The Early Years

I was born in Hobart, Tasmania, in 1965.

My mother used to tell me I was a child of very little words until I was three years old. She worried enough to visit doctors frequently, and they reassured her I was simply a slow speaker — that perhaps some early trauma had contributed to the delay. Once I started kindergarten, she said, it seemed like nothing was ever wrong.

But there were signs, even then, that something in my small body was not quite right. I had frequent nightmares. Close calls of nearly wetting the bed. Mishaps that continued until I was five, going on six.

The body remembers what the mind cannot yet name.

Around age seven or eight — and even now at sixty, I can relive it — I began experiencing deeply painful stomach cramps accompanied by a dull, ugly ache in my lower back. The episodes were severe enough to leave me curled in a ball for up to three days at a time. At first, my mother thought I was trying to avoid school. It was only when I spent an entire weekend in bed that she knew something was genuinely wrong.

She took me to two local GPs. Neither ordered X-rays. Neither offered any explanation beyond "growing pains." They told her to give me warm baths to soothe the discomfort.

After about eighteen months of these recurring episodes, a third doctor conducted a physical examination — more thorough than anything the others had done — and declared I had a twisted bowel. He told my mother I would grow out of it. He tapped me on the head and said, "You'll be okay."

It was the early 1970s. Who were we to question him?

I know now, looking back with the knowledge I have finally been given, that both my mother and I were being dismissed — not out of cruelty, but out of ignorance. This was before computers. Before the internet. Before Google was even a thought. Doctors worked from what they knew, and what they knew about a young girl's back pain was apparently very little.

I loved swimming. We had an above-ground pool, and in the summer months the water offered real relief from the pain. But in Hobart, winter swimming was out of the question. So, as people did in those days, I learned to live with it. To be strong. I came from a hardworking family where no one complained. My parents and grandparents were clear: complainers are not taken seriously. Complainers are labelled whiners.

And so I learned silence. A silence that would last five decades.

When the Body Falls

I was ten years old when I joined the gymnastics team.

I loved it with everything I had — the movement, the discipline, the joy of it. But I noticed early that some movements I simply could not undertake properly. There were things my body refused to do the way the others could, and I couldn't understand why.

Then came the day I ran for a somersault and landed on my back. I was winded. I couldn't move. The school rang an ambulance and my mother. I was scared in a way that felt different from ordinary childhood fear — something just didn't feel right inside me.

We waited six hours in the emergency department of the Royal Hobart Hospital. They took X-rays and told my mother nothing appeared broken. The diagnosis? Flat back syndrome — the reason my back wouldn't tuck properly during the somersault. Their advice was simple: give up gymnastics.

I protested. Something had felt like it moved in my back. They told me I had pulled a muscle and sent me home with instructions for bed rest and no heavy activities.

As a child, you roll with what's happening. You move on. I took up softball and netball in Primary school, and I was good at them. I played short stop and pitcher in grades five and six. I loved it — though pitching always felt awkward, that twisting motion and the step forward always felt wrong on my body.

Netball brought its own challenges. The sudden stops hurt my right leg. But I was not going to stop. Not for anything.

In my early teenage years I began suffering from what my grandmother called a "rye neck" — waking up unable to move or turn my head at all. She would position her red lamp facing my neck to help with the pain. Doctors told me I must have slept wrong or moved wrong. But it kept happening, regularly, and no one could pin down why. My body was speaking. No one was listening.

High School and Hidden Pain

High school brought basketball — and with it, a new love and a new set of challenges.

I played for the school team in junior years, then with a professional team in the later years of high school. My position was guard: the one who brought the ball up the court, weaving through opposition players, looking for openings. At only five foot and a half inch tall, getting a goal myself meant jumping as high as I possibly could.

I always felt awkward bouncing the ball in my left hand and trying to move around opponents on my right side. Turning to the right never felt natural. After games, I would struggle to catch my breath, my face flushing tomato-red. My body was working twice as hard as it should have been to do what I was asking of it.

I also loved art, and at one point had planned a career as a commercial artist. But standing bent over a school desk for any length of time was agony. I couldn't straighten up afterward — it felt as though my back had locked into the bent position, and trying to stand upright felt like something was going to break in half.

Standing in school assembly was painful. Waiting in the canteen line was painful. Walking on uneven ground made me ache. I developed a habit of leaning to my left side just to bear the weight of standing tall.

Late 1970s, early 1980s. No internet. No answers. Only doctors who looked at a young girl who appeared healthy on the outside and found nothing to report.

