Stages of Endo?

[Worzel]

Hi Everyone,

I wonder if you could let me know, I had a large implant/lump of endo removed a few weeks ago by a general surgeon and he is now referring me to a gynae for a lap as they suspect that I have more lumps and perhaps some endo in my pelvis. As the endo has formed into a lump does this mean it is more that stage one endo? I am a little confused and as I obviously haven't spoken to a gynae yet I was wondering if you could advise me?

Thanks

x

[Sunflower846]

Dont think u will know until u have had a lap done. They need to see inside ur tummy to tell. xx

[Impatient]

Was this an endometrioma cyst? A cysts fills up with blood that can't escape and can grow very big.

Or a lesion of endo on another organ?

Not a cyst but a patch of endo cells which is of any size from a tiny dot to extensive and bleeds freely when the endo is playing up in the monthly cycle.

stage one one or a few shallow lesions apparant

stage two is endo blood found trapped and collected in the pouch of douglas or POD (the gap behind the uterus and vagina and in front of the bowel.

stage three is same as stage two but with an endometrioma (endo cyst usually attached to an ovary in most cases)

stage four is large endometriomas, extensive lesions, and everything more severe including invasion by endo of other organs. Much deeper growing endo.

The stage four actually covers quite a lot of different stages itself but that is the maximum level for describing your endo.

You could have stage four but all the lesions are shallow, and not actually causing much if any pain, or they could be anything more severe up to the invading endo that affects bladder and bowel movements and causes a lot of acute unmanageable pain.

Ideally it ought to be at least a two stage description. A number to signify the severity of the endo itself, and a letter for the amount of pain the endo is causing A,B,C,D

A for Average or actually very little pain

B for Bloody hurts monthly

C for Chronic all cycle

D for Death's door diabolically dreadful.

Sadly no one want to include pain levels in the descriptions.

I would be a stage 4B now but I was a stage 4C or 4D before surgery.

[worth71]

i wasn't told a stage at my lap or follow up appointment, i assumed it was more an american thing, and i assumed that they didn't always stage it as amount of endo found doesn't always reflect the amount of pain or symptoms. the amount of people who have told me, since my diagnosis that they know of someone who had it or had, and they didnt know, and i get the funny look of so why are you in so much pain? from what impatient has said i would be a stage 3 or 4, and i like the pain descriptors impatient, mine would be a C, and sometimes a D lol xx

[kellykeloggs in reply to worth71]

Hi worth71 From what I have read we are both stage 4 for the reason we have endo in our pouch of douglas. It isn't strictly about severity or quantity as it is about where they find it! source- endo for dummies x

[worth71 in reply to kellykeloggs]

ah right, i didn't know that, endo for dummies sounds a good book. it seems all i've had these past few weeks since my diagnosis people are like 'oh yes i had that but i didn't have much pain' or 'my friend or whoever had that, they had a hysterectomy and now they're fine' - almost like they think its a competition as to who can be the worst! if i had a choice i would've chosen something that could've been treated at my lap and job done, i had always hoped it wasn't endo. i'm fed up of people expecting me to 'look ill' i'm not the type of person who would act in pain if i wasn't, i have always tried to hide it when i'm in pain, i have a little limp if i've been sat down for a while or stood up for a while etc, but i don't pull funny pain faces when i have the knives stabbing though everywhere, or the gnawing feeling in my left hip lol, i smile through that pain - sorry, that almost turned into a rant lol xx

[kellykeloggs in reply to worth71]

Ditto to your rant! I said the other day that even if I get the big H it may not mean that I am out of pain as they can't tell you which bits of your endo are causing you the most pain and I ended up getting told I was being negative and I was upsetting them to say it! Oh I'm sorry my condition brings you down! TRY LIVING WITH IT! Day in day out like we do!!Wow that makes me feel better getting that out there! lol x

[Worzel]

Thanks everyone that's really helpful, I was a little confused. I love the A-D scale impatient!!

Mine wasn't a cyst it was an implant in my abdominal wall, I possibly have another in my abdomen and more in my pelvis but will know more after lap .

Thanks everyone

x