Did you know that endometriosis affects as many as 1 in 10 people? But this stigma-wrapped condition is still often misdiagnosed, dismissed and undiscussed. 

After a long, painful journey to diagnosis, Lux Perry decided to do something about it and launched Somedays, a globally recognized organisation, renowned for their innovative approach to raising awareness about menstrual-related conditions such as endometriosis and PCOS, and the gender pain gap. Their signature product, the Period Pain Simulator has gained worldwide attention and has been viewed more than 3 billion times online, while their line of natural pain relief products has helped hundreds of thousands of people have more manageable periods. 

From pitching on Dragons Den to going viral with videos of their period pain simulator that prove period pain is not something to be dismissed, Somedays is pushing the conversation forward about this common condition and I was thrilled to sit down (over a Google Meet) to chat with founder, Lux Perry, about just how Somedays came to amass their 100,000+ strong community, the fascinating neurology behind chronic pain, and how they’re tackling endo in the workplace. 

What prompted you to start Somedays? 

The easy and obvious answer is that I had really bad endometriosis, and pelvic pain, and I struggled for years to get a diagnosis. I didn’t actually get formally diagnosed until a month after we had launched Somedays when I had my first surgery. 

I always suspected that I had endometriosis because my mum has it, but without surgery, I didn’t have that confirmation and I just felt so alone in that experience. It felt like there was no option for me, that doctors were not listening, or were not supportive.

I was tired of being suggested birth control as the main option for pain management - it is a great option for some people but not for everyone, and not for me. I was exhausted with that being the only thing any doctor ever suggested, and wanted to create a space where people could connect with other people who had pelvic pain or endometriosis to share resources and build awareness.

Why do you think it has been something that historically we don’t talk about, or isn’t recognised despite being so prevalent? 

Well, I do think it's changing. Now when I talk to people about it they will say  ‘Oh, I know someone with endometriosis’ whereas before people didn’t even know what it was. 

I think the reason we don’t talk about it is pretty simple–there's a lot of stigma around menstruation in general. We have seen that change a lot in the last 10-15 years, but here the stigma is further exacerbated by and tied to other women’s issues like infertility and other underdiagnosed conditions such as PCOS and how that affects our job performance and general quality of life. 

I think it links with women in the workplace. We are in a constant battle to prove ourselves, we don’t want to share our vulnerabilities with our bosses or co-workers, which can lead to internalisation. 

That means the only time we ever really hear about period pain is from people we are close to and not in this more public setting, especially not in this place where the stakes are high, which is the workplace or at school. 

Even when you do speak up in these situations, it's common that people don’t believe you, or invalidate your experience. Eventually, you don’t want to share if you’re constantly met with, ‘Oh, cramps aren’t that bad’ or ‘I don’t get any cramps’, there's a constant dismissal. So people try to avoid that by keeping it to themselves and end up suffering in silence.

I saw your amazing AI diagnosis tool on your website! Can you tell me a bit more about it? 

Yes! It’s very cool. Essentially, Somedays is a big community of folks interested in better understanding their reproductive health. The problem with women’s health, in general, is that there are all these incredible tech developers, scientists, and researchers doing this amazing work, but they aren’t able to connect what they’ve built with people who are struggling and need their services. This is for several reasons – maybe the news doesn’t care about those things, or the people in those fields do not have a public relations focus. This AI tool is a partnership between Somedays and a tech company that developed this incredible assessment tool that is data-backed, and tells people whether they are at high, medium or low risk of having endometriosis. 

We offer it to our community so they can access this kind of tool, and bring those advances that are happening behind closed doors into the foreground for people who need it. 

We have such a big community, over 100,000 people with endo or suspected endo, so it's an incredible way to really get the word out about these innovative tools that do exist to help people. 

That’s so amazing! From what I have heard it’s such an undiagnosed, or misdiagnosed condition, that I imagine a tool like this is so valuable. 

Yes! One in ten people have endometriosis, it’s incredibly common, more than heart disease - which is something we see advertised and publicised all the time. 

We are seeing that as the awareness increases, most people know at least one person who has endometriosis. 

This tool can be so validating when you’ve been told by a doctor so many times that it's probably nothing, it’s nice to have this tool saying ‘No, your symptoms do point to this condition.’ We get so many emails saying that after this validation people felt empowered to go to their doctors about it. That’s such a win in our books. 

I find the tone that you guys use when talking about these topics, (periods and pain symptoms) refreshing. So often we’re bombarded with like ‘it’s just a period, power through’, ‘use this tampon and you can go and do sports’ kind of messaging, but sometimes it is painful, sometimes we want to take it easy, did you set out trying to challenge that?

Personally, I hate when a doctor tells me to ‘go and try some exercise’ or whatever it is that people are trying to tell you about continuing on with your life regardless. I think the goal is to live comfortably and do whatever we want, but the reality is that some days you just can’t. Some days are better than others, and some days you need to rest. We lean into the idea, that as people with uteruses, we have a fluctuating level of productivity and we should listen to our bodies. You are the expert on your own body, and you need to trust yourself. 