I learned something in those years that would stay with me far too long: suffering silently is easier than being dismissed. And I became very, very good at suffering silently.

The Life I Built

In 1981, I met the love of my life. My best friend. My soul mate.

We married in 1985, and he supported me in everything I wanted to do. He has been beside me through every dark chapter of this story, and without him I am not sure I would have survived to write it.

At the time, I was working in retail, selling fabric — my mother was a tailoress who owned her own fabric store, and I had grown up surrounded by the craft. I found a new passion in sewing, learning to draft patterns, teaching stretch sewing classes, and training myself to look at garments in stores and go home and recreate them from scratch. Back then, it was a considerable saving.

But sitting for any length of time took its toll on my neck and tailbone. I used to wonder why — my mother sewed too, and never complained. My grandmother was a carpenter's wife who worked incredibly hard and never suffered as I did. I had no explanation. I simply kept going.

In July 1985, I gave birth to my first daughter.

I was small — fifty-nine kilos full term. My labour lasted thirty-six hours in total, stalling at the fifteen-hour mark when dilation simply stopped. The pain was relentless and it was all in my back. The delivery doctors offered little help, and at times I felt judged for being young and vocal about my pain. I had a normal birth in the end, but it felt like splitting in two, and something felt wrong that no one acknowledged.

The delivery doctor was blunt to the point of cruelty: "You are no different from anyone else here to have a baby."

By 1988, I was juggling three jobs — curtain manufacture from home, a weekend retail position, and night shift at Cadbury's. The curtain fabric alone was sometimes heavier than I was. My neck needed monthly realignments. X-rays showed the same flat back, fused tailbone, and a cervical spine, according to one doctor, that looked like that of an eighty-year-old.

I was twenty-three.

My second daughter arrived at the end of 1989 — another back-pain labour, another dismissal. Afterward, the abdominal pain of my childhood returned with a monthly intensity that could bend me double and make walking almost impossible. The doctor told me it was one of those things. I was twenty-five and being told to go to bed.

I got on with it. Because that is what I knew how to do.

The Years of Just Enduring

The 1990s brought a new home, new work, and the same unrelenting pain.

We moved into our newly built house in 1992. I landscaped the front yard — moving rock and dirt, building tiered rockeries, planting gardens — all while managing pain that came and went but never truly left. My father was dying of cancer that year, and he saw the finished front yard before he passed. I am grateful for that.

I tried everything. Cupping. Acupuncture. Ultrasound. Nothing helped. I kept playing basketball socially at the YMCA until I was thirty-seven. I took up leadlight glass at an adult education college, spending two nights a week bent over old wooden desks cutting glass and laying lead — and often needing fellow students to help me straighten back up at the end of a session.

"You're too young for this to happen," they told me.

In 1994 my husband took me back to the GP and said plainly: "She is never sick. Our trips here are always for pain."

New X-rays. New tests. Same result: flat back, fused tailbone, arthritic neck. The knee — swollen and giving way for no explained reason — showed nothing on imaging. The doctor suggested I give up my career. He did, at least, refer me for an MRI — one of the first installed in the state.

Even the MRI showed nothing actionable.

Looking at those same X-rays now, in 2026, I can clearly see the fused LSTV, the dislocated tailbone, the herniated C6 disc, and an L6 vertebra that was never once reported. It was there all along. Hidden in plain sight. Missed, or ignored, or simply unknown.

In 1996 I was finally referred to a gynaecologist. After examination he told me I needed a hysterectomy — but that I was too young and would need to wait until I was thirty-five. I was twenty-nine. Another six years of pain, by appointment.

In January 2000 I hung up my curtain manufacturing and took a position as Finance Manager at Tasmania’s Leading Funeral Home Millingtons. I still had to sit for a good part of my day but I still got to move around. This position was very forfiling and was very interesting to say the least.

In July 2001 I had the hysterectomy. Coming out of recovery I had to ask the nurse to roll me off my back because the tailbone pain was unbearable. They found I was allergic to morphine — something no one had thought to note or test for — and so they gave me paracetamol.

Good old paracetamol. Supposed to fix everything.

The following twelve months were, relatively speaking, better. The abdominal pain eased significantly. The back pain was still there, still responding to movement and lifting and twisting, but it was easier to live with. I considered that a victory.

I had learned, by this point, to measure good days not by absence of pain — but by its manageability.

