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Extensive silent and stealthy endo for me

Category: Delayed Diagnosis and Health Insurance.

My story starts in May 2021 where I had just turned 49 and decided to head along to my GP due to the appearance of several concurrent issues.
Firstly, I had been having painful cramps down both the left side of my abdomen which I assumed was bowel-related, and also more recently centrally below my belly button as well.
Also, for a few months there had been a rapidly increasing number of days of spotting between periods (up to two weeks in a stretch) which I wondered if changes could be related to peri-menopause??
Thirdly, my urinary function suddenly seemed to be out of whack – my urine was periodically changing colour (crystal clear or apple green), my bladder felt aggravated and had changes in frequency and volume but it wasn’t a UTI
I went along to my GP and she sent me for a pelvic ultrasound to look for bladder stones – which there were none, but did pick up diverticular disease of my colon.
I was then referred to a gastro specialist and was booked in for a colonoscopy and MRI after a review of my symptoms. I was happy that this area was in hand and had a plan to get to the bottom of the symptoms. However that still did not seem to explain the bladder issues and more centrally located cramping.
Low and behold the MRI held the key to the rest of the story. In the report, as a side note to the bowel-related findings, it was noted that I had extensive infiltrative endometriosis.

I was floored as I had not previously had anything in my teenage or adult life that would have directly lead me to thinking this was a condition I may have had. I was however curious to learn more, and find out exactly how extensive it was and whether this was the complete answer to all my symptoms.
When I reflect on my complete medical history, I can see some potential indicators (such as persistent bloating and tiredness) especially over the last 20 years, but nothing in and of themselves that would have ever lead to the endo conclusion, including no monthly pain cycles or any issue whatsoever with becoming pregnant all those years ago.

I am in the fortunate position of having medical insurance and just 1 month after visiting a Gynae I am now at home recovering after my surgery. I opted for laparoscopic surgery to address the endo rather than a full hysterectomy at this point, plus a Mirena IUD insertion to hopefully keep a lid on any further endo development prior to menopause.
The surgery revealed I had “severe Stage 4 endo”. After freeing my ovaries from the back of my uterus and removing some chocolate cysts, my surgeon determined that my fallopian tubes were unsalvageable. She also removed endo from the exterior my bowel, RV septum, rectum, urethra etc
I am looking forward to my post-surgery follow up appointment with the surgeon to understand more, and am also busy researching things I can do to help myself, but more importantly my teenage daughter. She suffers somewhat painful periods most months, but I am suddenly looking at her symptoms now with fresh eyes.
I am so grateful for the MRI that picked up this condition that I had no idea I had.

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