Sophie shares her long road to diagnosis after years of being dismissed despite clear symptoms and a family history of endometriosis. From being told she was “too young and healthy” to have the disease, to becoming bedridden before excision surgery, she opens up about the emotional and physical toll of not being believed.

What makes this episode especially meaningful is how personal the conversation becomes. As Sophie talks about living with thoracic endometriosis, I also share my own recent fears and complications following surgery, including my experience with a collapsed lung and ongoing concerns surrounding thoracic endo. Together, we talk about medical gaslighting, fear, grief, identity, movement, and the complicated relationship many people with endometriosis have with their bodies.

We also explore how movement can become healing instead of harmful, why meeting yourself where you are matters more than pushing through pain, and how creativity, self-expression, and adaptive movement can help rebuild trust with your body after illness and surgery.

Sophie’s approach through Endo Moves Club is incredibly refreshing and compassionate. She is creating space for people with endometriosis to reconnect with movement in a way that feels supportive, accessible, and realistic.

This episode is vulnerable, validating, and hopeful. It’s for anyone who has ever questioned their pain, struggled to feel at home in their body, or wondered if healing and joy are still possible while living with chronic illness.

Keep creating, Keep healing💛

-Priscilla

Find Sophie (The Endo Moves Club) on YouTube and Instagram

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Read and listen to Priscilla’s, founder of FLARE, story here: This is my endometriosis story.

Today we want to introduce you to part of the creative team for FLARE.

Here’s her story.

I couldn’t have been older than 20 when the word ‘endometriosis’ first entered my life. I’d had painful periods for a while by then, the kind of excruciating pain that no amount of painkillers would touch. Like every woman, I was told painful periods are normal, it’s part of the deal of being a woman, so it probably took longer than it should have before I sought help.

It takes on average 7 to 10 years for a woman to get a diagnosis of endometriosis from the onset of symptoms. I consider myself lucky that the first gynaecologist I saw immediately recognised the signs of the disease. He scheduled me for a laparoscopy, the gold standard for diagnosis. The verdict was clear: stage 4 endometriosis with involvement of other organs.

It would be difficult for me to have children, even with IVF, he said. Your uterus is a hostile environment, he said. I’ll never forget that interesting choice of words. By the time you’re 30, you’ll probably need a hysterectomy. If you really want kids, your best bet is to have them now, he added.

I came home and discussed with my boyfriend, now husband. We sat in the garden of his parents’ place, sat by the pond surrounded by colourful flowers, as we discussed, at age 20, what we wanted our future to look like. Too young really to be having those kinds of conversations. Too young to have kids, we agreed on that.

We let that ship sail. The story of kids and why I don’t have them, is a story for another day. It involves adoption, long waitlists, a global pandemic and cancelled plans. Rest assured, it also involves us making peace with that decision and living our best, albeit childless, lives.

Time passed, we moved countries and my endometriosis was largely under control with something as simple as continuous-use birth control. I had a few flare-ups a year but compared to what my pain had been like before, this was nothing. This was manageable.

Fast forward to 2023. I’d been dealing with vague health complaints for a while, so decided to see a doctor. My first visit to a GP was in February 2023, almost exactly three years ago. The notes from that visit read: “Has headaches, feels fatigued and experiencing gut issues. Thinks endometriosis is back.” The GP sent me for a blood test, which, unsurprisingly, showed nothing wrong with me.

The follow-up visit made no mention of endometriosis anymore. Suggestions of lifestyle changes were made. Stress as the likely culprit of my vague complaints. You have a busy job, she said, you need to rest more.

In the years that followed, my complaints would only worsen. Little by little, the fatigue took my life away from me. Once a fit and healthy person who went to the gym every day and did three Oxfam 50k trailwalkers, I now couldn’t even muster up the energy to go for a twenty-minute walk near my house. I lacked energy to meet up with friends, spending most of my weekends at home recuperating from a busy week.

My gut issues worsened and as time progressed there were less and less foods I could eat without finding myself in excruciating pain. I cut out dairy. Then gluten. Then fodmaps. I ate unprocessed foods, focused on fruit and veggies. One by one, my favourite foods all became off-limits. My belly was forever bloated.

Even though I had mentioned issues with endometriosis, I didn’t get a referral to a gynaecologist, so I sought one out myself. I wasn’t given any solutions for my recurring flare-ups. Instead, I was asked questions about fertility. Did I realise that endometriosis didn’t have to mean that I couldn’t have kids? I told her what the outcome of the laparoscopy had been, how my womb was a hostile environment. Have you discussed this with your husband, she asked, as if it were his womb to decide about.

My GP referred me to a gastrologist. I was tested for SIBO, which was negative. It’s likely IBS, he said. I’d been diagnosed with IBS twice before, so that made sense. Try the low FODMAP diet, he said. I’d tried the low FODMAP diet many times before, I said. I’ll refer you to my dietitian, he said.

In a follow-up phone call he said, “You know what works for me? Running. Have you tried running?” I didn’t tell him I used to run, I did trailrunning, I ran half marathons. Now, I would love to run but the fatigue and pain stopped me.

The dietitian was lovely, and it became clear that I perhaps hadn’t done the FODMAP diet entirely correctly. It’s a complicated diet after all. I stuck to her instructions and noticed some relief. But the symptoms didn’t go away completely.

