Surgeon says endo is gone yet GP says it's not possible?! Feel so lost

I had my 2nd lap at the beginning of September (first was to diagnose endo last year, second was to see why hormonal treatments weren't helping pain) and I was told by the nurse that all the endo had cleared up (I didn't get to see the surgeon). I was so shocked and obviously elated to hear this and they said my pain was probably due to IBS, which I could learn to manage. 1 month after the lap I started to bleed irratically (I'm on the depo injection and shouldn't have periods) so went to see my dr who put me on the pill on top of injection. Bleeding hasn't stopped and symptoms of endo have carried on (painful sex, heavy bleeding etc). When I saw my GP today she was angry at the surgeon and said endo cannot go away and she's told me to tell them I want a second opinion. I'm so confused, has the endo really gone away? If it has, why am I still having symptoms. If it hasn't, why on earth did the surgeon say it has?! Got my follow up from lap on 15 dec. any advice on how I can proceed? I just want to know what's wrong so I can try to deal with it!

Sorry for the massive post!

8 Replies

  • Hi,

    sorry to hear that you've been left confused.

    Did they remove anything in the second lap or just have a look around? Ive never heard of it disappearing on its own. Did the surgeon send a report to your gp detailing what they did/didnt find?

  • Hi Michelle, the surgeon said pre-op if he found anything he would try to remove it, but after the op, the nurse and anesthetist said that he found nothing (even though 11 months earlier the same surgeon found mild endo). He wrote to my GP just saying the lap was carried out and "no endometriosis was found and there was no evidence of scarring". Nothing else, that was it!!

    My GP was furious that that was all he had written and the fact that she knows there has never been a case where it disappears, even with hormonal "treatment". I just don't get it!

  • That sounds bizarre. Fingers crossed you're a medical miracle.

    When you go for your follow up, might be worth asking if the took any pictures. I had my surgery done privately and dont know if its something they usually do on nhs, but I had pictures taken which the consultant showed me after my op. My endo was found when I was in surgery to have my appendix out and they took pictures that I was able to keep to take to my first gynae consultant appointment.

    Seems like on the nhs you have to wait a long time for your follow up apt, mine was 2 weeks after surgery, then another 3months after (waiting for that apt to come at the mo).

    I hope you get the answers you want soon. Being in limbo about what is wrong is the worst.


  • Hi. I was told the same on my last op this yr that it had gone but we all know it cant just disappear. I was told it could of moved.

  • Hi Cala

    Sorry to hear you've had the same experience as me. May I just ask what you did next after being told this? Did you ask for a second opinion or were you continued on a "treatment" plan for the pain or anything like that? I'm not sure what I should do next as I really don't think the surgeon is right to say there is nothing there when it was clearly visible only 1 year ago at diagnosis!

  • hi i went bk to my doctors a couple of months later and cos of the pains i was getting had come bk. he sais it cant go away possibly has moved or they missed it..

  • Hi - Sorry to read of your turmoil.

    Have you checked out the background of the consultant you are under. It is very important as the levels of expertise relating to endo differs quite markedly. He doesn't sound like an endo consultant surgeon and I am guessing he is a general gynaecologist. I posted yesterday about the differences between the consultants' levels of experience / training in treating endometriosis, particularly general gynaes, and the outcome of surgery. If he was not a really experienced and trained gynae consultant who has gone on to be referred to as an Endo Consultant by specialising in this condition, it may well be that he just isn't suitably up to spotting anything other than obvious endo. It can take other guises than the usual lesions and can be red, white, black, and can even be unseen beneath the surface of the peritoneal lining. It an take a very experienced endo consultant to spot all forms of endo.

    The only way to effectively deal with endo is to have it removed surgically by by excision (laparoscopy keyhole surgery). The drugs just temporarily shrink it. It is likely that this was why he thought he could not see any if you have been on these drugs.

    Some surgeons recommend taking these drugs to shrink endo before an operation to make surgery quicker and easier (again usually the gynaes) but the 3 top endo consultants (and probably others) say that they would not go down that road as they feel it is better to be able to see what you are dealing with rather than only be dealing with what the drugs have not temporarily shrunk, otherwise there is a likelihood that when the drugs cease, there will be more endo appearing that was not removed at the time of the op due to it not having been visible.

    Painful sex can be an indication of endo in the Pouch of Douglas (space between rectum and vagina), although this may not necessarily be what is causing your recent episodes.

    I think it is a good sign that your GP is behind you on this and switched on and is offering to refer you onwards for a second opinion. If you decide to follow a second opinion up, I would ask your GP to make sure the person you are referred to is an Endo specialist consultant at an accredited endo centre. A list of these centres can be found on the UK website.

    If you are able to go private I can certainly privately recommend a top notch consultant but there are also others on the NHS that are at accredited centres.

    All best wishes

    Frances x x

  • Then i found a new specialist who is fantastic.

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