Sample
Twenty-two women requested information about the study; twenty returned consent forms and met the inclusion criteria. Three women who returned consent forms did not participate in the study, due to limited time and availability (n = 1) or no response to follow up contact from the first author (n = 2). The final sample comprised of 17 women. Interviews were conducted face to face (n = 15) and by telephone (n = 2).
Sample characteristics
Participants were aged between 20 and 56 years, with a mean average age of 37 years. The median average age at the onset of women’s symptoms was 15 years, ranging from 11 to 38 years and the median average age when women received a diagnosis of PMDD was 35 years, ranging from 20 to 45 years. Women were predominantly white British (n = 14; 83%) and had obtained an undergraduate level of education or higher (n = 9; 53%). Eight women were married (47%), with the remainder being single (n = 8; 47%) and divorced (n = 1; 6%) and ten women (59%) reported that they were mothers.
Findings of the thematic analysis
The analysis produced 95 initial codes which were grouped into four main themes. Each main theme conceptualises a different aspect of these women’s experiences and contains a number of subthemes. Figure 1 shows a diagrammatical depiction of all main themes and subthemes, illustrating the trajectory and temporal relationship of experiences described by these women who had received a diagnosis of PMDD.
Theme 1: A broken woman
The first theme, comprising of three subthemes, outlines the emotional impact of living with PMDD, including the symptoms that the women experienced and their methods of coping.
An inner war
Women described how for a significant proportion of their lives they had suffered a range of extreme physical and psychological symptoms that they experienced as an inner “battle” against their own body and mind. With symptoms including severe and unexplained period pains and excessive bleeding during menstruation, alongside a variety of emotional changes which were experienced as deeply distressing; women shared how they had often spent many years trying to cope with experiences that they struggled to understand and felt powerless to prevent:
All of a sudden it went pitch black, my emotional mood changed drastically and I could never see any outside things, like things had happened that made me upset or made me dark, so as a very young woman I was wondering why I felt that darkness. I felt like there was no point in living. (Participant 1)
Identifying their psychological symptoms as the most debilitating, women talked about how they had experienced a “rollercoaster” of negative emotions, where their mood would fluctuate dramatically without warning or apparent context:
My mental health was just that bad at the time … it was calming down and then coming again and then calming down and then coming again. (Participant 7)
In particular, women talked about the episodes of deep sadness and despair that they had felt and how these emotions had frequently led to periods of both unexplained and uncontrollable crying:
When I say I feel down; it’s not just feeling down. It’s feeling like your whole body is numb, like I, I’ve had so many times where I’ve felt like if I put my hand on a wall, I’d go straight through it, like that’s the level of sadness. (Participant 3)
In addition to their sadness, women described how their mood would also rapidly swing between other strongly felt emotions, including anxiety and panic attacks which were described as all-consuming and feelings of uncontrollable frustration and anger that the women often recognised as grossly disproportionate to a situation:
It was really feeling just, very low, very hopeless, very tearful, but then, getting very angry as well, so it, it’d swing all over the place. (Participant 9)
Snapped in two
Using words such as “monster” and “alter ego”, women talked about how the psychological changes that they had experienced often left them feeling like they had transformed into a different person, someone that they did not recognise as themselves:
They [family] would always say to me ‘it’s like you are not yourself’. And I always say that I feel it’s like an alter ego … I am like a completely different person. (Participant 13)
Describing how this transformation would happen very suddenly and with no obvious trigger, women expressed how they were left feeling completely “out of control” and how they were unable to stop themselves from engaging in uncharacteristic and destructive acts:
I couldn’t control the way that I was feeling, I’d cry at the drop of a hat and I’m not particularly a cry, a crying kind of person. It takes quite a lot to get me upset, erm, I just literally could not function. I couldn’t, I didn’t want to get out of bed in the morning, couldn’t sleep at night, erm … just doing stupid things like ripping wallpaper off because I couldn’t cope with the anxiety, the feeling of the anxiety. (Participant 10).
Recalling feeling frightened and fearful about what was happening to them, women talked about how they had tried to hide these changes from those around them. However, by trying to contain and mask their emotions at work and in public, women described how their feelings were often expressed at home, upon loved ones:
No matter how rubbish I was feeling, I could walk into work, put my work face on, get through the shift … inside, all I could think about was wanting to be dead. But, you know, I am at work, I had a duty to other people … At home was different, because I think that when you are around people you love, you can be a bit more free. (Participant 12).
