There are as many unique menstrual experiences as there are people who bleed. Everyone who bleeds experiences their own states of emotional flux throughout their cycle, differing flows and varying lengths of bleeding. Adding onto this are varying energy levels and countless physical factors both seen and unseen known as PMS — premenstrual syndrome. The stigma and many stereotypes that surround the word are age-old and have pushed us to trivialise the pain and soldier through it, trying as best as possible to hide its visible effects on us in order to avoid the dreaded “Oh you are PMS-ing!” comments. People who bleed can also experience a more severe form of PMS called PMDD and PME, which are known as “Core Premenstrual Disorders”. Due to the severity of these symptoms, a special type of care and consideration is required to aid these individuals.
Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) are difficult to distinguish from each other; so let’s quickly break it down:
PMDD: Premenstrual dysphoric disorder is a much more severe form of premenstrual syndrome (PMS). It's a severe and chronic medical condition that needs attention and treatment. Lifestyle changes and sometimes medicines can help manage the symptoms.
PME: Premenstrual Exacerbation refers to the premenstrual exacerbation/worsening of the symptoms of another disorder, such as major depressive disorder or generalized anxiety disorder.
Couple this with the experience of living beyond the binary — trans, genderfluid and gender non-conforming individuals who struggle with their cycles. PMS compounded with dysphoria takes these pains to a new level.
We had the opportunity to speak to some wonderful queer individuals form the community who shared some of their experiences with us.
Bibi (They/Them) is a non-binary agent, model, commercial lawyer as well as an LGBTQIA+ advocate and mentor. They recently discovered they have PMDD and agreed to share their story with us.
“It's a recent thing, I was becoming very suicidal before periods. I would only have 1 good week of the month and the rest of the weeks would experience severe PMS symptoms and a week filled with depression. So I realised this isn't normal,” they said.
Bibi is not alone. One study showed that people with PMDD are 70% more likely to experience suicidal ideation than individuals without a premenstrual condition. It is crucial for people struggling with this condition to reach out for support if they experience suicidal impulses.
The best way to manage the symptoms is by learning more about it and realising that this is an actual condition. In Bibi’s case, they felt a huge wave of relief after coming across a post about PMDD online that affirmed the severity of what they’d been experiencing. “I looked at the symptoms and they described these violent mood swings, pain and irritability — I was ruining my relationships. People would say, ‘Oh you are just PMSing.’ But they couldn't truly understand how out of control I felt. I tried so many things to feel better but no one knows about this, no one sees the symptoms, and it makes you feel incredibly isolated and alone which only adds to the symptoms.”It was this realization that pushed them to seek help. But as is often the case, Bibi's PMD was minimised and not taken seriously.
“These doctors clearly did not understand or did not want to try to understand what I was going through. It is incredibly damaging as you start gaslighting and doubting yourself. You think, ‘Oh it's just PMS, and I have a severe case of it and I can’t cope with it.’”Bibi had to go through invasive scans, tests and emotionally draining questioning as doctors tried to diagnose them. Ultimately Bibi was left with more frustration than answers. The doctors claimed that PMDD “does not exist” and that Bibi was misled.
PMDD statistics indicate that 6 million, or 1 in 20 menstruators worldwide, struggle with this condition. The number is estimated to be even higher, but many people do not come forward as they are shamed into hiding their pain or ridiculed.
Bibi decided to take matters into their own hands by taking a self-diagnosis test, which ultimately confirmed their diagnosis. According to the DSM, if you identify with five or more of the following symptoms you could be experiencing PMDD:
- Feeling sad/Hopeless/Self Deprecating
- Tense/Anxious on edge
- Marked liability
- Marked tearfulness
- Increased inner conflicts and irritability
- Decreased interest on activities
- Difficulty concentrating
- Marked changes in appetite
- Subjective of feeling overwhelmed and out of control
- Breast tenderness/ bloating
If you’ve experienced five or more of these symptoms over the course of multiple months you should seek further advice from your GP.
