Thirteen participants completed an interview. Twelve (92.3%) identified as female, and one as nonbinary (7.7%). The interview duration ranged from 30–90 minutes, with an average of 52 minutes. Eleven (84.6%) participants identified as Caucasian British, one (7.7%) as Black British and one (7.7%) as German-British. Their ages ranged from 26–43 years, with a mean of 34.31 years (SD = ± 4.83 years). Four (30.8%) participants had a master’s degree, seven (53.8%) had a bachelor’s degree, and two (15.4%) had up to secondary school education.
Participants had lived with PMDD symptoms for 5–26 years, averaging 15.95 years (SD = ± 2.41 years). The time since receiving a doctor’s diagnosis ranged from 0.25–14 years, with an average of 2.62 years (SD = ± 1.56 years). The period between the onset of symptoms and diagnosis ranged from 4–21.5 years, with an average of 13.22 years (SD = ± 3.29 years). Seven (53.8%) participants were in full- or part-time employment, four (30.8%) had left their jobs due to PMDD, and two (15.4%) were students. Twelve participants provided information on their weight and height, and their BMIs were calculated, ranging from 20.94 kg/m2 to 47.27 kg/m2, with a mean of 29.33 kg/m2 (SD = ± 6.29 kg/m2). According to the WHO BMI classification28, 5 (41.7%) were categorised as obese (BMI ≥ 30 kg/m2), 1 (8.3%) was overweight (BMI ≥ 25 kg/m2 and ≤ 30 kg/m2), and 6 (50%) were normal weight (BMI = 18.5-<25 kg/m2).
Thematic analysis produced 97 initial codes, which, upon further analysis, were grouped into six main themes and associated subthemes (see Fig. 1). Themes are presented in the text alongside direct quotations identified by the participant's (P) study number.
Theme 1. ‘Dual Personality’: Life with PMDD
Life during a PMDD episode (luteal phase)
Participants described their lives with PMDD as “horrendous”, considering it an “imposter”. They felt split between two identities and endured extreme physical and psychological symptoms for years. These included depression, irritability, anxiety, and suicidality. Resisting suicidal thoughts was described as an “inner battle”. Physical symptoms included severe fatigue, joint pains, and binge-eating. They felt powerless to prevent these events and spent years coping with what they described as incomprehensible emotions. Mood swings were abrupt, leaving them feeling “out of control” and engaging in behaviours such as going to unfamiliar places and continuous crying.
“And usually, it would be that at 11 o'clock in the morning, everything's fine and at 11:05 it's like somebody has turned the lights off, like somebody, uh, flick the switch {…} and all of my sense of ever being able to be happy again, is drained.” (P10)
Most participants found their psychological symptoms excruciatingly painful. At their worst, they felt “disconnected”, suicidal, and like “a bomb exploding inside their heads”. Some resorted to self-deprecating eating habits as a coping mechanism (reported further under Theme 5.4).
“Um, I've also considered so many types of suicide every month. I've written notes to truck drivers, the train drivers to apologise for what I'm about to do when I just don't want to be here. And the only thing that is a kind of comfort is food, but then it's because you use it for self-deprecating purposes.” (P9)
Some participants living with other challenges deemed PMDD to be the most debilitating, fearing that living with PMDD would shorten their lifespans:
“There's nothing else in my life um, that is as disruptive {…} I’m Trans[gender], I'm polyamorous, I'm disabled, I'm neurodiverse, I’ve got hearing issues {…} I've lived off benefits, um, and have experienced poverty {…} and the one thing that is the most disruptive in my life and compromises my quality of life and makes me worry that I'm not going to live to the age of 35 is PMDD.” (P10)
Life outside of PMDD Episode (non-luteal phases)
Outside of the luteal phase, most participants described feeling “normal”, “controlled”, stable or optimistic. They regained sociability, healthy eating habits, and a sense of happiness and excitement. Although they experienced regret over PMDD-related behaviour, the cessation of suicidal thoughts brought relief:
“I'm just happy, {…} I'm better at work, um, I'm getting tasks completed, I'm more confident, I'm more sociable. I've got my resilience back. Um, I feel like I can take and deal with stuff and be more pragmatic.”(P8)
However, some lived in fear, anticipating the recurrence of symptoms with the next menstrual period:
“I used to be okay, like I would be so happy and productive and hyper and living life in the good part in the good two weeks, but because I'd lived with it for so long, {…} I'd be like, well, I know I'm going to ovulate in five days and then {…} Almost like what's the point in getting stuck into something or trying, because it's all going to be just knocked down in five days’ time.”(P13)