Additionally, where I used to get one or two endometriosis flare-ups a year, I now had one every month. No one, including myself, made the link between my endometriosis flare-ups and my gut issues. The GP was all out of ideas. Anxiety, stress, burnout, IBS. Have you tried exercise, meditation, mindfulness, therapy? I tried all of those things, I said. She said, go back to the gastrologist.

This time, he took me seriously. Let’s do some tests, he said. He did an endoscopy and colonoscopy and it was immediately clear: part of my bowel was immobile. I also stopped making digestive enzymes for maltose and sucrose, which explained my digestive issues. He was the first to make the link: my gut issues were likely the result of bowel endometriosis.

From that moment, things moved quickly. I was referred to a gynaecologist. An ultrasound and MRI confirmed what the gastrologist had also seen and what I already knew: endometriosis with involvement of the bowel. I needed surgery and was given a date only 4 weeks out.

I should have felt relief, and I did. But I also felt anger. For three years, I was told it was all in my head. That the exhaustion I felt was a result of stress and anxiety. That the solution was in my hands. That the only reason I didn’t feel better was because I couldn’t stick to the diet, because I must’ve been doing it wrong, because I didn’t run enough, or meditate enough. That I wasn’t getting better because I wasn’t doing enough. I told myself that I was just getting older, that the previous fit version of myself was in the past. I told myself I was just “a low-energy person.”

I have now had my hysterectomy and endo excision surgery. The surgeon found part of my bowel fused to my uterus. She showed me the pictures. All I could think was, “so it was not in my head…” No amount of diet and meditation would have ever separated those two organs.

I’m only 8 weeks post op. The endometriosis pelvic pain is gone. I’m still tired at times, I still feel pain from the surgery at times, but none of that is anywhere close to what I felt before the surgery.

People keep telling me I should take it easy, because I am still healing. But in reality, I haven’t felt this good in years. It’s hard to take it easy when you’re bursting with energy.

A couple weeks ago my husband asked me, “What are you going to do with your new life?” I thought about that for a second. I’m already doing the things I want to do. I said, “All the same things, but this time I’ll have the energy to enjoy them.”

It’s lovely to meet all of you, I’m excited to be a part of FLARE and I’m even more excited to see what this project will bring to the world.

If you’d like to hear more from Sophie, you can find her on her Substack.

Living with endometriosis is hard enough. You don't need another space that makes you feel like you have to perform wellness. Subscribe for honest writing, creative tools, and community.

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Freya’s passions were a testament to her strength. She loved food, a necessity and a joy in her struggle to maintain her weight. As a qualified personal trainer, she understood the power of movement, living by the mantra, “the more you move, the better you feel.” Even as her body betrayed her, she found solace in the gym, a space where she could reclaim control. A passionate advocate for women’s rights, she fought for the women under her care in her role as an emergency department assistant, recognizing the systemic neglect she herself faced. And she loved big dogs, the bigger the better, a simple joy in a life increasingly complicated by illness.

Her sister misses the ease of their twinship, a silent understanding that transcended words. “When Freya and I did something together, even complex physical tasks, we could do it in complete silence. Despite being two individuals, together we moved and functioned as one.” This ease extended to a profound physical comfort, a sense of safety and reassurance, a unification of two halves.

Freya was stoic, her strength amplified by her illness. She possessed a strong sense of justice, a dry wit, and a fierce loyalty. She was a contradiction, yet this only amplified her potential.

Her symptoms began at 14, at the onset of menstruation. Debilitating pain, heavy bleeding, and overwhelming fatigue were dismissed as “normal.” But Freya’s endometriosis was not confined to her pelvis. She suffered from thoracic endometriosis, experiencing nosebleeds, chest pain, and breathlessness, all exacerbated during menstruation. By 24, she was experiencing recurring pneumothorax/hemothorax.

It took 12 years and over 30 pneumothoraxes for Freya to be diagnosed, and even then, it was by chance, not by diligent medical investigation. There was no exploration for pelvic endometriosis. The diagnosis came only after samples were taken during a pleurodesis procedure.

Endometriosis shrunk Freya’s world. Pain and fatigue were constant companions. Work and the gym, a necessity for pain management, were her only escapes. Her sister recalls a growing sense of isolation, a need to know where Freya was at all times.

The misconceptions surrounding endometriosis compounded her suffering. That it’s “just a painful period,” that it’s “rare,” that it’s “a gynecological condition,” that it’s “benign.” These dismissals fueled Freya’s frustration and despair. The only treatment offered, medical menopause, worsened her symptoms. Support systems were nonexistent. Freya was left isolated, dismissed even when facing life-threatening situations.

The emotional toll was immense. More than the physical pain, it was the constant dismissal and invalidation that crushed her spirit. “She died believing she was of no value,” her sister reveals, a heartbreaking indictment of a system that failed her. Freya’s diagnosis was accidental, not a result of care or curiosity. Even after diagnosis, she was discharged from appropriate specialties, offered ineffective treatments, and left without proper monitoring.

To those struggling with endometriosis, her sister offers a powerful message:

“You know your body. Find a doctor who respects that.”

And to those who want to support them:

“Listen, hold space, and have unwavering belief.”

Freya’s story is not a legacy, but a call to action. “There is no cure without curiosity,” her sister declares. “Without professional curiosity, there will be more women harmed. There will be more Freyas.”

Freya’s story is just one of countless others who have fallen victim not only to the disease itself, but to a system that has promised to uphold the core principles of respect for life, to do no harm, to do good, confidentiality, and overall professional integrity. We must demand better. We must demand change. We must remember Freya, and all those like her, by refusing to let their stories be in vain.

