A WEEK IN THE LIFE: LIVING WITH ENDOMETRIOSIS

WORDS MAISIE JANE DANIELS

Endometriosis affects 1 in 10 cis women globally, yet in the UK just 2% of public research funding is allocated to reproductive health overall. Female-dominant conditions - including endometriosis - continue to be underfunded, under-researched, and deprioritised relative to their true impact.

In the UK, it can take nearly nine years to receive an endometriosis diagnosis - a delay that reflects a wider systemic failure to listen, believe, and act. For Endometriosis Awareness Month, F Word is spotlighting what this reality looks like in practice. Through a week in the life of Florence Grellier, a London-based freelancer living with endometriosis, we get an unfiltered glimpse into the physical, mental, and emotional toll of the condition. Alongside her visual diary, Flo shares candid reflections and practical insight into navigating endo - whether you’re living with it yourself or supporting someone who is - and the strategies she relies on to get through each day.

Maisie Daniels: Can you walk us through a typical day or week living with endometriosis?

Florence Grellier: It really varies - on a good day I can do what I had planned. There is always a constant dull pain, but it’s ignorable. The symptoms are so full-body - on a bad day it can be one, a few or all affected: brain fog, anxiety, nausea, sleeplessness, bloating, diarrhoea, not to mention the extreme pain (these are my personal symptoms, but I’ve heard of people who suffer in other ways too).

Currently, I’m experiencing a pretty consistent lack of sleep, so from the start of the day I’m already really offset. Then it’s just seeing what other disruption the endo demon wants to present me with that day.

MD: Are there moments when your symptoms affect your ability to do everyday things (work, social life, hobbies)?

FG: Yes, absolutely. Before I got diagnosed I felt like I was this really crap friend, as I would consistently need to cancel plans or be late, etc. I felt like a really unreliable person and I didn’t really understand why I struggled so much with simple and enjoyable commitments that most people have no problem fulfilling. I had put it down to faults in my personality, or alternatively would push through the pain I was in and feel absolutely exhausted afterwards.

In regards to work - I am freelance, which has various perks, but equally I don’t have any of the privileges such as paid sick days, contracts that keep me in work, or HR protecting me. I’m lucky that a lot of the people I work with I also have a friendship with, and they understand the realities of my illness (now, but it has taken time to get here). On average I miss two days a month due to endo. If I were in a more financially stable place I would take more - I do have days that I probably should be in bed, but I can’t afford that financially. The ideal situation would obviously be to manage my symptoms, but in the meantime I’m working towards setting myself up to have fewer work commitments so I can be more flexible with my scheduling when I need to move things around - this is one of those freelance privileges.

I have come to learn that it’s best for me not to commit to more than two social events a week. If it gets to the week and I’m having a great week, I can be spontaneous, but if it’s a crappy week there’s less pressure and it’s more likely I can do the little things I have committed to - there are fewer people to cancel on if necessary.

MD: How does your energy fluctuate during the week?

FG: Again, it’s so varied. I’ve definitely noticed lately that I am completely wiped after a full eight-hour workday, so currently I’m just following my body’s lead and taking it really easy. Keeping records of my energy and symptoms really helps me register what is working for me at that time.

MD: Would you be comfortable sharing how your body feels on “bad days”? (e.g., bloating, cramps, fatigue)

FG: I get quite extreme back and leg pain. At its worst, this can make it really hard to walk, and no pain management that I’ve found so far helps with that. Most of the time, within minutes of eating, I experience bloating - this is known as “endo belly.” I’ve been mistaken for being pregnant more times than I can count, which doesn’t feel great in itself.

On some days I wake up and immediately throw up. I can’t eat, I’m so nauseous, and this is paired with a stabbing pain in my shoulder. I’m told this is likely a symptom of the endo being in my diaphragm. I also get such severe brain fog - it often feels like my brain is levitating a metre above my body and surrounded by a fuzzy cloud. It’s hard to focus on what people are saying, and my memory is really affected.

During my actual period I experience really large blood clots. Passing these is really painful. I haven’t given birth myself, but it feels like how I would imagine labour feels - my automatic body reaction is to work through some really heavy breathing techniques. I would describe the uterus pain as if there is a 50kg dumbbell inside me that is being chucked around and thudding against my inner walls. This is often accompanied by an internal stabbing pain that can completely stop me in my tracks while I wait for it to calm.

I tend to experience UTIs or UTI-like symptoms during and after a flare-up.

MD: What medications, treatments, or routines are part of managing endo for you?

