Can anyone tell me if they had been diagnosed with stage 1 endo but this has got worse over time moving up the stages?

I've recently had a lap and have been diagnosed with endo. I was still a bit out of it after op when surgeon came to speak to me, so not sure of what stage I was classed as having, I couldn't think to ask questions at the time. I remember he said they removed a small amount and left some behind that is all. I'm concerned that they left some because I'm under the impression this is a condition which 'spreads' over time.

I was wondering if anyone has been diagnosed as stage 1 and progressively got worse over the years? Even with diathermy and medicines prescribed to keep it at bay. Or if anyone has been the opposite where treatment has kept control of the stage their endo is at?

Basically, I'm just looking to see if anyone has had any regrets with their course of treatment and how they would have done things differently perhaps? Or if anyone's treatment has successfully kept endo at early stages?

I'm sorry to ask a question which will undoubtedly have wide and varied answers. I just want to avoid making any bad decisions which could make things worse in the future.

Thank you in advance

Eva xx

7 Replies

  • I was dignosed with stage 1 in 2007 and now stage 4. This is despite having two laparoscopies and treatments. I have been on GnRH therapy twice for over 6 months each time. (I am now on it now for 3rd time following full abdo surgery in August and will be on it for a year.

    So my treatment hasn't really helped tbh. But that doesn't mean that will happen to you. I have what my consultant said was aggressive endo (never knew it could be aggressive). I've had surgery 2 yearly since my diagnosis. And in the last two years since my last surgery and treatment I'm now severe endo and totally fed up. Next stage will be hysterectomy.

    Everyone responds to things differently, so it is trial and error. I know i didn't respond to Mirena coil, pill, depot and wouldn't recommend them due to my experiences. But you will hear from people who have had great results from them.

    Educate yourself and don't be bullied into anything you don't think will suit you. It's you who has to live with this.

    Sorry it's a ramble I blame the time lol

    Feel free to ask any


    Amanda x

  • Hi,

    I was diagnosed in 2008 with 'mild' deposits, despite huge amounts of pain and problems with my bowel and reoccurring cististus (sp?). Id been fightin for a diagnosis for about 8 years.

    The op was a total success, i had diathermy, and I had a mirena fitted.

    I had about three years of no pain, but the mirena started to play up in 2010 and I had it removed.

    The pain came back with avengance and by 2012 I was desperate for another Lap.

    I had my second lap in September 2012, and then had constant daily pain afterwards. During this second lap they found more deposits in the puch of douglas and a chocolate cyst on my right ovary. I had another mirena fitted during the op. I was certain that the mirena was causing the pain, but no one would let me have it removed. I had it removed last week... And feel much better already!

    Since the op I've been put on Zoladex, and have now been using that for over 10 months.

    Basically... My experience is that just because you have stage 1 doesn't mean you are directly on the road to stage 4.... I have never really discussed "stages" but according to what I've seen on the net, cysts equal stage two or three. So far I'm lucky and have no adhesions... (I don't think!).

    I would try and avoid surgery in the future... I didn't know the risks of adhesions... But they are mainly caused by invasive surgery. Not that it doesn't work... Because it sure does :-)

    Make sure you have a good gyne, and try and take control

    Of your own treatment...

    Zoladex isn't as bad as you think.... And it's given me my life back. I hope now the mirena is out I might be able to come off the Zoladex for a while as it is really really strong!

    Anyway... A few rambling thoughts... Main this is to look after yourself... I think stress is a massive factor! So stay happy!

    If you've got any more questions I'd be happy to help... Endometriosis is a tough thing to deal with, but it can be managed!


  • Hello.

    Sometimes Endo will move up the stages but equally at times it just stays at the mild stage. Unfortunately there is no way of telling what will happen in your case.

    Also the stages are irrelevant to indivuduals and their symptoms. A lady with only minimal Endo can suffer from severe pain etc. and also a lady with severe Endo may not have any symptoms.

    The advice that worked for me was to have children as early as possible (I had my first at 23) and if I had waited I think I would not have had the three children I have. Also to have the endometriosis monitored by scans on a regular basis. Oh and be very pushy and informed when it comes down to your relationship with the doctors!

    Best wishes.

    Barbara. X

  • Everyone is different i know a lady who has loads and has no pain and mine is mild and im in agony with it, i think you just have to trust your consultant and give them as much info as you can so they can try/treat/opearate when they need too. good luck xx

  • Thank you all for your replies, it's really helped reading your experiences. I'm trying to avoid just jumping in to the first treatment offered, through lack of knowledge. I've got a list of questions to go to my post op with now, instead of having no clue what to ask :)

    Thank you all again I really appreciate it and wish you all the best with your treatment too xx

  • Hope it goes well Eva!

  • Staging of endo isn't so much down to the amount of endo there is, but more so based on where endo is found xx

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