Her story echoes the experiences of countless women, including my own. My symptoms began as early as 8 or 9 years old, with fainting spells and severe stomach pains that led to a series of GI scopes. By high school, I was suspected of appendicitis, but when tests proved negative, I was dismissed. Cysts began to appear, dismissed as ‘part of being a woman.’ My health deteriorated as I was shuttled between ‘professionals,’ eventually leading to a stint in a mental hospital. During this period, I began to question my own worth, my pain, my very existence. Told that it was all in my head, I turned to self-harm, seeking physical proof of my pain. The weight of misdiagnosis permeated every aspect of my life, leaving me vulnerable to chronic injury from domestic violence. Eventually, emergency surgery revealed endometriosis on my colon, rectum, and bladder. Two months after excision, I was hospitalized again, on the verge of needing a blood transfusion. A colorectal surgeon became my second savior. After a pregnancy that interrupted unsuccessful non-surgical treatments, I underwent a hemorrhoidectomy, followed by another excision of endometriosis on my large intestine and a hysterectomy for adenomyosis, with a diagnosis of interstitial cystitis. A year later, I required a rectal prolapse repair and colon resection. We currently suspect thoracic endometriosis involvement, another prolapse and I am in active symptom management through pain management and physical therapies.

This is the reality for so many – a reality of years of misdiagnosis, dismissed pain, and a constant battle for validation and to simply LIVE.

The true extent of tragedy caused by endometriosis is only beginning to surface, as more and more stories come to light. We have discovered a disturbing pattern: women whose deaths, while perhaps not directly attributed to endometriosis, were undeniably influenced by the disease and its mismanagement. These include a mix of adverse reactions to medications never fully discussed with patients, deaths by overdose or suicide, and even cases labeled ‘Sudden Adult Death Syndrome’ triggered by medicine-induced cardiac arrest. One tragic case involved bowel surgery complications stemming from opioid use for pain management, a readily available solution in some countries, like Ireland. Another woman simply laid down and never woke up, with limited details available, yet her connection to endometriosis was clear through her active involvement in social media forums. These are not coincidences; they are symptoms of a system that consistently fails those with endometriosis.

The devastating reality of endometriosis is further illustrated by the heartbreaking stories of women like Nicola Thyne, Trinity Graves, Aubrion Rogers, and Laura Newell.

Nicola Thyne, a 35-year-old mother, faced a 15-month wait for surgery, only to have it canceled and pushed back another 18 months. Overwhelmed by despair, she tragically took her own life in March 2025. Her pre-written letters to her family serve as a stark reminder of the emotional toll of medical neglect. Similarly, 18-year-old Trinity Graves, burdened by the relentless challenges of chronic illness, succumbed to suicide. Her inability to attend school, hold a job, and maintain her ambition led to unbearable suffering.

Surgical complications also claimed the lives of Aubrion Rogers and Laura Newell. Aubrion, after years of dismissed symptoms, died during surgery to remove endometriosis, an ovary, a fallopian tube, her appendix, and endometriomas. She suffered a fatal cardiac arrest during recovery. Laura, in Ireland, died from bowel damage caused by prolonged use of over-the-counter opioids, a desperate attempt to manage her undiagnosed endometriosis pain, which then resulted in fatal surgical complications.

These deaths, and many others, often go without proper acknowledgment of endometriosis as a contributing factor. The condition can lead to organ failure, complications from surgeries performed by inadequately trained practitioners, and fatal overdoses from medications sought for relief. By implementing appropriate screening for endometriosis-related ovarian cancers, enhancing training for medical professionals, and increasing overall awareness, we can potentially prevent organ shutdowns, other life-threatening complications and save lives.

These devastating events underscore the urgent need for systemic change. We must demand improved informed consent practices, explore alternative pain management options, and mandate increased awareness of endometriosis-related complications within the medical community. We must work together—patients, advocates, and medical professionals—to ensure that those affected by endometriosis receive the timely, compassionate, and competent care they deserve. Only then can we prevent such tragedies and honor the lives lost.

This post was written by Chelsea Hardesty

Chelsea, the president of Getting the Better of Endometriosis is a researcher with a strong passion for endometriosis awareness — as well as support for those suffering from the illness. Driven by her own personal experiences, she strives to make a meaningful impact on society to support the chronically ill.

Before the Start

I was 17 when I got diagnosed with PCOS (Polycystic Ovary Syndrome). I had first gone to the GP in regards to heavy and painful periods when I was just 15, the response was that it was totally normal and I basically had to just learn to live with it. When I was 17, I had gone back to the GP as the periods were still very heavy and very painful, but I was also now experiencing intense pain during intimacy.

The GP referred me for a scan of the ovaries. I received the results via a telephone call. The scan showed 5/6 small cysts on my right ovary. The doctor told me on the phone if I thought I wanted children, I should try to have them at a younger age as there was a high possibility the PCOS could progress into Endometriosis, therefore leading to potential fertility issues. At that time in my life, I had no intention of having children nor did I have a clue what endometriosis was. I remember feeling really overwhelmed, confused and tearful, it was such an intense and grown-up conversation for such a young girl.

