Kylie - Australia

It was a journey filled with widespread pain, uncertainty, research and the determination to find answers when my body was telling me that something was seriously wrong. It all started in 2024 where I felt I could’ve possibly had a vaginal prolapse, I then had an awful tear in a shoulder tendon. I felt I needed to stop with the gym and heavy weights and try Reformer Pilates which I did for 3 months. I was feeling strong and fit. I then got Influenza A sick for 3 weeks and noticed I had chronic back pain. Once I recovered I returned to Pilates only to then have this back pain flare up to the point that was then starting to affect my legs and balance. It was frightening! There were times I could barely walk. By June 2025, I was experiencing significant pain and a growing range of symptoms that were affecting my everyday life. My back, buttocks, abdomen , pelvis and legs were all causing considerable discomfort, alongside my abdominal pain which was something I’d never experienced and other problems that I was struggling to make sense of. I’m an Aesthetician having my home based Business for over 26yrs. I worked covered in 3 compression belts to hold my torso in tight and up to ease some of my pelvic and abdominal pain. Performing my treatments on every client I was in pain but I had to push through and make an income. Purely due to my Lawyers fees as I was going into my 5th year in a high conflict Divorce. I had so many doctors appointments where they just threw all sorts of drugs to me yet nothing was easing my pains. I needed answers. I needed to understand what was happening inside my body and why my quality of life was deteriorating. It wasn’t until affecting my ability to earn an income and provide for myself and my 3 teenagers I have 100% care of became a problem. Come August I had debilitating pain and ended up in an ambulance only to sit in ER for 6.5hrs visually suffering. I had a mother of a son also waiting in emergency who was a nurse, she could see I was in incredible pain and asked staff to give me pain killers. I was offered ketamine I believe and passed out. Emergency team took me through hours later, the doctor said it’s constipation. I couldn’t lay flat so they gave me more ketamine for my MRI. No Tarlov Cyst noted. I left the hospital with no answers. I had to Become my own researcher and advocate. As I searched for answers, I began looking more closely at my reports. I wanted to understand the medical terminology, the significance of the findings and whether there could be a connection between what was showing up on my scans and what I was experiencing physically. I was determined to learn as much as I could. Come September 2025 a Pelvic MRI noted Tarlov Cyst. My GP said it’s a benign cyst and nothing to worry about. I then asked my GP for what ended up being 4 Neurosurgeon referrals. Of course I was triaged. 3 receptionists called to tell me that particular Surgeon doesn’t deal with Tarlov Cysts, I then had a direct call from one Perth Neurosurgeon that kindly spoke to me in lengths about how my back looked amazing for my age and the Tarlov Cyst was nothing to consider. During this process, I discovered Facebook groups for people living with Tarlov cysts. I began asking questions, listening to other patients’ experiences and learning from people how similar they were to me. These groups became an important source of information and direction for me. Through conversations with other patients, I was directed towards Dr Kirsty Hamilton in Sydney New South Wales, Australia a neurosurgeon who treats Tarlov cysts. This was a significant turning point. Other patients had helped me identify a specialist worth approaching. I took that information to my general practitioner but again it was dismissed but I requested a referral to Dr Hamilton. My findings involved my lower spine disc herniation L4/L5 S1 , I continued pursuing specialist assessment because I wanted to understand whether this could be contributing to my pain and disability. My MRI noted sacral perineural cysts associated with the right S2 nerve root and the S3 nerve root. My NeuroSurgeon recommended a procedural Diagnostic Nerve Root Block of my S3 Nerve. I had 2hrs of heaven. I could stand still in one spot, walk well and had no balance issues. This confirmed my S3 Sacral Tarlov Cyst was the culprit. I had another Telehealth appointment with my Surgeon in NSW and she kindly booked me in for surgery January 6th 2025. At this time I was in the thick of my Divorce proceedings getting affidavits ready for August Trial for property settlement. It was hell! My bills were in the tens of thousands, I couldn’t work and then I had to find about $20,000 for the operation, flights and accommodation. My Health Cover would only cover my excess of $750 because they considered my Tarlov Cyst surgery “elective surgery “ This is one thing that needs to change. We become bedridden! How is that “elective” At this point I became bedridden again and had to file for unemployment benefits as I was forced to close my business down. Come New Year’s Eve 2025 I travelled from Perth Western Australia to New South Wales for surgery. On 6 January 2026, I underwent sacral Tarlov cyst wrapping surgery with Dr Kirsty Hamilton at St Vincent’s Hospital in Sydney. My surgeon said I had 3 cysts but only 1 needed wrapping. She also said my larger cyst @1.2cm was effecting both sides (Bilateral) I initially had 4 days in hospital but my pain wasn’t managed and I stayed an extra night. I then needed to stay close by incase of a Spinal fluid leak. I was ready for home by now but walking and sitting was incredibly painful and I still had a flight to get home. I took extra pain meds to be able to fall asleep during flight. The reality of recovery has been challenging to say the least. A rocky road and still struggling at 10 months. Chronic pelvic pain, pain sitting, painful legs, hips, leg cramps, buttocks and back, plus sciatica and foot pain. My recovery has not followed the simple, predictable path that people might imagine after an operation. Living with persistent pain after surgery has been physically and emotionally challenging. It has also reinforced how important it is for patients to receive realistic information, appropriate follow-up and support throughout their treatment and recovery. Why I want to tell my story The people I encountered through Tarlov cyst Facebook groups helped direct me towards a specialist, and that guidance became an important step in my journey. I want to help raise awareness of Tarlov Cyst Disease in Australia, encourage further research and create more opportunities for patients to find information and support. I do not want another person to feel that they are alone in trying to understand what is happening to them. Every patient’s experience is different. Not every Tarlov cyst causes symptoms, and not every patient will need surgery. But people experiencing potentially cyst-related symptoms deserve careful assessment, to have their concerns taken seriously and to receive clear information about their options. My journey is still unfolding. I am continuing to navigate the effects of chronic pain every day and the uncertainty that can come with recovery. I’ve been told patients with Pelvic pain tend to have slower healing nerves which is unfortunately me. If sharing my experience helps another person ask an important question, seek an appropriate referral or feel less alone, then speaking up will have been worthwhile. This is my story. It is a story of pain, persistence, patient-to-patient support and the determination to find answers. And it is only the beginning of my commitment to raising awareness of Tarlov Cyst Disease in Australia.

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That's why i'm joining the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.