Reinvention and Resilience

I have always believed that a busy mind is a forward-moving mind.

In the early 2000s, my eldest daughter had qualified as a beauty therapist. I had always wanted to be a hairdresser and nail technician. In 2003, I took time off away from my full time position and I trained in Sydney in cosmetic tattooing and petite body tattoos. I approached a girlfriend who was a hairdresser, and together we opened a salon offering everything under one roof.

My clientele grew. The work was demanding — endless hours of tattooing, filing nails, sitting bent over clients. It was creating havoc on my tailbone and shoulders. But what was I supposed to do? I had given up my job at Millingtons and Doctor visits offered the same old story. And working for yourself means you can delegate on bad days.

At thirty-seven I began an apprenticeship in hairdressing. We moved into larger premises. I completed the paperwork for accreditation for our own training academy. I trained in training and assessment. I painted the salon, created training books, organised legislation and curriculum programs — all over four months — all while managing daily pain.

We had our first students in 2006. It was an achievement that brought genuine joy. And sleepless nights of back pain. But the joy was real.

Early 2006 we rode with a group on Harleys from Hobart through Victoria — the Great Ocean Road, Adelaide, Renmark, Mildura, Echuca. Two days in I could hardly walk. The tailbone and groin pain was unlike anything since the hysterectomy. Riding as a pillion passenger, I kept shifting my position until my husband said he feared we would tip over.

I bought one sheepskin. Then another. Then a third. By Adelaide I was perched on three sheepskins trying to find comfort that didn't fully exist. The pain was a constant pulling sensation — as though my pelvis was being dragged downward through my groin. The alcohol helped somewhat. The 38-degree pool in Mildura helped somewhat more.

Despite everything, we had a wonderful time. That has always been my way.

Queensland and the Breaking Point

By 2009 we were making plans for a new chapter. My husband was offered a position with a company in North Queensland, requiring us to relocate. We made the decision, sold our home in Hobart, packed everything, and moved to Queensland.

Life on the Gold Coast meant a new salon, new clients, new routines. The pain came with us, of course. By this stage it had become so embedded in my daily existence that it had simply become part of who I was. Flat back syndrome, they had told me. Arthritic neck. Fused tailbone. I had absorbed these labels and built my life around them.

We settled in Maryborough in 2018 — a town whose old buildings reminded us of Hobart. We bought a Queenslander. For those unfamiliar with the term, a Queenslander is a traditional elevated timber home, full of character and full of work.

At this stage We had a rockabilly business that I manufactured a range of clothing, and we attended all car meets, car shows, festivals and did the local markets. We travelled and with the new Queenslander my time was really busy between renovating, sewing and bookkeeping.

I threw myself into it. I painted inside and out. I climbed ladders. I built a deck, a fire pit area, seventy metres of timber fencing. I lost the use of my arm nailing the battens and had developed shoulder blade pain that hurt with every move and felt impossible to find a comfy spot to sleep. But I kept on going.

Mid-2021, I shovelled eight cubic metres of garden mulch. Then five cubic metres of loam. Then eleven cubic metres of road base gravel for the driveways. I know I was stupid but seeing what we had accomplished Is a beautiful feeling even in pain.

But Something happened, something really shifted and I knew my work was over.

Pain in my shoulder blades, my mid-spine, my lower back — pain that didn't resolve. I rested for weeks. The local GP had no knowledge of my history, ordered an X-ray, and reported back: "Lumbar lordosis maintained." He suggested I had pulled a muscle. I said: "This is not a muscle."He said I was fine.

Five months passed. No improvement. I was fifty-four years old and walking like someone in their nineties. Getting up from a seated position was agonising. It changed everything I couldn’t even sew. Sitting was agony, walking was agony. Hell laying in bed was agony.

Then came the day in Stocklands shopping centre. I nearly fell. My legs locked up. A burning sensation tore across my lower back and glutes, spreading to the tops of my thighs, and I felt as though I had been placed in a vice — everything tight, everything burning.

In all the years. In all the pain. I had never experienced that. I thought I was being paralysed from the waist down.

The Procedure That Changed Everything

A CT scan followed. The report described my findings as "mild" — and so the doctor offered facet joint injections. I was not shown the report. I was not given the report.

The first round of injections didn't work. The second, two months later May 2022, provided about seventy percent relief for nearly twelve months. I thought, naively, that I had found my answer.