I was advised the best way to manage the heavy bleeding was to go on contraception. I then began a 2year hunt to try to find a contraception that worked. Nothing did. They all had such negative effects on me; anger issues, weight gain, depression, etc, plus none of them helped with the bleeding or pains. I decided it was easier to stop trying to find something and just carry on life taking regular painkillers to manage the pain. Intimacy forced us to overcome many challenges but we managed. Important to mention that my husband now has been my partner since I was 17.

The Start

At 20 years old, my partner and I decided to move into our first home together. I was still managing my pains with ibuprofen, paracetamol, hot water bottles and regular baths and for the most part they were manageable at this stage. Intimacy was always a challenge but we found certain ways to make it comfortable and if it was possible I took painkillers before to override the pain during and to help the pain afterwards. Early 2014 we found out we were unexpectedly pregnant with our Baby boy who was born in Autumn that year. We then unexpectedly fell pregnant again with our Baby girl who was born Summer 2016.

I count my lucky stars every single day that I was able to naturally fall pregnant with my babies and I put my lioness mother approach and super protectiveness down to the fact that I feel so blessed to have them and could never take it for granted.! During my pregnancies and breastfeeding (which was all very back-to-back) my pains and problems had seemingly gone away. When my daughter was about 9months old I stopped breastfeeding and by the time she was 10/11months old my body had gone back to normal. This was when my pains and problems came back to surface with a mighty vengeance!

Repetitive Dismissal

I remember having a GP appointment soon after this revelation where I had complained of very heavy and painful periods as well as intense lower back pain. He patronisingly told me, “I was clearly too stressed with having 2 very young children and being such a young -mother myself, I needed to try to calm down.” I was mortified. I left with my head down, shoulders slumped feeling embarrassed, mortified and intimidated. I once again, managed my pains with regular painkillers and hot water bottles. I had many more appointments with the GP surgery, where I was more or less told the same thing. I joined a new GP surgery a while later and made an appointment with the same complaints and did get referred for an ovary scan. Had the scan and it showed no signs of anything, not even any sign of cysts. I was effectively sent away under the advice to “learn to manage my stress levels”.

Few months go by and the bleeding was getting heavier and lasting longer and the pains were intensifying, so I went back to the GP. This time I was totally dismissed. She told me, “The recent scan shows no signs of anything what-so-ever and complete normality. Am I sure these pains are real? Perhaps therapy could help?”. Once again, I left feeling absolutely mortified and belittled but also confused. Was I just stressed? Was I being really dramatic and over the top? I thought I had a high pain thresh hold but perhaps not! A year or so goes by the pain is no not very manageable anymore, I am taking a lot of time off work, I can’t sleep properly, I spend a big portion of my life curled over in a ball. It is proving difficult.

I joined another new GP surgery. I thought I would try again for some answers, some clarity on my sanity even. I went to the appointment and told them the situation including a bit of the history. I was told, “your problems are mostly normal but could be heightened by stress. You are naive to not be on contraception as that is the likely cause of your heavy bleeding.” This is when I decided to try the implant. (contraceptive bar that goes in the back of the upper arm) It did help for the most part, it almost stopped the bleeding almost completely and therefore lessened the pain. It didn’t do anything to help intimacy difficulties, which were still very much there but as all ways we made it work. I had that implant for 3 years before needing it routinely changed.

There was a gap of a few weeks after having the implant out before the new one went in. In those few weeks I bled ridiculously heavily and have excruciating pains, it was very apparent that my problems had not gone but were just being masked.

The Reason

Here, I am 27 years old and have a new implant that is not quite masking the pain as the previous one had. I am having to take painkillers much more often, take more time off work, suffer on a daily basis. Even when I wasn’t menstrual bleeding, I was still having intense pains. I was starting to have to noticeably adapt life around my problems. I made an appointment with the GP to discuss everything, go through my entire history and try again for some answers. She listened well and after talking she told me it sounded like it could be thyroid related. I was sent for blood tests and yes, the results showed hypothyroidism otherwise known as an under-active thyroid.

I was put on levothyroxine (a daily tablet that helps replace the bodies missing hormone) I felt so relieved, I thought this was it. This was what the problem had been all along and now it was finally over. I could finally live a normal life. However, after 3 months of taking the levothyroxine, the problems were still very much there. I just didn’t feel as tired. I remember the sinking feeling of dread in my stomach as I realised that this was not it. I was going to have to keep fighting for the answers. This was proven when I was 29. I was due a routine implant change, this time I requested it to be done in one sitting: one out one in. I assumed it would continue to mask the pain while I kept digging for answers. I was wrong. Very wrong.!

It Took a Turn

I woke up one day feeling pretty poorly and as the day went on, I just kept getting worse, so I decided to make an urgent GP appointment. I went in, described the problem and was prescribed antibiotics for a suspected UTI. She also referred me for a gyn specialist appointment at a later date, given the extensive history of my gynae related complaints. That evening the pain got worse. Honestly, it is hard to describe the pain but it was intense abdominal cramping, severe lower back pain radiating into my thighs, shooting pains up inside my pubic area, fever chills, migraine and sickness and it just kept getting worse so I went to A&E. on arrival I was in so much pain I wasn’t able to give the receptionist the name let alone anything else, I held onto the desk cowered over trying to stop myself falling. She obviously realised the extent of the pain I was in as she came around from the desk with a colleague and they took me through to a triage room.

