Participants who had completed at least 97% of the survey, endorsed premenstrual symptoms in consecutive menstrual cycles, and had sought help from a HCP specifically for premenstrual symptoms (N=339) were included in the analyses.
Sociodemographic data
The mean age of the sample was 34.66 (SD=5.88). The majority of the sample identified as women (n=332, 97.94%) and were white/Caucasian (n=311, 91.74%). The majority held at least an undergraduate degree (n=276, 81.42%) and were in paid employment (n=285, 84.07%). See Supplementary Table A1 (Supplementary information) for full summary of the sociodemographic characteristics.
Healthcare experiences
The majority of those who had sought formal help had done so from a primary care provider (e.g., general practitioner, primary care physician, family physician, family doctor; 95.87%, n=325), with 65.49% (n=222) having only seen one HCP.
Of those who had sought help from a HCP, 75.22% (n=255; Figure 1a) felt that the overall quality of their care was poor. 44.25% (n=150; Figure 1b) felt their symptoms were not taken seriously, and many perceived a lack of HCP knowledge regarding premenstrual disorders (37.76%, n=128; figure 1c). The majority did not receive referrals to or recommendations for additional non-formal sources of help (i.e., websites, support groups; 84.96%, n=288; figure 1d). The majority did not receive any recommendation of lifestyle changes which could be made to help manage premenstrual symptoms by a HCP (74.63%, n=253; Figure Xe).
When comparing perceived care quality, the group that rated their overall care experience as "Good" or “Very good” felt that healthcare providers took their symptoms more seriously on a 4-point scale from “Not at all seriously” to “Very seriously” (mean=3.06, SD=0.77; U=1383.00, p<.001) compared to the group who rated their overall care as “Poor” or “Very poor” (mean=1.44, SD=0.56).
Additionally, the group who rated their care “Good” or “Very good” also perceived the HCP to be more knowledgeable about premenstrual symptoms or disorders on a 4-point scale from “Not at all” to “Very” (mean=3.23, SD=0.69; U=1370.50, p<.001) compared to those with poorer care experiences (mean=1.60, SD=0.72).
Moreover, individuals who rated their care as “Good” or “Very good” more often reported that they had received recommendations for or referrals to additional sources of help by a HCP (35.44%, n=28; X2=48.251, df=1, p<.001, Φc=.382) compared to those who reported poorer care experiences (5.58%, n=14).
Furthermore, those who reported a “Good” or “Very good” care experience had more often been provided with recommendation for lifestyle changes to manage premenstrual symptoms by their HCP (36.90%, n=31; X2=7.849, df=1, p=.005, Φc=.152) compared to those with a poorer care experience (21.57%, n=55).
Diagnosis of PMDD
Of those who had seen a HCP specifically for premenstrual symptoms, 15.04% (n=51) reported that they have received a formal diagnosis of PMDD (Figure 2a). Of these, the majority waited at least 12 months for a diagnosis (41.18%, n=21; Figure 2b). The majority received a formal diagnosis of PMDD from a primary care provider (56.86%, n=29; Figure 2c). 16.81% (n=57) of those who sought formal help specifically for premenstrual symptoms reported currently monitoring their symptoms to assess whether they may have PMDD, with only 33.33% (n=7) doing this following the advice of a HCP, with the remaining deciding to do this themselves (Figure 2d).
Thematic analysis
315 (92.92%) participants provided a response to the free text question regarding what could have improved their care experience. Of these, 16 (5.08%) were deemed not applicable and so removed for analysis and the remaining data (n=299, 88.20% of entire sample) was included for thematic analysis. Of these 299, 20.74% (n=62) characterized their care for premenstrual symptoms as “Good” or “Very good”, with the remaining 79.26% (n=237) of participants characterizing their care for premenstrual symptoms as “Poor” or “Very poor”. Thematic analysis revealed a total of 59 codes which were organized into 8 themes (table 1).
Table 1. Themes, codes, and code frequencies. See Supplementary Table A2 for the codebook with code descriptions.
Empathetic care provision
Empathetic care provision was identified as a theme, with participants stating the importance of HCPs taking premenstrual symptoms seriously:
“They could have at least made me feel as though they took me and my symptoms serious”
“A health care professional that took my concerns seriously and didn't outright dismiss them”
Further it was identified that receiving supportive care was important, with many participants seemingly perceiving supportive care as being compassionate:
“Being more compassionate, more understanding”
Further, emphatic care provision requires the HCP to engage in active listening (i.e., to be perceived by the patient as listening and paying attention to them and what they are saying):
“Please listen to women! We don’t come to the GP for fun. We are usually embarrassed and desperate by the time we seek help so please don’t fob us off”
“Being sincerely listened to”
Active listening was often associated with a proactive approach, where the HCP is perceived as being proactive in their care:
“…wanting to find a way to help/solution/cause”
“Some curiosity.”
