Does it come back : I've recently went back... - Endometriosis UK

Endometriosis UK

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Does it come back

Shannon5296 profile image
10 Replies

I've recently went back to see my consultant who said he'd removed all of my endometriosis but when I asked if it will comeback he said no? I thought with endometriosis it will come back in the future and that I will need more surgery, or am I wrong?

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Shannon5296 profile image
Shannon5296
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10 Replies
naszam profile image
naszam

Yes it may!!! Mine has, my consultant is still in denial, it's back.

Waiting for follow up to see consultant, my gp referred me for scan as I was in that much pain,done a follow up scan and referred me to a different consultant for second opinion, to which booked in end of this month for excision. However my original consultant unaware of all this as he believes he removed it all when he removed my damaged ovary.

Mine is back on the other side with 3 chocolate cysts. Plus adhesions on both sides

Shannon5296 profile image
Shannon5296 in reply to naszam

Mine was the same he seems so in denial about it. How long did it take for yours to come back?

naszam profile image
naszam in reply to Shannon5296

6months,

It baffles me that some consultants suggest that endo will definitely not return after excision. It's not possible to say this with certainty, for a percentage of women endo will return after excision. My Consultant said 50% xxx

DBuckland profile image
DBuckland in reply to

I was told that when burning it off the endo can come back in a year or two . If the endo is actually cut out then ther results will be longer.

Sez73 profile image
Sez73

I had a laparoscopy in 2013 where extensive endometriosis was removed - endo & pain came back within about 6-8 months post op and more adhesions developed and a real mess again within a year, everything stuck down, bowel/ureter/ovary/uterus. Then had further surgery to undo all these adhesions followed by TPE (radical total peritoneal excision) done privately (9hr op) and was reassured by surgeon that endo was unlikely to return this time in areas he excised, but that is because he removes the entire peritoneum (internal skin which surrounds your organs in your pelvis) and he sees from experience that endometriosis doesn't tend to re-occur once that "skin" has regrown back. However, he did warn me residual endometriosis could flare up in the future from a big nodule impacting my ureter - while surgery cleared it as best he could manage, he wasn't 100% sure that some endo wasn't left due to trying to avoid complications with the ureter and uterine artery, so that could flare up again. While I've had a good outcome from that surgery, endo symptoms flared up as I had 3 rounds of IVF 6 months after the radical surgery. I also have adenomyosis which causes pain. So, in answer to your question, yes it does come back, more aggressively if not operated on sufficiently and less likely when radically operated on, but it will always bubble away it seems. (especially in my case as I'm trying to get pregnant so am not on any drugs to calm my symptoms down) hope that helps x

Devils_Advocate profile image
Devils_Advocate

It can come back but it doesn't mean it will. I had excision surgery in 2013 and further surgery in 2016. The endo that was removed in my initial surgery had not returned - it was only the remaining endo on my bowel which had to be removed. I am hoping that this awful illness stays away but I know so many who have had to have repeated surgeries.

D x

MissyS profile image
MissyS

Yes mine was drained and was detected at 6 months was 3cm

humanbean profile image
humanbean

Mine always came back after laser treatment.

Hewfer profile image
Hewfer

Yes it does come back, i will soon be going into my 4th opt with my cyst. it is scary i am not able to do nothing, emotionally i am down.

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