6 Years Ago: My Hysterectomy Story and Why It Led Me to Start Endo Warriors Aotearoa

Six years ago today, I was getting ready for my hysterectomy.

I was exhausted but hopeful. I had been bleeding nonstop for over seven months passing out from blood loss, bleeding through my clothes, and going through two boxes of super tampons and pads a day. When I met with a surgeon on a Thursday, I was booked in for surgery that same day for the following week. I thought I was finally getting my life back.

But things didn’t go as planned.

The Surgery That Was Meant to Help

The surgeon I had originally seen was replaced at the last minute. The person who operated on me was not a specialist. My hysterectomy was done like a C-section. My uterus was removed along with one fallopian tube and my cervix. My ovaries were left behind. The surgery notes were minimal, just “uterus removed, normal blood loss.”

But what I experienced afterward was far from normal.

The Aftermath: Infection, Gaslighting, and Pain

A few days after surgery, I noticed extensive bruising running down the right side of my body, from my breast all the way to my upper thigh. No one could explain why. I was sent home anyway.

Two days later, I was back in hospital, in agony. I stayed a few nights, then was discharged again. I told them I didn’t feel safe to go home, I was alone and could barely care for myself, but they sent me anyway. I remember getting out of the Uber and the driver asking if I was ok, I said, "I'm fine" and got inside my hose and collapsed on my floor from the pain. It took me almost two hours to crawl up the stairs to my bedroom. I called the hospital, crying, saying something wasn’t right. They told me to rest, that I’d be fine.

The next day, I was back in hospital. A few more nights. Same story. Again, I begged them not to send me home. I told them I could barely walk on my own. I told them I didn’t feel okay. They sent me home anyway. That night, I was back in hospital again.

One morning, I woke up in bed and thought I had wet myself. The sheets were soaked. But it wasn’t urine, it was sweat and some blood. My surgical wound had partially opened, and I had developed a high fever. I was back to ED.

There, I was placed on a stretcher in the hallway. I spent hours crying in pain, begging for help, but no one came, just a nurse checking my vitals every now and then. I was terrified. I had no idea what was happening to my body, I thought I was going to die.

That’s when I developed a septic infection, one that would keep me in and out of hospital for months. There was one nurse I now refer to as the “mean nurse.” She would make comments like, “You can’t be that bad, all you do is watch movies,” or “Don’t you think you should be home looking after your son and not here?” One day, I was in bed, crying from the pain, begging for help. She told me I was faking it. She asked, “Why do you want to be in hospital so much?” and refused to call the doctors, saying they were “too busy for me.”

I had to fight every single day just to be taken seriously. Just to be seen as human.

One doctor told me I’d need to stay longer because my infection wasn’t responding to antibiotics. But the very next morning, another doctor walked in and said, “You’re good to go.” When I asked if my bloods had come back fine, she said yes. I reminded her what the doctor had said the day before, and she paused. Left the room. An hour later she returned, looking sheepish, and told me I was right. I wasn’t going home.

Even in hospital, while battling a dangerous infection, I had to advocate just to stay alive.

From this experience, I developed CPTSD: (complex post-traumatic stress disorder) as a result of medical trauma. The fear, the gaslighting, the lack of care and dignity, all left lasting scars on my mind and body. What was meant to be healing turned into one of the most traumatic chapters of my life.

Life After Surgery: The Fight to Rebuild

Once I was discharged, I spent months trying to heal and return to “normal.” But nothing was normal. I couldn’t care for myself. I had home help, and as a single mum, that meant I spent a lot of time apart from my son because I physically couldn’t look after him.

Before all this, I worked full-time, taught yoga part-time, and lived an active life. After surgery, I began losing my mobility. The pain never left. I was eventually told to leave my job. Things spiraled, and recovery took everything from me.

The Truth About Hysterectomy and Endometriosis

Here’s what I wish more people knew:

A hysterectomy is not a cure for endometriosis.

This is one of the biggest and most damaging myths around endo. I believed it too. I was desperate for relief. I thought removing my uterus would fix everything. But it didn’t and that’s because endometriosis isn’t a uterine disease.

Endometriosis is not found inside the uterus. It’s tissue similar to the lining of the uterus that grows outside it on the ovaries, fallopian tubes, bowel, bladder, pelvic walls, and sometimes even the diaphragm or lungs. So removing the uterus doesn’t remove the endo. It only removes the organ that bleeds during your period, not the disease that’s growing and spreading elsewhere.

Endo doesn’t need a uterus or ovaries to survive.

Even if your ovaries are taken out, it doesn’t guarantee the endo will stop growing. That’s because:

• Some endometriosis lesions can produce their own estrogen.

• Others can become hypersensitive to even the smallest amounts of estrogen still circulating in the body, like the estrogen made by fat tissue or adrenal glands.

Since endometriosis is estrogen-driven, it doesn’t need much to stay active. And that means:

• Lesions left behind can keep causing pain and inflammation.

• In rare cases, new lesions can even develop after surgery.

• And for some people, symptoms may even worsen despite surgery.

Incomplete removal is far too common.

Endo doesn't just clean itself up during surgery. To truly help, lesions need to be excised surgically cut out by someone trained in identifying and removing them. Many general gynaecologists don’t have this training. They may only burn off what’s visible (a method called ablation), miss deep or microscopic lesions, or as in my case not remove any at all.

In my surgery, no endometriosis was removed. Only my uterus, one fallopian tube (the other had already been taken in an earlier surgery), and my cervix were removed. The disease was left behind, still active, still affecting my body every day.

So while some people do find temporary relief after a hysterectomy, it is not a guaranteed fix especially if the root cause, the endometriosis lesions themselves, is still there, growing, bleeding, and causing inflammation every month.

That’s why it’s so important to work with a skilled endometriosis excision specialist, someone who understands how complex, invasive, and stubborn this condition really is. Without that, many people are left to suffer all over again, thinking something must be wrong with them when really, the system has failed to treat the disease properly.

Why I Started Endo Warriors Aotearoa

Endometriosis took so much from me, but it didn’t take everything. I’m still here. And I’m not done yet. This is exactly why I started Endo Warriors Aotearoa. Because no one should go through this feeling silenced, dismissed, or alone. We deserve informed care, respectful treatment, and support that sees the whole person not just their pain.

If this story resonates with you, please know you are not alone. I see you. I believe you I'm fighting for better.