The nurse then tried to sit me down and that wasn’t possible, she then proceeded to take me straight through to a bed area and encouraged me to try to lie down. My body was in crippling pain from head to toe it was so intensely brutal that I passed out. When I gained consciousness, I was led on a hospital bed and as the pain was instantly there the nurse saw a slight opening and managed to help me take some tramadol. Once these had kicked in, I was able to explain the situation to the nurse. She proceeded to take some bloods and I was able (with aid) to give a urine sample. I then waited about 4 hours for a doctor and in those 4 hours I required more pain relief and ended up with a drip for morphine. When the doctor then came around, I was told I was to be transported up to the gynae specialist hospital as all of my symptoms were indicating a gynae related problem. I spent a long, traumatising and painful 15 days in that hospital.

At Its Worst

Whilst I was in hospital I had ultrasound scans, internal scans, urine tests and blood tests frequently, they couldn’t seem to find a cause. I was in so much relentless pain, I was on a drip of morphine as well as taking regular tramadol, naproxen, ibuprofen and paracetamol. I was also taking anti-sickness as I was vomiting. I could not sit, walk, eat, sleep, go to the toilet all I could was curl up in a ball on the bed or kneel on the floor doubled over in pain. That is how I spent the first 10 days of that hospital visit. I had never in my life felt pains like these in my life, including child birth. By day 12 the pain had started to lessen and I was able to at least lie down.

The doctor came around and told me they planned to discharge me as they could not see an obvious problem for my extensive pains. My bloods were showing signs of a slight pelvic infection. I asked what could have caused that and I was told the only reasonable explanation was the result of an STD. I argued that this was not the case as myself and husband had been together a long time and were faithful in our marriage.

The response I got: he smirked, widened his eyes, sighed and said “well let’s get a check done shall we”. I was gobsmacked. I asked if it could be endometriosis, he so much as laughed and denied this could be possible. I pleaded for him to just do a laparoscopy; I was there it made sense. He told me “Absolutely not necessary, none of your scans have shown signs of anything sinister, it would be a waste of time and resources”. I was then discharged on day 15, with no further communication from the doctor.

The nurse told me that no STD was found and therefore the reason for pelvic inflammation was unknown. I had so many questions I wanted to ask, I just did not have the strength or mental capacity to do so. Home, I came, where I spent another gruelling 13 days in bed trying to recover. Not long after I was back on my feet, I received a date for the gynae specialist referral consultation. I thought this is it. After everything I have just been through, with my history of problems, someone will finally listen to me. I will finally be recognised and start to get help and answers. How naive of me.

I Broke

That gyn specialist appointment broke me. It is a day (like so many of these days) that will forever stay in my head, it will haunt me forever. I cannot forget or forgive it. I went in and told the consultant everything. Going right back to the start when I got diagnosed with PCOS up until the recent hospital visit, where there was no obvious reason for all the pain I had

suffered or what cause a pelvic infection. I had to hold back the tears throughout the whole thing. He listened intently and when I was done, he told me he wanted to help me. He asked some questions and did an external scan which of course showed nothing.

He told me it was likely IBS (irritable bowel syndrome). I could not believe it, I asked how IBS could possibly cause some of the pubic pain I had experienced. He told me IBS can cause pain all across that area. I did not deny that I likely have IBS as it runs in my family however I was adamant that was not the cause of all of this. That cannot be the reason I have had to take so much time off work or been too ill to be able to functionally be with my children.

I asked him to refer me for a laparoscopy and with a pitiful, sarcastic smile he simply said “Samantha, I hear you, but this is just IBS”. I shut down. How many more times, how many more years could I fight to repeatedly be pushed back down? This appointment took part of me a spark in me away mentally and I am still trying to get that spark back even today.

The Fight Was Done

A couple of months after that horrific appointment, I found myself in A&E again with exactly the same problems as before. Except this time, I was left in the waiting area. I curled up in a ball on the floor with my sick jug and just waited. When I was finally called through to triage after 6 hours, I was not physically able to get myself off the floor. Two men who were nearby, also waiting for treatment, realised the situation and pretty much picked me up of the floor and carried me over. The nurse immediately realised the extent of the problem when I was plonked in front of her and with help she took me straight through to a bed where I had a cannula fitted to receive medicine for the pain.

After a short while we discussed why I was there and my extensive history. She prescribed me and wrote me a repeat prescription for mefenamic acid and codeine, I was also put on an urgent referral list for a scan of the ovaries, kidneys, bladder and bowel. Then I was sent away with no explanation or reason as to why this was happening again. I went home and suffered for about 3 weeks.

The scan date came, I went, it showed all clear, as I knew it would. It was here that my fire had burnt out. My fight had completely gone, there was nothing left anymore other to accept a life of pain and problems with no real answers. I spent the next 3-4 years regularly taking codeine and mefenamic acid. By regularly I mean 70% of each month I would take these back to back to manage the pain and still be un able to cope with everyday life.

For My Daughter

I am now 31 years old and my implant is due a routine change. My daughter is now headed towards her pubescent years and the fear that erupted inside of me the first time I realised that all of this could happen to her, was tremendous. I can not watch her spend her life going through this, I cannot watch her have the same journey I have had. I have to get answers for myself in order to help her future. My fight was back and with the strongest most fierce determination. I know there is a chance she might have endometriosis and my hope is that if I have medical documentation they will have to take her seriously if she even complains of these symptoms, at least that is my hope.

