I knew this dr wasn't going to help x x

Second lap yesterday (22/4/14), the dr has decided that there is nothing wrong with me and it's all in my head :-( yet my last lap and my MRI said I'm covered in all sorts. I also woke up with a coil... Never agreed to that?!? I have so much pain most of the time, I bleed clots the size of golf balls, my belly swells up so much I can't fit into my of my clothes, I bleed from my bum, I get pains that bad I poo myself. How can there be nothing wrong? I was meant to be a day case but I'm still here because I'm in pain!! The dr says I don't even need a post op appointment and I need to get my gp to refer me to the pain team?? Covering pain isn't fixing it :(

This has been going on for 10 years, why won't they help me :(

11 Replies

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  • That sounds awful, I'm really sorry you are going through that :( is your Dr an endo specialist or a gynae? Do they know what they are looking for? Is it worth trying to get referred to an endo specialist centre for a second opinion? I really hope you get the help you need soon! Xx

  • That's awful :-( can't believe some of the stuff I read on here. As said above, maybe try and get a referral to a specialist. Keep fighting. Good luck xx

  • I think he is a specialist :-( he's definitely one of the top guy at the hospital.

    I'm asking for a second opinion, I'm convinced he was getting revenge for me having a go at him x x

  • Hi Jofus sorry to hear it didn't go to plan. Have you found his name on the BSGE website? If not the he is not a specialist.

  • Jophus - have you been checked and MRI scanned while you are on a period for adenomyosis?

    If no endo is present then adeno must be the next likely candidate. It only grows in utreus and bowel muscles cannot be seen in a lap and yet works the same as endo in that it bleeds every cycle trapping the blood in the muscle and causing much the same pain symptoms as endo.

    adenomyosisadviceassociatio...

    Easier to fix too by surgical removal - hysterectomy or bowel resection and it is all gone. It doesn't spread to anywhere and everywhere like endo can which is the main difference between the two diseases so the cell types are different in that respect but still controlled by the monthy cycle of hormones.

    At the very least it needs to be checked and ruled out.

  • Hiya hun,

    Hmmm, I sort of know what that feels like. Did they tell you this AFTER having a lap? If so, then I am assuming that

    a) They found nothing that appeared to be Endo (in which case - what did they find?)

    or

    b) They did find Endo, but not nearly as much as was expected (which is irrelevant, in a way, as even a tiny amount can cause pain - so what are they going to do about it?)

    or

    c) They made some kind of bodge of the op!

    After my first Lap, I remember being told very little. I was told that Endo had been found (but never where, or how much, or what stage) AND I was told it had been fully removed. I was DISCHARGED from the service not long after with NO follow up. Appalling! Especially given that very soon afterwards, I found myself in such intense pain, I had to be taken by ambulance to A&E. This happened a further 3 times! My lap had been in April, and by December I was having a SECOND lap (at a different Hospital, as I demanded referral elsewhere). Guess what? My Endo HAD NOT BEEN FULLY REMOVED! Hence my pain and ongoing symptoms. I have since had 3 further surgeries!

    I am in a similar situation once more. I had a lap last month due to ongoing symptoms - lower back and pelvic pain, worst on right side - exacerbated by movement. Diarrhoea that is worst during my periods. Constant feeling of needing to pee. Bloating like you cannot imagine (I look PREGGERS during my period!). Water retention, fatigue (the worst symptom, I would say), and nausea (worst during my period). My pain is constantly there, as is my fatigue. I find it all very frustrating.

    Anyway, I had the lap. As per normal, they came to tell me what they had found whilst I was still groggy from the anaesthetic (particularly bad, for me, as I have a severe reaction to anaesthetic that makes me really ill). I have no idea why they do this! As if a women can understand and take in what she is being told when she is sleepy, still semi-paralyzed from anaesthesia, shaking, pale, sweating, and vomiting into a paper cup! THAT's what I was like - so I recall very little of what was said - other than that they found Endo, and they did a Biopsy.