Theme 2. The struggle for appropriate PMDD management
The challenge of gaining a diagnosis for PMDD
All participants had negative experiences obtaining a diagnosis. Those who sought help for PMDD were initially misdiagnosed with other mental disorders such as generalised anxiety or depression, while others with physical symptoms were misdiagnosed with rheumatological or immune disorders. Many were sceptical of their diagnoses, as they were aware of a pattern of symptoms with their menstrual cycle. They spoke about how they tracked their symptoms and undertook their own research, initially receiving their diagnoses either online or through family or friends:
“And I knew it wasn't depression because I was fine for two weeks. Um, and it was always coming up to my period {…} and then I started making notes of everything because she [GP] had just told me, um, to take antidepressants {…} I started writing notes and I realised it was in the 10 to 16 days leading up to my period. So, I started Googling about, um, PMS and, and extreme forms of that and that's when I found PMDD.”(P2)
Participants stated how, even when they were certain about the possibility of a PMDD diagnosis, their requests for help went unheard. They described this experience as being “constantly dismissed" by general practitioners (GPs) or being assured that their mood fluctuations were merely part of a “normal" female experience. In some cases, participants were told that “people reacted differently to situations and some humans are just unable to cope with life”, which left them feeling upset, helpless and suicidal.
“There have been many, many times over the years um, I'm really being told that everyone has stress in their lives and at one time I got told, you know, um, some people can cope with life and some people can't. Uh, and, and, and that was it and I felt suicidal at that point. Um, and that was very upsetting.”(P5)
Faced with misdiagnoses and dismissive reactions, some participants turned to private healthcare. They documented in detail their frustrations and mistreatment from health professionals:
“I was diagnosed privately, um, because I got so desperate. Um, I, I went and asked so many times at my GP. Please, can you help me please? {..} And they just said, no, it's just PMS or no, you're too young. And then eventually it got to the point where I was so desperate that I wrote down a letter of everything that they said to me, {…} how it affects my life, how I've lost every single job {…} Um, I asked to speak to Nick Panay’s [a consultant gynaecologist known for specialising in PMDD] team, um, because I wasn't messing around anymore.” (P13)
Lack of adequate treatment for PMDD
After the struggle to obtain an accurate diagnosis, participants then faced inadequate treatment and support. Despite trying various options, none of the treatments offered effectively managed their PMDD. GPs dismissed requests for specific therapies, leading some to reluctantly try psychiatric or hormonal prescriptions they knew would not work for them. Those who did try pharmacological suggestions found the medications unhelpful, often causing debilitating side effects:
“They [GPs] throw things at you like contraceptives when they don't even know what they're going to do to you and they convince you, and I've been, um, on contraceptives probably about four times in my life to try and help with PMDD and all of them have made me worse because I'm intolerant to progesterone. So it's just like they've handed me a bomb and just made me worse.” (P9)
Participants indicated their dissatisfaction with the medical community, citing a lack of understanding and research on PMDD as important contributors to their poor management. Dissatisfaction drove many of them to try many alternative therapies. Some even argued that PMDD management was not considered important, as it did not directly affect men:
“Um, you're left trying to find some snake merchant type remedies that people recommend on the internet. And, um, it makes you feel like there's nothing that's ever going to help and that makes it harder {…} There's a real let down from the medical community, um, in terms of {…} taking people seriously that this is their experience and then offering some kind of help. Um, and there isn't enough research out there and I'd guarantee it’d be different if men were struggling with it.” (P10)
Theme 3. The destructive impact of life with PMDD
Living in fear (of the next cycle) and guilt
Participants expressed living in constant fear and guilt, dreading the monthly recurrence of their experiences and regretting the pain they caused loved ones. This fear and guilt of "failing" consumed them, feeling like a burden to their families and constantly seeking to make amends.
