Does endometriosis comes back???

I just had 2 lap procedures this month to remove the adhesions all around my intestines and chocolate cyst( stage 4 endo)..My doctor told me that I am now"Endometriosis Free" as in "zero". I should be happy to hear that but when he said I don't have to take any medicine at all to avoid recurrence of endo, I was quite worried and actually in doubt. My doctor told me I have nothing to worry and assured it will not come back again..but at the back of my mind Im scared that without decapeptyl, vissane or any medicines, I will have my period again and so with endometriosis.

Please,could anyone tell me that my doctor is right when he said it won't cone back again or Im just being paranoid????

Thanks in advance

7 Replies

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  • If it was excision surgery there's a possibility of it not coming back however if it was by general gynae then it probably will.

  • Thanks hannah117..I was thinking the same. Endo is not new to me I had this since I was 18 and now in 37. Been to different doctors and diff kinds of treatment but it keeps on coming back and it got worse the last time since I stopped from any medication after I had my frist baby in 2011.

  • I think the risk of reoccurrence is high.

    When I had my first lap I had Prostap afterwards and then Cerazette. Unfortunately I didn't get on well with Cerazette. I had constant bleeding and felt very angry. So I asked my consultant if I could stop taking it and try without medication. This was a mistake on my part because within 4 months my endometriosis was back and I had to have another surgery. I now have a Mirena and after 4 months initially of spotting bleeding that has settled and I'm doing well.

    I would be wary of trying to manage without any medication, unless you were trying for a baby. X

  • Thanks Janine33 I have endo for almost 20 yrs now and been to alot of doctors and different treatment. I had an IVF to conceive and now my son is 5 y.o. I thought I was ok and didnt continue with any medication.Not until 2015, I was in and out of the hospital..adhesions was gone out of control.it damaged my left kidney it was removed. Then i had partial hysterectomy.Few months later i was rushed to e.r to find out that adhesions was all over my intestines and ureter. They cant make an open surgery so I had a lap last august2016 and the 2nd one January2017..I feel I will make the same mistake again if after all this operations I will not take any medication. My doctor is specializes in endometriosis and his the best/well-known surgeon here but I dont really know why he doesnt want or will not put me in any medications again..im really confused

  • I'm also really confused about why he wouldn't want you to have medication or the Mirena etc to try to stop endo reoccurrence. I'm sorry to be negative but it sounds from your history like it would reoccur without ongoing treatment X

  • Janine33 this is how i feel too:( since yesterday i cant stop thinking why and i kept on asking him are u sure i dont need any medication??anyway i still need to go back to him since i still have a stint in my ureter and he will remove it after a month.i will do ask him again or see another doctor for 2nd opinion..

    Thanks again and hope your journey in this endo is getting better

  • Was it all done at a BSGE Clinic? (assuming you are in the UK, that is) Read about them on the 'Endo Uk' site - link at top of page. Treatment here is far better than with a general gyaenes - but can only be arranged by a GP referral, as it depends on the extent and seriousness of your endo. GPs should know the protocol for referral, however, some of them don't seem to know, and lots of women who should go to BSGE Clinics are still seen in routine hospital clinincs. See 'Endo Uk' for the detail, talk to their advisors.

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