An Inside Perspective: Endometriosis Through an Occupational Therapy Lens

Alex Lawrence
Dec 10, 2025
6 min read

I think I was about 13 when I got my first period. I have a memory of going shopping with my mum that same week, walking around the shops, feeling like a pumpkin having its guts scraped out. I remember thinking to myself, “I know periods are painful, but I can’t believe it’s like this!” I remember taking some disolvable ibuprofen, which was a big indicator of just how bad I was feeling, as I’ve always been reluctant to take medication, so any time I do is significant.

Years went by, having these very heavy, very painful periods, but I thought it was normal, people get bad periods, right? When I was 16, I went on birth control in the hopes it would help my heavy periods. It made a little bit of a difference, but I still remember them being agonising, and having a few incidents at school which were embarrassing at the time.

Fast forward to university and my GP changed me to the progesterone-only pill as i was having migraines, and it stopped my period completely. I was so glad! I thought I was finally free from that pain; I wouldn’t have to dread the monthly agony anymore.

However, in my late teens and early twenties, I started to notice these other symptoms outside of my period pain. I brushed them off as probably being caused by one of my many other health conditions. But this time I was wrong. This concoction of symptoms affected my participation in all areas of my life, including the ones we often don’t talk about in healthcare, like intimacy and relationships.

Endometriosis UK writes that the following are the classic symptoms :

“Pelvic pain
Painful periods that interfere with everyday life
Heavy menstrual bleeding
Pain during or after sex
Painful bowel movements
Pain when urinating
Difficulty getting pregnant
Fatigue”

And the following symptoms have also been reported:

"bleeding from the bowel
Symptoms of IBS
pain on ovulation
pain during internal examinations
back pain
leg pain”

https://www.endometriosis-uk.org/symptoms

I got to the stage where, after years of putting it off because I'd experienced so much medical gaslighting for other conditions, I finally pushed myself to go to the GP. Unfortunately, I didnt get a diagnosis straight away. I ended up having a different surgery first, which, when that didnt help my symptoms, I was finally investigated for endometriosis.

It was a long process, and so many times I said to the surgeon “but are you sure I should have this laparoscopy because maybe its nothing, i dont want to waste anyones time”, even though in my heart I did know something was wrong, but suppose when you’re constantly made to feel like you are a nuisance or dramatic, its hard to actually believe your own body & advocate for yourself.

Two years after that surgery, and over 10 years since my pain started, I got diagnosed with stage 3 endometriosis via a surgical laparoscopy. I was taken aback, it’s not just “a bad period? & it's not just all in my head.”

As many of you reading this will know, receiving a new diagnosis can evoke a range of emotions, including relief that you finally have answers. But also emotions like grief, sadness, and confusion. And for me, the biggest confusion of all was the “well, what now then?”.

I knew a bit about endometriosis as I'd researched it before the surgery, but I had this sliver of hope that maybe there would be a cure or something they could recommend that I hadn’t come across. Unfortunately, AFAB people’s healthcare is dire. To my understanding, there is more research on male pattern baldness than on endometriosis. How horrifying!

Endometriosis is a systemic disease that causes so much pain, yet there is a huge lack of funding, leading to misdiagnosis, delayed treatment and poorer quality of life.

“Endometriosis affects 1 in 10 women and those assigned female at birth”, according to Endometriosis UK.

Unfortunately, there is no cure, however, if you’d like to read more about treatments, you can do so here: https://www.endometriosis-uk.org/treatment-and-management

As an Occupational Therapist

I thought I would reflect on Endometriosis using the PEO model from occupational therapy to consider some of the ways it can impact someone's life, in the hopes of shedding light on how broadly it affects our lives; it's not just about reproductive health:

PERSON

Chronic pain and fatigue reduce physical endurance for daily occupations
Brain fog & pain impacting concentration, working memory,and decision-making
Emotional impact: anticipatory anxiety about flare-ups, fertility worries, depression, worrying about when i will come back after removal, frustration about the lack of support and options, other people not understanding the extent of the impact
Reduced sense of bodily autonomy + medical trauma influencing trust in healthcare
Fear of pain creates avoidance of intimacy
Self-identity changing: feeling unreliable or “less capable than I used to be”
Perfectionism clashing with fluctuating functioning
Adjustments to personal hygiene and self-care routines during flare days
Remembering to take medication
Intense fatigue

ENVIRONMENT

Work: office with limited flexibility for breaks; long periods of sitting exacerbate symptoms
Public toilets are inaccessible for frequent or urgent needs
Social: friends unaware of condition, limiting social engagement during pain flares
Lack of resting spaces in work/community settings
Healthcare environment invalidating: delayed diagnosis, dismissal of symptoms
Social stigma around menstruation → reduced support and accommodations
Intimate environments requiring sensory, comfort + timing adaptations
Cost of heating pads, menstrual products, nutritional changes: financial environment creates barriers
Work expectations built around linear productivity with no room for flare-days

OCCUPATION

Disrupted sleep routines from pain
Changing leisure participation having to cancel plans last-minute
Meal prep difficulty when standing tolerance is low
Work capacity impacted: needing movement breaks or WFH
Relationships are strained due to unpredictability and communication challenges
Parenting roles are becoming more mentally heavy
Healthcare becomes a part-time job: appointments, advocacy, recovery
Intimate occupations involving closeness become more challenging
Loss of meaningful roles (e.g., partner, athlete, leader) when symptoms flare
Having to reshape morning + evening routines around energy cycles
Difficulty passing bowel movements
Changing diets due to any dietary triggers
Fatigue makes gaining and maintaining employment or hobbies harder
Needing more sleep so missing out on nights out

*not an exhaustive list, just some examples that will apply to some people with endometriosis

Endometriosis isn’t just about pain or our reproductive organs; it’s a far-reaching disease that can impact all aspects of work and leisure, and yet its still minimised and misunderstood!

Finding Ways Forward

Endometriosis has driven me to become even more creative, compassionate, and adaptable, both as a person and as an OT. The PEO model reminds me that every challenge has more than one entry point for change. Change is possible when we design our life around the body we have, not the one others expect.

Some of the ways I have supported myself so far include:

Energy pacing and radical permission to prioritise recovery time without guilt (if you want to learn pacing, sign up to my newsletter, I have some existing new lower-cost support options coming in 2026! Mailing list:

The ND OTea break with Navigate Neurodiversity OT

Self-advocacy skills, preparing scripts for medical appointments to ensure my story is heard (let me know if you’d like me to share my templates & tips!)
Working from home
Supportive communication in relationships, sharing needs without shame
Using heat, TENS Machines and sports massage
Prioritising joy
Asking for help when I need it
Engaging in communities which understand what it’s like (Endo WhatsApp groups & FB pages primarily)
Challenging my perfectionism and treating myself more kindly. Being both professional and patient challenges me to dismantle the idea that productivity equals worth.

If you’d like to learn more about strategies for pain, energy and wellbeing, OTs can support with this! Having lived experience as a practitioner helps me to have a deeper understanding and provide trauma-informed care and support with occupational justice (e.g., workplace adjustments for fluctuating conditions). My waiting list is now open again & I will be publishing new, lower-cost support options in the new year. Stay tuned! Endometriosis has changed the way I practice OT and the way I live. I’m still learning all the time, and by no means am I an expert on endometriosis, but I always think that lived experience is incredibly valuable in the healthcare setting.

I hope this blog post was validating for those of you who have Endometriosis & for those learning more about it, I hope it provided some new insights into how wide-ranging the impacts can be.

Warm & welcoming personalised support with an OT who "just gets it"