“I've been so disgusting, really, really so disgusting to my husband. Absolutely verbal disgusting, and that's not me, you know, I wouldn't ever want to be spoken that way, but I've spoken to him dreadfully. I always feel very guilty as well because I've got two really beautiful children and I love them very much, and I can see what I have in my life and yet I still want to kill myself.” (P7)
Damage to relationships and social life
Participants reported that the hardest part of them living with PMDD was how their symptoms disrupted their personal relationships and social life. They recalled feeling constantly judged and rejected by those around them. They isolated themselves from their loved ones as a means of protecting others and themselves from harm, often leading to the dissolution of their intimate relationships and established friendships:
“It’s the effect that it has on my mum, my partner, and my relationships with my friends and my family {…} I've lost a lot of friends and past romantic relationships because they don't understand. Sometimes I want to stay away not to feel hurt or hurt my partner cause the worst pain is mainly watching him when he can't cope,{…} when I'm in a heap on the floor saying that I don't want to be here anymore and it's horrible.” (P13)
Participants described the debilitating impact of PMDD on their education and careers. They struggled to complete their education, faced recurrent absenteeism and were unable to meet workplace obligations. They frequently terminated employment, with some abandoning their careers because they were unable to cope:
“I’m not working anymore. I’ve just had to quit working and left my career. I always felt like a lunatic and just couldn’t cope. Um, it's uh, yeah, I've kind of had to give up my work throughout my life because of it.” (P6)
Theme 4. Eating behaviours during a PMDD episode
‘Out of Control’: Patterns of bingeing and starvation
All participants reported eating behaviours in line with disordered eating, eight of whom had a current or prior diagnosis of an eating disorder.
Many participants described their relationship with food as unhealthy, marked by intense cravings for various food types, especially sugary, starchy, fatty, salty, and sour foods, or combinations thereof. These cravings intensified near the onset of menstruation:
“In the next few days that I'll start to menstruate, it's like craving, so, and it can be really weird stuff. So I like last month, what was it? Uh, cheese, onion and gherkins {…} [It] tends to be salt, sugar, or vinegar.” (P6)
Most participants reported having a marked increase in appetite, especially during their worst PMDD episodes, which led to binge eating. They reported losing their sense of satiety and eating “rubbish” or “crappy” foods in an “out-of-control” manner until they felt uncomfortably full. Participants said that they lost their ability to make appropriate food choices despite knowing it would help manage their PMDD symptoms. They noted how their eating and PMDD interacted; when their PMDD felt “out of control”, their eating got “out of control” and vice versa:
“In PMDD mode, I don't even know what I'm doing. I just get out of control; I'll just pick up loads and loads of loads and loads of food. I don't think about it. It just happens {…} I just keep eating. And I noticed that not only my PMDD affects my eating, but my eating affects my PMDD massively. Um, like if my PMDD was slightly stable and I ate uncontrollably, my PMDD becomes out of control as well.” (P3)
Some participants binged for comfort due to extreme psychological symptoms, whereas others did so for self-punishment, feeling that they “deserved it” for having PMDD. They felt angry if unable to satisfy cravings, despite feeling horrible and frustrated shortly after eating, with that frustration fuelling them to consume more:
“I will go looking for cake. I crave sugar. Um, I will get angry if I can't get cake. You can't fight all the battles at once. So, I just think, give me all the Maltesers, get me through the next half an hour. It's like a, it's like a self-deprecating punishment that you do to yourself. And you think you feel rubbish anyway. So, you deserve to feel more rubbish {…} and you think I might as well eat more. And then you feel sad, feel sick, or just be disgusted with yourself.” (P9)
Although many participants reported binge eating, some experienced starvation due to impaired cognition on their worst PMDD days. When feeling overpowered by severe symptoms, they prioritised “surviving” rather than eating:
“Um, I don't tend to eat at all if I'm, if I'm really struggling, {…} sometimes I'll wake up at six and won't eat until like 5:00 PM because I just can't be bothered. I just concentrate on surviving.” (P4)
Participants reported that the hardest part of managing their eating was having to repeat the same cycle monthly, alongside managing the anger they felt if they could not satisfy their cravings or if anyone tried to prevent them from bingeing:
“Um, um, the anger and repeating the cycle every month is the hardest bit {…} I get quite angry and, you know, and scream and, um, I'm not allowed to drive so my husband will often get sent out to go and get cakes and crisps and everything that he can find or think of. And then of course, he'll, yell at me and say, you're really gonna do this again after you tell me every month, uh, you wish you didn't do that, and I get even more angry.” (P11)
Immediate Coping Strategies
Participants described using coping strategies that focused mainly on healthier eating or preventing weight gain. They also described how the strategies most often failed to help them regulate their eating. Both positive and negative strategies were reported.
