I Lost the First 7 Years of Adulthood to Misdiagnosed Endometriosis: why we need to advocate for better treatment of female health conditions.
My Story
In pain, dismissed, and misdiagnosed: since I turned 18, my life reads like a rollercoaster of chronic pain, discomfort, self-loathing, self-doubt, consequential depression, suicidal ideation and hormonal chaos. Wait, hold up. You’re telling me those aren’t just rites of passage of being a woman?!
Life in 2020 was a turbulent time. I’d just turned 20, navigating what traditionally would have been a chaotic evolution into adulthood with the end of school and the beginnings of a new life at university. Instead, for the covid generation, a never-ending Groundhog Day of sitting behind a screen watching my bank account drain away with pretty much nothing to show for it became my first, and only, experience of the once-in-a-lifetime, you’ll-make-friends-for-life university years.
Yes, we ‘uni’ students still paid £80k+ in fees for an experience that involved a) my bedroom floor, b) 0 social or professional interactions and c) a glitchy computer screen heavily sensitive to technical meltdown. And if we judge friends by those with whom we spend most of our free time, I guess you could argue the only friend I made was with my toilet. Money well spent.
My Undiagnosed Endo Triggered My Eating Disorder.
Needless to say, my victimization at the hands of state exploitation became the least of my concerns, as my health continued to decline.
Without a support network thanks to the pandemic, and as a young adult just discovering independence and womanhood in an age of social media and information overload, there was only one way to control my pains: just stop eating. The latter was part-fuelled by my symptoms, part by a naïve perception of my own self-worth being determined by whether I could be as skinny as everyone I saw on Instagram.
My eating disorder came to dominate my entire life. I slipped deeper into an abyss of obsession, anxiety and isolation, from which it would take years to recover.
By this point, I’d already tried the doctor several times. Demands on the NHS and the intense messaging surrounding the pandemic left it nearly impossible to have a constructive conversation with a healthcare professional, let alone be seen.
After two years of battling chronic pain and disordered eating, with hundreds spent on a gut hypnotherapist, peppermint oil, probiotics and apple cider vinegar as inspired by Google (the closest I got to a medical expert at the time), I finally got a hospital appointment for a colonoscopy. Layman’s terms = tube up the behind, to assess the large intestine for signs of damage e.g., Crohns.
“It’s Probably Just IBS.”
Lo and behold, my insides were squeaky clean.
“You still have pain? Oh, well, your results are totally clear so it’s probably just in your head. That’s what we call IBS, by the way. When your bowels don’t seem to work as well as you would like, but there’s obviously nothing wrong with you so you’re probably just creating the symptoms. Are you an anxious person? Oh, you never used to be anxious, but now because you spend half your life in pain you are now anxious. Hmm. Try to manage your stress a bit better hmm? and watch what you’re eating. Oh, you have an eating disorder? Well, it’s probably just your anxiety. Have you tried birth control?”
When I was diagnosed with IBS, it felt a lot more like a life sentence. Basically, my pain wasn’t caused by anything physical, was unpredictable, could be related to what I was eating but also can just be triggered randomly, and is probably just because I was anxious and stressed. By slapping my medical records with the term ‘IBS’, the NHS washed their hands of me.
And sure, I was stressed. My whole life did a 180 at the behest of the pandemic; I lost all opportunities I’d worked my whole adolescence to realise; I had no friends or support network that weren’t in some way abusive; and I lived with chronic GI problems that would surely make me a WALKING RED FLAG incapable of holding down any form of relationship, ever.
Yes, I was stressed. And, apparently, it was ME, and MY STRESS, that was causing my pain. The latter became a narrative that I internalised completely, thus becoming the source of such intense self-loathing and self-blame.
Equipped with the overwhelmingly informative knowledge that I now had IBS; I sought the by-the-way-non-existent methods to manage my symptoms. Through all the peppermint teas, lack of onions, half-my-weeks-wages on probiotics, and armed with all my worthy Holland & Barret reward points, I was left none the wiser. Back to starvation, it was.
Alas, the cycle perpetuates, of which I became a dependent, weak, lifeless victim. Still in pain, but now blaming myself because, after-all, it was all in my head, right?
When I say I lost those first years of adulthood, I really do mean it. I woke up in pain, spent hours battling GI issues every morning, only to still be in pain, but anxious about the prospect of being in pain, or needing the toilet at inconvenient times, or being in pain tomorrow, only to continue being in pain all day long all night long and all the following day. It is little surprise I lost all sense of identity, and succumbed to anxiety, depression, fatigue, and suicidal ideation at the mere fact that a) my life was miserable and that, b) it was apparently entirely plausible that I was making my life miserable by stressing about how miserable my life was.
Seems confusing, right? Yeah, it was.
Oh, you actually have PCOS! Hurray! We have no treatment for PCOS, either!
