ADHD, Periods and.. UGH
Periods suck. The negative parts of ADHD suck. When you add those together what do you get? Even bigger suck.
Firstly, this blog today is based on a YouTube video I put out. If you would prefer to watch instead of read, you can find the video here:
in order to be a great coach, I need to be able to service the whole person in front of me and for the people I coach who were assigned female at birth, periods can be relevant. Because when we have ADHD, we really struggle to compartmentalise (Hogstedt 2022) and so if our periods are affecting our ADHD symptoms, this can be having all sorts of knock on effects to how we function in the workplace.
And of course I’m also just really passionate about ADHD education and the more we understand about ourselves, the better equipped we are to deal with some of the challenges of moving through this world as a person with ADHD. So with that in mind I’ve been diving into the latest research on this topic to better inform myself and my viewers on how our monthly cycle affects our ADHD.
Now the research in this topic is very new and last week we examined one of the only theoretical papers in existence so far on this topic and you can go back and read that post to get an understanding of the theory behind ADHD and periods and how they affect us. But today I’m taking a slightly different approach and looking at a paper that tackles this from a different direction.
The paper “Perceived associations between the menstrual cycle and Attention Deficit Hyperactivity Disorder (ADHD): A qualitative interview study exploring lived experiences” is to both my knowledge and the authors’ knowledge the only study that exists examining the lived experiences of people who have ADHD and also menstruate and so is the first foray into formalising this topic that has had much discussion online.
In this case, the paper interviews ten participants online using a semi-structured interview format with open-ended questions to explore the participants’ experience. The participants were found using Reddit and Instagram and were recruited between August and October 2022. The median age of the group was 27 and the median age of ADHD diagnosis was 25.5 which means that most were adult diagnosed.
All participants were on stimulant medication and so unlike last week this gives us a bit of an opportunity to explore how stimulant medication interacts with the menstrual cycle. They also were a mixture of women and non-binary which is great because much of the research done thus far has been exclusively carried out on women and neglected people of other genders who also menstruate. As a result, we can generalise these results beyond just women and start to explore how they may impact people of other genders as well.
Often these studies try and exclude people explicitly diagnosed with ADHD to try and avoid medication interfering with the results so it’s useful to see a paper discussing medication as part of the study as well.
Before we go into the results, now is probably a good time to refresh some of the terminology used around the menstrual cycle and periods. The last video was quite heavy on the more medicalised lingo so I wanted to break this video down into more accessible language that more closely matches how we think about our periods.
So our monthly menstrual cycle starts on the first day of our period at which point our womb sheds its lining and we start to bleed. This is also day one of what is called the “follicular phase”, which is the time between the first day of our period and ovulation, when an egg is released. During this time, our progesterone hormone remains low and our estradiol hormone, a form of estrogen, rises gradually until just before ovulation where it spikes upwards.
The day after ovulation we move into the second half of the cycle which is called the luteal phase. In this time, both progesterone and estradiol gradually rise before peaking in the mid-luteal phase. If an egg has not been fertilised then these hormones both rapidly drop and we begin our next period.
So with an understanding of the basic biology, let’s move onto the experience of the participants, which the study splits into three topics: changes of ADHD throughout the menstrual cycle, experiences with healthcare providers and menstrual health management. Starting with changes throughout the menstrual cycle.
Now last week we spoke about the theory here which suggests that there are three stages: The first being increased hypersensitivity, emotional and sensory, during the luteal phase, followed by decreased cognitive function and increased depression around the period and increased reward-seeking behaviour around ovulation.
The results of the lived experience broadly line up with greater severity of ADHD symptoms noticed around the mid luteal phase and during the period itself, covering the first two of the points in the theory.
Nothing shows emotional dysregulation like early 2000s emo makeup.
The participants found that these negative changes really impacted their quality of life, their personal relationships, goals and careers and mental health and well-being which sounds to me like it basically led to having a tough time in all aspects of life and goes to show how wide reaching and impactful the effects of the menstrual cycle were.
The exact symptoms that became worse were executive function, especially task switching and task initiation, emotional dysregulation with the lovely emotions of irritability, sadness, anxiety, agitation, sensitivity and hopelessness, and attention dysregulation which covers things like staying focused and forgetfulness.
I wanted to share the quotes that the paper provides because I think they might resonate with some of you. Here are a couple:
“It's kind of like a regression and I also procrastinate basic self-care things that aren't very hard to do, like taking a shower.“ Participant P10.
