriately when seeking medical treatment. Many participants reported the treatment of period pain during teenage years to be unsuitable, in addition to reports of unsatisfactory experiences of treatment-seeking. Participants also stated that they felt medical treatment overlooked the cause of the period pain.
“It wasn’t appropriately treated by the pill. It wasn’t a very good assessment at the time. Perhaps advice and being told what to expect would have been more beneficial.” (NAP3).
“At first, other pain management avenues weren’t explored… the doctor saw me for about ten minutes, and he was like, ‘contraception is going to solve all your problems, here you go,’ and I just took his word for it.” (NAP8).
“I have tried lots of different things, but they have never cared to try and look into the cause of it.” (AP12).
“My approach was to seek an exploration for my period pain because I felt that having had the contraceptive pill, it was a bit of an aimless medication since it was to alleviate the pain, but it didn't make the cause go away or make the problem, the root problem go away.” (AP7).
Subtheme 2.2: Dismissive interactions
Almost all participants referred to their experiences of seeking medical treatment for period pain as dismissive. Many also explained that their attempts at seeking treatment for period pain had been impacted by previous dismissive interactions. The final excerpt presented in this subtheme poignantly highlights the negative experience of one menstruator, which reflects the experience of many participants.
“You are dismissed all the time and not taken seriously and made to feel like a silly little girl who doesn’t know exactly what their body is going through.” (AP11).
“They just have basically never taken me seriously and I’ve been trying to get this sorted for seven years.” (AP12).
“I don’t really bother going to the doctors about it anymore because they kind of brush off women’s health quite a lot.” (NAP18).
“From that first consultation with the GP [general practitioner] to actually where I am now, I just feel as though the whole time I’ve never been taken seriously at all, and I feel as though there’s been a total lack of understanding and empathy from the doctors because they just… it’s all just about trying treatments; this is the guidelines… we’ll do that… but they don’t actually think of the person, they don’t actually think of the patient.” (NAP7).
Subtheme 2.3: Menstrual education
As well as the taboo, participants discussed their lack of knowledge surrounding menstruation, acknowledging the need for improved education. Education on menstruation was raised by both allistic and autistic menstruators. Many participants drew a link between the taboo nature and lack of education surrounding menstrual health.
“I think a lot of issues could be addressed through education too, for example I hardly know the basics of my own cycle and what I know is from basic biology at school… Especially in school, there was nothing and I needed that. It was taboo at school, and it was too awkward to talk about it so I learned nothing, and I could have benefited from learning.” (NAP1).
“I would say I still need to learn a lot but at the same time, I don't feel like there is enough [information].” (AP7).
Theme 3: Impaired functionality
Both allistic and autistic menstruators explained their functionality was impaired by period pain. Participants overwhelmingly described their experience of period pain as “debilitating.”
“Every month I get debilitating pain and I have done since the age of 11.” (AP4).
“I have a lot of period pain starting really quite young, debilitating pain at times.” (AP8).
“Just debilitating pain every month, really bad pain, really heavy… it went downhill in my teens to be honest.” (NAP7).
It was commonly reported by menstruators that their pain prevented them from functioning as they would at other times in their menstrual cycle, highlighting the severity and impact of their pain.
“I can’t do any of my activities at all on my period… I just stay in my bed.” (AP14).
“The first couple of days I can’t really do anything, so it does impact greatly.” (NAP17).
“On days when I am in pain, I might need to spend the afternoon in bed. So, it definitely does restrict my activities, absolutely.” (AP16).
Theme 4: Sensory impacts of menstruation
Autistic menstruators highlighted the sensory impacts when menstruating and experiencing menstrual pain. Some autistic menstruators discussed the impact of heightened interoception on their period pain experiences. Sensory overload was also described by numerous autistic participants in relation to their experience of menstruation and period pain.
“I feel like when I experience things in my body, I experience it quite intensely… things like period pain and all of that, I think can have quite an impact on my mood and my anxiety because something is happening within my body and its sort of out of sorts, I struggle to remove my focus from it… it becomes a focus for me until it is done.” (AP16).
“I feel like I feel everything that is happening, and I feel like it’s just a lot of overwhelm. It might not be the worst pain ever, but I can’t get my mind off of it. Just feeling every bit of bloating, feeling everything, my clothes don’t fit right, and, you know, the skin changes, everything…” (AP15).
“I think having periods as an autistic person is really overstimulating… it takes so much energy… period pain, and the bloating, and the back pain, and the breast pain, and the joint aches, it’s just super overstimulating.” (AP5).
“Any big change in my body does overwhelm me, I think it’s something that not everyone gets and like the sensory aspect of it [period pain] is obviously a lot worse… than it is for other people.” (AP6).
Theme 5: Social aspect of menstruation
Autistic menstruators discussed the social factors which affected their experience of period pain and treatment uptake. Some menstruators highlighted the role of social exclusion in their understanding and experience of period pain. The cruciality of social inclusion for generating comparisons and developing an understanding of typical menstruation experiences was highlighted, with autistic menstruators describing challenges in creating a frame of reference. The distress caused by a lack of context to menstruation was also discussed, relating to the taboo nature of menstruation previously identified.
“The social isolation that comes with not fitting in with anyone means that you have no frame of reference for whether your experiences are normal.” (AP1).
“I just remember desperately trying to find someone else, asking, ‘how painful would you say this is out of 10?’” (AP4).
“I feel like there is a link between the autism and the way that I experience my period, because it was really distressing for me when I started developing… it was so distressing for me that change. I had no context to it.” (AP11).
Theme 6: Pain communication
Autistic menstruators highlighted that pain communication played a role in their experience of seeking treatment for period pain. The challenges of communicating pain were discussed, with many describing pain communication as a barrier while seeking medical treatment for period pain, particularly due to differences in expression of pain and perceived pain tolerance.
“Describing your pain, how do you know how bad your pain is, how do you know how it compares to other people’s? So that’s very difficult…” (AP1).
“I’m not very good at describing how pain is or how any experience is when I am not right in the middle of it. Like they’ll say to rate it, but I’ll say I don’t know because I am not in the middle of it or in that level of pain right now. I find it hard. Also, if I do go and I am in pain, I don’t display pain like how they think I should display pain. I deal with it very internally, so they’ll say I don’t seem like I am in pain, ‘you seem fine,’ but I am not fine.” (AP6).
“I also don’t know that I communicate effectively to medical providers… I get really nervous before I go into any of those types of appointments and although I am educated and well-spoken, I usually end up stuttering and I am not as well-spoken as I know I can be. I think sometimes by the time I get there, trying to talk to them about something, something that has probably been stewing for quite a bit, I think I can sound a little bit hysterical by the time I get to them, which unfortunately just doesn’t make a good case.” (AP8).
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