It had been 4 or 5 years now. I’d tried everything you can even imagine improving my symptoms. I even fasted for 7 whole days, drinking only water and herbal tea. Please ladies, I do not recommend this for anyone with chronic conditions especially without medical supervision. The extremism of the latter is, I guess, a testament to my desperation for resolve.
The paradox for me was that I’d always been healthy, almost obsessively so. I ate wholefoods, cooked all my meals, worked as a fitness instructor by day and was generally thoughtful about my health. So, my abject lack of health, compared to others who took a far less diligent approach to their wellness than I did, was perplexing.
It soon became clear fasting was short-term relief and wreaking havoc on my hormones. Once I started to eat more regularly, my periods started to return, albeit irregularly. And so came the pain and the chaotic hormonal fluctuations that made me feel like a completely different person trapped in a bizarre and depressing world every 4-6 weeks. I’d like to take a moment and raise my glass to the friends, family or partnerships that still treated me like a functioning human being despite my irrationalities during these times of chaos.
It was at the height of a depressive episode, a late period and debilitating pain that someone close to me drove me straight to the doctors and ordered me to go back and tell them to keep digging. It took about 7 months to get an ultrasound, where they found cysts on my ovaries. One or two blood tests later and they told me I had PCOS.
“Oh, but you don’t think PCOS explains all your symptoms? Well, we did take a blood test and while that only measures levels of hormones in your blood at that specific, tiny snapshot in time it is pretty accurate and…well no there is no treatment for PCOS but usually if you just eat well and exercise. Oh, you are a fitness instructor? Well, I suppose you know all about that then! Have you tried birth control? oh you have painful periods? Many women have some discomfort during their periods it’s totally normal. Oh you feel completely crazy, irrational, depressed and suicidal before your period? Hmm yeah, probably just PMS. Often birth control can alleviate some of that stress for you. You want a laparoscopy? Well, I don’t know about that, it will probably be pointless. Much easier to just take a pill. No? Ok, you’ll have to go and speak to the hospital about it yourself. Oh, before you go! Did you say you wanted to try the pill?”
I’m Not Leaving This Room Until You Book Me In For A Laparoscopy.
Fast forward another 8 months, and I am sitting in the consultant’s room at the local hospital.
Me: “Yes, I’m here because, well you see I’ve been diagnosed with IBS and then PCOS but none of these terms really explain my symptoms. I am in pain daily, it feels like it’s spreading to my back, my legs. I am tired all the time; I can barely function. I can’t hold down a job. I am miserable, I am depressed, I want to kill myself. I can’t see a life worth living if it’s going to be like this for the rest of my days. I’ve done my research, and I know you can’t diagnose endometriosis without a laparoscopy, and I think it’s plausible that I might have it. Can you book me in?”.
Consultant: “Ah, OK. I see. Well, a lot of the time, you see, we do not find endometriosis. Often, it is just PMS. Are you sure you don’t have PMS? It is normal to feel a bit different and out of sorts before your period?”.
Me: “If this is just PMS, then I definitely want to kill myself. You’re telling me every single woman out there is experiencing what I am? How are they functioning like normal human beings? I just need to know. If you don’t find endometriosis then, that’s great, I can keep looking and searching for answers. But I need to know, because right now, the health anxiety is crippling and when I feel pain, I panic because I don’t know what’s causing it.”
Consultant: “Well, where is your pain?”
Me: “Just EVERYWHERE. At this point, my pain is EVERYWHERE”.
Consultant: “Hm, ah, OK. I see. Well, before we offer such treatments, we do recommend the birth control pill. Have you tried this? It is a very effective treatment”.
Me: “Listen. I have no interest in artificial hormones. I am in pain daily. I need to know what is causing it. I am not leaving this room until you book me in for a laparoscopy. Whether it’s IBS, PCOS or I’m just crazy, I need to move on with my life, and I can’t do that knowing I could be living with endometriosis.”
Consultant: “OK, I will book you in. Before you go, here’s a leaflet on the birth control pill.”
We Found Deep Endometriotic Deposits in Your Pelvis, The Cause of Your Pain…
3 cancelled surgeries and another year later, groggy and severely dehydrated from opiates and general anaesthetic, I awoke from my surgery vindicated and overwhelmed. Yes, we found endometriosis. Yes, in fact, it is so close to both your bladder and your bowel that I could not remove it, it is deep in the walls and likely the cause of all your symptoms. See you in two months, give or take! Oh, you want treatment? Well, actually, yeah see, we don’t really have much treatment for endometriosis. I couldn’t remove it but, guess you’ll have to wait for the follow-up to see if we’ll refer you to someone who can. No promises though, lol! We like to keep you on your toes. Just because you have a proper diagnosis from invasive keyhole surgery doesn’t mean you instantly have access to proper treatments!!! No no, of course, you will have to keep calling the doctor surgery to get a follow-up appointment. Oh, you can’t speak to the doctor for another month? Such a shame, just manage your stress. Have you tried birth control?
