I was admitted to A & E in may, due to a torsion of the ovary (caused by endometriosis) my discharge notes did not include ANYWHERE the word, ovaries, endometriosis or PCOS.....NOTHING!!!

we must fight and educate doctors that this kind of action from them only minimises the catastrophic pain, that taking years and years to get correctly diagnosed after many of us were told It was in our heads at least once by a doctor causes, and fight to get correct terminology on all paper work and very LEAST mention the condition.

Fighting for the NHS to provide correct treatment for this disease is hard enough, do not let your doctors / hospital staff lessen this condition by ignoring its very devastating effects. I have contacted PALS at the hospital and raised the concerns, They are asking the doctor to address with their junior staff the correct ways to report on a woman having been admitted to hospital in an emergency due to this condition. The doctor on his rounds the morning after my 3 doses of morphine, noticed the on-call gynae doctor the night before had ordered a scan. He clearly told me, the cyst will have either twisted and dispersed and be noting to see, or will have been twisted and still be there. It had gone.....absolutely no mention of this in the discharge summary. Maybe it was written in a discharge letter, that we as patients don't get a copy of, however to keep fighting and getting recognition of the devastating problems this condition causes we need it acknowledged on ALL accounts. To write "reassured and sent home" is more than a kick In the teeth for any endo sufferer writhing around in absolute agony, I and most do not need any reassurance from any doctor, we need them to provide the best care and funding for this condition. PLEASE EVERYONE FIGHT FOR YOUR NOTES TO BE ACCURATE, so important.

I have recently found out the reason why mr trehans peeling technique isn't done by any other doctor is because the nhs have never considered funding the training. lets fight to get this op on the NHS!

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8 Replies

  • I can't write much just now as I'm not feeling great - but I'm sorry you had this experience. I have always asked my GP for a copy of any notes sent to him from the hospital and he has always obliged. It's always worth getting copies. I have a pretty much full set of all my hospital notes over a several year period. I sent off for them at different intervals. Thick file! I even have cd copies of my various MRIs. I agree it is frustrating when things are minimized.

  • I agree, I have too and if I changed hospital for whatever reason mainly second opinion. I also keep an emergency folder - summary of notes in my car, in my desk drawer at work and in work bag as I move about offices for work as well.

  • I had a very similar experience and due to poor notes made at the hospital when I went in and there was no gynae, to this day I have no idea what happened to me the night my dad had to rush me to A&E-I genuinely appeared to have miscarried, except that was a physical impossibility. As a result I will never know what it was and can't prevent it happening again. This illness causes stress and anxiety, we don't need that to be added to!

  • This is so true. . . Didymus you have spurred me on to do the same, I'm going to ask for everything and the pics of my last laroscopy I'm pushing for a mri next with lap and I will get copies. I've had severe pelvic ligament pain for 20 years, e Hughes that's exactly what happens with torsion of ovary, i have a mirena so also impossible I was pregnant, but six weeks bleeding now . The fact I had no periods for three years before this hospital emergency proves even stopping your periods does not stop endo. Doctors need to listen !!

  • Hi Piper,

    This even happens on letters from my consultant when I see him privately. He never accurately reflects the details of the meeting and often leaves important information out. Goodness knows what slips his mind during an operation. I hope you get this sorted out via PALS. You are right to be angry and well done for doing something about it.

    I suspected that the reason why TPE (total peritoneal excision) is not available on the nhs is because they won't fund the training and now you have confirmed this. So the nhs beancounters are making us women suffer. Would you mind sending me a PM to let me know how you found this out?

  • Hi there brownlow

    I'm happy to write on here as I'm so fed up of trying to fight the poor case we get and also every avenue trying to silence me. It was a secretary who gave me the info. That's why I'm so suspicious of notes not being written correctly. . I mean if someone went in with a broken arm would they write painful arm and that's it. I want to take this to the media the chief medical offices and anyone else who will listen as it just feels so wrong. I've started the process of getting all my scan pics before my next appointment but they even want me to pay for them. . . My info but I have to pay. They will get away with never seeing endo as a major issue if they never write the wording on notes. I feel violated that they want to put in print pelvic pain relief given. Like I was making a drama. Yet in person they acknowledged it was a very serious problem with my ovary. Every day I'm more furious, so I just want every sufferer to make sure they have correctly written notes. I'm determined to get meetings with medical staff regarding this and fight tooth and nail for the peeling op to be on the nhs.

  • I so agree with this and sorry to hear of your experience.I have had multiple admissions to hospital for burst cysts,but they are never on discharge notes just pelvic pain and uti.So I have seen cysts on scans,been told they need surgery but 1st antibiotics,they have then burst or shrivlled and next scan there is nothing.It has been said they are follicular cysts rather than endometriomas,but they are just ignored on discharge letters despite the fact that that's what make me collapse and be carted off to hospital.Never had endometriosis been on notes,despite tha fact I am being treated for it.

  • I would get in touch with pals at your hospital and put in a complaint about the notes. We have to make a stance about this to prove why it is treat so poorly.

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