This may include offering suggestions of other sources of support without the patient needing to ask:
“For advice and guidance related specifically to the menstrual cycle - no medical professional has ever spoken to me about this without me specifically bringing it up”
Proactively offering symptom investigations:
“GP could have taken more interest in finding out why I was having issues”
Or taking the time to do research and expand their knowledge if they were unfamiliar with premenstrual symptoms or disorders:
“If he had said he didn’t know much about it but would look into it for me and come back to me with what he’d found so he could help me”
“If the GP had said, I will look into PMDD and then we can make a follow up appointment to discuss options.”
HCP accountability was also raised as a facet of empathetic care, with requests that HCPs provide an explanation of why they are unable to provide certain aspects care such as assessment, diagnosis, or treatment/management:
“A better explanation of why they couldn't help with the issues”
“…at least explaining why an assessment or diagnosis wasn't an option [that was offered]”
One participant also reported feeling like they were a burden in previous care interactions:
“I just felt like a nuisance”
Participants also raised concerns about the potential risks associated with empathetic care not being delivered, particularly if help-seeking occurs in the luteal phase:
“If they had spoken to me as disrespectfully and dismissively on that week when I was extremely vulnerable, I dread to think the outcome.”
HCP(s) education, understanding, & research
Many participants mentioned the importance of improved HCP knowledge of premenstrual symptoms and disorders, including potential symptoms and their treatment/management:
“If my GP had had knowledge of PMDD in any form this would have helped.”
Including awareness of how to manage complex premenstrual symptoms:
“being willing to […] work with more complex cases that don't necessarily fit the flowchart.”
Some participants stated the importance of including training about female health, hormones, and premenstrual symptoms and disorders in HCPs’ curriculum, with this training seemingly perceived as particular important for GPs:
“Female health and hormones should be part of GPs training”
“GP education about hormones and PMDD, so they believed me.”
“Do GPs even know anything about women’s health or is the curriculum the same as in the times were clitoridectomy was used to treat mental illness in women? Educating the professionals would maybe have improved my care experience”
Improved HCP knowledge likely includes improved recognition of the potential impacts of premenstrual symptoms and disorders on functioning:
“…recognising the impact it has on my life which has been practically ruined.”
“Some understanding of the impact that PMS can have, the danger of regularly feeling suicidal and the strength of symptoms.”
And in general, improved recognition of the role of the menstrual cycle in mood and mental health:
“Assumptions were made by a male doctor who put it down to depression. He had no intention of listening to the fact that just before my period I had thoughts of suicide but it was instantly relieved once my period has started.”
“Them acknowledging the possibility of period related issues”
Moreover, participants expressed the importance of HCPs recognising the association of the menstrual cycle, and premenstrual symptoms and disorders, on neurodevelopmental conditions such as autism spectrum disorders and attention deficit hyperactivity disorder (ADHD)
“…more knowledge and education on PMDD and how it affects people especially those who are neurodivergent like myself as [it] affects every aspect of our being and destroys our lives.”
Associated to this, one participant mentioned the importance of HCP awareness and communication with specific patient groups, such as patients with neurodevelopmental conditions or LGBTQ+ patients:
“Better disability and LGBT awareness among staff.”
Some participants expressed the need of seeing an experienced HCP or someone who specializes in premenstrual symptoms or disorders:
“Having talked with a professional who is expert on PMS”
“It was like they’d [HCPs] had no previous experience with the condition”
Finally, there was a sentiment that there was a need for further research into premenstrual symptoms and disorders, including improved understanding of the causes and presentation:
“More research and understanding about PMS - what range of symptoms are commonly experienced and for how long, what is considered usual, do hormone levels play a role and can we consider testing levels at different times if the cycle to see if there is any dysregulation that is causing extreme PMS?”
As well as more evidence for the efficacy of available treatment/management options, in addition to the discovery of novel treatment/management options:
“More research into what causes these issues and an effective treatment that deals with the acute problem rather than blanket long term medications for symptoms.”
Participants also remarked that it is important that HCPs are aware of recent research to inform high-quality care practices:
“Further knowledge and understanding of up to date research into appropriate care for PMDD”
“Being able to speak to a practitioner with specialist knowledge and interest in PMS and PMDD, who was more up to date with the latest knowledge and treatments.”