In 2023 the cortisone injections lasted only twelve weeks. I requested a neurosurgeon consultation. He recommended medial branch nerve blocks, followed by radiofrequency ablation. He was confident. He was convincing. I did not know enough then to push back with the right questions.

The medial branch blocks in January 2024 helped somewhat but left me with unexpected weakness in my lumbar and mid-back. I raised my concern with the surgeon. What if the ablation makes this worse? He assured me it would not and told me that the weakness would pass. It didn’t but it eased.

April 4th, 2024. The radiofrequency ablation.

It was the most painful experience of my life. I was supposed to have 4 nerves each side of my lumbar spine to the S1 - 8 nerves in total. Two nerve paths felt like electrocution so severe they had to be abandoned entirely mid-procedure. But the damage was done.

I left that procedure with three numb toes on my left foot, an electric-shock sensation in my ankle that radiated into the foot when touched, sharp pain running along my right femur that made sleep impossible, and a point of pressure near what I now know as the sacralised S1 that, if pressed, could cause me to lose bladder control. It was a procedure that I nearly required being carried out.

The information sheet had said the sites might feel like sunburn.

It was not like sunburn.

For a week after the ablation the pain was traumatising. I could walk no more than approximately five metres. I could not stand for any meaningful period. I felt as though all my muscles had wasted. My knee pain worsened. There was no free moment without pain. I had walked into that clinic worse than when I arrived — and I left it immeasurably worse than I had walked in.

My telehealth follow-up with the neurosurgeon was a study in abandonment. He told me he had no idea what had happened. He said there was nothing he could do. He told my GP the same — that he had nothing more to offer in the way of a solution — and he closed the file.

The doctors who had, over decades, offered little in the way of explanation had now left me without the ability to walk properly and with no answers at all.

For the first time in fifty years of fighting, I began to wonder whether continuing on was worth it.

The Darkness

I need to write this because it is true, and because I know I am not the only one who has been here.

When pain is constant, relentless, and invisible — when no one can see it and no one believes it — something changes in your mind. It does not happen suddenly. It happens gradually, like erosion, one dismissed appointment at a time, one "your scans are clear" at a time.

I began to think that a diagnosis of cancer would be preferable. At least then there would be something visible. Something treatable. Something real that people could see and respond to.

I began to think that perhaps dying was for the best.

I am not ashamed to write that. I write it because it is the honest consequence of fifty years of an invisible disability, of a system that failed me, of being handed medication that caused severe allergic reactions, of a procedure that left me worse and a specialist who walked away. I write it because if you are reading this and you have been in that place — please know that you are not alone and you are not broken.

I had my family. I had my husband. I kept smiling because they did not have to endure what I endured.

But I was exhausted from the performance of being okay.

Medications had by this point left me with severe skin reactions — psoriasis, pustule rosacea triggered by tramadol (which I was told was unrelated to morphine, despite it being a synthetic opioid relative — research I had to do myself), cranial hyperhidrosis, and bruising across my arms so pronounced it looked as though I was on blood thinners. Tests found no cause. Even this, my doctors could not explain.

Something had happened to my central nervous system. I could feel it. And still, no one could tell me what.

When the Answer Finally Comes— The Word that Changed Everything

Mid-2024 brought a virtual physiotherapy appointment through Brisbane's largest hospital — a muscular-skeletal physiotherapist who proceeded to tell me my scans were clear, that if he had my back at fifty-eight he would be grateful, and that my pain might be "all in my head" — that I needed to train my brain not to focus on pain.

He told me I was not bad enough to see a surgeon. Infact he told me to lose weight, weight that I gained from a procedure that left me disabled. I could not walk and I was not bad enough.

I ended the call before I said something I would regret.

Furious, desperate, and determined — I downloaded all of my radiology reports and began searching the medical terminology myself. Report by report. Word by word. I could not believe what I was reading. Remembering until now this was never possible in the olden days I was simply told I had flat back syndrome and not given any reports.

Not one report since 2021 had identified transitional vertebrae. The best any of them offered was a brief mention of "sacralised L5." No doctor had ever connected this to my pain. No doctor had ever explained it.

And then the search returned a word I had never heard before. Bertolotti Syndrome.

I sat and read everything I could find. Every description sounded like me — every symptom, every dismissal, every pattern of pain that moved and shifted and defied simple explanation. I had been experiencing this since I was seven years old. Fifty years. Fifty years of my life.

I found the Bertolotti Syndrome education USA group on Facebook — the American group, and then the Australian group. I found the Wikipedia article. I found medical research papers. And in those groups, I found something I had not had in a very long time.

