Does endo have to be severe for organs to... - Endometriosis UK

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Does endo have to be severe for organs to become stuck?

Elm98 profile image
5 Replies

I feel like I’m posting question after question on here purely due to post lap questions.

I had my diagnostic lap 4 days ago now and the surgeon found Endo on my left ovary, pouch of Douglas and he said that my pelvis was stuck but that he managed to unstick it and no damage has been done to my organs. Now surgeon came to see me when I had woken up from surgery and I didn’t actually realise how out of it I was. He said no follow ups till 6-8 weeks (when I had had a period and seen how that was) and any problems to go see my gp. What I’m really confused about is a few things he told me it was very minor endo that they had found and they managed to fix it all with diathermy, that my pelvis was stuck but they managed to unstick it (he didn’t tell me where it was stuck so I have no idea, the pelvic area is pretty big) he didn’t tell me a stage and in my anaesthetic state I didn’t think to ask. But if organs are stuck does that generally mean a higher stage of Endo or can it still be minor and get stuck. I feel really stupid asking these questions but I honestly don’t know enough about the ins and outs of endo.

Thanks ladies

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Elm98
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5 Replies
lizzyxx profile image
lizzyxx

Minor is stage 2 I think as stage 1 is minimal and stage 2 is mild x

Elm98 profile image
Elm98 in reply to lizzyxx

Ah thank you, just now starting to think about it so goodness knows what I’ll be like in 6 weeks. X

Tillyfloss profile image
Tillyfloss

hi. How you feeling? Hope you are being kind to yourself whilst you recover.

when organs are stuck together it's often referred to as a frozen pelvis, it can be a range from very little to fully frozen with no movement ( not pleasant as I know first hand 🙉) of the organs like they should be able to do. By the sound of it it's been caught early, was the surgeon a Endo specialist? Right a list as you go I had so many questions for them at the follow up!! Xx

Elm98 profile image
Elm98 in reply to Tillyfloss

I’ve been suffering for around 10 years with the same symptoms but my surgeon said I’m lucky in a sense that it hasn’t progressed aggressively although has given me a fair bit of pain over the years. My surgeon is a general gynaecologist and not a specialist but he is the head doctor in the department and seems to know his stuff on endow and could get rid of all.

I was feeling good for a few days and had stopped bleeding a couple days after surgery but I’ve started bleeding today a week after surgery (pill withdrawal bleed wasn’t due but surgery bleeding had stopped so no idea what it is) and having quite a bit of pain but nothing too bad really. Tired and getting back to normal.

Have they managed to fix your frozen pelvis?

Tillyfloss profile image
Tillyfloss

hi. Gosh you have suffered a long time with it, have they got a plan for going forward?

I only found out by accident I had it, they thought my appendicitis had ruptured but it turned out to be a ruptured large chocolate cyst, caused an array of problems mainly because they couldn't remove it which is when we came across the endometriosis specialist who was as good as his reputation! Yes after a 6 hour surgery my organs can move again, it's aggressive and will come back but a year on and I'm feeling well. Thinking about ivf at the moment but I'm worried it'll kick it all off🙉. They can't remove the large nodule and my bowel and bladder are beyond surgery so we know we'll have problems down the Line so making the best of the here and now.

my first op caused random bleeding, they didn't seem to concerned just said to look out for clots and go and see my gp if it didn't settle which might be worth it, if nothing else it'll put your mind at rest it's ok. I rushed back to normal after my first surgery and I never really felt well. The second one I took my time, I actually didn't walk the dogs for 6 weeks and left the hoovering for anyone that would do it! Really helped I felt brilliant at my post op appointment.

good luck and get writing your list of questions! Xx

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