February 6, 2023
By Period Dignity Team
Endometriosis is a common menstrual health condition, where cells similar to those in the lining of the womb are found elsewhere in the body. These cells react to the menstrual cycle and bleed but with nowhere to go, this causes inflammation, pain and scarring. The long list of symptoms can make everyday life a challenge, yet it currently takes an average of 7 years to diagnose, leaving many to suffer in silence. In recent years, people living with the condition have been taking to social media to raise awareness. We spoke to @endo.period.etc to hear about their experience.
Could you tell me about your relationship with your period and how that’s been over the years?
It’s been an interesting one! I started my period at the age of 11. I now know that I’ve been symptomatic of endometriosis since the age of around 9 and that makes sense, because that’s when my body was preparing for menstruation. As a teenager, all I remember was being quite miserable with heavy, painful periods a week long that just made me feel unwell. At the age of 16, I went to my GP, who told me that all of the other symptoms like bowel and bladder issues, nausea, etc. were related to anxiety. They put me on a prescription of the contraceptive pill…and not much really changed with the periods which were still very, very heavy and painful. I guess the only thing that the pill did help with was the regularity of them. Then, in my 30s, all the symptoms that I had had became quite magnified, I’d have periods lasting up to 70 days at a time. Around two years ago, it all became a bit much and I went to my GP who told me that it could be endometriosis. That was the first time I’d even heard of it, I was like “endo what?”!
That’s pretty shocking considering that it affects 1 in 10.
Yeah, it is! It’s as common as diabetes. If you know 10 people who menstruate, the likelihood is one of them is going to have endometriosis and probably more, because there’s such an issue with diagnosis that a lot of the time it goes undiagnosed.
What are your main endometriosis symptoms and how do you manage them?
Where do I begin? Since I’ve found out that I have endometriosis, I’m trying to do a lot of symptom tracking and it’s really difficult. I’m just going to list some of the symptoms and then I guess it gives a bit of a flavour of how difficult it is to track. So let’s start with pain; There’s abdominal pain, there’s pelvic pain, bladder pain, bowel pain, leg pain, back pain, vaginal pain, chest pain. Then there’s things like breathlessness, coughs, sinus issues, bowel and bladder urgency, thrush, constipation, and if it’s not constipation, it’s diarrhoea! There’s night sweats, nausea, endo-belly which is this awful bloat of a belly. And it’s all combined with erratic cycles and heavy blood flow. Management, I find a full time job in itself… it’s really overwhelming. There’s medication, there’s comfort items, support items, plus the whole toll I think it has on mental health as well and looking after that. Each day is different and I try the best that I can. I think being kind to myself is really important, because it’s just hard work.
It affects so many things, it’s not just a heavy period.
I think sometimes people forget that it’s an all over body disease. Endometriosis has been found in every organ of the body. I think people don’t realise that it’s not just a period thing. Part of the embarrassment of not telling people was that because it’s a period thing I should be fine with it. And actually every person who menstruates has a story to tell, so why is it such a taboo?
Was it the taboo that kept you from sharing about it or going back to the doctors?
Yeah. I think I’ve got an up and down and mostly down journey with medical professionals. My symptoms started at age 9, and I was diagnosed at 36 so it’s a long time to be misdiagnosed and gaslit. I remember questioning myself, even after the GP identified it was endometriosis. You should be able to trust medical professionals, I shouldn’t have to do all of this research on my own by myself to understand and figure out what on earth is going on with me. There really needs to be more awareness.
Could you tell me a bit about why you decided to start the Instagram account? And what’s it been like sharing your story online?
I didn’t tell anybody about my symptoms for a long time and after these experiences with what are supposed to be medical experts, I came away being discharged from hospital with all the symptoms, and thinking “what’s going on?”. I started doing some searches and I found some really great Instagram accounts about endometriosis. I was learning lots from other people’s experience, so I started my own account to connect with these people, but also just spread the information and awareness that I came across. For me, it was solace, and comfort and support within this online community. I’ve come across so many people that are now really good friends who are going through very similar experiences. I then started sharing my own story… because I thought, I’ve been suffering in silence for so long. If I could just impact one person by sharing my experience for me, it’s worthwhile. Obviously, I’m not a medical professional, but I think lived experience is so important.
What’s one thing you wish people knew about endometriosis?
It’s chronic, and there’s no cure, which means it’s an everyday struggle of varying magnitudes.
What challenges have you faced dealing with endometriosis in the workplace?
I think the biggest challenge goes back to the lack of knowledge about the condition. I’ve taken on this responsibility to continually educate others. I’m really lucky, we’ve got an amazing set of colleagues who will listen and empathise. But sometimes it’s exhausting basically having to explain your existence. You know, “why have they got a walking stick today” or “why have you got to pop to the loo every 10 minutes during the meeting”. I think there’s a fine line between putting context around things and oversharing, I’m not sure I know where that line is sometimes! I love this mantra that somebody else mentioned on social media once that, “if you think it’s uncomfortable listening to this, imagine how uncomfortable I feel, because I’m experiencing it”. My previous role became really, really difficult with endometriosis because there was a lot of networking, going out, meetings and travelling, etc. and it was just becoming far more difficult for me to work and be effective.
What sort of things do you think employers could do to support people with periods, especially those who have menstrual health conditions like endometriosis?
I think the biggest thing to do is to listen to your colleagues and understand them. And I think educate yourself. But remember that when you’re educating yourself, each person’s journey is different. Endometriosis is such a strange thing, it can be categorised into different stages. But stage one could have far more severe symptoms than stage four. So take time to listen and do it without any prejudice or judgement, build that environment of psychological safety for the colleague… and once you build that, work out how you can support them and work on it together.
I hear that you’re currently trialing Grace & Green products with some colleagues in your workplace. What’s the feedback been so far?
They’ve been really well received! From my personal experience, they’re super comfortable. Most importantly, they’re practical, they do their job. I love the ethos behind Grace & Green, the sustainability message is really important. There’s a lot in terms of the community and that matches up really well with the values in our workplace.
Heavy, painful periods are not normal and may be a sign of an underlying condition such as endometriosis. If you notice any changes to your cycle or are struggling with any symptoms, please contact your GP for advice. Support and information can be found at Endometriosis UK. To learn more about making your workplace more inclusive for people with periods, check out our Period Dignity workplace initiative.