Cured??? Or as close as it can be! Massive surprise!

In December I had my severe endo excised (cut away not burnt/lasers). A small amount was left on bowel as this would mean an even bigger op and surgeon just didn't think it was worth the risk with my age. I went back for my 3 month post surgery appointment and have been told it WILL NOT grow back. I told my doc everything I had read about it coming back etc and she point blank told me that it won't! I'm literally in shock. She said burning/laser means it will come back but cutting means it won't. Anyone else heard this news before? I'm in my 30s and she said this was a factor.

3 Replies

oldestnewest
  • Excision - literally removes it deep enough that hopefully all the endo cells in each of the excised lesions are whipped away and there is nothing left to grow there again. Yes that is great news.

    But a word of caution - we do not yet know all the ways endo can spread, certainly it can spread directly from the uterus with backflow bleeding along the fallopian tubes, but if you have had the uterus removed or your tubes blocked or tied then that route of transmission is out of action and the other possible route would be through the blood stream and not much at all is known about that.

    In the sense that the old endo will indeed not grow back if there is nothing left there to grow -the news is good.

    But there is always a chance that brand new endo may start nesting somewhere else, but if it does, that does not necessarily mean it will be in a painful location or bothersome and you may not have a clue that it is newly growing.

    Nor does having excision surgery prevent your body from growing adhesions of gluey scar tissue in response to a wound site - and adhesions can be a big and sometimes painful nuisance on their own, by sticking organs together, even when all the endo is removed.

    Hopefully you will be okay and hopefully your adhesion growth will not be rampant and not disrupt your body too much, but it is still worth bearing in mind that while great news that all the endo that could be excisd was excised, there can still be complicationsthat further down the line that may become a problem.They don't in everyone, but they can do for some.

    Leaving some on the bowel endo, may not be so big a problem - depends really where it is bleeding. If it bleeds in to the bowel there is an escape route , if it bleeds in to the POD, there isn't an escape route, and it is still possible that the POD endo may be able to spread from there.

    In some ladies the adhesions we hate so much can actually block off the POD in otherwords putting a seal of adhesions over the top of the POD pocket. This would help contain any bleeds from that area escaping in the wider space of the pelvic region.

    Without knowing the exact set up inside that your surgeon saw, it could well be that they can give you favourable odds that the endo should not present much of future problem for you, and I sincerely hope that your surgeon is correct.

    But I wouldn't crack open the really expensive champagne just yet.

    You can be Cautiously Optimistic - which is as good as it gets, and is as much as any of us could hope to have.

    If you still do have periods and the uterus is intact and tubes still clear - then it is certainly a wise move to stop your periods or reduce the number significantly to increase your chances of not having new endo take route anywhere.

    May you have many pain free years ahead of you. ;-)

  • I'm sorry to tell you that I had it cut away not lazered 5 years ago & was told the same thing. However I had a lap in January & endo was found then again on a lap yesterday after only 2 months more was found. However I will say after having it cut 5 years was the longest I've ever been between laps x

  • I think the real problem is because surgeons just don't remove it all. Dr David Redwine (top USA endo consultant now retired) says that, when endo is excised it generally does not recurr - it it the endo that is left behind either because the surgeon was not experienced enough to remove it all or because it had not been seen/recognised at the time of surgery and goes on to cause further problems and repeat surgeries. Most only remove patches of seen endo. Total Peritoneal Excision removes the whole lining of the peritoneal cavity in one op (keyhole). This removes seen endo and all as yet unseen endo with good results. This op is only carried out by one surgeon in the UK as far as I am aware. It has been undertaken for c12 years with studies to back results up. Because of the complex nature of this surgery and the length of time it can take - generally 7 - 10 hours (keyhole), it does not seem to have been taken up in general by other endo surgeons. It would save the NHS a fortune in drugs and repeat surgeries and save ladies a lot of trauma if more surgeons were looking at this procedure. There needs to be a whole shake up and change in the approach to endo care with a move away from lumping it as a general gynae issue. GPs will often refer you to whoever is the gynae at the local hospital but they all specialise in a wide range of 'gynae' issues such as obstetrics/fertility/oncology/hysterectomies etc and someties endo is just a string to that bow rathe than a 100% specialism. It should be a separate medical genre treated by an endo specialist. It often requires a multi-disciplinary approach as it can involve the bladder and bowel etc and is not really just a gynae condition. It is good that there are accredited endo centres now.

    That is me off my soap box!

You may also like...