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Supporting People with PMDD
711 Plays1 month ago
Content warning
This episode includes discussion of suicidal thoughts. In particular, there is a brief section between 6:50 and 7:10 that listeners may wish to approach with care. Please listen in a way that feels safe and supportive for you.
Premenstrual Dysphoric Disorder, is a severe form of PMS that causes significant emotional and physical symptoms during the 1-2 weeks before menstruation. Symptoms include severe mood swings, anxiety, and depression, which can negatively impact daily life, work, and relationships. Physical symptoms like bloating, headaches, and fatigue are also common.
In this episode, PDA Society speaks with Kirstie McStay, Community Manager at Spectrum Gaming, about PMDD, exploring how cyclical hormonal changes can affect mood, wellbeing and daily functioning.
The conversation looks at how PMDD can impact relationships, work and self-perception, particularly when symptoms shift dramatically across the month. It also highlights the importance of being believed, tracking patterns, and recognising that what can look like a sudden change in behaviour or mood may be connected to hormonal cycles and a very real health condition.
Key Themes
- What PMDD is and how it differs from PMS
- Emotional and physical symptoms that can affect daily life
- Tracking cyclical patterns and noticing early warning signs
- The importance of being believed and supported
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub.
You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Training: www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: www.pdasociety.org.uk/support-and-training/support/
Guest’s links:
- Spectrum Gaming on trauma: www.spectrumgaming.net/resources/categories/understanding-trauma
- Spectrum Gaming on PMDD: www.spectrumgaming.net/post/supporting-autistic-young-people-with-pmdd
- Kirstie’s PMDD webinar resources: padlet.com/spectrumgaming/pmdd
Recommended
Transcript
Welcome to the PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So, whether you're a PDA yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
00:00:39
Speaker
Hello, my name is Rachel and I'm your host for this podcast.
Exploring PMDD and Its Impact on PDA
00:00:42
Speaker
Today we're going to be delving into the topic of PMDD or Premenstrual Dysphoric Disorder, which I know some of our PDA communities struggle with.
00:00:51
Speaker
So whether you were personally have this condition or you live with someone or support someone who does, I'm sure you'll find this discussion really, really fascinating. Before we begin, i'd just like to warn listeners that we will be discussing things on the topic of PMDD, which may include depression, anxiety, or suicidal thoughts and can be triggering for some. So just to say, do look after yourselves. And if you need to step away, then please do
Introducing Guest Speaker: Kirsty McStay
00:01:18
Speaker
so.
00:01:18
Speaker
So I'm delighted to be joined by our guest speaker for this week, Kirsty McStay. I'll let Kirsty introduce herself. So welcome Kirsty. And thank you very much for coming on our podcast. And would you like to introduce yourself?
00:01:31
Speaker
Yes, certainly. Thank you for inviting me. Um, yeah, so I'm Kirsty and I currently work for Spectrum Gaming, um, where I've worked for about three and a half years now supporting autistic young people. Um, I'm autistic and ADHD myself. And if you've not heard of Spectrum Gaming, we're an autistic led charity that supports young people. Um, basically we create safe, supportive spaces, um,
00:01:52
Speaker
both online and offline where autistic young people can build friendships and basically just be themselves. Um, but apart from that, we also do a lot of advocacy work and create resources and deliver training to both parents and professionals, um, supporting autistic young people so that there's kind of like better understanding and that they get the right support.
00:02:10
Speaker
Um, before I worked for SG, I've also worked in education, supporting autistic young people and also run, um, peer support groups um when my own children were much younger, like parental peer support groups, when my special interest was more like, um maternal mental health and postpartum support. um And yeah, and just like through my work with Spectrum Gaming, I was surprised how little awareness there was about PMDD and given how much autistic people can struggle with their menstrual cycle. And um whenever I mentioned it to young people who are supporting, there would be this like aha moment when they realized that was something that was happening for them. And so, and yeah, so I just really wanted to do more work and
00:02:50
Speaker
around raising awareness to do with that because um yeah like given the shocking like like mental health statistics and the impact that it can have um yeah i'm just really passionate about raising awareness and helping others feel less alone in it really Yeah, that's great. And I mean, you know, we're really, really grateful that you come on. So as you say, I think it really, really is an important topic. So I guess, I guess the first place to start, really, what would be helpful is is to sort of, you know, if you could possibly describe what is premenstrual dysphoric disorder or PMD, and just for people that haven't heard about it.