I found people who understood. And one person in particular the founder of the USA education group gave me hope, hope that I had lost and validation that I was not alone and that I needed to fight.

Not because they had degrees. Not because they were specialists. Because they lived it. And for the first time in my adult life I was not alone in this.

Fighting for the Right Tests

I took my research to my GP.

She had never heard of Bertolotti's either. She told me, honestly, that it was not covered in their training — that it was referred to as transitional vertebrae, and she apologised to me. Genuinely apologised.

It meant more than she may ever know.

I asked for a referral for a 3D CT scan and a standing full-spine X-ray. She agreed. When the 3D CT results came back, my GP was speechless.

"How could that not hurt?" she said.

"I have been complaining for forty-five to fifty years," I said. "And they have all told me I have flat back syndrome."

The standing X-ray — which, I must emphasise, not one doctor in all those decades had ever ordered — revealed everything. A sacralised L5 on the right. One side of the ilium higher than the other — hemipelvic elevation. One leg longer than the other. Anterolisthesis pushing me forward. A pelvis beginning to twist with early scoliosis curving to the left. Mild to moderate spondylosis through the cervical, thoracic, and lumbar spine. Facet joint arthropathy. Foraminal stenosis. Osteophytes. Multiple disc herniations. An altered sagittal balance pushing the upper body forward over the lower.

Dr Jenkins and the Diagnosis that finally came.

In June 2025, I had a long virtual appointment with Dr. Arthur Jenkins — a surgeon in the United States who had dedicated his practice and research to understanding Bertolotti Syndrome and lumbosacral transitional vertebrae.

He went through all of my X-rays, CT scans, and MRIs — My Last three years of imaging. He listed what he found. He gave me a plan.

And then — the finding that reframed my entire life: congenital cervical stenosis. A cervical canal narrower than normal from birth. Despite decades of X-rays and MRIs documenting my neck problems. Despite thirty years of complaints. Despite monthly neck manipulations that, as I later learned, could have killed me if performed incorrectly.

He explained that I had a Transitional T12 that had what he referred to as Riblets that essentially make the T12 actually an L1 and that mean’t in fact I had an L6. But no extra bone just that my thoracic was really only made up of 11 vertebrae instead of 12. Essentially I still had the normal amount of vertebrae. He then told me that my coccyx pain was due to the tip being broken and alittle further up it was dislocated.

Two congenital abnormalities. Present from birth. Never once identified. Never once connected to my pain. And as for the coccyx well it only took 31 years to find out.

He told me I required further diagnostic injections and emailed (uploaded the diagrams to my patient portal).

In September 2025 I had the first of three diagnostic injections into my pseudo-articulation and fused side due the hairline fractures I was sporting and one into my coccyx. The result was positive. Each subsequent injection — weeks apart — also returned a positive result for pain generation.

If a person were born with a foot facing outward, doctors would scramble to address it. Yet here in the twenty-first century, a woman with two documented congenital spinal anomalies was told, repeatedly, for fifty years, that she had nothing wrong. I couldnt believe what I was being told.

After more than fifty years from the age of seven, I finally had a diagnosis.

I have Bertolotti Syndrome. I am among the rarest classification of patients — approximately five percent of those with lumbosacral transitional vertebrae who are symptomatic. I also have a sacralised L6 and hairline fractures through the fused side.

Fifty years. One diagnosis. Confirmed at last.

I do not know yet who the right surgeon in Australia will be for what comes next. These procedures are not standard. The number of surgeons here with the specific training to operate correctly is limited, and too many patients have been made worse by operations performed without adequate understanding of the condition.

I am still finding my way forward. But for the first time in my life, I know what I am walking toward.

What was missed and why it matters

Looking back across six decades of my life, I can trace the threads that were missed, the signs that were there, and the moments where a different question — or a different level of curiosity — might have changed everything.

At seven, my back pain that curled me into a ball was dismissed as growing pains.

At ten, my gymnastics injury was labelled a pulled muscle and they told me the xray showed nothing out of the ordinary.

At fourteen, my Rye neck was called a sleeping position error.

At twenty-three, I was told I had the neck of an eighty-year-old and nothing to be done.

At Twenty Seven I was told my tailbone was perfect. and follow up Neck xray same as when I was 23.

At twenty-nine, I was told to wait six years for surgery. But was it necessary surgery as the hysterectomy revealed I still suffered with pain after.