    So, I had to wait for my appointment... I then got messed about over the date of this. It was rearranged twice (at short notice) by the Hospital. This really worried me, as I have always had good treatment there, and for there to suddenly be such a change to bad treatment was a real shock! Anyway, at the appointment I was told they were confident they had removed all my Endo this time (it was between bowel and anus, and on utero-sacral ligament) as well as removing all my adhesions. They also said my Biopsy had come back inconclusive, as it did not show Endo (so I suppose the Biopsy came from a different area to where they removed my Endo - I am confused!). I was also told my pee problem was probably not Endo-related, and got referred to a Urologist instead. Now my Endo team want to discharge me back to the care of my G.P.

    I've told you all this as I wonder of it sounds similar to what you are dealing with. You see - I feel confused and scared. On the one hand, I feel I should be delighted to have them tell me they have "removed all my Endo". I really do want to be able to believe this! However, on the other hand - I feel uncertain as to what actually went on, and what they found, during my op. Clearly I still have symptoms, but I'm being told they are not Endo. I now have to see a Urologist! I am not sure what the Biopsy was (unidentified tissue?) - all it was described as was "connective tissue, fat cells, and muscle cells" I think. This means nothing to me. What was it? A cyst? Scar tissue? Muscle cells, fat cells etc. growing in the wrong place (i.e. on my abdominal lining)? I am utterly baffled! Also, I have had numerous laps, and each time to date, my Endo has still remained present, with symptoms. I am not certain whether it can be conclusively removed. THIS is why I am scared, and uncertain as to whether I want to be discharged. I feel that if I am - then I am left to fend for myself all over again, should my Endo symptoms get worse. It puts me back at "square one" having to wait all over again for referral!

    One thing I did notice is that the specialist centre that I am under is short-staffed. On the day of my appointment there were THREE women there having arguments with staff about rearranged appointments. Two were sent home with appointments for a later date (after much to-ing and fro-ing) and the third (who was lucky to have her husband with her to help argue her case) was rearranged for later that day. NOT good. I began to wonder whether they wanted to discharge me (and possibly other women too) because of short-staffing. I have NEVER seen the department like that before - so disorganised, with so many disgruntled patients. Until now, everything has run smoothly.

    If I were you, I would DEFINITELY stick to your plan of getting a second opinion. This is YOUR body and YOUR health at stake. I believe you have every right to want to know that all is well - that you will be listened-to, your symptoms addressed and investigated, and any underlying problem treated. DO check you are under an Endo Specialist (you can check centres here bsge.org.uk/ec-BSGE-accredi... If you are NOT under a specialist, I would advise seeking one out and getting a referral made. Even then, don't hold your breath - it took me AGES to get a specialist, and now it looks like I may be back without one!

    The other thing I would do is to telephone your present Gynaecologist's secretary, and explain things. You need to let them know that you are unsure as to what went on during your lap, and what was found. Explain that you are confused - add that it may have been due to effects of anaesthetic - and need to have things made clear to you. Explain that you do not recall discussing a coil, or giving consent. If possible, demand that a follow-up appointment is made for you. In respect of the coil, I would advise you to read up on the NHS CONSTITUTION, which says patients have a RIGHT TO CONSENT (i.e. that any treatment they have must be consented to by them). You do not recall giving consent. Quote this fact, if needed, to highlight your concerns and to emphasise why you need follow-up. (For info on the Constitution read nhs.uk/choiceintheNHS/Right...

    Finally, it is also useful to be aware that your Hospital will have sent the results of your surgery (lap) to your G.P. and that you may be able to meet with your G.P. to discuss the operation. This could be a useful thing to do - especially as you feel they did not tell you much at the Hospital. If you have a good G.P. then they may be able to tell you more; and you would have the chance to discuss why it is that you may be seeking a second opinion. So, it may be prudent to book an appointment with your G.P. as soon as you can.

    I do hope that you are able to get things sorted out, as I can imagine you are intensely frustrated (and possibly worried) at present. Be persistent, and know your rights. You evidently still have symptoms that need sorting out... and it is in everyone's best interests for this to be done ASAP. A second opinion is a good idea. Good luck.

