Stage 4

[AF1981]

Hi! I posted a couple weeks ago about going in to have an ovary taken out because of a mass. Turns out I have stage 4 endo! Im full of chocolate cysts. my doc says hysterectomy is my only option since its so bad. Also a possibility it has spread to bowels. Looking for thoughts and support on the hysterectomy. Thank you!

[Petunias]

Hiya. Endometriomas ( choc cysts) are an indicator of advanced disease so it would be a liklihood that you have it affecting your bowel too. Did they assess your bowel when they did your lap to diagnose stage 4? The problem with surgeons who talk about the need for a hyst is they are usually saying this because they are so ignorant. Endo is only ever found outside of the uterus so removing the uterus will not resolve the endo outside the uterus. This needs removing. In order to remove it effectively it needs excising ( cutting ou) rather than diathermy or ablation which is just burning the areas that are seen but not getting to the deeper 'roots'. Often the ovaries are removed as gynaes used to believe that by doing so it prevents endo from growing as it stops the supply of estrogen however this is not necessarily true as it is possible for endo to create its own supply and also we injest oestrogen in our diet and things we are exposed to. In a nutshell if someone tells you that your endo is so bad you need a hyst what their actually meaning is thst its out of their capabilities but the good neews is thats when you say bye to them and find a specialist who is capeable of leaving your uterus and ovaries in place because the problem doesnt lie with them and who goes in and removes the actual endo. I had stage 4 rectovaginal. I had an endometrioma on my left ovary. It had started to penetrate through my bowel wall. It affected my bladder ureters abdo wall and fallopian tube too so it can be done certainly but just not by an amateur! Have you looked at the BSGE websites? It has a list of all the accredited and aspiring endo centres. I'd make a start there and request a referral to someone who knows what they are talking about. Good luck x

[AF1981 in reply to Petunias]

Thats what im concerned about. Is it necessary?? I did see the pics. It is on my ovaries and tubes for sure. I guess its not a complet hysterectomy because he Didnt say anything about the uterus

[Petunias in reply to AF1981]

No a hyst is not necessary at all. Infact removing ovaries would reduce your life expectancy apparently. I was told by the uk's leading expert never ever to let anyone take my ovaries. What is necessary is have your endo identified and removed effectively by a specialist surgeon who is highly skilled in excission and laparscopy. Where abouts in the uk are you? Have you found out if you have a local endo centre?

[CharlieSays]

Hello, I also have stage 4 endo and was given the option of hysterectomy or GNRH analogue injections (Prostap) onw year on, one year off, until my menopause (I'm 44). I read up a lot on hysterectomy and found that it doesnt always stop your endo problems - so I said no. I have tried the prostap for 6 months, which works ok, but I'm worried about long-term effects. So I have asked to be referred to an endo specialist at my local provisional centre - I'm due my 1st consultation on Monday. I'd advise you to do lots of research into the hysterectomy route before deciding what to do and to ask for a referral - if you have stage 4, NHS protocol advises a referral.