Comprehensive symptom assessment and investigations
Participants raised the importance of comprehensive symptom assessment, which asks about a wide-range of possible premenstrual symptoms:
“…a holistic assessment of my symptoms”
“Discussing my symptoms in greater detail”
“Asking more questions rather than writing it all off as ‘normal’.”
“More holistic take/lifestyle questions”
Some patients commented that comprehensive symptom assessment may be achieved by employing a structured screening tool to ensure all premenstrual symptoms are covered:
“Maybe going through a questionnaire to guide questions about relevant symptoms”
“There needs to be a new checklist for females with symptoms mental and physical with regards to periods.”
This would also ensure high-risk symptoms and behaviors such as suicidality and self-harm are assessed, with many participants reporting that their HCP(s) had not specifically asked about suicidality and self-harm:
“Asking the right questions so patient doesn't have to be the one to bridge topic of [suicidal ideation/self-harm] - it's understood that that can be a part of it”
This is especially crucial as some patients may not feel able to disclose this information without prompting from a HCP:
“I was too scared when my children were younger to admit that I felt suicidal every month.”
Comprehensive symptom assessment, potentially with a structured screening tool, may also minimise the perception that HCPs are solely or primarily focused on physical symptoms, and overlooking psychological symptoms:
“Male doctor said [he] was only interested in the dizziness and hot flashes”
“More exploration of PMS symptoms rather than the bleeding itself”
As part of a comprehensive symptom assessment, some participants expressed wanting to have tests/investigations such as blood tests or scans performed to rule out any underlying causes and identify potential hormonal imbalances:
“If she has taken me seriously, done further tests, or even pretended to care.”
“I would also have liked more conversations about ruling out other issues and investigating comorbidities like ADHD”
“…maybe a suggestion of a blood test to make sure hormonally everything is ok.”
However, many participants also noted that a crucial aspect of offering tests/investigations is ensuring there is an opportunity to discuss results from these tests/investigations with a HCP:
“Follow up on test results, even though in normal range and discussion about what to consider next outside of basic tests”
Some participants also suggested that the care record or patients’ medical history could be a useful supplement to appointments to contribute to a comprehensive assessment by streamlining and guiding the appointment:
“If GPs who had looked through my history prior to calling and understood my situation had been more thoughtful and treated me with the respect I needed at the time.”
And to reduce or remove the need for repeated information gathering:
“…glancing through my history while we spoke so I wasn't going over the same points again and again each time”
“Checking my medical records prior to or in my appointment, which would have shown a PMDD diagnosis, that I was in private talking therapy and that I was taking sertraline at a consistent dose. I had to tell the GP all of this so her suggestions weren't helpful or understanding.”
As well as facilitating follow-up and monitoring over time, and between HCP(s):
“…compare notes over my years & diff NHS [departments]”
With HCP monitoring premenstrual symptoms and associated behaviors over time, in the context of the patient, to identify deterioration being deemed as important:
“The previous GP could have looked into my symptoms better since it was a severe and unusual behavioural change, I started gaining weight very quickly and my overall appearance had rapidly declined. The mental health team should have noticed that I was a good student that hardly ever missed school and had severe increased anxiety, suicidal thoughts and depression and noticed that this was not ‘attention seeking behaviour’”
The importance of HCPs suggesting monitoring over time by engaging in symptom tracking was also noted with the aim of supporting assessment:
“It would have been better if the GP […] asked me to continue to register all my symptoms”
“A plan on how we could investigate for PMDD - hormones fluctuate significantly during a cycle so some understanding of this along with the symptoms would have supported me to gather data so to speak”
Some participants stated that in general there was a need to improve the speed of understanding. With earlier recognition of symptoms or understanding of experience by HCPs:
“Better understanding early on and feeling validated that this isn't typical anxiety”
“It took a long time/a few doctors for anyone to even mention PMDD”
Diagnosis
Participants expressed wanting to have received a diagnosis of PMDD, even if this was provisional (i.e., whilst tracking symptoms over two cycles) or “A formal diagnosis”:
“A proper diagnosis instead of just being brushed off with ‘you are a woman that is just normal’”
There were reports from some participants of previous experiences of premenstrual symptoms being misattributed to a different cause such as early onset menopause:
“I think the GP immediately jumped to early menopause as an answer but I really don’t feel that’s the case”
Or stress:
“…often blamed on stress when women go seek help for it.”