00:03:22
Speaker
ah Yeah, so PMDD is commonly ah best described at the moment as like an endocrine disorder, meaning that it's a hormone related disorder. and It's usually described as a sensitivity to the natural fluctuations of hormones that we experience anyway and in the luteal phase of the menstrual cycle. So that's like the five to 10 days before you start bleeding. um However, it's not particularly well researched. As with many things that are classed as like a women's health, there's not a lot of the research there. um And so there are emerging studies all the time that help shed light on what is going on. um
00:03:57
Speaker
For example, there's recent research which suggest suggests links to trauma, which could mean that treating it just as a hormone thing might not always be like the most effective solution. There could be other things going on. and And so that's kind of where my focus is at the moment is like helping people understand that link. Mm-hmm. Okay, that yeah, that's great. And so so I guess so that people can understand sort of maybe a little bit about the biology behind it, could you sort of explain sort of what happens sort of during the cycle?
Understanding PMDD Symptoms and Challenges
00:04:27
Speaker
um You mentioned about the luteal phase and and if you could just explain a little bit more about that so so that we we know sort of when are symptoms more likely to be within your cycle, more likely to be prevalent and not.
00:04:41
Speaker
Would that help? Yeah, yeah. So, um so yeah, so like i said, it's like a sensitivity to these natural fluctuations of hormones. And there are a few different things going on in our bodies that can result in that sensitivity. and But the like said, the main one for me, I think is this, this m significant sensitivity.
00:04:57
Speaker
when we're talking about like, um, autistic or neurodivergent people is the impact of stress and trauma. So, because like one of the, um, in one study, it was 83% of people with PMDD had experienced early life trauma, um, with emotional abuse being the top common at like 71%, but being autistic can mean that we experienced higher levels of trauma than neurotypical people just through existing, like just through our daily existence. It doesn't always have to have been something bigger and scary. to be classed as as traumatic, but it can be like a buildup of smaller ongoing chronic stress and trauma.
00:05:31
Speaker
um So if we experience more sensory overwhelm and um more likely to experience relational trauma for being misunderstood and being in environments that aren't suitable for us, we can be more likely to um to experience things like catastrophic thinking and get stuck in anxiety loops and obviously demand avoidance can be a really big stressor. um So if we're feeling trapped and pressured or our autonomy isn't being honoured, all of these just daily experiences can can result in trauma.
00:06:02
Speaker
Right, okay, yeah. And I guess i guess therefore there that's sort of one of the differences really between and PMDD and other premenstrual conditions in the fact that there's an element of trauma influencing it as well as just the cycle. It's you know it's a lot more than you know sort of PMS, for example, isn't it? It's it's a lot deeper, more difficult feelings that ah you know that that it generates. Is that that is that right?
00:06:31
Speaker
um Yeah, so it is about like that it impact on and how you exist, as it were. So like, yeah, it does share a lot of symptoms with PMS, but it's about the significant impact on on like how you're feeling and how you can go about your daily life. So there's a difference, for example, from feeling maybe just a bit grumpy and tearful versus feeling so depressed that you feel suicidal or you're having intrusive thoughts about hurting yourself. I cannot express enough that if you are experiencing suicidal ideation just before your period every month, that that is not normal. And that you absolutely should seek out support if you are frequently feeling like that. Like I think often we think that, you know, everyone experiences the same things that we do and everyone else is just magically coping with it better and there's something wrong with us. um but like yeah no if you do feel like that please like you know you deserve support with that and yeah and um don't let anyone brush it off as like oh that's just part of being a woman no no no exactly and i suppose as well that you know because we feel the way that we do before our period we just just as you say we assume that's what everybody else feels don't we and it's recognizing as you say that that's not it's not normal
00:07:44
Speaker
to feel that low or to feel suicidal it's not normal and therefore you know you can you go and support you know seek some support isn't it yeah yeah definitely so um with you mentioned um you touched on sort of um how it impacts neurodiverse people a little bit earlier but is it is there much more of a significant impact does it affect neurodiverse people more than the average population Um, the research on this is, is quite variable.
