Is endo back???

[AF1981]

I had a TOTAL hysterectomy in January of 2015 due to stage 4 endo. A year later I am experiencing the familiar pains again. In my lower back and bladder area. Has anyone had experience with endo coming back? My gyno/surgeon told me he couldn't get it all but was nearly impossible to come back......

[JeanOsborne]

Hi you need to find a specialist surgeon through the BSGE website the tell GP you want a referral to them. A hysterectomy isn't a cure for endo if it's not all excised it will come back.

[Heidi11]

Hi did you have just a hysterectomy or did they remove your ovaries too?

[AF1981 in reply to Heidi11]

Ovaries also. EVERYTHING! I'm wondering if its moved on to my bladder or something

[Tboag]

Hi, I'm sorry to hear your suffering again, unfortunately if your surgeon didn't get it all then it can carry on growing, with or without overies, endo is self feeding for a start and also the body still produces small amounts of estogen fir the endo to feed from and grow,

Your best bet now is to have thorough excision at a BSGE centre, where specialist endo surgeons work from,

I had a hysterectomy in July last year, fir Adenomyosis and whilst it has cured that and some of my symtoms are less I'm still in pain most days, I beleave he has missed endo or not dealt with it appropriately, unfortunately but surgeon wasn't on the BSGE list.

Good luck,

Xxx

[AF1981 in reply to Tboag]

I also stopped using the hormone cream my doc had made from me. Do you think that would have anything to do with it? It was made up of estrodial, progesterone and testosterone. I took it for the first 6 monthd after surgery but I didn't feel right on it. So I stopped taking

[danifish]

Personally myself I cannot help you out with that but I totally understand your frustration. Jefferson University the Philadelphia found out my situation after 20 years of no one knowing anything that's your only advice I can give you I wish you all the luck in the world keep up the good work 🐬

[Yazza]

Sadly it's not coming back its either endo that was missed first time around or possibly adhesions either way like others have said look up your closest bsge centre as they specialise in this horrible disease.

If you would like more info or help pm me. X

Sharon