♣ Positive strategies
Meal planning
Most participants reported trying to plan meals ahead of time. This included buying healthy foods or creating large nutritious meals and freezing them for later use. Some participants reported that meal planning was quite helpful
“I'll try and cook a lot of nutritious food in one go and put it in the freezer for later, but not often, but when I do it, it was quite helpful.”(P1)
Getting help
Most participants received help from family, friends, or housemates with meal preparations or prompts, alleviating the burden of deciding what to make and ensuring that they had a nutritious meal or felt cared for
“My partner or a friend who also has PMDD would frequently check to be sure I have eaten. Having somebody check in with me or say, how are you doing then you saying, oh, this is the worst PMDD episode in 10 months and oh, and they send you like dinner. So you don't have to worry about that. I think those are the most helpful things I've got.” (P10)
In contrast, other participants avoided asking for help. They feared they would be unable to control their desires to eat and would become defensive if stopped, causing a rift with their loved ones:
“My partner, um, he tries, but doesn't always say things in the right way. So, I try not to ask [for help], because I don't want to cause problems, um, between us. Um, and because of my relationship around food, if I ask somebody, please, can you not let me not eat that or anything, then I'd probably get nasty {...} if they said something in that moment like oh no, that's not good for your PMDD or you sure you should be eating that? I would just, I wouldn't be able to take it.” (P3)
Avoiding socialising or shopping
Participants avoided social events or eating out to prevent feelings of anxiety and shame about their inability to manage their eating. They also avoided food shopping to prevent them from being overwhelmed and unable to control their urge to buy junk food.
“Um, socially, it's bad, I avoid going out Um out for meals, just makes me feel anxious and like the amount of time I've gone, like, uh, like with my parents, it's hit and miss. We've had to abandon meals in restaurants. It's been really embarrassing.” (P8)
Distraction
Many participants used distraction techniques to prevent them from eating, typically with activities that involve using their hands.
“Um, I do try have a bath or read a book which occupies your hands, you know, something like that, instead, cos you can’t possibly eat while in the bath.” (P5)
Participants expressed that the above strategies were not always helpful. They were unable to adhere to them due to their irresistible food cravings. They referred to PMDD using words such as ‘the beast’ or ‘her’:
“It depends who's in charge and I have to see them as two separate entities um, and the very nature of the beast is that it’s very powerful. Um, if I can beat her, I’ll be successful, but it will be hard all day. Um, but if, if she wins, I just let it win because, I can't be bothered to fight her anymore. So, they [coping strategies] can be successful, and they can't be, I'd say, uh, probably 60/40 in her favour.” (P9)
♣ Negative strategies
Fad diets
Several participants had tried one or more fad diets, all of which had been futile
“Uh, the amount of fad diets I've done. I've done everything, you know, Slimming World, Weight Watchers, uh Five-Two diets, uh cabbage soup, uh, Slim Fast milkshakes, all these kinds of things. I'm like they don't work.” (P2)
Purging
Many participants expressed that they were either using laxatives or making themselves sick after food binges
“To be honest with you, after bingeing weirdly I still do make myself sick or take laxatives {…} This is really awful, and I would feel really ashamed and disgusted with myself, just really guilty.” (P11)
Some mentioned a history of eating disorders, which they linked to the onset of PMDD:
“A few years ago, after like bingeing, and then I would be really unhappy with my body, and I started to use laxatives {…} I think this was around the time of my PMDD onset.” (P6)
No strategy
Some participants reported having no strategies to manage their eating during their PMDD episode. They described how they felt “paralysed” by their mental health at the time
“I just cannot think, my mental health gets so bad that I just focus on surviving, and I do not try any strategy and food is not even a consideration at such point.” (P7)
Theme 5. ‘Aftermath’: The impact of disordered eating
Strategies for recovery and repair
As described above, the majority of participants had engaged in strategies – albeit typically unsuccessful - to manage their eating during a PMDD episode. They also employed different strategies for recovery and repair following a PMDD episode.