Searching for peace
Describing how they had felt trapped and alone in their experiences, women talked about the desperation that they had felt to “escape” from their psychological distress; however, each time, they found that there was “nowhere to go”:
It’s like you’re running, you’re trying to run away from yourself, and, but running into a brick wall all the time. (Participant 4)
In response to these feelings, some women talked about relying on the use of drugs and alcohol as a means of escaping from their reality, whilst others described how they had resorted to self-harming behaviours, as a way of trying to manage their emotions. As a result of using these methods, a number of women reported how they developed substantial secondary mental health difficulties, including eating disorders and substance misuse problems:
I drank copious amounts of alcohol, like to the point where I had a problem. That was my coping mechanism, was to just escape. (Participant 3)
Ultimately, women expressed how any relief from their attempts to cope was either temporary or could not be reached, leaving them feeling hopeless and exhausted. From constant thoughts of suicide, through to preparations and in some cases many serious attempts, women talked about the desperation that they had felt to find “a way out” and how taking their own life had often seemed their only option:
I just got to a point where I couldn’t–I didn’t want to live. I just wanted to be dead. (Participant 12)
Theme 2: Misdiagnosis and the lost decades
The second theme, comprising of three subthemes, pertains to women’s experiences of seeking help, including the responses that women received from healthcare professionals and the impact of these on their subsequent lives. In particular, this theme captures the many years and life experiences that women lost to their symptoms and highlights the prolonged and enduring nature of their difficulties.
Diagnostic misjudgements
Over the years of their symptoms, women described how they had been given a variety of diagnoses by healthcare professionals, ranging from anxiety and depression, through to more complex mental health conditions such as bipolar disorder and personality disorders. As a consequence of these diagnoses, women talked about how they had been prescribed a variety of psychiatric medications, often for periods spanning many years:
I had been diagnosed with bipolar disorder, ME, chronic fatigue, depression, and, erm, and given medication for all of those different things (Participant 6)
With no obvious factors to account for the sudden negative shifts in their emotions, women described how they had personally held great doubts about their mental health diagnosis, believing that it did not accurately match their psychological experiences:
I knew it wasn’t that … It was depressing and it was miserable and anxious and everything, but I didn’t feel that it was just that. And they never even did sort of, like, say ‘oh its depression maybe because of this’, they just used to say it’s depression and here’s some pills. (Participant 8)
Struggling to accept the diagnoses that they had been given, some women talked about how they had been reluctant to take the psychiatric medications that they had been prescribed and how they had often felt pressurised into complying with treatments against their better judgement:
I finally agreed to take antidepressants and… [sigh]… against my wish really. But I was willing to try whatever, if they would just listen. (Participant 15)
However, having often adhered to pharmacological recommendations out of desperation, many women reported finding that psychiatric drugs were ineffective in relieving their symptoms and that they added further debilitating side effects to the experiences that the women were already having:
You get to the stage where you are on so many antidepressants that you sort of… you can hear your own voice slurring and everything else and you’re still thinking inside ‘but I’m still not right… something is still completely wrong’. (Participant 2)
An unheard voice
Concluding that their mental health diagnosis was inaccurate, women talked about how they had believed that there must be another explanation for their psychological difficulties. However, when they raised these concerns, women described how they were met with an unwillingness from healthcare professionals to consider, or explore, any possible alternative causes.
