Those of you with endometriosis diagnosed..

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... ' how ' did u get diagnosed please?
Thank you

I had a gynae check last oct
To rule out any big c gynae issues
As had , had some odd bleeding cycle day 9

The specialist was very complimentary re my womb lining and uterus etc
She tried to reassure me

Always good to get 2nd opinions

Im due next colonoscopy next spring

3 in a 12 month time period was a lot

Are u likely to be under regular colonoscopies / regular screenings due to previous findings or not so ?

I wonder if sometimes people with endo have more polyps - i dunno

At my 1st colonoscopy - the consultant said what they found was not normal 4 my age

My periods were always normal. First day was heavy and cramps that didn’t need paracetamol and then no issues from day two onwards. That’s why I’m surprised that I have endo so badly when I had no symptoms until just a few months ago.

I was referred for an MRI due to the extreme pain and then they discovered I was covered in it.

Id been in pain for years but got nowhere.

I was diagnosed after a laparoscopy in my late 40s but this was after decades of very painful periods and being told ‘it’s normal' by a succession of GPs. Then one day I had an episode of truly astonishing pain and a slightly more clued-up GP sent me for an ultrasound which revealed an ovarian cyst.

A different GP then tried to claim it wasn’t a cyst, it was ‘constipation' and I had IBS. Long story short, I had to pay privately for the lap as the NHS waiting list was so long and I was in so much pain.

Even then the consultant told me there was no 'active' endo. It took a second consultant - also private - to look at the photos taken during the laparoscopy and confirm Stage 4 endo.

It's good that she made sure to reassure you. My consultant last year told me the globular shape of mine and it being larger than normal were both signs of adenomyosis. I've seen numerous consultants in the past 20 years and some are far better than others. One found a huge mass on my ovary and did nothing for 6 months not even refer me to a consultant that could treat me thankfully it didn't end up being cancerous as it was first seen a year prior to me having a salpingo oopherectomy to remove it. Consultant I had was loud but gave me every possibility that may happen and told me very clearly what he was going to do in the surgery for the endo and what else he was looking for aswell and made sure he had permission for the oopherectomy incase he couldn't just remove the mass.

I have no idea if it's going to be regular from now. They did a sigmoidoscopy (sp?) the first time to diagnose. I wish they'd told me more about it but I went in geared up for arguing my case to get a haemorrhoid removed as 3 GPs told me it was that over the years, and it turned out to be a polyp, which I must say I'd never heard of until they said I had one so I was completely unprepared to ask questions! I'm only in my 30s. Is there a crossover between colorectal polyps and endo, do you know?

Im in my 30s too

I dunno re cross over with colon polyps and endo but im tempted to ask in a bit

I have pcos - my hormones are unbalanced

I had private thermal imagery done previously that showed inflammation but that practitioner was like of course u have benign polyps as inflammation / unbalanced hormones play a role ( apparently)

My pcos was only finally formally diagnosed on NHS last year
But id had a heads up privately re that.
Thats another story -
Ovaries werent appearing polycystic on summer 2023 scan
But were on feb 2024 scan that i had to really push for

Has been a tough few years

I also have polyps, but they're in my stomach. Seen by a surgeon on the NHS, but concerningly they didn't remove them and I've had no follow up. I live with daily nausea and eating difficulties.

Have they tested you for things like sibo?

All my scans came back normal, was told I didn’t have it, until they finally did a laparoscopy and found endometriosis AND adenomyosis (sp?). I had surgery a few months back to remove it all, had 2-3 good months, and now my symptoms are worse than ever before.