Food tracking
Food tracking was among the most used strategies. Some participants reported using phone tracking apps or mentally tracking food before consumption. However, most of them found tracking stressful and obsessive, prompting them to discontinue.
“Like I will weigh everything, make sure everything's tracked in my tracker and it got to a point where it was too much {…} because it did become a bit obsessive.” (P4)
Food restriction
The majority of participants reported using food restriction for several years or having used it in the past as a perceived means to counteract their bingeing and manage their weight
“I would be very restrictive with food and, um, weigh myself every day. Um, yeah, there was a time it was really unhealthy.” (P12)
‘Overly Healthy’ Meals
Some participants responded by eating what they considered ‘extremely healthy meals’ made of fruits and vegetables only
“When I'm feeling strong and eating healthy, I eat extreme healthy. I would eat solely fruits and vegetables. {…} I kind of try to do some pre-damage control and then PMDD hits and its all the damage and then I do post-damage control again.”(P5)
Over exercise
Over exercising was another strategy that several participants had used. They described their realisation that this approach was unhealthy and exhausting, leading them to cease
“I’ve done all kinds of intensive weight reduction exercises, um practically everything you could think of, and it ended up just too uncomfortable, very unhealthy and tiring.” (P2)
Re-strategising
Participants spoke about how their strategies both during and after their PMDD episodes were typically unsuccessful.
“I have done over the last, how many years? Um, pretty much all of that. I’ve over exercised, uh, at home gym. Uh, I was counting calories. Um, I I've had, uh bulimia and stuff like restriction restricting as well. Uh, I had taken, um, laxative, like tablets and things like that, but like fat burning things and have discovered that none worked.” (P3)
After failed coping strategies, some participants reverted to either a vegan diet, a "typical" healthy lifestyle, or intuitive eating where they accepted that ‘poor’ eating was a part of their PMDD and did not identify any food as good or bad. They found these strategies beneficial:
“I have accepted that I cannot always eat right, and I do not beat myself up for whatever reason. Uh, I had experienced an ED before, and I know how frustrating it could be. So, I have now resulted to intuitive eating, and I do not recognise any food as good or bad and I eat anything.” (P10)
Reflecting on the Impact of Disordered Eating
Participants reported several physical and psychological health impacts, alongside other social-related impacts. Physically, participants reported weight gain, being overweight, or unhealthy weight loss.
“I definitely have weight gain because my weight fluctuates so severely when my PMDD is like under control and when it's not under control.” (P2)
They also reported frequent migraines, stomach irritation, the fear of developing new health conditions and the exacerbation of underlying conditions:
“I believe due to my restrictive or starving habits, I do get like frequent stomach irritations and migraines, and it also like really aggravates my IBS [Irritable Bowel Syndrome]. I also have gall bladder problems which definitely feels worse after um, when I eat poorly.” (P8)
Psychologically, most participants expressed feelings of guilt, humiliation, or embarrassment toward themselves as a result of either failing to maintain ideal eating habits or retaliating against loved ones, who advised them:
“It’s kind of like the shame. {… } Um, because you know that you failed with your eating and you know you're just going to do it again even though you say that you won’t {…} You also feel so much guilt from how you had shut up your husband who tried to advise you to eat healthy {…}” (P9)
They also reported feelings of being judged and shamed by others:
“My husband would say if you eat that you’ll feel rubbish um, and people will come and like family members especially will say like, oh, you eat a lot. Don't you? And that gets me really angry, defensive and feeling very low of myself especially as I am a big girl, like I’m clinically overweight.” (P2)
They also described how PMDD impacts their self-esteem and body image:
“PMDD makes you have a really, really low opinion of yourself {…} I'm not happy with my body image. I'm convinced I've put on 10 stone. I'm you know, it, it kind of plays havoc with the way that you feel about yourself and your confidence.” (P13)
Theme 6. Accessing support for PMDD-related eating behaviours
Support sought
