Navigating the Storm: My Journey with Endometriosis, Adenomyosis, and PCOS

Living with chronic illnesses is like embarking on a never-ending rollercoaster ride filled with unpredictable twists and turns. For over a decade, I have battled against the relentless trio of endometriosis, adenomyosis, and polycystic ovary syndrome (PCOS). In this personal blog post, I want to share my milestones, triumphs, and challenges as I navigate the storm that is life with these debilitating conditions.

2009-2018: A Decade of Severe Symptoms

During this period, my life was consumed by the debilitating symptoms of endometriosis, adenomyosis, and PCOS. The worst part is that I had no idea I had even one of these conditions. I had no idea what was happening to my body, despite numerous GP visits and hospital appointments. Every month, I endured heavy periods that left me physically drained and emotionally exhausted. The agonizing stomach, pelvic, and back pain became constant companions, making even the simplest tasks seem insurmountable. Sickness and nausea became my unwelcome daily visitors, constantly reminding me that I had no control over my own body. The lack of any kind of formal diagnosis left me feeling lost, confused, alienated, and very alone. I was constantly asking myself, "is this really what all women go through?"... And if so, "why can I not handle it like everyone else?" I felt weak for not being able to handle what I thought was a normal part of life as a woman. Retrospectively, I can now see there is a huge lack of education around women's health and reproductive health, and honestly I look back and feel let down that not one single doctor, GP, or specialist, even mentioned the word endometriosis, until ten years after my symptoms really first started.

2018: A Breaking Point

The pain reached such unbearable levels that I found myself hospitalized not once, but twice in the same year. The problem being that because my pain levels were already so high, I could never tell, when health issues escalated, because any pain related warning signs were swallowed by the chronic pain I felt everyday. So I ended up in hospital, hooked up to wires, and drips, enduring countless blood tests, invasive scans, and sceptical frowns by Doctors who were certain I was overexaggerating. For much of this, I was completely alone. I didn't know what questions to ask, but during a second hospitalisation were doctors discovered I had developed a severe infection that had nearly spread to my kidneys without realising, I knew I had to start taking things into my own hands. My biggest advice to anyone uncertain about their health now is PUSH FOR ANSWERS. DON'T LET ANYONE FOB YOU OFF. You know your body better than anyone, and you know in your gut when something is wrong.

2019: The Diagnosis and Surgery

After years of uncertainty, missed workdays, and countless medical appointments, I finally received a diagnosis of endometriosis. It was a bittersweet moment as the validation brought both relief and a profound sense of loss. The instant relief came from knowing I really wasn't overexaggerating, I wasn't going crazy, something really was wrong. But on the other hand, I learned that endometriosis had no cure. It's something I would have for the rest of my life. So all the things I thought I had temporarily put on hold due to pain (mainly lots of sports and lots of socialising), were things I would have to limit and balance permanently. So with that relief came a real sense of grief and almost a mourning for someone I couldn't really be. However, the diagnosis also paved the way for surgical intervention, which I hoped would bring some respite from the relentless pain.

The surgery proved to be a temporary turning point in my journey. Though the recovery was challenging, I felt a flicker of optimism as I regained a semblance of normalcy in my daily life. The pain diminished, and for a brief moment, I savoured the feeling of liberation from the invisible chains that had bound me for my entire teenage years and my early 20s. During the surgery in which they removed endometrial tissue from my ovaries, they also fitted a Mirena Coil IUD, to slow down the return of the endometriosis. I have been left with scarring and lesions, but I was feeling hopeful that I would have relief from the pain for at least a few years.

2020: Battling Relapses and Seeking Answers

Unfortunately, my respite was short-lived. The familiar symptoms resurfaced within 5-6 months, shaking my newfound stability. I'd learned, mainly through my own research, that symptoms often recur at about the 5 year mark, so having only experienced 6 months of reduced symptoms, I was confused and concerned that the endometriosis seemingly had returned at such an alarmingly fast rate. Determined not to be defeated, I underwent a series of scans, hoping to unravel the mysteries of my recurring pain. The results were inconclusive, leaving me frustrated and grappling with uncertainty. It was hard at this point to not give in to the overwhelming sense of helplessness, and when COVID-19 lockdown began, I spiralled into a really deep depression as I became physically isolated with my pain. Whilst in, what I now know to be a very toxic relationship, I battled a lot of this completely alone and without support that I so deeply craved and needed. It felt like I was drowning, and I couldn't breathe for being suffocated by anxiety, worry, confusion, frustration, and loneliness. 

