Heartbroken emotional mess after surgery

So i am sat on the ward after having my second lap this afternoon to be told theres no visable endo on the surface of any organs. But there may be some deep so they cant see it and theres no way of finding out.... i cant tell you how broken i am after them telling me this. I am in agony everyday and have all the symptoms. Can anybody help and advise me what i can do please? 

I was diagnosed 7 years ago and told i had multipul cysts on my ovaries and the morst severe case of endo the consultant had ever seen. So it doesnt just disapear... or does it? Please please please help me i cant stop crying 

Thankyou xxx

6 Replies

  • Aw you poor thing, are you being seen at a bsge centre by a endo specialist, have you had a MRI scan, don't give up, xxxx

  • Oh Hun my heart goes out to you. Sending lots of love and very gentle hugs.

  • Hi Vickie - you will clearly be very emotional but they are quite wrong if they say there is no way of finding out if you have deep endo. You have had it a long time and have symptoms of deep disease but it is rarely found at a lap in general gynaecology. There is a procedure to be followed and this must include an examination to feel for any deep 'nodules' of endo but it is very unlikely that they have done it. Also an MRI scan finds deep disease. So please be assured first that if you have deep endo it will be found and also try and take comfort from the fact that if they had attempted to find it and treat it they could have done you an awful lot of damage. It must only be dealt with in a specialist endo centre. So try and get through this and when you are home and feeling a bit better come back to us so we can guide you on how to go forward from here to better care. xx 

  • Thankyou lindle i really appereciate your help. I feel asthough i have been made to feel like im making it all up. The consultant told me they dont havr my notes from the diagnoses. I am going to contact the hospital myself and get them. 

    They have said my bowel is loaded and i need to start taking laxatives regularly. 

    And have given me a leaflet on chronic pain and told me to go back to gp. 

    They have also fitted me with a merina coil. I really need to sort this asap i cant live like this anymore xxx

  • Oh, bless you. There is actually a special scientific word for 'in the head' which I am convinced was invented for endo patients. It is 'supratentorial.' I tell myself that one day I will write a book called 'The silent suffering of the supratentorial.' After I went undiagnosed for 20 years I finally saw this in my medical records and realised why I had been written off for all those years. I was actually handing over letters to consultants telling them this was my problem. So take comfort from that, the fact that you are among tens of thousands being told the same and for one reason only - the ignorance in general gynaecology.  

    Yes, wait a couple of weeks then you can get the operative reports from your GP practice - not only for this lap but for the one done 7 years ago. I think they will both be very revealing - the first for the extent of endo you had which was probably just burned and this latest one for the limited investigation that they probably did. There may be a small charge for the reports but it shouldn't be much. Ring the reception to ask what they need from you and you don't have to give a reason. Then come back to us. You need to convert how you are feeling now to positivity and resolve to now drive the treatment process yourself and with our help you will do it. But for now just allow yourself to rest and recover. xx 

  • Ok so after an awful nights sleep and horific pain all night i have looked at my paperwork and it says on my discharge letter I have a loaded/Distended bowel. And they have printed the photographs off of the POD my bowel left and right ovarian fossa pelvis (ureter) it says peristalsis seen and a picture of my uterovesical fold. So they havent checked my bladder which i am having symptoms with. They have also written there may be subclinical endo that could not be seen or treated. Can you explain what all this means please? 

    I am also under a general medical consultant in manchester and i have an appointment on wednesday to see him. I want to have my facts right so i can push for an mri scan. I also have bupa cover with work and my account has just started again on 1st april so i will go through that so i dont have to wait. 

    Thankyou xxx

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