At thirty-four, my X-rays were reviewed and nothing actionable was found — yet those same images, reviewed today, show the LSTV, the dislocated tailbone, the herniated disc.

At fifty-eight, I was told it was all in my head.

At sixty, I was finally told the truth.

What was missed was not obscure. It was not hidden behind rare medical knowledge. It was present in the imaging. It was described — partially — in report after report that no one connected. The word "sacralised" appeared in documents from 2020 onward. Not one doctor explained what that meant. Not one radiologist connected it to my history of pain.

No two radiology reports across my lifetime agreed on what they found. In a system built on reported findings, this is not a footnote — it is a crisis.

I am not an anomaly in this regard. The Bertolotti community is full of people with similar stories — decades of pain, mountains of reports, and a diagnosis that finally came only because they found each other on the internet and started asking their own questions.

To Those who are Still Searching

If you are reading this and you recognise yourself in these pages — the shifting pain, the dismissals, the labels that never quite fit, the waking up and putting on a smile for a world that cannot see what you are carrying — I want you to hear this:

You are not imagining it.

You are not weak.

You are not a whiner.

You are carrying something real, and you deserve real answers.

Here is what I wish someone had told me decades ago:

Ask for a standing full-spine X-ray. Not a standard lumbar series. A standing, weight-bearing, full-length spinal X-ray. This is the imaging that finally showed my truth.

Ask for a 3D CT scan of your lumbosacral junction. or A Ferguson Xray.

Research lumbosacral transitional vertebrae (LSTV) and Bertolotti Syndrome. Bring the research to your doctor. Do not be embarrassed to do so. You are your own best advocate.

Find your community. The Bertolotti Syndrome Facebook groups — both the international and Australian chapters — are a resource of lived experience and shared knowledge that no clinic has matched for me.

Trust what your body tells you. You have always known something was wrong. You were right.

To The Medical Community of Australia

I write this not in anger — though anger would be justified — but in hope.

Bertolotti Syndrome is not unknown. The research exists. Dr. Jenkins and his team Jenkins Neurospine along with Dr Steinmetz(Cleveland Clinic) , Dr Fogelson (Mayo Clinic), Dr Haines in the United States have done the work. The classification systems, the diagnostic pathways, the surgical approaches — the knowledge is there and even today still being improved.

What is missing is its reach.

In Australia, we are behind. Our large training hospitals, our radiology departments, our general practitioners,neurosurgeons Orthopedic Surgeons — many are operating without awareness of LSTV as a pain generator. The five percent of LSTV patients who are symptomatic are being dismissed, misdiagnosed, over-medicated, and subjected to inappropriate procedures — not because of malice, but because of a gap in training and curiosity.

When a patient presents with back pain and imaging shows transitional vertebrae, that connection must be made. It must be investigated. It must not be filed as an incidental finding and left unmentioned in a consultation.

I am calling on:

Medical schools to incorporate LSTV and Bertolotti Syndrome into spinal curriculum

Radiologists to flag LSTV in reports when present, and to note its potential clinical significance

GPs to listen when patients bring research to appointments, and to refer appropriately. Specialists to familiarise themselves with the Jenkins classification system and current surgical approaches along with further research by the larger clinics mentioned above.

The broader medical community to accept that a congenital anomaly is not automatically asymptomatic.

We are not making this up. We are not seeking attention. We are patients in genuine pain who have been let down by a system that should have caught us long before we fell this far.

Australia, it is time we are heard.

Still Here

I am still here.

After fifty years of pain, a procedure that caused new damage, medications that left permanent marks on my skin, a period of darkness I am not ashamed to name, and a system that failed me in ways that are difficult to fully articulate — I am still here.

I have a diagnosis. I have a community. I have a husband who has never once stopped believing me. I have daughters who have watched their mother fight and, I hope, learned something from it about persistence and self-advocacy. My eldest Daughter also learning she has LSTV too and has had pain since her late teens.

I have questions still to answer, surgeons still to find, procedures still to navigate. The road forward is not simple. It never has been and I also navigate my path forward in the hope that I can make my daughters road a little easier too.

But I know what I am dealing with now. And that changes everything.

This Story is not the end of my story. It is the beginning of a document I intend to keep adding to — as the journey continues, as the treatments evolve, as the answers come. If you have found your way to these pages and your story is still in its middle chapters, please know: keep going.

Fifty years is a long time to wait for the truth.

But the truth was always there.

©Tracey Bellette