    Best wishes & sorry for the long reply,

    Elaine. x

  • I think I remember you saying you were on GNRH? Could this have had an effect on any endometriosis you did have?

    I know it doesn't seem good news at the moment, but having the result of "no Endo"..... Is great news!

    Hopefully they will find another reason for your pain. Have you been checked for things like :

    Adenenomyisis

    Diverticular disease

    Coeliac Disease

    PCOS ?

    I have PCOS and I sometimes grow large "simple" cysts. These give me a lot of pain! These show up on a scan and disappear by the time I have my next scan.

    I hope you are soon allowed home.

    Barbara x

  • I was on prostap which shrinks endo and cysts.

    They aren't looking into what's causing my pain. They don't care. Iv been discharged from gyny as phsycoscematic, it's all in my head. They aren't even bothered about helping with post op pain. Iv never felt so sick. But they don't care. I'm still on a trolley and not a bed. I fell out with my surgeon a few weeks back and he's got his revenge by treating me like poo. He even smirked while telling me there's nothing wrong with me. I have letters from other doctors who have all seen endo on a lap and scans :-( whys he lying to me. I'm in agony from yesterday's op, way more then what's acceptable. Not even managed to eat yet. My legs and feet are so swollen. But no one cares. They are going to send me home later even without eating or being able to walk properly because I'm not important.

  • Hi You are still in pain because you still HAVE endo. I have experienced this 3 times now, (3 different surgeons) all said the same thing that I haven't got endo when waking up from the ops. But my body told me differently and I still had it every time, still do. 1st time gynea told me it's all gone I accidentally found the 'truth' on the letter sent from gynea to gp stating I still had it on my bowel and he didn't want to remove it from there. 2nd time I was told this I knew instantly after op I still had it and a few months later ended up having my 4th op (3rd gynea) excised the huge nodule that 2nd gynea left in. Now 3rd gynea told me it's all gone I can feel it on my bladder as I now know the symptoms cos I had it removed from there before with 1st gynea. Hope my explanation isnt too confusing with all my diff gyneas I have had. Ok I may only have a few spots of it left but I'm back to square one as we all know it grows and you can only have one small spot of it and get full blown symptoms. Seems to me it's just a waste of everyone's time and our lives having multiple ops with these useless gyneas who just don't bother to try and help us thoroughly and properly. Disgusts me every day especially poor ladies like you who are humiliated telling us it's all in your head. X

  • Last time I had food was Monday afternoon. But because my lap came back as clear there is no reason for me to be hurting enough I can't eat. They are treating me as if I can't have post op pain because they didn't find endo. They didn't find endo because I had some removed last year and I had prostap before this lap. They took biopsys but my dr is so arogant he has discharged me from his service without even waiting for the results :-( they also found 3 surgical clips left behind from last years lap. But they won't disclose to much about that. I'm still in hospital as I still can't eat or drink. But they have taken my iv out so I'm nearly blind with dehydration. I'm covered in a rash all up my arms, boobs and face yet I had to beg for pirition. It's really sore. My cheeks and nipples are so swollen and red they feel like they are going to burn off. Also my legs are really swollen so my socks are cutting the circulation off but they don't seem bothered about that either. I asked the dr about adenmyosis (can't spell) and she said they don't test for it as they can't cure it so there's no point? I just want to keep food down so I can go home :-(

    My dr is a specialist that's on that list, he says there is nothing wrong with me then no one will believe other wise. My dr has hated me from day 1 for Some reason. I cried when he first examined me as it turned out that was the first day I had glandular fever. When he mentioned that iv 'over reacted since day 1' I tried telling him it's because I had glandular fever and he said I was lying :-( he's just mean. He won't even come see me even though I'm still in hospital x x

  • Omg they left 3 clips, I am surprised they even let you know that info. Pm me where you are and your gyneas name, I had one of those on that list too and he took an instant dislike to me too and also dismissed me off his list. He lied to me saying mine had all gone when he operated on me and left a huge PoD nodule inside. You need fluid inside you. Can someone pour you some water. X

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