With other participants reporting their premenstrual symptoms had been attributed to a different condition:
“Not being told I was ‘depressed’ which, for years, was a catch-all for my mental health.”
Resulting in potential misdiagnosis:
“Readily accepting my experience as truth rather than emotional instability due to an alleged personality disorder.”
One participant also called for more professional support provision even if a provisional or official diagnosis of PMDD is not given:
“Support for the physical and mental health symptoms, even in lieu of a diagnosis”
Professional support and treatment provision
The theme of professional support and treatment provision was mainly characterised by participants expressing the need of a wider treatment offering from HCPs, this includes offering alternative or a range of treatment options including hormonal, non-hormonal, and psychological treatments:
“Improved variety of suggestions to help treat or manage symptoms.”
“I would also like more non medication options for treatment and support.”
This includes a perception that only hormonal treatment are an option:
“…options for treatment (I was told to get the coil and that if I didn’t want this nothing could be done)”
“Not being palmed off with the standard contraceptive options”
“More options than just a pill would have been better.”
Or antidepressants will be the only treatment offered by a HCPs:
“Resources being available for more support options - not just antidepressants.”
“[the HCP] didn't look into any alternative idea, just straight to antidepressants”
With no “one size fits all” and it being important that the HCP(s) recognising the individual and delivering personalized care and treatment management:
“…not given a one size fits all answer”
“…individual treatment. It felt like they just have a one size fits all answer which doesn't work”
Related to this, some participants reported a general sense of uncertainty about available treatment/management options:
“Clearer management/treatment options.”
“I'm not sure what other methods of support there are as the GP didn't speak about any - does the contraceptive pill help?”
Participants reported it would have improved the care interaction if the HCPs had offered treatment or “Advice and care plan”:
“I wish I had been offered some treatment”
“Offering real help, trying treatments, actually trying to solve the problem.”
With it being important that there is an improved speed of treatment initiation, with treatment being offered at the first instance of help-seeking:
“Counselling should be absolutely offered straight away”
“If they had prescribed [the contraceptive pill] straight away”
There was a perception from some participants that they had received an inappropriate prescription:
“Not been prescribed pain medication that I cannot take, and could have caused me more harm than good if I hadn't checked the label myself.”
“I don’t think it’s appropriate to prescribe SSRIs for PMDD, when said SSRIs also come with unbearable side effects”
With many participants having had previous negative experiences with medication available for management of premenstrual symptoms and disorders:
“Hormonal treatments are the first and apparently only treatment for anything related to your cycle, I felt pushed towards that as the ‘best’ option even though I’ve had such bad experiences with them in the past.”
Which in some cases resulted in reduced interest in further treatment seeking behaviour:
“The feeling that if I do seek help it could be resolved without going back into contraceptives as they ruin my skin and give me vaginal dryness, lack of overall sex drive.”
“But realistically other than medication to mask the symptoms of PMDD at the expense of worse side effects, there is nothing they can do for me.”
Or reported treatment non-adherence:
“I stopped taking [the contraceptive pill] because it was giving me so many side effects.”
This also highlights the importance of HCPs providing a treatment follow-up to ensure treatment efficacy and optimization, as well as monitoring negative side-effects:
“When put on the pill (especially after I told them it causes me to have low moods), a follow up of how I was finding it after 3 months.”
“A follow up appointment booked in at the time of starting a month of treatment to be able to check in with the doctor”
“Would have been good to have some follow up, as none since the initial appointment with GP.”
And ensuring medication continuity to minimise the risk of deterioration whilst not receiving therapeutic intervention:
“My GP […] hasn't always understood the importance of me always having access to the pill (despite it being written on my record it's for PMDD) - I can't just wait like everyone else or the symptoms return.”
Aside from wanting to access therapeutic interventions, one participant mentioned wanting the HCP(s) to help them secure time off of work:
“Discussion of PMDD and how it could allow time off work if necessary.”
Signposting or referral to additional resources or sources of help
Participants generally requested the provision of additional information from HCPs, either provided directly by the HCPs in an appointment setting:
“It would have been better if the GP explained my symptoms to me and explained what is happening to me”
Or the HCPs signposting to resources which can be independently accessed outside an appointment setting:
“I was never made aware of any PMDD-specific resources.”
“I wasn't signposted to any support networks or relevant information.”
Some participants specifically mentioned that this information should include information about how common premenstrual symptoms are:
“…what range of symptoms are commonly experienced”
“I would have wanted more understanding of how widespread the symptoms are, how common among women they are, so I didn’t feel so alone.”