I wish I had someone to fight by my side, fight with me, help me (my husband was fantastic but I did 90% of these appointments by myself as he needed to be with our young children). Fighting this journey alone with no answers is not something I will ever let my daughter do.! I was ready to fight for my body and not give up. I make a routine appointment with the GP and we discuss everything in great detail, the entire history. I was so ready to be faced with denial I remember how tense my entire body was in that room. instead her response made me blub as she told me she believed me, she agreed with me. “I most definitely think this is endometriosis and we need to get the figured out now. Enough is enough.!” She was so determined and it felt bizarre.

All I had ever heard was no, no, no, excuse, excuse, excuse. This was unknown territory. I decided to take the implant out and not put a new one in. I knew the risk of this as the implant was acting as my biggest form of pain relief, but I didn’t want to mask this anymore, I needed them to see what this was doing to my body. If I ended up in hospital again, enduring that un describable, un bearable pain, then so be it. That doctor referred me for a gynae specialist consultation, at a different hospital that the previous one. What I learnt at a later date, was that she had also put me on the wait list for a diagnostic laparoscopy.

The consultation came and once again I felt ready to fight, I felt tense with the knowledge that I was going to be dismissed again. Again, I was wrong. I was met with absolute support, sympathy, care; the things id never expected after the years or trauma. I was in disbelief that after 15years, not 1 but 2 medical professionals were listening and hearing my cries for help. I was finally being heard and it felt alien to me.

The Truth I Knew

Here we are in February 2026 and I am finally having my diagnostic laparoscopy. I had been asking for this procedure for years but I was terrified, for a multitude of reasons. 2 of my biggest fears were polar opposites; I was worried they would not find anything and I would be faced with the reality that this was all in my head (that is what years upon years of dismissal had caused) and on the other hand I was so worried about what they would find, knowing that this has been going on for 15years, how bad was it going to be.!?

Surgery went well. I was under the impression it would be about 45minutes in reality it took 3 hours. It was not at all in my head. The years of complaints and problems were valid. It was there, very there and very real. I am still trying to understand this so will explain it the best way I can;

I had to have a bilateral ureterolysis; this is a surgical procedure that releases both ureters from surrounding restrictive tissue/fibrotic tissue to relieve obstruction and prevent kidney damage. This was needed due to the ‘DIE’ (deep infiltrating endometriosis) they found.

They also found superficial endometriosis in the bilateral ovarian fossa. This is where the endometriosis adhesions cause the ovaries to adhere to to pelvic sidewall or the back of the uterus. Endometriosis in this area causes major chronic severe pelvic pain, deep dyspareunia (pain during intimacy), severe dysmenorrhea (menstrual pain) and fertility or reduced fertility.

From what I can understand, some of the adhesions had also started to latch onto my organs on a fairly large scale. They removed my visceral peritoneum(inner layer of serous membrane that directly covers, wraps and supports abdominal organs such as, the stomach, liver and intestines) as it was infested by black spots. Part of the visceral peritoneum has been sent of for a biopsy.

As of now, I await the histology. 4 weeks post surgery I rang the hospital to get an update of when to expect this report. They are still testing. I have a follow up appointment with a specialist in May, where we will discuss how I move forwards in regards to what the biopsy shows. While I hope my journey is over. It is very realistic that this is just the start of the journey.

The Reality

It is important for me to express that only a minor handful of my doctor appointments, specialist appointments, scans and hospital visits are documented in this and that the reality is that there were 100’s more over the course of 15years. The ones in this piece are the ones that stick most mentally, but every single appointment I ever attended has affected me and left emotional scars.

The most common dismissal I received was “the scan shows nothing, so there cannot be a problem”. It is known (not well enough clearly) the only way you can determine endometriosis is either an MRI or a laparoscopy, it does not show on a scan. Other excuses I heard over the years were, IBS, the sciatica I developed with my second pregnancy was the cause, I was stressed and needed to try to relax, I had trapped wind, depression, it was in my head, I’m being dramatic, and more.

I spent 3/4 years on repeat prescription for codeine and took it regularly. This is a drug highly addictive and not at all intended for continual long term use as it poses risk of physical and psychological addiction, severe chronic constipation, potential liver damage, the risk of hyperalgesia(increased pain sensitivity), respiratory depression, fertility issues and severe withdrawal symptoms.

I also spent 3/4 years on repeat prescription and regularly using mefenamic acid. Another drug not intended for long term use as it poses risks of serious gastrointestinal bleeding, kidney injury and cardiovascular events; such as heart attacks and strokes. I took these drugs regularly and have no idea what affect they may have had on my body, perhaps nothing but perhaps later down the line I will face issues as a result of the excessive use of the drugs.

If they had listened to me all those years ago, it is likely I would not have had to take these drugs for so many years, had to seriously adapt my work life, have to adapt our family life, our marriage just my life in general. My biggest regret is what my children witnessed me go through, no child should see there parent in that much pain, how helpless they must have felt. I can never forgive that. It is likely they would have found the endometriosis when it was just scar tissue as opposed to having spread and causing my insides to be (somewhat) riddled with it, both deep and superficial. As a result of there negligence I am here after 15+years on, waiting for a biopsy result.

From what I gather my fertility has been damaged as a result of this not being found sooner. This infuriates me. I am so so grateful and relieved that I was able to have my children when I did. As the reality is if I would have waited, I would not longer be able to. Having that right to have babies taken away as a woman is cruel. Its unfair and when it could have been prevented, its anger. So many emotions play into this journey. The biggest one is sorrow. I feel sad for the woman sat here writing this, really realising for there first time that this fight has been her entire life and is still not over.!

