What Stage am I?: I had my first diagnostic... - Endometriosis UK

Endometriosis UK
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What Stage am I?


I had my first diagnostic lap a month ago and was only briefly told what they’d found after I came round. I need to wait until my follow up appointment in September to get full details.

They told me they’d found extensive endo on my bladder and bowel and that I will need further surgeries to remove it and we’d discuss at a follow up app.

I was first diagnosed with endo 4 years ago when a 5cm chocolate cyst was found on my ovary. I fell pregnant shortly after and the cyst ‘dissolved it’s self’.

From what I understand chocolate cysts mean stage 3, I was wondering if ‘extensive endo on the bladder and bowel’ now means it’s progressed to a higher stage?? As far as symptoms go I’m in pain 2-3 weeks of every month appose to 2-3 days as I was at first diagnosis.

I appreciate none of you can confidently answer but I’m more so looking for anyone who’s gone through similar because at the minute all I have is Dr Google!

4 Replies

I was diagnosed three weeks ago via a laparoscopy and was also told the diagnosis during recovery.

When I asked about the stage, the surgeons told me that staging is outdated and they don’t use it anymore. They classify according to where it is and what the effects are on the individual patient.

My surgeon also doesn’t stage.

Someone could have stage 5 and no pain and someone else stage 1 and debilitating symptoms. I wouldn’t want that person comparing them self.

Hi 👋 I am in exactly the same position as u! And my endo is in the same place as yours I know what u mean, I’m awaiting my follow up appt aswell they told me 4 weeks time but can’t get me in until 18th September!

We have been trying for a baby for almost 2 years now and it’s just going on and on!

Luckily my tubes flowed through fine with the dye test but was told my endo severe bladder,bowel,urethra,all stuck with adhesions

Thank you ladies, I really wish I’d asked more questions but I hadn’t long come round and was suffering with really bad sickness due to it being the first time I’d had anaesthetic. I was trying my best not to vomit whilst she was briefing me! The lady in the next bed to me was told she was stage 1, so sounds like there’s some inconsistencies between surgeon’s to say the least!

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