Participants also stated that care experiences would be improved if the HCPs provided advice for symptom management:
“Some advice on what could help during these two weeks.”
For managing high-risk psychological symptoms:
“Giving me practical coping strategies such as 'try sitting in A and E' (or better ones!) rather than leaving me to flounder alone at potential risk of suicide.”
This would be particularly welcomed if advice was offered without prompting from the patient:
“For advice and guidance related specifically to the menstrual cycle - no medical professional has ever spoken to me about this without me specifically bringing it up.”
Many participants also mentioned wanting the HCPs to provide an onward referral to specialist care:
“…to refer people to ACTUAL get help to treat their problems”
“Let me see a gynecologist, someone specialized.”
Participants mentioned that HCPs signposting to other sources of support would improve the care experience:
“it might have been useful to be directed to other sources of support.”
“…being signposted to charities or other specialized professionals”
A participant also suggested that comprehensive patient information packs could be provided by the HCP which provide information, recommendations to other sources, and self-help advice:
“Patient care packs - daily diary , helpline numbers and self-help book”
Wider healthcare system improvements
Some participants commented on factors which would improve the care experience which are relevant to wider healthcare system improvements. One such improvement is decreasing wait times, this included both reducing the speed of an onward referral:
“Referral could be quicker”
“…it was the referral to the psychiatrist and gynecologist when things slowed down/stopped”
And the time between appointments decreasing:
“Improved waiting times between appointments.”
Related to this, it was mentioned by participants that it was important for access to HCPs to be improved:
“Being easily able to access GP (or other appropriate primary care) for a 'non urgent' matter.”
“It was near-impossible to get a doctor's appointment at my surgery, so more availability of appointments would have helped.”
With it being crucial that there was continuity between HCPs seen between appointments, with a HCP acting as a single point-of-contact during the diagnostic and treatment process:
“…to have the same female GP as a point of contact.”
“Continuity of care - after I was referred for blood tests and they came back clear, there was no follow-up”
Participants also noted it would be beneficial if appointment times were longer:
“When I began to list the different symptoms I was told I'd need to book separate appointments to discuss them”
“More time for appointments to really go through information. They often seem rushed.”
Participants also commented on the referral process, with a suggestion of specific referral pathways designed for premenstrual symptoms/disorders:
“A clear referral pathway to get a diagnosis”
Which may facilitate a self-referral option:
“Ability to self-refer to [obstetrics-gynecology]/consultant services.”
It was also deemed important that referral decisions were transparent, particularly as to why a referral to a specialist service may be rejected:
“The [gynecology] department taking the initial referral […] instead of pinging it back to my GP with no real reasoning as to why.”
Patient role/voice and preferences
The patient preferences was mainly characterized by preferences for face to face appointments with HCP:
“More dialogue, face to face appointment”
And a preference for seeing a female HCP:
“Seeing a female consultant”
“Maybe having a female practitioner to speak to instead of a male”
In terms of patient role/voice, participants expressed interest in engaging in their healthcare experiences. Participants highlighted the importance of the HCPs encouraging shared decision making with the patient, particularly in regards to treatment:
“Not been defensive when I questioned whether antidepressants were the best option.”
“A dialogue about treatment options.”
With it being crucial for the HCPs to respect the patient’s treatment decision:
“More patience from the doctor, and respect for my choice not to want to get on the pill.”
“Listened to my concerns about using anti-depressants and worked with me to discuss alternative solutions.”
Participants also stated that they could also be involved in the healthcare interaction if the HCPs consider information gathered by the patient from informal sources (e.g., from online resources):
“Sometimes I feel like having done some research is off putting to general practitioners and I have to play stupid in order to be advised. If I come in with some theory as to what may be the problem, I often get a bad look or the tone of the conversation completely changes (for the worse).”
“Also not rolling their eyes when I’ve said I’ve looked on the internet when I’ve done that as I’ve felt unheard by the very people who should be listening”
Additionally, a participants mentioned they thought it would be beneficial to provide information prior to an appointment to help prepare for the appointment and ensure the assessment is comprehensive:
“Before when I had my first appointment, I sent in an email with all my symptoms so the Dr could read before I went in. That helped because I felt he guided the conversation and I kind of knew what we would discuss.”
Finally, participants stated they wished to co-design a safety plan between themselves and the HCPs:
“Next of kin/ trusted person patient and GP should do a safety plan also what can those do to help and keep patient safe.”