Delayed Diagnosis -My Endo Journey

By Phoebe

On the 14th of May 2024 I underwent laparoscopic surgery and was officially diagnosed with endometriosis at 24 years old after 8 long years of pain and battling the system.

I started having issues around age 16. I had frequent debilitating headaches that often turned into migraines, my periods were always super heavy to the point of clotting and would last about 10-12 days, and my cycle was always irregular which made it impossible to track.

From the ages of 17-19 I started having painful cramps with my period and my headaches/migraines worsened. I started to experience Premenstrual Syndrome (PMS), and my cycle was still very heavy and incredibly irregular. I was constantly taking medication to try and ease my symptoms, although it didn’t help much.

After multiple Doctor’s visits, tests, and ultrasounds I was finally diagnosed with Polycystic Ovary Syndrome (PCOS) at age 20. I was prescribed the contraceptive pill as treatment, and was then referred to a specialist gynaecologist.

For 2 years I produced abnormal smear test results (CIN 1) which led to biopsies that showed high grade changes (CIN 2), these cells were closely monitored every 6 months.

At age 20 I developed Indigestion, Heartburn, and Irritable Bowel Syndrome (IBS) which I sought medical attention for. Allergen testing ruled out any food allergies and I was placed on a low FODMAP diet and prescribed Omeprazole. Unfortunately these measures never eased my symptoms.

In the years that followed, my symptoms worsened and became much more frequent, my quality of life was severely affected by it. On one occasion, I was rushed to ED from work due to intense, sharp pain in my lower left abdomen (the worst pain I’d ever felt in my life 10/10) where ED doctors suspected I was suffering from Ovarian Torsion however, the hospital's gynaecologist ruled this out and there was no obvious answer/explanation for the pain I was experiencing.

Toward the end of 2023 my gynaecologist advised me to consider laparoscopic surgery due to suspected endometriosis, I agreed. In Feb 2024 I met with the endometriosis surgeon and a surgery date was set for May 2024. My surgery went well, stage 1-2 endometriosis was found and removed, and I have made a steady recovery post-op.

It was a tough, stressful and exhausting battle of 8 years after first seeking medical help for my symptoms to then receiving a diagnosis through surgery. I want to thank my incredible family and friends who supported me the whole way through this long, daunting journey.

A huge shoutout to my specialist gynaecologist, my surgeon, and the rest of the incredible team of medical professionals at the hospital who made the surgery happen. I am incredibly grateful to have been under such great care during my surgery, and it feels so relieving to have the answers deep down I knew would be there.

I want to share my symptoms that have given me the most grief over the last 8 years to spread awareness and hopefully assist others in reaching a diagnosis of their own:

Chronic pelvic pain.

Chronic headaches and migraines.

Pain and discomfort immediately after eating. Indigestion, heartburn and IBS.

Pain passing bowel movements and frequent urination.

Heavy bleeding during periods and bleeding between periods (irregular cycle).

PMS.

Painful bloating.

Excessive fatigue and dull muscle aches.

Lower back pain and bad abdominal cramps during periods.