The other GP, he just kept knocking me back time and time again—you are depressed, you’re depressed, you’re depressed. (Participant 5)
With no visible reasons for their distress, women talked about how they had felt that were being appraised negatively by healthcare professionals, including General Practitioners (GPs) and Accident and Emergency staff, as “faking” or exaggerating the severity of their symptoms and described how this led to scenarios in which they had felt ridiculed and belittled when they had tried to assert their opinions:
I just felt like everybody [healthcare professionals] thought that I was making it up. And there is nothing worse is there than when you feel that everyone thinks you are lying. (Participant 15)
From feeling repeatedly “dismissed” with antidepressant medications, to being told that their mood changes were simply part of a “normal” female experience, women described how over the years that followed, their pleas for recognition went both unacknowledged and unheard. Using words like “desperate” and “crying out for help”, women talked about their feelings of helplessness and hopelessness as “every single door was just being closed” to them (Participant 2):
I said I can’t carry on like this, I just can’t carry on like this-I need help. I was crying out for years and years and years. And there was no one listening. (Participant 11)
In their quest to find answers, women reflected upon how they had needed to fight multiple battles, both against their symptoms and against the professionals from whom they had sought help:
You’re fighting everything and everyone, including yourself. You don’t have the energy, you know, to deal with everyone else … I was coming across as a hysterical young lady and I think really big assumptions were made, and I just felt that my opinion and voice counted for nothing. (Participant 15)
Life half empty
With the onset of symptoms typically beginning during adolescence, women described how their life had stopped at a time when new opportunities should have been opening up to them and how, as a result, they felt that they had lost many of the things that were important to them: “I had so many hopes for my life that I’m never going to be able to do because of this condition, like I did so well at school and I thought I’d have a really good degree, and I wanted to do a Masters, erm, I wanted to help other people. But I don’t feel like I’ve been able to do any of that because of this condition, erm, honestly, I think it’s… it’s… it’s broken me, completely.” (Participant 3)
When describing the limitations that their symptoms had placed upon their education and career opportunities, women talked how they had struggled to concentrate during their school and college years and how they had often ended up withdrawing from university or higher education. With regards to work, women talked about how their fluctuating psychological symptoms had often meant that they struggled to meet the demands of their job and how they had regularly terminated employment due to feeling unable to cope:
You end up crying, you end up at work with your face crying, you are emotionally exhausted and you are expected to go in and do a full days’ work and be this happy jolly camper when deep down you want to be somewhere else, and some days you don’t want to be there at all. (Participant 14)
In their personal lives, women described the negative impact that their symptoms had on their relationships with others. From feeling rejected by those around them, to isolating themselves from loved ones in a bid to protect them; women recalled the breakdown of their romantic relationships and the disappearance of their longstanding friendships. For women who were mothers, they talked about having felt unable to care for their children and their deep regret for not having been able to be the parent that they wished to have been. In particular, women talked about the feelings of immense loss and isolation that they had felt, resulting from, alongside descriptions of damaged family relationships and the despair and helplessness of those who tried to remain supportive:
You know work wise I just held onto a job, the happiness of being with my children dissolved into nothing really and my relationship really suffered with my husband because of it. So it’s very hard.” (Participant 5)
Theme 3: A life transformed
The third theme comprises of four subthemes and captures women’s experiences of recognising PMDD and the impact that this diagnosis had for their self-identity, subsequent treatment and lives.
Tracking the cycle
Women reported how over time both they and those close to them had observed how their symptoms recurrently peaked and abated, for some, resulting in monthly admissions to the emergency department each time they reached crisis point. In addition to this, a number of women reported noticing how their symptoms had been absent during the nine months of their pregnancy and how they had returned after birth:
The only time that I have been stable was when I was pregnant and breastfeeding. My mood was stable, I was stable, I didn’t get nothing because you don’t get no periods and even my husband would say the most stable he has known me was when I was pregnant. Other than that he has just felt like he has lived with a whirlwind. (Participant 7)
By using diaries to track their experiences over several months, women described how they had been astonished to find clear cyclical patterns, during which their negative feelings dramatically increased in severity during the weeks preceding menstruation, followed by a sense of great relief when their period arrived:
Keeping a diary is an essential beginning to this—to actually understand what is going on…that’s the key to it. Understanding the ups and downs of each month and being able to work out that there is a pattern. (Participant 5)
For some women there appeared a clear delineation between two “bad” weeks in the lead up to menstruation, followed by two “good” weeks, whereas other women reported experiencing only a few days of normality following menstruation, before their cycle and psychological symptoms recommenced:
Some months I would only have a matter of a couple of days where I actually felt okay. (Participant 10)
This new evidence for cyclical connection was identified as a pivotal step by women and the beginning of a renewed determination to seek answers. Women described conducting vast amounts of research via the internet and presenting this to healthcare professionals, as well as proactively seeking out hormone specialists and paying privately for help:
I went home and I started researching it, started watching YouTube videos, started reading papers, everything like that. And it was like the more I was reading, the more I was like right okay, I know that I have got to sort this. (Participant 13)