Looking back

I have decided to document my journey and share it in the hope that I can help other women experiencing a similar journey. It has been traumatic writing this as I have relieved parts of my life that I had buried and never wanted to go back to, but I had to. For more than 15 years I fought for my body, I knew from a young age that I had a problem. So many times I had to pick myself up and keep on going when my body was exhausted, my mind broken.

So many times my husband would be the person picking me up, encouraging me to continue the fight. My husband has been by my side every step of this journey, when he could not be there physically, he was always there emotionally. He was one of the only people who never doubted me, never disbelieved what I was saying, he lived this journey with me, he suffered, he sacrificed and I will eternally be grateful for him.

He was my absolute rock throughout all of this. Countless professionals has dismissed me, ignored me, belittled me, intimidated me, patronised me, brushed me aside and treated me with such arrogance. We are supposed to trust the people who are medically trained to look after us and our health, but for me so many have let me down. I have been let down my friends and family who have also refused to believe my cries for help, I’ve been accused of being dramatic, selfish, ignorant and weak.

I will forever feel so much warmth and gratefulness to the 2 women, medical professionals who did believe me. To the ones who let me down.. you did this, you caused a young girl to have to live a life of pain and confusion, you caused my future to be unclear.

What Endometriosis is

Endometriosis is a daily invisible battle. It is exhaustion taking over every part of your body. It is smiling and burying the pain or hiding when you cannot so people don’t call you dramatic or selfish. It is the torture of not being heard or believed by medical professionals or loved ones. It is the struggle to comprehend that you cannot live life exactly the way you wanted. For lots: its the sorrowful sacrifice of children. Its having to take a variety of medication everywhere you go. For most, the realisation that the fight for answers has been our entire lives and has the ability to come back at any point to bully us all over again.

For the ladies who suffer from this condition, for ladies who are fighting there journey for answers. I see you.! I see the battle you endure everyday. I see the mental scars and the trauma your journey has caused and left. I see and understand the mask you wear. I know you have the fight in you because you fight everyday. Do not give up, do not doubt yourself, do not question yourself.! You are an incredibly strong woman who is having to live life with an extremely cruel debilitating condition. I hear you. I see you. I understand you.

Endometriosis is more than a bad period or a sometimes problem. Its a medical condition that affects every part of your life physically and mentally. The world, medical institutions and people are waking up to this reality and with more stories being told and more voices being heard, we can help future generations fight this battle with confidence and not have to endure the trauma we have. Let me hear you.!

Thank you.

Relived and written by Samantha Edgington

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As a fellow person with endometriosis I, Sophie, know this feeling well.

When I was recovering from my surgery, I experienced exhaustion on a level I’d never experienced before. Even before the surgery, I had low energy and was often tired, even though I was resting a lot. At least, I thought I was. I was sleeping enough, I wasn’t doing any strenuous exercise, I didn’t pick up a million side projects. By any available metric, I was resting, I thought. I wondered why I was still feeling as if I’d run a marathon.

What I didn’t fully understand then — and what took me a while to piece together — is that living with endometriosis changes the baseline. When your body is managing chronic inflammation, hormonal fluctuations, and pain that is always there, “rest” by conventional standards is often just not enough. We’re not starting from the same place as someone without a chronic illness.

This led me to explore what ‘rest’ really means, and why I was potentially doing it wrong. After all, everyone who knows me has at one time or another uttered the words, “I don’t think rest means what you think it means.” Friends and family will confirm I am notoriously terrible at resting.

I thought they were joking. But I learned something that I had been avoiding for a while: that I do not know how to rest.

So, I researched. I came across the work of Saundra Dalton-Smith, who wrote a whole book about resting: Sacred Rest: Recover Your Life, Renew Your Energy, Restore Your Sanity.

Her central argument is that saying “I’m tired” doesn’t actually tell us anything. It doesn’t let us know what’s really going on. It’s a signal, like pain in the body tells us there’s something physically wrong. But it’s only the start of the story, a place to begin before we uncover what’s really underneath.

For those of us with endometriosis, this reframe matters enormously. We’ve spent years being told our tiredness isn’t real, isn’t that bad, isn’t a reason to slow down. Learning to take the signal seriously and then actually investigate what’s underneath is its own kind of work.

Saundra Dalton-Smith lets us know that there are seven types of rest: physical, mental, emotional, sensory, social, creative, and spiritual rest. This was eye-opening for me: I was only focusing on one part of the problem.

Physical rest: Physical tiredness is likely the most recognised form of tiredness. When our body is tired, we can rest actively by doing gentle yoga or stretching or we can rest passively by sleeping. For those of us with endometriosis, this one is complicated. The fatigue that comes with endo isn’t just muscle tiredness, but rather it’s the systemic exhaustion of a body that is working overtime, managing inflammation, managing pain, managing hormones. Passive rest is often not optional. But I’ve also found that very gentle movement, like a short walk or some slow stretching, can sometimes help more than lying still, on the days when my body allows it.

Mental rest: Mental rest is a big one for me. I have a demanding day job and a very active mind. I’m always coming up with new ideas and love learning about anything and everything. It’s hard to turn it all off at night. Mental rest deficit shows up when you have racing thoughts you can’t quiet. Mindfulness and meditation are good examples of mental rest. With endometriosis, I’d add: the mental load of managing a chronic illness is enormous and almost never counted. Tracking symptoms, researching treatments, preparing for appointments, advocating for yourself in medical settings. It all takes up time and precious energy.