PMDD's Effect on Neurodiverse Individuals
00:08:13
Speaker
Um, again, because there's just not enough of it done yet I think both when we think about like autism and ADHD, for example, they've both historically been very much seen as like boys things are very much seen as childhood things. So there isn't always that research there to do with, you know, women are older people who experience things. So, yeah. So, um,
00:08:35
Speaker
So there is some research out there, but like, it's very varying like statistics. So PMDD is thought to exist in the general population at levels of around about five to 9%. And then the studies there are on autistic and ADHD people is but anywhere between 14% to 92%. So that that's like, it's like very varied. Um, so there definitely needs to be more research there. However, um if we put the research aside one second and just think about, um,
00:09:01
Speaker
ah Lived experience and if you're in any neurodivergent community you like you can just see that we struggle with this a lot more. um It definitely does appear to be more prevalent like just anecdotally and just from existing in other spaces um with lots of people who do experience this. yeah.
00:09:20
Speaker
yeah and I think it goes back to what I was saying as well about like trauma you know like yeah you know with because we are likely to experience higher levels of stress and trauma in our lives than the general population because of um you know how sensitive our nervous systems are and how difficult it is to exist in you know chronically in environments that aren't suitable for us um yeah then it is something that that we are more likely to struggle with because of the impact ah physically on bodies when you experience this chronic stress, like resulting in inflammation, which can then impact how your body and responds to and the normal fluctuations of hormones. um Yeah.
00:10:03
Speaker
Yeah. Okay. Yeah. And I, and I suppose as well, because, and you know, sort of some, you know, we're talking sort of, know, particularly today within the PDA community, for example, then, you know, highly sensitive nervous systems, it's it's highly likely to have an even greater impact then, isn't it? You know, and so it is something. and And, you know, you mentioned a statistic 14 to 90 something percent is is the, which I know is at a huge range. But even if you take the bottom end of that scale, that's still significant amount of people, isn't it?
00:10:36
Speaker
Yeah, definitely. It has a massive, massive impact. So, So then for how would somebody know then if what you know what are the main symptoms if you like a PMD how would somebody recognize that they they actually struggle with this and also then how would they get it diagnosed.
00:10:53
Speaker
Well, in order to get diagnosed, you need to show the that the the symptoms that occur occur around about five to 10 days before your period starts. And then they resolve pretty much not the instant your period starts, but like in the first couple of days, like for me, I get, well, like it kind of is a bit of a slow, like I can definitely feel some things off at 10 days before my period. And then the intense bits about five days and before my period, like that those five days, ah hell. And then like, like the two, like it pretty much resolves around about like one to two days in and there's symptoms that you can experience then, like I said, they're similar to PMS, but like very much more intense. So increased anxiety, but like very noticeably increased anxiety. and You might have more intrusive thoughts, especially about hurting yourself or just about and just catastrophic thinking and getting really stuck in those anxiety loops. You might feel really hopeless and depressed. and Suicidal ideation is very common. um
00:11:54
Speaker
You might feel more angry and irritable. So not just a bit grumpy, but I mean, like you might find yourself like shouting at people or sabotaging relationships. Right. your executive functioning just ceases to exist. You might have difficulty focusing, remembering like what day is like what's going on. Um, it can really significantly impact executive functioning. Um, um, increase in like a RSD or rejection sensitive dysphoria, like like ah tying in with that anxiety and spiraling um you might also experience like more physical things for example um cramps but I don't just mean like you know like I was like oh everyone get cramps but I mean like if you are like doubled over in bed unable to like function as a human I mean like you can experience really high levels of pain um also like just pain generally like I find ah because i I'm hypermobile as well um like all my my joints it just hurt a lot more in that week um you can experience a really severe fatigue and being able to do things um you can have sleep changes but like either you can be sleeping loads more or you can suffer from terrible insomnia and not be able to get any sleep um changes in eating so again you might just barely eat at all and really struggle to remember to eat or you might find that you eat loads um especially carbs um
00:13:15
Speaker
So, yeah, so those are probably like the main things. And I suppose it's as well, it's it's looking at, you know, because for for PDA individuals, you know, that level of anxiety is high anyway, but it's it's it's over and above that normal, whatever your baseline level is, yeah it's that over and above. You're looking for symptoms that...
00:13:36
Speaker
it's so it's the timing and the extreme symptoms isn't it it's looking at the timing is it those period of days before your period does that does it seem to get better when as soon as your period starts yeah um and then it's that over and above your normal level of anxiety or your normal um you know different yeah feedback yeah it can be really helpful to track This either, like you can get digital trackers. So like um I use Clue personally, but there's also Bell is we is one that's designed specifically for PMDD. Or you can get like a paper or PDF or whatever. Just even a spreadsheet would work if you just wanted to make your own. and You can get them lots of different like ah PDF style trackers online. We have one on the SD website, but there are lots of other ones out there as well.