Bibi has recommended the following tips if you’re struggling with any premenstrual disorder:
- Get proactive and track your cycles and moods
- Keep a journal with all your symptoms and fluctuations
- Once you are aware of your cycles, inform the people in your life. Tell your friends and family and allow them to help you through this. With your guidance they can become a great support system.
- Isolation is not the answer! DO NOT stay alone. This will only make you feel even more isolated and worsen your suicidal symptoms.
- Find a support group, have these people on speed dial to help you get through especially rough patches.
Periods can be traumatic in other ways for non-binary bleeders. Trans individuals suffer greatly as their cycle is a recurring reminder and trigger of their trauma and dysphoria. Freddie Lewis (he/him) has shared his experiences with us, speaking about how they dealt with their cycles during their transition and their new outlook on the period community and bodies that bleed.
“Pre-transition It was always traumatic. At the time I would often experience vomiting on my period. I had always thought it was because I got really intense cramps, but I think partially it was my anxiety-based dysphoria coupled with my iron deficiency. I would faint and be in constant physical and emotional pain and distress,” they said.Before Freddie came out he had resigned himself to his fate. “I almost justified the experience in my head because I hadn't accepted myself and all of that. I would be like, ‘I'm supposed to do this because it's assigned at birth.’”
Freddie shared that since transitioning, period shame has re-entered his life, seeing products for women packaged in pink with heavily “women-oriented” messaging which feel as though “they don’t seem like they’re for me.” Add another layer of discomfort and fear when using “men’s” bathrooms and having to hide or proceed with caution when being on his cycle — from hiding the actual pad, to being quiet when putting it on, to searching for a place to dispose of the used one, all the while hoping no one notices. “Men’s bathrooms don’t have sanitary bins, so I would always carry around a sandwich bag to put my sanitary products in after using them, which I would have to keep in my bag.” This is just a small example of the struggle he faces as a trans man on his cycle.
In terms of immediate help to trans individuals, Freddie outlined how small changes like adding privacy bins to men’s bathrooms and making sanitary products a less gendered experience would really help with stigma, shame and anxiety surrounding periods. These small steps can alleviate (in part) some of the trauma associated with it.
Only recently has Freddie been able to open up to his cis male friends and those closest to him about his struggles. The process could be likened to coming out all over again. Due to a lack of diverse and inclusive sexual health education, it has become the burden of LGBTQIA+ individuals to not only struggle with their own exploratory journey, but also have to explain and educate those around them. In this case, cis men as well as the broader community aren’t educated around the needs of all people who bleed, and as a result they don’t see how their actions or words could be contributing to the shame culture surrounding it. This isn’t new, but it certainly still needs addressing. By removing gender from menstrual products, signs and bathrooms, you open up the conversation and normalise the idea that — regardless of the individual — everyone should have access to these products without any overlying sense of shame or stigma. By promoting the idea that only women have periods, you’re actually creating further ostracism for those who bleed.
Period empowerment should not be gendered and the community shouldn’t be gated. Open up the doors and leave room for even more inclusivity, pride and compassion. This is how we can ensure the monthly pain isn’t something anybody has to experience alone. You should never feel unloved, unseen or alone in your experience. Understand your flow, understand your emotional fluctuations and get proactive (we know it’s not easy), but it is completely necessary. Propagation and advocacy for more thorough and inclusive sexual health education is imperative in order to have a better understanding of our own bodies and those of others. With this understanding comes respect and compassion. Once you are able to know your body, you can then anticipate your needs and take action to give yourself what you need to thrive.
We’ve heard multiple accounts about people not feeling comfortable or understood when seeking medical care, which is why at Lvndrhealth we’ve created a judgment-free space where you are able to take back control of your sexual health. Rather than assuming your needs, we go straight to the source to find out more. We believe information is key and the more conversations we open up, the more space we can take up. Join our community by signing up to the waitlist or drop us a DM. We’re here to listen and shape an offering worthy of our community.
Written by Araxie Boyadjian, co-founder of Lvndrhealth App, a mobile-first digital clinic designed for LGBTQIA+ individuals that is redesigning sexual and reproductive healthcare services. Lvndrhealth empowers you to take back control of your health with tailored monitoring tools and sexual health resources.
Image credit: Lvndrhealth