Emotional rest: This is the type of rest we experience when we can be our true authentic self, when we don’t have to hide our thoughts and feelings to make others more comfortable. With endometriosis, emotional rest also means not having to explain yourself. Not having to justify why you cancelled, why you’re tired again, why you can’t just push through. The relief of being with someone who simply already knows.

Social rest: It’s important to ensure we don’t feel isolated or alone. I’m an introvert, so I often need more time to recharge after connecting with others. This doesn’t mean however that I don’t want to connect with anyone. For this type of rest, it’s important to evaluate which relationships are bringing you energy and which are draining it. This becomes especially relevant with a chronic illness. Some people in your life will require you to perform, and that is exhausting. Prioritise the ones who don’t.

Sensory rest: Our world nowadays can be incredibly loud. Street noises, bright office lights, constant notifications on our phone, background music, noisy colleagues in the office. By the end of the day, our brains have had a lot of sensory input. I get very easily overwhelmed, and often, after a busy day at work, I need a deliberate period of sensory rest before I can start my evening. If I ignore this, I tend to feel agitated and exhausted. It’s worth noting that many people with endometriosis also experience heightened sensory sensitivity, particularly around flares. This isn’t imaginary, and deliberately reducing sensory input on those days is a legitimate and useful form of rest.

Creative rest: Creative rest is my current favourite, and relatively recently discovered, type of rest. This is the rest we experience when we allow beauty into our lives. You don’t have to be creative for this type of rest. Beauty can be experienced anywhere, for example by taking a walk outside in nature. On days when endometriosis has you horizontal, this might be as small as a good podcast, a window with a view, or a book that makes you smile. Art is accessible even on the hard days. It doesn’t require you to be well.

Spiritual rest: This does not have to be faith-based spirituality. Spiritual rest can be about your purpose, your why and having a sense of belonging. For those of us navigating a chronic illness, the sense of purpose can sometimes take a hit. It’s hard to feel connected to your ‘why’ when you’re just trying to get through the day. The trick is in appreciating the small things in life: finding one thing you are grateful for, finding beauty in nature around you, connecting with a like minded person.

Living with endometriosis already requires us to become experts in our own bodies. This framework just extends that expertise a little further: from “what hurts” to “what’s actually running dry.”

Next time you feel tired, I’d invite you to use it to dig a little deeper. To get curious. What actually ran out? Was it your body, your mind, your emotional reserves, your need for silence, your need for beauty? Knowing the difference won’t fix everything. But it might help you give yourself the right kind of rest, instead of the kind that leaves you just as hollow come Monday morning.

Written by: Sophie S.

Sophie is a proud member of the FLARE team and also the author of This Is Sophie Today. Her Substack focuses on reconnecting with creativity, slow living and going analog for busy professionals. Sophie has lived with Endometriosis for twenty years and wants to share her experiences with the community, to support others living with this illness.

Pain is the most visible part of the condition. It’s the part that can be measured in symptoms, appointments, and treatments.

But pain is only one part of the landscape.

Living with endometriosis also means navigating an emotional terrain that is rarely discussed in the same depth.

There is frustration — the kind that builds slowly over time when answers take years to find.

There is grief — not always dramatic or obvious, but quiet and persistent. The grief of plans that need to change. The grief of realizing your body may move through life differently than you once imagined.

There is uncertainty.

Chronic illness introduces a kind of unpredictability that can reshape how someone approaches everyday life. Plans become tentative. Energy becomes something that must be carefully managed. A simple decision like committing to an event, a project, or even a day out can involve calculations that most people never have to consider.

And yet, alongside those experiences, there are other parts of the landscape too.

There is resilience.

Not the dramatic, heroic kind often portrayed in inspirational stories, but a quieter version that appears in ordinary moments. The decision to keep moving forward. The ability to adapt when circumstances change.

The creativity that sometimes emerges from finding new ways to navigate the world.

Many people living with endometriosis also develop a heightened awareness of what truly matters.

When energy is limited, priorities become clearer.

Time, relationships, creative expression, and meaningful connection often take on deeper significance. This is one of the ideas at the heart of FLARE.

Endometriosis is a medical condition, but it is also a human experience.

It affects how people move through the world, how they relate to their bodies, and how they imagine their futures.

Spaces that allow people to explore that experience — through storytelling, art, reflection, and shared voices — are still surprisingly rare.

FLARE Journal exists to help create one of those spaces.

A place where the emotional, creative, and personal landscapes of endometriosis can be explored openly.

Because when stories are shared, something powerful happens. Experiences that once felt isolating begin to feel recognizable.

And recognition has the ability to transform isolation into connection.

This work is deeply personal to me. My journey with endometriosis has been filled with years of pain, uncertainty, and learning how to live in a body that doesn’t always feel like my own. But just two weeks ago, while I was in the ICU, everything shifted—I created FLARE.

What started in one of the lowest moments of my life has completely turned it upside down in the most unexpected way. FLARE has given my pain purpose. It’s become a space where stories are honored, voices are heard, and creativity becomes a form of healing.

I’m here not just to share my own experience, but to help others feel seen, supported, and empowered—and to create, together, art that speaks louder than words ever could.

If you are here reading this, you are already part of that conversation.

And conversations like this have the power to change how illness — and resilience — are understood.

Thank you for being here.

Keep creating, Keep healing 💛

— Priscilla

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