Symptoms - Awaiting endo diagnosis

Heya,

It’s been 7+ years trying to get a diagnoses and I never considered endo as I kept getting referred to gastroenterology instead of gynaecology. I’m in Western Australia by the way.

I was diagnosed PCOS at 18, gained a tonne of weight (went from 65kg to 120+kg), had a child in 2019 (lost so much weight during pregnancy and all my symptoms disappeared), few months later all symptoms came back. I later had the gastric sleeve and symptoms relieved for a while as my hormones shifted massively - now I’m “healthy” and back to 65kg, my symptoms are worse than ever…

Here’s where my endo journey has truly started though:

I had a scope recently, for a random fistula which developed in November 2025. Myself, my GP and the gastro all convinced that I’d finally have a diagnosis of Crohn’s… Swiftly they arranged a colonoscopy to view whilst in a flare (symptoms below) and I thought SURELY I will have my answer after so many years of pain! Nope…

After 4 different gastroenterologist reviews over the man years and 6 scopes performed over the many years… This years scope came back CLEAR - biopsies and all… absolutely ruled out IBD… the past scopes got a few polyps, showed some undifferentiated colitis once and never any answers…

This years gastro that said after the clear scope: “It’s either the worst IBS I’ve seen in a while or you need to consider looking at the outside of your bowel for endo”.

Suddenly I felt like I’d been freed from the endless loop of Gastro teams keeping me on their books for what felt like pointless and inevitable failures of testing. I finally had someone admit I was being looked at under the wrong scope. The hardest part though - I’m now back to square 1 with a LONG wait ahead of me to see a gynae and I’m at my worst stages of symptoms and pain yet…

The only luck that has put me ahead is the fistula meant I got a pelvic MRI, ultrasound and all other causes are ruled out. I have done the “hard stuff”, now I just need a fresh set of eyes and look over things for other causes.

I’ve cried and cried knowing I’m back to a long journey… It’s defeating and I’m still yet to be diagnosed - but silly me took my MRI imaging and ran it on a deep study through multiple AI (Claude, Kaymo, GPT and more)… I’ve googled comparatives, read studies, and have been studying like a mad woman…

My symptoms are:

Bowel & Rectal

- Tenesmus (sensation of incomplete evacuation) occurring 5-10 times daily

- Constant rectal fullness and pressure

- Bimodal stool pattern - only Bristol Type 1 and Type 4, no intermediate types

- Severe constipation at times, occasionally requiring manual digital disimpaction

- Fresh bright red intraluminal blood in stool, worsening during menstruation

- Persistent high-volume mucus passed rectally - clear to orange or blood-tinged, sometimes containing tissue, worsening during menstruation

Pelvic & Gynaecological

- Heavy periods with no clotting, regular and painful

- Severe ovulation pain

- Uterus converted from anteverted (2021) to retroverted (2026), no explanation given

- Diagnosed PCOS via imaging only, Rotterdam Criteria not fully met

- Confirmed complex perianal fistula, IBD excluded

- Able to feel cervix pressing into rectum approx 7cm in - indicating pouch of Douglas gone

Pain

- Constant mild lower abdominal pressure, left side predominant

- Persistent low-grade left-sided gastric pain, both upper and lower

- Severe pain during ovulation

- Pain feels similar to that of days after child birth where organs shift back and everything is inflamed

Systemic

- Severe fatigue disproportionate to activity level

- Night sweats and overheating during sleep

- Consistent dizziness and low blood pressure

Lymphatic

- Bilateral palpable inguinal lymph nodes during ovulation and menstruation

- Palpable cervical lymph nodes

I’ve felt like I’m going insane being told to take Panadol and Neurofen. I feel like I’m bed bound and dysfunctional 90% of the time and the brain fog is too much. I’m failing to work consistently to my best abilities. I went from being motivated, smart and productive with high work ethic and academically a high achiever - to an unmotivated, illogical, tired, lazy, handicapped person riddled with pain.

I feel like my identity has been stripped from me and my cries for help were never loud enough. I’m exhausted and at a road block 🙁