00:14:19
Speaker
and So that then you can track like what your like baseline is throughout the month and like when it gets worse, when it like ramps up. and It can be very helpful to then take that with you if you do ah want to go to the doctors and seek you a diagnosis or seek and ah support there, because then like like you know you've got like evidence to show them that, yes, okay, I do suffer from anxiety, but like you can see here, it got way worse. Yes. Like, this isn't no this is outside this is outside of the normal. So you would to get diagnosed then, it would be through the GP? Can the GP diagnose it, or do you have to see a specialist? Yes.
00:14:54
Speaker
um GPs should be able to diagnose it. um If you're lucky, they may refer you to endocrinology, but um like lots of people don't often like get the opportunity um to, but yeah, like, yeah, taking it to your GP is definitely the first step. Yeah.
00:15:11
Speaker
And take your evidence, go, you know, go with, go with, go with, yeah, go with, yeah, go with, yeah, as you say, show the evidence of that, like, look, this is much more than my normal, my normal baseline. Yeah.
Living with PMDD: Daily Life and Treatments
00:15:23
Speaker
Okay. Brilliant. So overall, what impact then would PMDD have on the individual?
00:15:34
Speaker
you know Does it limit you doing things from the symptoms you've described? It sounds like that you might not be able to carry on with certain activities that you might do in other times of the month. and Does it prevent you from doing any activities? Does it impact on work, for example? oh Yeah, like I find... um like I'm lucky in that my job means that I usually can alter my workload if I need to. Um, but yeah, but it can be, it can definitely impact on work and relationships and everything. So like, it like, for example, if we talk about like sensory processing, um, differences that we might already have, we might already be like much more sensitive to,
00:16:19
Speaker
um sensory input and then if it's even more sensitive than usual this may mean even just ah ah simple things like going shopping or you you know being out of the house generally being out of where you know like you can like control your environment just going anywhere and doing anything and talking to anyone can suddenly be much more difficult to manage and process than it normally would be Um, obviously if you're struggling with anxiety and emotional dysregulation and RSD and things like that, like even just having conversations with other people, you can feel.
00:16:55
Speaker
much more sensitive to how they're reacting to you. And you can pick up, you know, like if you're one of these people who like me, you can pick up very much on like people's emotional vibe and everything feels more wrong than it usually does. And that can definitely send you spiraling. So then that can make you want to avoid social interaction. Or if you do socialize, it can take so much more out of you. It's so much more difficult to mask because, You're struggling more, so you've got to mask more, but you've got less energy to mask. Yeah. yeah And you're drained more easily. And so like so all of that can be just so complicated. And then you can make make you feel like the best thing to do would be to isolate. But then obviously, if you isolate, you then feel really disconnected from everyone. So if you're feeling hopeless and worthless and suicidal, that doesn't go very well with that. yeah know
00:17:42
Speaker
Yeah, so so basically, you can just feel really overwhelmed and not really sure what to do with yourself that you feel really out of control, um which is something that I really struggle with, like I like to feel. in control of what's going on. And it's the time of the month where I i feel like i I have no idea what I'm experiencing anymore. I don't know what's going on for me and everything's much more difficult. Even just like executive functioning stuff as well. Like if I can't focus on work or I can't do certain tasks, like trying to push yourself to do those things is just going to make you feel worse. So yeah, so if you are able to make your schedule, like if you know it's coming, if you can make your schedule like much more low demand, much more nesty but like have those safe connections with if you have safe people in your life so that you don't just isolate yourself um that can be really important as well yeah and i guess it as you say it's looking after yourself isn't it it's planning ahead that you know that actually for these certain amount of days during the month you're going to struggle with more things so take your workload down surround yourself with people that will support you um and that's the way that you can help yourself to manage your way through it isn't it yeah and then
00:18:52
Speaker
So what m what support for medical professionals is available? Are there any treatments, for example, for PMDD or and different programs that and will help?
