Why EndoInsight Exists
This is Lavern's story. It took 21 years to get the right answer. EndoInsight exists so that journey is shorter for everyone who comes next.
It started at 11
Since I was 11, I had consistent abdominal pains, daily migraines, a resting heart rate of 125, and a weak immune system. I was the happiest teenager on Earth — despite the agony.
Doctors told me it was "stress." Then fibromyalgia. Then depression. Then IBS. Then muscle pain. Not one of those diagnoses involved a single test. I was fobbed off with antidepressants multiple times before I even turned 16 — every single time, I refused them. Six months without a period was described as "normal for stressed teens" and I was told I was "lucky." Yet I had pain whether or not I bled.
2008 — I was 18 and pregnant
I was admitted to ICU. I woke up a week later, stabilised, and was discharged with no follow-up. No explanation. No plan. Just sent home.
By 23, it was weekly
Monthly pain had turned weekly. Migraines were daily. I had seen specialists across musculoskeletal, orthopaedic, neurology, kidneys, liver, heart, lungs, bladder, bowel, and mental health. I had a colonoscopy, endoscopy, brain scan, spinal scans. Every organ was checked. Every organ except my uterus.
Why? How could a woman with natural births have any gynaecological issues?
My recurring chemical pregnancies — countless — between having four sons were never taken into consideration. By 27, before my fourth son, I naturally went into a perimenopausal state with all the classic symptoms. I spent three years following FODMAP thinking I was the problem. Daily mindful meditation. Then a full year of hypnotherapy. Nothing helped.
A referral to gynaecology was almost an afterthought — a last check. By then I was nearly 30. I had decided that if those tests came back clear, I would accept I had mental health issues. I was clearly "feeling phantom pain" — as one doctor had told me.
Then COVID hit
As a key worker, at 2am, I passed out from the pain — alone, in an office bathroom. Dramatic weight loss followed within a week.
It was then, finally, that one GP listened to my very long story. He referred me for a scan that found a polyp and a 5cm endometrioma cyst. Within three days I had an emergency appointment with an endometriosis specialist team.
Within that year I went into a rapid decline — 24/7 agony with nausea, unable to work, bedridden. I had given up. If there was ever a right time to offer me antidepressants, it was then. For the first time, I wasn't offered any.
Dr Ma
I gave an endometriosis specialist — Dr Ma — a two-page, A4 list of my symptoms covering 15 years. He read every single word. Nodding.
He wasn't dismissive. He wasn't shocked. He was calm, asked many questions, empathetic, passionate, and curious. It was refreshing — but also very confusing for me. This was one of the first times I had cried since I was 5 years old. A doctor that listened? Madness.
He sent me for an MRI. He explained how every single symptom I had could be caused by adenomyosis or endometriosis. He drew me a picture — I'm not kidding — to explain what both conditions are.
What the MRI found
Adhesions around my uterus. Inside the walls of it. Spread to my small and large intestines, caecum, around my bladder — pushing on my sciatic nerve, on my tubes, ovaries, peritoneum, and abdomen.
It had pulled my organs together, fusing them like glue — fusing my bladder to my uterus, sticking my bowels together. That knock-on effect created issues across my entire body: digestion problems, sciatica, worsened asthma, a weakened immune system, vertigo, anxiety, back pain, hip pain, thigh pain, pelvic pain, daily migraines, nausea, cysts, fluctuating weight, fatigue, painful sex, acid reflux, blood clots, pain eating, pain using the bathroom, pain breathing too deeply, frequent urination day and night, recurring UTIs, recurring bladder and kidney infections — and a severe vitamin D deficiency (0.5) from rarely being able to go outside.
Waiting for surgery
Adenomyosis has no cure. It was too late to try the coil, and adenomyosis is a fast progressing disease — I needed a hysterectomy. I was put on the waiting list with preservation of my ovaries and tubes. Dr Ma started me on Prostap, then Zoladex GnRH antagonist injections to shrink the endo and stop it spreading before the operation.
I stayed on GnRH for 18 months with a care team managing my pain and keeping me as comfortable as possible. Looking back, that whole care team was incredible. At the time, I was angry — it didn't take the agony away. Weekly pain became daily. "Mind over matter" stopped working.
Yet if you had seen me at that time, you never would have known. To all but four people, this is the first time you're hearing my story.
The operation — at 32 years old
A five-hour procedure that required:
- —Total hysterectomy, including removal of cervix
- —Bilateral salpingectomy
- —Peritonectomy
- —Excision surgery on multiple organs
After the operation
ALL my pain was 100% gone.
I could walk immediately — the endo was no longer pushing on my sciatic nerve (my surgeon wasn't even certain that would recover). No sickness. No dizziness. No headaches or migraines. No pain. I think the first thing I did was eat. Then I didn't stop.
Weeks later, my biopsies confirmed: Severe Deeply Infiltrating Endometriosis (Stage 4 DIE), diffuse adenomyosis, fibroids, cysts, a haemorrhaged uterus, and both tubes damaged and blocked at both ends.
For the first time since age 11, I was completely fit and pain-free. The people who had stayed by me watched me enjoy life again — travelling, doing activities with my sons, reconnecting with my husband and family, ticking off bucket lists, finding a full-time work-from-home job. My resting heart rate stabilised at 65 for the first time in my life. That one full year was perfect.
February 2025
I believe the endo started creeping back. This time, I'm in control. I recognise this pain, and I know I'm right.
I've decided to remove my left ovary. I keep getting cysts — the last two ruptured at around 4cm — and they affect my quality of life for two weeks every month. I'm spending too many weekends in hospital again, living off painkillers just to get through a working day. I've been put back on GnRH to stop the cysts recurring and prevent the endometriosis spreading further.
Once again, I'm on the waiting list. If you think it gets easier after diagnosis, it doesn't. There aren't enough endometriosis specialists to tackle this with us. There are 1 in 10 women suffering and looking for answers, just like I was. The average wait for another operation is 2 to 3 years.
Like adenomyosis, there is no cure for endometriosis. Unlike adenomyosis, there's no single organ to remove that will end it. So I'll be fighting this until there is a cure — alongside millions of others worldwide.
Hopefully, this gets us one shuffle closer to a cure — with your help.
Thank you for your time reading my story. I know it's long. Unfortunately, it's rare that someone with endometriosis will have had a short journey.
We are here for you.
— Lavern (Marthae)