Hello all I am really confused as to what is happening and my surgeon isnt admitting anything. Here's the story....aug 25 had a 10cm leaking endometrioma removed in emergency surgery along with my right ovary and Fallopian tube. He also said that I have stage 3-4 endo and removed a lot of adhesions. I don't know I had endo until this surgery and I'm 40. I've been having pain now that is an ache and stabbing pain in my cervix and on the right side where my ovary USED to be. Ultrasound shows that I have a 2.3x1.6x1.2cm mass with vascularity consistent with an ovarian or fallopian remnant on the right side. I'm devastated and don't know what to do. Ultrasound also shows a bloodclot or polyp in my uterus that grew from 1.2cms to 2.8cms in less than a month. My surgeon said he's not concerned and all this is normal for someone with endo and 'maybe we did leave some ovary since we had to stop "digging" since they didn't want to damage my ureter'. Isnt it really bad to leave ovary in there!!? Why isn't he concerned? I'm in pain and so sad the surgery wasn't successful. Does anyone have any advice or have an ovary that was left after an oophrectomy? This can't be normal. Any insight would be so wonderful.
Removed ovary showing up on ultrasound?! - Endometriosis UK
My twin sister had both ovaries and tubes removed by Laparotomy due to stage 4 endo. 12 weeks to the day of the surgery she got a period and when she got bloods done the hormone results were as if she had fully functioning ovaries. She was told that it was ovarian remnant syndrome where a tiny piece of ovarian tissue was left and it re-grew! She also developed cystic tissue which they are keeping an eye on. She was told that this was rare but due to her endo being so aggressive! She is on hormones now but she still gets done bleeding and pain.
Will she have surgery to remove the ovarian tissue?
No the surgeon wants to avoid surgery as the tissue is stuck onto her bowel and there is a high risk of damaging the bowel.
They have put her on strong hormones and are hoping to get her to her natural menopause. She is 46.
Hope this helps but each person is different.
Wow. This seems like a lot for you to deal with.
Do you know if your surgeon is experienced in endo (as a specialist interest or with a BSGE centre?). If your surgery was emergency and without being aware of it being endo, I'm guessing it's unlikely they are.
It certainly does sound concerning that you are in pain and there are things in your scans that shouldn't be there. You have the right to ask for a second opinion and if you're not been seen in a specialist endo centre, that would be my first call- to get your GP to refer you to them straight away. It's in the NICE guidelines (the national guidelines that Drs follow) that severe endo should be managed within specialist centres. You can look for your nearest endo centre here...bsge.org.uk/centre/
I'm sorry you're having to experience this. Hopefully you can get it resolved asap.
Thank you so much for the reply. The surgery was not performed by a specialist in fact i learned after the sugery that it was performed by the student resident. I signed consent while on morphine and being rolled down the hallway to surgery. I wish I had gone to a specialist. I'm pretty devastated with everything that has transpired.
Oh you poor put thing.
I guess with emergency surgery, they're really just focusing on the crisis. It really doesn't sound right though. I'm dealing with my own medical mess up at the moment, I know how awful it can feel to be let down by the people you've put your life in their hands.
But, I guess you're left dealing with the reality of now, which is, you have not been treated for endo, its still there. It'll be difficult to know for sure what you're dealing with as your surgeon isn't experienced but the recommended way for dealing with severe endo is for it to be excised by a bsge surgeon. This is a way of removing it that kind of cuts it out from the root. Hormone approaches to endo, don't actually 'treat' it, they just reduce symptoms, which could be fine for people with minimal endo that isn't very aggressive.
I really think you need to ask your GP to refer you to the nearest endo specialist centre to get some information from people trained in endo. It's a very complicated disease. If guess they'll want to give you an mri to see what's going on.
You've got a lot to get your head around but just keep using this forum. There's a lot people with experience and knowledge here.
Take care x
Thank you so much for the compassionate response. I'm so sorry you are going through a difficult time as well. As I'm typing this I've started bleeding as I missed one single pill (I'm on continuous pill birth control to help control the endo). I'm feel pretty sorry for myself but I always tell myself it could be worse. Hugs to you xo
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