Although participants who identified as having eating problems wished for external support, most of them had not yet sought any support. Of those who had, they had sought help for eating disorders or being overweight after suffering for extensive time periods. Participants typically attributed their ED to the onset of their PMDD. They reported having sought either professional support or support from online groups. Regarding professional support, most had undergone general therapy sessions for eating disorders or body coaching programmes for weight loss. Those who sought help for eating disorders reported mixed results, while those who underwent body coaching programs for weight loss reported some successes, which were, however, not sustainable due to the inconsistency of living with PMDD:
“When I was in Uni years ago, um, I think years into my PMDD, my eating disorder was really bad, and I went to my, uh, senior support officer and they, uh, got me psychotherapist, uh, and that definitely did help.” (P3)
Participants also reported having sought help from online support groups. Although they found this beneficial when it was a PMDD-specific group, they described general ED support groups as overwhelming:
“I find that there's people on Instagram who talk about PMDD, um, lots of stuff around sugar-free and hormone balancing with food. I find that really helpful.” (P5)
“I was part of the eating disorder one, but that was too much. It made me worse because I {…} got overwhelmed with so much information.” (P3)
Barriers to seeking support
Participants identified four key reasons for the delay in seeking help for their eating behaviours. First and most importantly was the perceived dismissive attitudes of health professionals and their lack of knowledge on PMDD.
“I don't want to be let down as I was before having my diagnosis. I don't want to put myself through all of that and then still be in the exact same position or worse because you feel slapped, or you feel neglected.” (P12)
Secondly, participants reported fear of the cost of therapy:
“I don't know how much it costs to see someone, but {…} you got to pay for it and I might not afford for it.” (P1)
Thirdly, they feared feeling embarrassed and judged:
“Embarrassment, mainly, um, just, the fear of being judged {…} or like, oh, you're just making excuses because you're fat.” (P9)
Lastly, some participants felt that they were burden enough to their families and could not ask for more support from them:
“The thought that my partner already does enough to help me {…}, so if he had to also help with my eating habits, it can just be too much for him.” (P12)
What support is needed?
Participants identified the following sources of support as important for managing PMDD-related eating behaviours.
Information
All participants identified the need for PMDD and eating awareness to be disseminated via various sources, including research, the government, workplaces, and school curricula. Emphasising the need for information, participants lamented how they wished they had the knowledge that their eating was related to their menstrual cycle and how this may have saved them years of frustration and suffering
“Just knowing that cravings were a sign of PMDD would break that cycle of eating habits altogether {…} and then bingeing, and that must have been luteal, and the restricting was follicular. So, I was restricting, bingeing, restricting, and then each time it, both sides were just getting stronger and stronger {…} I had no idea that there was even a cycle to my ED.” (P3)
Training health professionals and providing specialised eating disorder services
Participants emphasised the need for specialised PMDD health professionals and digital services such as online support groups, apps and websites that address PMDD and eating problems
“We need specialist dieticians or Um, like PMDD specialist nurses with like nutritional training {…} that is geared towards people with a menstrual cycle {…}” (P5)
Better and flexible management options
Participants cited the importance of further research for effective treatment and desired more autonomy in their treatment decisions
“Um, what I would need is for someone to fund actual, like medical research into why people have PMDD and what helps it? And, um, then for whatever treatment has been found to be successful {…}, have options that one can autonomously choose and not following this routine that does not work.” (P10)
Eating-friendly workplaces
Participants noted the need for comfortable working places with nutritious meals for staff and facilities such as microwaves to promote healthy eating
“So, I work in a massive hospital, but we lack menstrual-friendly and nutritious desserts for staff and oh, {…} I don’t always have a microwave, so I can't always heat up food. So, then my options are really limited as what I can eat at work.” (P2)
Expectations and Goals for Future Self
When thinking of the future, participants wished for better and more consistent eating habits. Most wished for better methods to manage their eating, for weight loss, and for living without guilt:
“That {…} I don't make myself feel as guilty as I do for days and um, that I try not to make myself sick, {…} and I lose some weight and be able to move about more.” (P2)