I’m twenty-six and I was diagnosed with endometriosis 2,882 days ago. It took multiple ‘specialists’, one surgery, one doctor reported to a medical board, three relationships, and what felt like four years of completely dissociating from my own womb.
Statistically speaking, that makes me ‘lucky’. According to Endometriosis UK, the average time for diagnosis is 7.5 years. The road was brutal, bloody and taught me, by sheer force, brilliant boundaries and unbreakable self-care practices.
It was long periods of crawling around the floor looking for painkillers in my knickers draw, not getting laid, and spending ludicrous amounts of money on medications, remedies, therapies, and specialists. It was missed days of work, missed dates, frequent F.O.M.O around things that really mattered to me, like my best mate’s birthday, sacred queer camping trips, or going to my favourite gig. And it was a handbag consistently equipped with three different levels of painkillers, essential oil, and (lets be honest) dark chocolate OR [insert your stress snack here].
If this is your experience too, I really don’t have to tell you, having what we might casually and not-so-lovingly refer to as ‘endo’ is, to be blunt, a fuckery.
You are probably sick of explaining, “It’s this thing where your uterus lining kinda grows on both sides and everything hurts and sometimes you just need to be a screaming slater in the dark with a heat pack as hot as you can physically take it… but yeah it’s fine, I will be FINE.” *smiles awkwardly*
If you love or know someone with endo. Your first piece of advice here is: believe us. And my second piece is: make a care plan with us.
Having partners and friends willing to support us, by saving us from lugging around our extensive first-aid kit with a sore back, make big decisions in severe pain or explain ourselves when we feel like we might pass out, quite literally helps us carry the weight of this invisible and, at times, debilitating thing.
You cannot take the pain away for us. But if you love us, you can learn to sit next to us through it. Hold our hand. Put on the kettle. Not ask questions that might devalue how defeated we may be feeling and remind us that you are proud of us for sitting in the unknown and holding on for that slither of light.
People with wombs that have endometriosis are generally pretty used to being dismissed, denied support, and can develop a constant fear of not knowing when the next flare up will happen.
So, think about re-wiring these expectations for us, by validating us, supporting us in ways that are practical, and genuinely think about access points and options for us to still be a part of things that are important to us. For example, if you’re planning something you know we would love to be a part of, can you ask where it falls in our cycle? Cycle mapping and planning is generally a huge survival tactic. Can you keep a heat pack at your house for us and show us where it is? Can you let us know of a quiet space we can rest if we have a flare up?
Think of us. See us. It’s what keeps us fighting.
While some risk factors that have been identified which can increase the chances of being diagnosed with endo like; periods from a young age, long heavy periods, short cycles, higher oestrogen levels, one or more diagnosed relatives or low BMI, to name a few. And yet, with the research into this condition being so underfunded and under-prioritised, we still don’t know what the fuck the causes endo.
That should make us all irreverent. Angry. Fuming. And if endo didn’t make me so damn tired, I’m sure I would protest more on the matter.
I could write volumes on my anger at the white-cis-male dominated medical industry and the lack of empathy and care we generally receive in anything womb-related. In this process, I even had to report a male gynaecologist who was disgustingly insistent on internally examining me without being able to give me a reason for this post-diagnosis.
Readers with endo, know it is okay to ask, ‘why?’
What is the purpose of examination A, B or Z? Is there another way? What are my other options?
You can say:
“No, I’m not open to that today.”
“No, I am in pain already.”
“No, I would like a second opinion.”
You are allowed. You have agency of your body – do not bypass that privilege to anyone else, no matter how much they insist. Especially when they do. Ask why.
In this process, I learned I had fight really fucking hard for myself, because it really didn’t feel like the system was going to do it for me.
My lessons will be different than yours. But I remember being nineteen and needing: Something. Anything. Someone.
Someone to offer some other suggestions that did not involve medical people putting their hands inside my body, inserting foreign implements inside my body, taking medicines that made me like a werewolf on a full moon or being cut open, again.
So I will try my best, to be that for you. Even if just one thing sticks, works, or eases you.
Track And Map
You might already be all over this one, but you need to be like a sexy detective. A Nancy Drew. Get a cute journal or app. At the end of each day, note your pain levels, mood, exercise, period cycle day, diet, sex, masturbation, bowel moves, booze or drug intake (medicinal and recreational).
Note any external factors, too: moving house, relationships beginning / ending / expanding, hayfever or allergies. Anything you feel is relevant. In doing this, you will start to understand your triggers, unique cycles and can begin to plan your life in a way that feels like you are regaining power and agency.
Find a way of moving gently that doesn’t fuck you up. For me it was gentle laps, yoga or bedroom dancing. Endo can make us feel really stagnant and technically is a kind of stagnant blood condition, so moving the body, slowly, helps – only on the days you can manage it.
Maintain and Sustain
It can be easy to go overboard when you have a few weeks without pain. And think ‘YES. I’ll live off tequila sunrises, exotic sex and watermelon for 10 days’. But in my experience, the downfall from this is often not worth it. We need a bit of extra TLC because our bodies are working overtime. So take that magnesium, stay on the multivitamins, eat the leafy greens and, duh, drink plenty of water. Basic bitch shit, but it makes a difference.
Diversify Your Therapies
Start growing yourself a team of people who can help you tackle endo from all angles. The effects on mental health are very real, so make sure that base is covered. As well as a GP you trust and then explore other therapies that support pain management. Alternative therapies that have supported me at different points in my journey are: kinesiology, mayan abdominal therapy or womb massage, Chinese medicine, osteopathy, physiotherapy, meditation, TRE, somatic experiencing, dance therapy, reiki and remedial massage.
Get A Chronic Pain Plan From Your GP
Similar to a mental health pain, chronic pain survivors can get a GP to help them a chronic pain support plan which can help subsidise some holistic appointments such as osteo and physio, and provide access to additional support at university or school.
Get A Strong Team Behind You
You’re a strong human for making it this far and you deserve people that give a shit about you. That means you get to be selective with professionals you access, and friends and lovers that have access to you. Also start the conversation with other friends who share your diagnosis and totally get it, too.
Mind maps or flow charts are really helpful for developing a game plan for pain flare up management. How you navigate this in a workplace will likely be different than with family, friends or partner(s). I’d recommend developing one care plan for personal life and one for professional, then sitting down with relevant folks to talk through it.
Maybe bring a fact sheet on endo to the chat too, so you don’t have to explain yourself over and over, because let’s be honest, that gets old. The more seriously you take your care and need for support in the hard times, the more seriously others will.
Breaking Pain Cycles
We can often fall into absolutes when suffering with chronic pain. Thinking, ‘I’m always in pain’, or, ‘I’m always forgotten about’, or, ‘I’m always missing out’. Don’t forget to cherish the little wins. Notice times when you are NOT in pain. When you are included, remembered, celebrated, thought of, supported and valued.
Hold these times fully and dearly, in your heart and in your womb.
Let everything happen to you: beauty and terror. Just keep going. No feeling is final. – Rainer Maria Rilke