“I'm upset over things that aren't in congruence with like my values. So, like, I get upset over things that I don't actually care about, but like it feels very closely related to just like an inability to regulate myself, you know.” Participant P08.
The point about feeling like a regression is particularly pertinent and was described as feeling like a setback on their journeys to better managing their ADHD. All participants were medicated and some were also participating in therapy which suggests they were engaged in their personal ADHD management so I can totally empathise with the frustration of feeling like your progress is regularly being reset.
Some participants would try to restructure their life around this cycle, making sure the difficult time periods were less busy. This is something I’ve considered trying but I find incredibly difficult to do. As a side note, I wonder whether my likely autism and its love for routines is blocking me here and I find myself thinking that I would love some research that looks at the common intersection between ADHD and autism in the context of this topic as well.
I’d also like to acknowledge here that the participants spotted these symptom fluctuations and made the connection to their monthly cycles themselves and actually that was a learning I discovered on my own as well. I wasn’t educated on this topic at the time I got my diagnosis and we’ll talk a little later about it, but most of us aren’t.
It’s almost cruel that the way we’re most likely to make the connection is by consistently tracking our symptoms and noticing the periodicity, something ADHD makes very unlikely that we’d manage to pull off.
The participants also were able to notice how their medication interacted with this as well, something that was missing from the conversation around the theory last week. The paper stated that the participants generally found that starting medication had a “profound positive impact on their life” but that the effectiveness of the medication fluctuated according to the cycle.
While they said overall the medication was still working, they noted that the effectiveness during the mid luteal phase was minimal. They also weren’t sure what to do to make things better despite not being happy with this and wanted more information related to the medication and their experiences with it.
This gap in education is clear in the paper’s discussion on interaction with healthcare providers in which, as I alluded to earlier, most participants received no information about ADHD and periods when they were diagnosed and were made to feel they couldn’t ask questions about it.
In fact they felt worried that if they brought up their perceived link with their menstrual symptoms then they would be invalidated and the paper compares this to the struggle for those with endometriosis to be taken seriously with regards to their symptoms, suggesting that these worries are not unfounded. In fact the participants found doctors to be generally unhelpful or dismissive.
The quotes that the paper pulls out here are around doctors telling people to try harder which is the typical ADHD shaming and reflects a lack of enough knowledge about ADHD that led to many feeling unsupported. There was one exception who was told about the ADHD and menstrual cycle link during their diagnosis though which does fill me with hope for things improving.
The last topic of the paper surrounded menstrual health management, which is something I’ve not spent time thinking much about but raises a very valid point, and that’s that many of the challenges of ADHD with regards to planning, organising and remembering make menstrual health management harder.
Even just remembering to have pads or other period devices on hand for when the period starts can be a challenge due to the struggles of ADHD.
This leads to people not knowing when their next period would start and having to use a period tracker in order to not lose track and be caught out when their period did start. They also give the example of a person who forgot their period cup was accidentally left in at the end of the period when there wasn’t much blood and therefore got a yeast infection as a result.
As you can imagine, these led to feelings of shame. We all know how embarrassing it is to be caught unaware by your period, to stain your clothes by accident. Especially as adults, this seems like something we should have long grown out of since the years of teenage periods and I can totally understand how this leads to unhelpful feelings of shame.
The next thing the paper said really resonated with me because I talk about this all the time as a fundamental part of the ADHD experience: the participants spent so much time and mental energy compensating for these challenges. Constantly thoughts spinning in the back of your mind, reminding you to check and make sure you’re not bleeding and the anxiety and pressure that comes with it is exhausting and takes up so much of our brain space. From my experience, worrying about being not good enough is something that us ADHDers expend a lot of time and energy on.
So there you have it. Two posts on periods and ADHD looking at the topic from two very different angles. But the conclusion of both is the same; namely that our menstrual cycle does affect our ADHD symptoms and this is a challenge that we struggle with much more than either neurotypicals or people assigned male at birth.
The open question is where do we go from here? It’s a difficult topic to talk about due to the stigma attached to it. ADHD itself is still stigmatised in most of society and periods are often still a taboo topic so it can be hard for us to talk about due to the fear of negative consequences resulting from this stigma.
At the same time, it’s important for us to be informed, and I know that for me personally it makes me feel a lot better to realise when my negative symptoms are worse because of the phase of my menstrual cycle I’m in, and that the self-compassion I have due to that knowledge is incredibly important to my wellbeing.
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If this resonates with you and feel you would be interested in talking to an adhd and autism-friendly coach, feel free to get in touch. If you’re looking for more blog posts, you can find them here.
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