Alas, 7 years later, thousands of pounds poorer in my quest for relief, a shell of my former self having spent years loathing the way in which my mind was apparently leaving me bedridden and chronically ill, I emerged. Vindicated, validated yet somewhat aware I was a product of medical gaslighting, engrained misogyny in the way our healthcare system recognises and treats female disorders, and, evidently, streaked with war wounds and gaping scars from the murky years of pain, grief, loss and confusion that had become my reality.
And yet, I am still having to stand up for myself and push for further treatment. I was sent away from the hospital without even a leaflet on endometriosis this time, and no firm date for my follow-up appointment or treatment plan. My vindication lasted all of 5 seconds.
So, let’s talk about it.
Why are conditions like endometriosis so underfunded, under researched, undertreated and underdiagnosed?
In my opinion, women’s health demands urgent advocacy. Medicine has been shaped for centuries by male-dominated research, with women underrepresented in clinical trials. As a result, diseases that primarily affect women receive disproportionately less research funding relative to their burden (Smith, 2023). Endometriosis, for instance, impacts an estimated 10% of women worldwide — 176 million people — yet continues to be labelled a “niche” issue (Endometriosis UK, 2020). Hardly niche, if you ask me.
Diagnosis is equally inefficient. Confirming endometriosis usually requires a laparoscopy which is an invasive, and costly, procedure. Subsequentially, average diagnostic delays are 5-12 years globally, roughly 8-9 years in the UK, a figure that has hardly shifted in over a decade (Devlin, 2024). In an era of social progress, it’s shocking that women’s health is still constrained by outdated systems and neglect.
And how many of us have been told that “period pain is normal”? The culture of medical misogyny — minimising or dismissing women’s pain — fuels these delays. I was misdiagnosed twice and dismissed each time, left with no follow-up and no treatment plan.
Symptom Overlap
A huge complicating factor is overlapping symptoms. Women with endometriosis are nearly three times more likely to have IBS compared to those without (Nabi et al., 2022). Whether this reflects true comorbidity — both linked to gut microbiota dysbiosis — or widespread misdiagnosis, the result is the same: prolonged suffering. Add chronic pain to daily gastrointestinal discomfort, and you get a chaotic cocktail.
Another rarely discussed overlap is eating disorders. This was my most emotionally difficult symptom. I coped with pain and gut issues by starving myself into anorexia. The fallout was years of hormonal chaos, food obsession, amenorrhea, anxiety, and self-loathing. And I am not alone. The ENDONUT study found that 25% of women with endometriosis also had IBS symptoms and screened positive for eating disorders, alongside anxiety and depression (Aupetit et al., 2022).Indeed, an ENDONUT study found 25% of surveyed women with endometriosis also had both IBS symptoms and positive screening for eating disorders, as well as a clear mental health dimension presenting as anxiety/depressive symptoms (Aupetit et al., 2022).
Why does this matter? Because if I’d have known that my self-destructive behaviours were rooted in a physical disease, perhaps I wouldn’t have taken them so far. Chronic pain unacknowledged doesn’t stay in the body — it becomes a mental battle of self-doubt, self-blame, and fractured identity that can take longer to heal than the physical pain itself.
I know there are girls right now living this: stomach pain, bloating, body image struggles, told “it’s just IBS,” “just PMS,” or “just anxiety.” Even if it were “in your head,” that doesn’t make it less serious or less deserving of care. I just wish someone had told me that sooner.
So, what needs to change?
- Doctors and specialists should get more mandatory training in the latter, and ‘pain bias’/stigma around women being dismissed for being ‘emotional’ or ‘exaggerating’ must be talked about openly. The same goes for the normalisation of period pains.
- Of course there is a strain on our NHS. But even now I’ve received my diagnosis, I am still having to push and push for further treatment plans. Jobs that shouldn’t fall on my lap, such as booking a follow-up appointment post-SURGERY, are. Patients just fall through the cracks. We need faster referral pathways and greater access to diagnostic tools like laparoscopy and ultrasounds. Behind it all, we need proper funding for, and attention given to, our wonderful healthcare system.
- More funding for endometriosis research. Enough said.
- What about integrated care models? Like it’s been outlined, conditions like endo, IBS, eating disorders, all interlink. Healthcare should reflect this, and patients should have access to multidisciplinary teams.
- Advocacy. We must speak, share, petition, and demand better.
And now to my fellow female warriors, in case no one has told you yet, your pain is real, and you deserve to be heard. I know it’s hard, overwhelming, and confusing. But there are steps we can make to live healthier, happier, calmer lives. Together, we will keep standing up – for ourselves and for each other – until the time finally comes when the system will stand with us.
Until then, trust your body. She knows best.
