Returning pain - please help!

I had a laparoscopy in December where I had endo removed from my USL & pouch of Douglas. As far as the surgeons are aware - I should now be endo free. HOWEVER, this past couple of weeks I've had grumbly period pain as if it is returning (only 8 weeks post op).. on Saturday I passed out and vomited because the lower abdomen pain was so intense. Has anyone else experienced this??? I have had this intense pain a few times before - I had an ultrasound as they thought it could be cysts popping on my ovaries but it wasn't. My surgeon said if anything returns I'd need to be referred to an endometriosis clinic.

I just want some advice as whether I should go back to the doctors or whether it could still just be healing pains? As obviously if I go back then another op is the only option...

5/6 times I've had the intense pain has been after intercourse, not sure if this is the same with anyone else.

Thank you x

12 Replies

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  • Was it excision surgery or diathermy, diathermy is often used by general Gynocologist's and they tend to only get the first few layers of endo as to taking out the whole growth, utrosacral ligaments tend to be a case of deep endo.

  • It was diathermy x

  • Then it probably came back, are you in the UK?

  • Do you know if isn't possible to come back so quickly? Yes in U.K.

  • If it was just diathermy they didn't actually remove all of it so it was there the entire time they jut removed the first layer.

    Ask you GP to be referred to the nearest BSGE centre, they had endo speacilsits who will excise it.

  • Well it was on my surgical report that they had removed it all

  • However diathermy is burning off only the first layer of it, that's what general gynaecologists do, they didn't actually remove it, they just removed what they saw. With excision they go a little bit into the tissues to remove all of it and a little bit of tissue.

    What they do with diathermy is remove the superficial endo, endo on uterosacral ligaments and pouch a Douglas is deep infiltrating endo.

    The thing is when endo attacks an organ over time the rogan can build layers of scar tissue on top of the organ which hides the deeper lesions in some cases.

  • That makes sense, think I'll go back and see my GP, thanks so much for your help!! Xx

  • If you have it on your uterosacral ligaments this is possibly rectovaginal endo and general gynae are supposed to refer you straight on to a specialist centre and not attempt to treat it. It is possible that they have left some behind as it needs to be excised and this needs an endo specialist. Please go back to your GP and ask for a referral to a specialist centre

    This NHS doc has a bit more detail:

    england.nhs.uk/commissionin...

    and the bsge centres are listed here: bsge.org.uk/

  • I'm literally in exactly the same position - 8 weeks post op from diathermy to remove stage 3 endo from USL and pouch of Doug. My surgeon also told me he got it all - my bowel pains have been getting increasingly worse for the past 3-4 weeks and now just got my first period since the op and it is HORRENDOUS (far less bleeding - possibly due to mirena) but cramping and bowel symptoms are just as bad as they were pre op :( I'm really relieved to see your post though as at least I'm not alone - although I obviously wouldn't wish this on anyone. Did/do you have a mirena? I'm also going to go back to my GP. Surgery follow up is in 2 1/2 weeks for me so hopefully they can help then. Hope you see some improvement / find a way to cope for now and I'm sorry this has happened to you too x

  • That's exactly the same as me! I refused to have the mirena fitted as I've had a bad experience with it before, so currently on the pill taking 3 packets back to back. When I left the hospital it took a week for the surgeon to call me and tell me I was 'endo free' with NO hospital or gp follow up or anything what so ever!!! I went to the gp off my own back to ask what to do about my stitches! I feel so pushed away and like I barely know anything that's happened :( so sorry to hear about your situation too!! Xx

  • I can totally relate to what your saying. I had my endo removed the end if November 2016 and within 8 weeks the pain came back, and made my sick. I have good days and bad days. The bad days I feel emotional, weak, tired and terrible pain. I had a mirina cool fitted at the same time so think that has messed me up a bit too!! My gyno offered me the hormone injection and the mini pill, I've declined both as think my body is trying to get used to all the changes it can't deal with anymore. As long as I have my hot water bottle, painkillers and supportive husband I can get through this evil endo!! Xxx

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