Finally, women talked about the moment that they discovered PMDD and their feelings of immense relief at the realisation that their experiences with PMDD-related symptoms suddenly made sense. In contrast to their previous mental health misdiagnoses, women expressed how PMDD finally fitted with their experiences, accurately capturing the recurring psychological symptoms that they had been unable to fathom for so long:
It made everything make sense and everything just clicked into place—it really did make sense that actually I wasn’t mad, like I thought I was going mad, and I drove myself mad. (Participant 7)
The treatment switch
All of the women perceived the treatment that they had received for PMDD as both life-changing, and life-saving. After being given a GnRH agonist drug to eliminate the hormonal shifts that had been making them so unwell, women talked about feeling as though a “switch” within them had been flicked and how this treatment had provided the ultimate evidence that their difficulties were related to their menstrual cycle:
I felt like my whole world had turned upside down again- I felt amazing—it was like someone had switched the light from on to off. It really was that severe, that quick. (Participant 15)
For some women, the realisation of how it felt to be calm and unburdened by their mental health symptoms was described as overwhelming, with one participant expressing how until she had received treatment, she “never actually knew what it was like to be happy.” (Participant 3). For others, they described the disbelief that they had felt at the sudden disappearance of the psychological symptoms that they had been living with for so long:
I had never felt that well in my life since I was eleven, I couldn’t remember anything before I was eleven really. All I know of the last sixteen years was self-destruction and anxiety and eating disorders and basically just surviving and getting through each day and hoping for the best, and, erm, I just kept saying to my mum, like, this can’t be real, is this how people actually feel? (Participant 17)
Re-scripting the narrative
The revelation that their experiences were caused by an undiagnosed medical condition appeared to have a significant impact on each woman’s understanding of her own identity. Prior to their diagnosis, women described finding it difficult to understand their own experiences:
I couldn’t understand why I felt like that, because I had parents that had always been there for me, and I had a good upbringing, so it wasn’t that [crying]. It was just this terrible darkness that hit me on and off, on and off, on and off. (Participant 1)
With no identifiable cause or trigger for their feelings, some women talked about fearing that they really were seriously mentally unwell or “crazy”, whilst others described concluding that their symptoms must be a fundamental flaw in their personality. The feelings of shame and self-hate that many of the women had experienced due to being unable to overcome their mental health difficulties resulted in an extremely damaged sense of self: women described feeling “worthless and “bad”, how they had blamed themselves for the situation that they were in:
I just thought that I was a bad person. And that was that—I just thought that I was horrible and that’s the way that I was. (Participant 12)
However, the new understanding that their symptoms had a physical cause appeared to result in a transformed sense of identity: women described how they were suddenly able to make sense of their past experiences and how this knowledge had helped them to understand how the things that had happened were beyond their control:
I also feel like now I know why, like I know why I feel so anxious sometimes and why I feel so sad. I know it’s not my fault, which is probably the main thing, I know it’s not my fault now, I’m not just a bad person. (Participant 3)
By being able to separate who they were from their symptoms, women talked about feelings of increased confidence and self-worth, alongside the realisation of how “strong” they had actually been in coping with their emotional difficulties for so long:
I realise now, I’ve been carrying this for so many years myself [crying] and I realise I am not weak, I am strong. I’m very strong. (Participant 1)
A whole new world
With a new diagnosis opening up new avenues of support, women talked about the overwhelming feeling of relief that they had felt to reach a specialist in PMDD, where the severity of their symptoms was finally taken seriously. In contrast to feeling dismissed, women described facing a professional who showed a genuine interest in their experiences and who wanted to hear what they had to say:
He [Specialist] was the first person that actually took my symptoms seriously, because when I told him what I had been feeling, the first thing he said is that must be awful for you. And nobody, in 17 years, family, friends, nothing, had ever said that to me. (Participant 12)
From receiving validation that they were battling a real condition, to making and embarking upon treatment plans, women described the sense of safety that they had felt in being treated by someone who understood and how incredible it had felt to feel truly supported for the first time:
I think to actually know that it has been recognised, that somebody is there supporting you, I think is… it was, it is completely brilliant. And even after having the diagnosis I rang the [Specialist’s] secretary a few times, bawling hysterically going ‘I really need to see somebody again’, and it was just the support- and I think that they already knew that they were dealing with people who were having these issues … patients that are completely, you know, lost really. So I think that dealing with somebody that understood, that knew, and I remember leaving that appointment thinking ‘oh my gosh—I actually have this. (Participant 2).
After obtaining effective treatment for their condition, women described similar transformations in both the quality and enjoyment of their lives. From promotions at work to embarking upon entirely new careers, women described beginning to live the life that they had once envisaged:
When I’m on [chemical menopause] I’m fine, like it’s amazing [laughs]. Yeah, like I’ve been able to keep a job, I’m in a relationship, I’m able to actually think about my future. (Participant 3)
Having felt isolated for so long, women also identified their joy at being able to reconnect with others and how, as a result, their family and romantic relationships had both strengthened and blossomed:
He felt he got his wife back, and I got my life back. You know it’s very true actually—it really does summarise how the treatment has actually completely changed our lives. (Participant 5)
Theme 4: Negotiating the aftermath
The final theme, comprising two subthemes, relates to the residual difficulties that followed women’s experiences of misdiagnosis and the new challenges that a life with PMDD presented.
