“Finding out I had Stage 4 Deep Infiltrating Endometriosis was a complete surprise.
Throughout my teenage years and early adulthood, I consulted several gynaecologists.
Some insisted I didn’t have it, while others said I did but reassured me it would resolve
on its own. As a result, I didn’t take any further action at the time.”
This is Florie's story.
My story really starts in 2024. I began feeling a strong pain on my left side, but I always associated it with constipation since I was only going to the bathroom every 3–4 days and needed laxatives to go. I even had to take this slim tea every weekend just to feel some relief from how bloated I was. Sometimes, the pain was so intense after taking laxatives that I would pass out.
I went to the GP many times, explaining everything, but
she kept telling me to eat more fruit, exercise, drink more water, and try stronger
laxatives. Nothing helped. It felt like she wasn’t really listening like fainting from pain
wasn’t serious to her. I was doing all the things she suggested, but exercise was
especially hard because I was constantly in pain.
I ended up seeing another doctor who gave me a urine test and was convinced I had a
UTI. I even told him, “It’s not a UTI. I know what that feels like. This is different.” He
laughed and said, “Let me prove it to you.” So, I waited an hour, and the test came back
negative. But even then, he kept insisting it was a UTI and would show up in a few days. I
left that clinic.
A week later, after midnight, I experienced a sharp pain like never before. My partner
rushed me to the emergency department. I told the nurse it must be constipation
related, so they gave me 2 litres of laxatives to drink and nothing happened. I was in
agony. After four hours of trying different things, the main doctor told me he had no idea
what was wrong and was ready to send me home. Thankfully, another doctor decided to
do blood tests. The results showed a high infection level.
They sent me for an ultrasound and found a 9x9cm cyst on my left ovary that was
infected. But they didn’t know what kind of cyst it was. Doctors were speculating for a
while before they sent me home with antibiotics to reduce the infection. A week later,
the pain worsened, and I returned to the ER. I saw many gynaecologists there, and
finally, one surgeon said, “This is not good, you could die.” That’s when they made the
decision to do emergency surgery.
They told me, “We don’t know what we’re going to find. Sign this paper,” and off I went to
surgery. They removed the cyst and told me afterward that I had Stage 4 Endometriosis,
and the endometrioma was infected. I was really confused because, in the past, every
gynaecologist told me I didn’t have this condition.
During the surgery, because everything was inflamed and infected, they couldn’t remove any of the endometriosis. My uterus was adhered to both of my ovaries and rectum. After surgery, I was placed on several antibiotics to reduce the infection before being discharged. I stayed at the public hospital for three days. The infection went from 90% down to 15%, so they were happy.
About a month later, I had my check-ups at the public hospital, but it was incredibly
slow. Every surgeon I saw could only treat Stage 1 endometriosis. I was shocked when
one doctor laughed in my face about how I’d have to wait a year for treatment and then
told me he couldn’t help because he doesn’t specialize in Stage 4.
I realised I had to take matters into my own hands. I started researching and decided to
go private to find a gynaecologist who specialised in Stage 4 Endometriosis, someone
trained. I called seven different clinics in Melbourne, asking about wait times. Most told
me it would be 7 months to a year. I thought, “Oh no, I can’t live like this anymore.” I was
barely functioning, always in bed, in pain, moody. It wasn’t a life.
Then, finally, one receptionist told me about a new doctor who was good and could see
me in just 3 months. I called straight away. She saw me immediately and scheduled the
surgery within those 3 months. She also connected me to a nurse who check up on you
online for free. That was a lifesaver. I had monthly calls with her, and she was kind and
helpful.
While waiting for surgery, I tried a contraceptive pill called Xanda. It made me bleed
every day. I was moody, and it didn’t help at all. After the 3-month wait, I had the surgery.
It was quite expensive but necessary. She removed most of the endo but left some on
my fallopian tube so I could still have the possibility of children one day. She also
unstuck all my organs, which weren’t moving freely, and added a special gel to help
keep them that way.
A bowel surgeon was also present during the operation to check for bowel endo.
Thankfully, I didn’t have any. Since my case involved deep infiltrating endo, there were
three surgeons in the operating room. She also inserted the Mirena IUD to try and
manage the condition.
But the Mirena was the worst experience ever. I was in even more pain than before the
surgery, which made no sense. I was depressed, crying daily, overwhelmed, gained a lot
of weight and had constant bleeding. I went from a size small in pants to a large, without
eating more than usual. My breasts grew two sizes. I even went to Greece and couldn’t
enjoy anything — no swimming, barely walking, always tired and in pain. My family was
worried. I was depressed.
When I returned to Australia, I asked my genecologist to remove it immediately. She did
and I felt so much better. The pain was gone. The weight dropped fast. I fit back into my
small pants again (though not the boobs, got a boob job naturally I guess!). I felt happy
again. My period went back to normal within a week. It was incredible.
She told me to take a break for a month and then try another contraceptive pill called
Ryeqo, to stop the period again. But that didn’t work either. Every time I take something
hormonal, my mood swings, I bleed even more, and I just don’t feel like myself.
Now, I’m off all pills. I don’t have pain anymore. The only symptoms I have are bloating,
migraines, brain fog, fatigue, and the occasional twinge near my ovaries. But that’s rare.
The best part? I can now go to the bathroom normally without laxatives. I poo once or
twice a day, and I haven’t changed anything in my diet. I still eat a lot of fruit. My life is
back. I’m working again. The only concern now is how to manage and reduce
endometriosis without bleeding every month. I bleed more on the pill than off it.
My journey with pain started when I was a teenager. I saw many different GPs,
physiotherapists, neurologists, and gynaecologists: all telling me the same thing: “It’s
all in your head.” That nothing was wrong with me. I finally got diagnosed with
endometriosis at 27 years old. I had heavy bleeding, painful intercourse, excruciating
period pain that made me scream for help, constipation, bloating, fatigue, and
migraines.
I’ll never forget the moment I saw a kinesiologist and said, “I’m in pain every day.” He
was the only person who said, “I believe you.” I cried.
Whatever you are going through. This condition is a lonely battle. You try so many
different things, and it’s different for every woman. I’m now determined to explore
natural remedies to help manage this condition. I still need to see my gynaecologist to
try something new and hopefully the pain won’t come back.
Florie