Giving tools and resources to help people trust themselves and advocate for themselves is really core for us. Many people with chronic illnesses are extremely well informed about their conditions, not to mention they live with them, but sometimes they’ll be told a few generic lines in a doctor's office. 

So sometimes the burden is on us to be the expert in the room. 

This applies to all kinds of women's health, misdiagnosis and missed diagnosis, can have tangible impacts on women’s lives. There are stories of women dying from ovarian cyst ruptures when they were told it was just cramps. it's a serious topic and unfortunate that it’s such a frequent experience for so many. 

It really is, but that's where brands, or communities,  like Somedays are so valuable. And moving onto the actual products that you guys stock, can you tell me a bit about them?

Essentially what we do is infuse pain-relieving ingredients into everyday products. Because many people with chronic pain have central nervous system sensitisation, which is a complicated way to say it, but chronic pain is different from acute pain that happens once, our brains are wired to perceive sensations in our body differently. 

We perceive pain sometimes because our neural pathways are so worn from experiencing pain - I’ll give an analogy; when you’re walking in a field, if you see a slightly downtrodden path where someone has walked before, you’re going to follow it, and you’ll tread it down a bit more, then the person after you will do the same, and soon everyone is using the same path. 

It’s similar - if you experience a lot of pain, eventually you develop this really strong connection between brain and body and sensations follow that pain pathway, meaning we experience even more pain because our body is interpreting everything as pain. So we want to deconstruct that. 

Regular pain relief doesn’t do that, you have to incorporate those kinds of ‘feel-good’ practices to change patterns and rewire your brain. If every time you experience pain you take a pill, you’re kind of reinforcing or linking medications with pain. But creating positive experiences that also include pain relieving ingredients you’re kind of creating a new routine, a new connection and addressing pain on multiple levels, neurologically not just pain relief. 

We have a cramp cream which is our best seller, it smells amazing and goes on like a moisturiser on your abdomen or anywhere else externally you experience pain. We also offer bath oils and a pelvis-shaped heat pad that’s flexible for a comfortable fit and is safer than a hot water bottle.. Every product takes into account all the different senses to activate different parts of the brain. 

The neurological side of pain is so fascinating and so powerful, but the research into it is really new. It’s been happening in the last few years so we’re really focusing on it. But chronic pain is classed as anything that lasts over 3 months, and most people with endometriosis have had it for 10-30 years. But none of the research from recent years has mentioned pelvic pain! 

Love it, that is so fascinating. I've never heard about the neurological side of pain before! I agree, a hot water bottle can be very lumpy and uncomfortable. Aside from products, I know you share so many resources with the Somedays community. Have you taken away any particular nuggets from the community that you’d want to share with someone suffering from endo? 

Well, I have a hack actually! 

The most information I ever gained about my body was when I was going through fertility treatments. It depends where you are, but here in Canada fertility assessments are free and will tell you more about your hormones than any doctor ever would. They do a deep dive into your reproductive health. 

It’s sad that they only offer this help when they’re trying to help women conceive, but it is a bit of a workaround in a system that won’t listen to you. 

It was very illuminating for me, so I always recommend people explore that route if they are willing! 

I’d also be remiss to not recommend our newsletter, as we share so many resources there. We cover tips to help you walk into your next doctor's appointment empowered, any emerging news or women’s health research, and maybe most importantly, we consolidate it as it can be tricky to keep up with the most up-to-date info on endometriosis and pelvic pain research because it is changing all the time. 

Other than that, I want people to know there is light at the end of the tunnel.

We talk a lot about the ways that the medical system has failed us, but entrepreneurs are coming to our rescue. So many doctors and researchers are doing incredible work alongside innovators and businesses with offerings that will be on the market in the next few years around diagnostics, treatments… There is a lot of momentum and it isn’t as much of a lost cause as it may feel.

Our 100,000+ community is proof of it! It’s so helpful to know that other people are experiencing this and that you aren’t crazy. It’s probably the most rewarding part of this and isn’t something I anticipated. When we launched the only person I knew who also had endo was my mum, and I felt so alone in my journey, so when we launched we had no idea how many people would be connecting with us and each other. 

One more question - what's next? 

We are in the middle of launching a workplace champions programme. Which is essentially us coming into the workplace, and doing training for managers and executives about best practices and policies to support people with endometriosis and pelvic pain in the workplace. 

Hopefully, this will expand into schools too. The idea is that if we broach the conversation and open up those channels for people then they can access some support in their everyday life. 

One in six people with endometriosis leave the workplace, which is really high. And it isn’t necessary. I have endo and left the workplace, but now that I have my own business where I can adjust my schedule as necessary, I am still able to get everything done, it’s just about making reasonable adjustments. It’s simple but it’s hard for employees to broach the topic, which is why we are there to remove the stigma. 

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Daisy Riley is a Fashion and Culture writer and researcher based in London. Working across journalism, brand strategy and content creation she writes to explore the possibilities and meanings hidden in what we wear, and how we can change the industry for the better.