FG: I’m currently taking Mounjaro. This is self-medicated — through lots of research I learned that, due to the type of PCOS I have, this type of GLP-1 combats insulin resistance and thus helps rebalance hormones. I’ve recently learned that a lot of people with endo are seeing positive changes after taking GLP-1s. It’s too early to understand the long-term effects of this, but currently it’s giving me the most hope.

I also try to remember to take a series of supplements and vitamins every day — vitamin D, berberine, inositol (with every meal), zinc and omega-3 for breakfast, probiotics with my lunch, turmeric, and magnesium before bed. I’ve definitely found that when I’m more consistent, my body feels better.

For pain, I have a dihydrocodeine prescription and naproxen, along with absolutely smothering my belly in red Tiger Balm (the clove oil in it is a natural numbing agent), as well as using hot water bottles and hot baths. The codeine is a last resort for me, as it’s really not great to take regularly. I don’t bother with paracetamol etc., since even the stronger medication barely scratches the surface of the pain. I want to limit the amount of chemicals I’m putting in my body.

I’ve tested out various homeopathy approaches, which weren’t for me, as well as acupuncture and different diets — it’s really hard not to get swallowed by the vast amount of opinions on the internet. I’m also on the waiting list for surgery, but I’m not holding my breath that that’s happening any time soon.

MD: Are there coping strategies (mental, physical, lifestyle) that help?

FG: Be kind to yourself - it can get very overwhelming. I did a bit of CBT therapy about three years ago, around when I first got diagnosed. Everything was feeling like a lot, and the combination of that, being dyslexic, and already struggling with organisation - let alone this bulldozer of a disease making everything harder - was a lot to navigate. I’ve really worked on not catastrophising: “it’s not the end of the world,” “you do you, boo” - that kind of thing.

I also try to avoid alcohol. It’s not a strict rule for me, as sometimes I just fancy a bit of fun, but flare-ups definitely happen more frequently with regular consumption of booze. And lately I’ve got back into the gym - I have my gym buddy, which really helps with motivation, and there’s nothing like a gossip while you lift weights!

MD: How does living with endometriosis affect your mental health or emotional wellbeing?

FG: When a flare-up is at its worst, I’m so mentally and physically exhausted. This can often lead me to a place of really high anxiety and depression. I have a really great support system of friends and family around me who understand what I’m going through and are amazing at checking in when things are tough. But before the diagnosis, and before I understood what was actually going on in my body, there were times when I was really low - the depression was really all-consuming. Leaving my bed, let alone my house, was quite impossible.

When I experience this now, I know that it will pass and I have the tools to cope with it. I also don’t feel guilty if there’s a day that I do have to stay in bed. I’m on the waiting list for another round of CBT for pain relief.

MD: Are there things you wish people understood about living with endo?

FG: I wish people understood that it’s so all-consuming. It’s widely understood as a gynaecological disease, but it really is a whole mind–body thing. It also isn’t always cyclical - yes, the symptoms tend to be worse during your period, but that isn’t always the case. Your friends with endo (yes, you do have them - 1 in 10 cis women suffer from endo) have probably become really good at masking it. They’ve most likely been gaslit by their doctors; they haven’t been listened to. Please hear them and believe them.

MD: What is the biggest misconception about endometriosis that you’d like to clear up?

FG: It’s period pain. Actually, for a long time I myself would refer to the pain as “period pains” - which are also absolutely horrible - but I’ve started to change my language around the pain, both for myself and others.

MD: If you could give advice or a message to someone newly diagnosed, what would it be?

FG: I would say to someone who’s early in their medical journey - write everything down, not just you symptoms; document how many days of work your missing, or social occasions, and how much your spending on pain relief etc.

Anything in your body that feels slightly unusual. Its definetly good to do your own research into pain relief, nutrition, supplements etc, but take everything you read on the internet with a pinch of salt. Unfortunately its a bit trial an error - something that may have worked for someone else might not work for you! Also a lot of the social media accounts/platforms for endorsements awareness are great for information but can be quite toxic spaces. I think because its so hard to be heard at the doctors people can be quite competitive online about their own pain.

MD: What do you wish healthcare could do to help improve life for someone with endometriosis?

FG: Listen to us, do more research, have more clear resources on nutrition and supplements - have some kind of nutritional resources that are clear and accessible. I’ve also have a lot of doctors, prior to my official diagnosis, tell me I just have to loose weight. I wish for the entire medical comity to be better educated on fat-phobia and the negative impacts it has on patients and their illnesses.