Endometriosis UK
34,174 members30,549 posts


I had a laparotomy for a chocolate cyst with adhesions just over 3years ago. I feel I have been somewhat paranoid ever since as I knew nothing of it until I experienced difficulties urinating so went to the doctors with query Urine infection only to discover following an examination that I had 'a large mass' in my abdomen. I get continued abdo pain sometimes more severe than others, but I don't feel I am taken very seriously when I see the GP. They say they have no record of Endo on my medical record but the consultant told me I had endo and poly cystic ovaries. I have no treatment or meds I am interested to read about the mirena coil option so I may go back to discuss with GP but may be hard if they don't believe I have Endo according to their records.

1 Reply

Contact the hospital where you had surgery - each clinic and hospital currently holds their own records on you - very little gets shared between them and one letter astray in the post and your GP has no idea on the results from hosp and won't chase it up unless necessary.

If you contact the hospital and ask for a full copy of your patient notes to be either sent to you - which you can copy and send that on to your GP - or ask the hosp to forward the notes to your GP as you are seeking further treatment for the same illness and GP has not had a report - that should hopefully get the data on the move again. Under the FOI or freedom of information act you are entitled to a copy of all records held on you by any agency (in this case the hospital ones).

I came across this problem on holiday last week.

Had cause to visit one hospital - near where I used to live - they still had my old address- they then sent me to another hospital (the one where had my big endo op) and the address that they had was my sisters one - which I had given as we had sold the house the week of my op and I needed any letters and reports forwarding c/o my sister.

So in spite of registering with a new GP and a new hospital closer to new home - the old places had a variety of old addresses for me - clearly data is not being updated universally across the NHS. Chase it up yourself and ask your GP to also chase it up. Keep a record of all your letters to and from the hosp.


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