00:19:04
Speaker
As it is generally considered um related to hormones, and normally the first thing that you are offered m would be synthetic hormones, such as the contraceptive pill. So you're often offered progestin based ones, um, that suppress ovulation, because then obviously if you're not experiencing those fluctuations in hormones, then you can't like react to them, if that makes sense. Um, so for, for some people that, that does help. Um, however, sometimes that's not really addressing like whatever the underlying issue is, which would be more support for like how stressful your life is, um or dealing with, um,
00:19:45
Speaker
you know, having that space to process trauma, like if you're, ah or like, or removing yourself from unsuitable environments, things like that, like those things might actually be like more effective, um but you're unlikely to be offered much support with that for medical professionals, they're more likely to just offer you like, okay, well, if you're, Cycle's the problem. Let's just stop that happening. But often, i mean, our bodies might not necessarily enjoy that. So then that might just cause other problems. So it can be really helpful to, you know, do your research on that and definitely talk that through with a health professional. If you happen to find a health professional who it would be more understanding and can talk about things more holistically, that would be great. and I know that often that it can be really difficult to find that though.
00:20:28
Speaker
um Sometimes if you're older, you might be offered, and either sort of like um chemical or or actual hysterectomies. um But again, like from reading the experiences of other people and in online communities that often isn't the answer either. So yeah, it is just really important to do your research and talk to other people and find out about their experiences and think about how that might work for you. And like, don't let anyone gaslight you into thinking that like, you're wrong. Like if you, if you try something and it's not working for you, ah you know, your body best. So um yeah. um
00:21:05
Speaker
But yeah, so yeah. Sometimes as well, like um I've like personally have found that taking antihistamines for the week just before my beer my period um has been incredibly helpful. So looking into that aspect may be helpful as well. and If we're talking about like chronic inflammation causing more of histamine response in the body than looking at it like that. But again, that that's still just like addressing one bit and not the underlying issue, but it can provide some relief. And obviously the symptoms are very distressing. So getting relief where you can, can be important. Yeah, yeah, exactly. And i said and it sounds like, you know, that as you say, it's not just one aspect that you need to deal with. Yes, there's a hormonal aspect to it, but actually you've got the, you know, the trauma, the underlying anxiety, the, you know, lots of other components there, the the inflammation, et cetera. Actually, we need to look at all of those things. Yeah. So it's, it's fat as you say, ah very often, isn't it, it's finding that right medical professional that understands it.
00:22:04
Speaker
Yeah, definitely. And I think just looking at that bigger picture, And seeing where you can interrupt that like stress cycle or, you like where you can make changes to live more authentically. So where you're not ending up, like, for example, in chronic burnout, giving yourself that space to process and basically building life that includes spaces where you're not needing to mask all the time or be hypervigilant, things like that can be like really important. Yeah, yeah. Oh, do you know, it's a fascinating topic. It really is, isn't It's, you know, there's so much to it and it's so complex and it sounds like it's not that well understood by medical professionals that actually, you know, people do need to talk about it. They do need to, and I know you're a big advocate for PMDD, but people do need to talk about it and need to
Promoting Awareness and Resources
00:22:51
Speaker
be aware of it. And hopefully, know, this podcast will might set some light bulbs
00:22:56
Speaker
going off in people's minds thinking, oh well, that's why I really struggle for that, but you know, that those, and that week or those few days in in in the month. and But, oh, do you know, Kirsty, it's been absolutely fascinating. Thank you. Thank you so much. that's it You know, we sort of run out of time for this first part of the podcast, but you' you've offered some really insightful and thoughts and been really, really informative. And hopefully it will really help and some people understand you know why they feel a certain way and that they do and if you'd like to hear more and we do actually have a deeper dive podcast and with Kirsty which and is available via our subscription and and if and you want to find out more about this then please have a look at our websites and so and you know
00:23:48
Speaker
We do thank and our subscribers and to um our Learning Hub and who make it possible for us to create and free podcasts for everybody. and And as a thank you, they get all the access to all our recordings and our self-guided training on our Training Hub. So thank you very much to our subscribers for your generosity.
00:24:09
Speaker
If you'd like to become a subscriber, there's also a link in our show notes. um So all that's left for me to say is thank you again, Kirsty, for joining us today and to all our listeners. I've really enjoyed it and I'm sure our listeners would get an awful lot from it. So we hope you've enjoyed this episode and and if you found it for helpful then please um don't forget to subscribe and share and for more supports, resources and information visit the PDA Society's website at www.pdasociety.org.uk
00:24:41
Speaker
and I look forward to seeing you next time. Thank you. So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub. Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free.
00:24:59
Speaker
As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity. If you'd like to become a subscriber, there's a link in our show notes.