2021: The Adenomyosis Revelation

As the intensity and severity of my symptoms escalated, I found myself in the familiar confines of the hospital once again. More tests, more wires, more scans. This time, however, the scans revealed a new adversary: adenomyosis. I'd never heard of adenomyosis, despite its close relationship to endometriosis. Again, I felt so let down by all the doctors that had come before. The diagnosis was both a shock and a relief—a shock because it added another layer of complexity to my already challenging situation, but a relief because it provided an explanation for my escalating pain. But what did this mean for my already precarious health situation? Again, I found that I was proactively provided with very little information, until eventually I decided to go with Private healthcare, a luxury I know is not afforded to everyone, and I'll be eternally grateful that my workplace at that time provided a healthcare scheme which financially covered my consultations. throughout 2021 and 2022, my specialist ordered repeat scans and also offered a handful of new management options to try and improve what was, a quickly decreasing quality of life.

2022: PCOS Discovery and Seeking New Solutions

Determined to explore every avenue of relief, I underwent physiotherapy targeting my pelvic floor muscles, which they were hoping would potentially relief some of the general pain, as well as pain during sex. The physiotherapy was invasive and almost humiliating, but I was determined to try anything. My lack of drive, my lethargy, and mental health decline were causing further problems at home, with a frustrated, angry, and uncaring partner who didn't try to understand the implications of what was happening. The physiotherapy physically relaxed some of the more tense muscles, but long term, had very little impact. I was now experiencing worse pain and bloating than ever before (image below taken 1 hour apart).


Accompanied by the disheartening additional diagnosis of PCOS, the relentless battle against my body seemed never-ending, and my resilience was really wavering at this point.

The last private consultation I attended in the Autumn of 2022, I was told that it was highly unlikely I would ever be able to have children. My partner didn't even come to this appointment. Luckily my best friend stepped in, came to the hospital with me, waited for me, and drove me back home. If they didn't I would have had to face that information completely alone. Whilst I knew it was always a possibility, hearing it aloud for the first time was crushing. It was really at this point I knew I would never have the support I needed and deserved at home.

2023: Awaiting a New Treatment Plan

In the present year, I find myself caught in a whirlwind of scans, pain medication, and an unsettling sense of uncertainty. As well as being newly single having called off my engagement, moving into a new apartment, and resetting my life, I also await a new treatment plan, and am holding on to the hope that something can bring me some sense of relief. My journey has taught me resilience, patience, and the importance of advocating for myself in the face of adversity. I've also learned that some people in my life just were not cut out for this journey and I had to leave those people behind. Having a strong support network is absolutely vital, and without the family and friends I have in my life now, I don't know were I would be.

Cutting toxicity, Finding Your Support Network, and Advocating for Yourself

Living with endometriosis, adenomyosis, and PCOS has tested my physical and emotional limits. It has forced me to confront the fragility of my own body and navigate the complexities of chronic illness. But amidst the pain and setbacks, I have found strength, resilience, and a world of support from those closest to me.

I've let go of the things and people that were adding to my distress and that were damaging my wellbeing, and I clung on to the people that actively cared and loved me even on the days I was crying on the sofa, or bleeding through ten pads an hour, or when I was sat in the shower for hours, or when I just needed a hug.

I've learned to ask the damn questions. If I don't agree, I speak up. If I don't understand, I'll ask. If I don't want to take even more pills, I'll push for alternative treatment options. Nobody is going to fight for you, if you don't fight for yourself. Your health is so important, so ask the damn questions. Fight for you.


Though my journey is far from over, I refuse to let these conditions define me. I am more than the pain that I have to manage, and I am determined to find moments of joy and fulfilment amidst the turbulence. I've definitely developed a renewed appreciation for life's simplest pleasures; a low pain day, meeting a friend for coffee, going for a walk in the sun, the days I can do a run, small weekend breaks, laughing with friends, duvet days, having a really productive work day. Because then, when I have a bad day, I know I have all of those things still to look forward to.

Location: Manchester, UK

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