Picking up the pieces
Whilst diagnosis and treatment were described as transformative, for many of the women interviewed, their illness had impacted heavily upon both their adolescent and adult lives. When reflecting on this, women often talked about their sadness in relation to their past experiences and the struggles that they had in coming to terms with what had happened to them:
[Crying] You can feel sad looking back, obviously that’s probably why I’m crying; it’s so much suffering, emotionally suffering. (Participant 1)
The differences between their expected and actual life experiences were extremely hard for some women to bear and, with no specialist emotional support available to them, women described how they were left grieving for what might have been, had they received a correct diagnosis sooner:
I feel like I have wasted my life, erm … had all those opportunities… to be something. And I have got the intelligence, but I haven’t got a direction [crying] … that’s how it feels. (Participant 8)
In addition to their grief, women described the challenges of needing to reinvent and redefine themselves, including re-learning who they were now and how they reacted to things, after having felt “lost” for so long:
I have come out the other end of it, as in I have got this, and everything is going to get better and is 100 times better… but who the hell am I now?… Who am I and what do I do? (Participant 8)
Women also talked about how finding a new sense of normality was difficult for those around them, with families and loved ones also needing to relearn who the woman was without her symptoms and needing to be able to adjust to this sudden change following treatment:
It does still affect us today—even though I am fine now, erm… and I guess mainly because my husband doesn’t know how to act around me anymore because he has been treading on eggshells for so, so long now that now maybe he won’t tell me things or he’ll ring me up from work and say ‘oh I’m stuck in work, are you going to cope? … he doesn’t know how to react still, which is hard when I think having a hysterectomy for me literally flicked that switch.” (Participant 2)
From an ongoing mistrust of medical professionals, to carrying remaining guilt for the ways in which they had previously treated loved ones, women described how their experiences had lasting consequences. However, for women further into their journey towards self-recovery it seemed that there was a place of acceptance that could be reached, where they were able to place a greater emphasis on what they had, rather than on what they had lost:
Talking about it made me realise how much this has affected my life. Like, how, awful it’s been and how tiring and how desperate I’ve been at times, and that, I’m so grateful to even be here now. (Participant 3)
Navigating a new battlefield
Following their diagnosis, women also talked about needing to negotiate the new challenges that a life with PMDD presented. Despite having a clinical diagnosis of PMDD, given by a specialist in the field, many women described a continued battle for recognition and care from healthcare professionals who refused to acknowledge or discuss their condition as a legitimate illness:
My mental health team were still saying like we don’t really like believe in this kind of thing, like, never really heard of it. (Participant 17)
Finding that there was a significant lack of awareness of PMDD in the medical community, women also talked about their frustrations at continuing to feel misunderstood and stigmatised, particularly by male medical doctors who they often identified as dismissive of menstrual-related concerns:
The [male] doctor that I saw told me that there was no such thing as PMDD, there was no such thing as PMS and this it is just something that women say. (Participant 13)
In addition, women described the complexities of trying to obtain treatment for a condition for which there are, to date, no approved disorder-specific medications and how this created further barriers to their care. From experiencing a variety of negative side effects from ovulation suppressing drugs, to finding that GnRH agonist treatments eventually stopped working, women talked about needing to trial a number of different medications before eventually finding that they had reached the limit of the pharmacological options available to them:
You can tell when it gets to three months, I just drop, like I’ve had my [GnRH] injection this week, but last week I was just frozen to my bed, er, I couldn’t, I didn’t go to work. (Participant 3)
With total hysterectomy combined with bilateral oophorectomy considered a last resort treatment when the medical management of PMDD has failed [22], both women yet to have children and women who had been hoping to add to their families talked about the difficulties of having to make a choice between their own life and carrying a future biological child. Fears about how a pregnancy could be achieved without becoming acutely unwell resulted in some women describing how they had made a conscious and self-acceptable decision not to become mothers, whereas for others, they described how facing a lifetime of infertility remained incredibly painful, adding a further dimension of grief to the life experiences that they felt that they had lost:
Not being able to have children, that’s a great sadness. Erm, yeah because, you see, you know, I, I could barely look after myself, so I couldn’t, even think about bringing a child, you know, into the world, because I just wasn’t emotionally stable enough. So, erm, so, yeah, I couldn’t have children. So that’s a great sadness, that’s a big impact. (Participant 6)