Endometriosis UK
36,136 members32,111 posts

feeling disheartened

Hello folks,

I thought i would write a wee post to share my story as I am feeling a wee bitty down about it and maybe some of you lovely ladies would have so tips for me.

As with many of us my own issues started when I was a teenager, I spent ten years being told to 'suck it up' and my favourite 'we all get period pains' but was also told at 16 that i may have had polycystic ovarian syndrome and probably wouldn't have kids so don't bother trying (by a GP) but i was lucky and 10 years later i had a little boy and also thats when my journey (aka torture) began....during a regular scan the doctors discovered a complex mass cyst that was attached to one of my ovaries and it had to be surgically removed as they thought it may have been cancerous (luckily it wasn't and my little boy was fine too) this is when i was told i had endometriosis, then a few years after this surgery i began feeling the similar pains and symptoms so i had another surgery where it was discovered that the endometriosis was at stage 4 and was removed, since then i have recently had another surgery (5 days post op) and was told by my doctor that my endometriosis was again found and it is now classed as severe stage 4, he mentioned that he is planning on leaving my case as an open case and am feeling a bit confused about this.....has this term been used with anyone else?

I know in myself i have been having a blip in regards to my emotions and i apologies for the long rambling post i am just really confused about the difference between stage 4 and severe stage 4 except that it explains the pain difference, and about being an open patient.

hope all you ladies are keeping well thanks for any advice in advance xx

1 Reply

Severe stage 4 means that you have wide spread endo , where usually bladder/bowel/ovaries/ tubes /pelvic cavity could be involved.. You will also have adhesions which attach to these organs ..

I would think in some point in the future you will possibly need more operations.

Stay strong I know it's seems impossible when you are in constant pain!!! Have you ever been referred to a pain clinc? Might be a option?

Or try the endo diet this will help manage you symptoms ..

Good luck x


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