The truth is in the medical notes

So, after asking to move hospitals, and finally being successful (see earlier posts) I requested my medical notes and low and behold, you would not believe the amount of things they don't tell you. My GP wrote to my surgeon in 2008 with concerns I had endo, I had 3 different scans that indicated either endometriotic cysts or complex cysts with query endometriosis. I have only been told of any of my issues on the right side, but during my first lap in 2008, a cyst and adhesions were removed from the left.

This is hardly surpising since I had my fallopian tube removed when I was 15 but wasn't told until the surgey in 2008 (4 years later).

I had also had issues with some of the doctors bedside manner, one calling me immature for requesting to have my ovary removed (that is not attached to my womb and susceptible to recurrent complex cysts, and I know now is riddled with endometriosis), shouting at me, patronising me and fobbing me off to the pain management clinic, depsite there being, from the scan he ordered, two complex cysts sitting on one ovary.

Another dr advised me that being down a fallopian tube did not affect my fertility, which I question with knowledge from my medical science degree, to which she faltered and gave the the actual stats of a 30-40% reduction. In the same consultation, she put me on prostap, advised me there were no symptoms of it again I questinos, her repsonse - to put my on HRT to combat these non-symptoms.

I have never put in a complaint against the NHS. I think it is about time I did.

16 Replies

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  • Hi Sj

    you are very brave to stand up to the doctors.. they think they are the oracle and no one else has the answers. i did not know that i had endo and when i asked what kind of cyst i had on my ovary, the reg became very angry and condasending...she took me off the waiting list for a lap all because she was not prepared to take me under the knife in this state..ie upset and confused state.. i think docs need lessons in how to reduce their arrogance and better patient manner...im feeling scared and upset at the news they have just told me and it gets misinterpreted...twats!...i go for my post op app with this team and will be going guns blazing if its the same lady reg...and then i will put in a complaint about her...i was meant to have a lap and on the day of the op get told by her im having an open c-section for removal of ovary and myomectomy of 4 fibroids.... the thing i hate the most is how they talk to us patients in code as if we are supposed to understand....!!

  • when i had my lap last month, the surgeon said to me i had too much endo to remove, that my ovaries were covered and stuck somewhere and it was pretty much everywhere, all on my bowel and bladder and to have a full hysterectomy. when i saw the consultant last week, i walked in, expecting some good decent info as he is a specialist in one of 'the specialist centres', he had assumed all i had done was the ablation, he said give it time to settle and you'll be right as rain.....i must've have had the most strangest look on my face, luckily my sister came in with me, she mentioned that i was told about the hyster, he then started scrambling through my notes, oh yes he said yes you have a few spots of endo, but we'll give you a hyster pop you on some hrt if you need it!!! i said i thought hrt could cause the endo to come back, he said no thats a myth!! he then went to explain where my endo was, reading off the report and at the end of the list of where it all was, he said oh yes you do have rather a lot actually, and that could be whats causing your pain, no sh*t sherlock lol.

    he also said give the ablation time to work, it will sort your pain, and about a minute later said the ablation wont help your pain! i knew the ablation wouldn't help my pain, i knew it was for heavy bleeding only, but it really doesn't inspire much confidence from 'a specialist'

    i have to go back regularly to see him at his endo clinic so I'm hoping i will be brave enough to ask more and ask to look at my notes, i want to ask why i cant try just having surgery by keyhole to remove endo, or that i can have a hysterectomy and try leaving my ovaries in, i know it could mean more surgery later on but i'm prepared for that, hormone replacement scares me - but if my sister hadn't raised the issue he would've just probably discharged me, all because he didnt read my notes properly, makes me so angry at how some of them treat us xx

  • I've just started going to a specialist endo centre so after reading this, I am now really worried. Where did you go?

    I had placed my last hope in this appointment as my case is so complicated. I just need the pain gone!!! Now I don't know if it will be any help at all.

    Thank you your comments will be very helpful for us to choose the right place.

  • Wow. I had one of my ovaries and tubes removed and was also told that it wouldn't affect myefertility. I never had any reason to question it! Good luck with your complaint, it takes people like you standing up to them to make them sit up and take notice!

    Lucy xxx

  • I believe, but don't quote me, that if you have both the ovary and falloian tube from the same side removed, it doesn't affect your fertility as the other ovary picks up the work load. But in my case, my ovaries share the ovulating, only the egg released from the right side can not be fertilied in the fallopian tube becuase their isn't one, and thus reduces the amount of opportunity I can fall pregnant because I can only conceive when eggs are released from the left side. This is why I want my right ovary removed. To improve my fertility.

  • Hi worth 71

    I've just started going to a specialist centre . After reading your comments I'm really worried. Where did you go? I've got so much endo and cannot tolerate any hormones so things are getting extremely difficult.

  • You just have to go prepared and informed and be willing to question everything!! A specialist clinic is the right place for you because they are trainined in the surgical techniques that ordinary gynae surgeons are not.

    The two key things are: medical therapies (i.e. drug treatment) is no cure, they offer short term relief which is dependent on the type of drug. For instance, drugs such as those that induce a pseudo state of pregnancy (so contraceptives) are available for longer use than those that induce pseudo-menopause (such as prostap).

    Surgery offers the opportunity, if done by a specialist, to remove all ofthe current endo. However, since we don't know properly how women develop Endo, there is a chance it still might reoccur but at least you might get longer term resbite from the symptoms.

    Read the guidelines (http://sogc.org/wp-content/uploads/2013/01/gui244CPG1007E.pdf) and know what your rights are. The more informed we are the better chance we have at getting the right treatment!

  • i wasn't at all prepared, i didn't want to let him know how much research i'd done, as some docs get niggled that we look up our condition online, so i acted a bit dumb really. next time i will be prepared as i have to see him monthly in his endo clinic - i will pm you where i went as we shouldn't mention names in public xx

  • Well it very much frustrates me that doctors don't like patients knowing what they are talking about yet the NHS promotes encouraing patient education and empowerment. But what it does to Doctors is puts them at risk and reduces the hierachy.

    Be informed, regardless of what you do with it. Being informed might just mean sitting and listening to what he has to say then following his treatment plan - because it was right for you. Or it might mean you listent, then question and suggest an alterative - because his wasn't right for you. Play it by hear.

  • yes i'm going to tell him next time that i've been doing some research, they must expect patients to do that in this day and age, and am going to ask why can't i have keyhole surgery to try to remove the endo, i'm guessing its about money at the end of the day, its much quicker to just remove the whole lot now together rather end up having two or three operations in the future, but it frightens me to have my ovaries removed at my age, i am 41 but its still young for them to go xx

  • Oh I see! That make sense! Can I ask a question that you may or may not know the answer to? If one ovary is doing the work of two I would then run out of eggs sooner than I would have done. Does that mean that menopause would come sooner? I'm not sure if that's a completely stupid question! Lol xxx

  • It is all very complicated and medical science does not understand it very well. Your logic is sound, and on the same premise we could assume that women who had been taking combine contraceptive therapy might also delay menopause (because it stops them releasing eggs); but this is not the case. I believe, but I can not be sure and this is not my area of expertise that having a single ovary removed can result in earlier menopause but this is associated with less hormones rather than less eggs. And I do not know what it means by 'earlier menopause' i.e. whether it is just earlier for that individual or earlier than the normal age range. Does this help?

  • I can totally understand the situation you are talking about. i recently found out that in my last surgery they removed part of my bowel but no one told me :( i now get terrible pain in my bowel and have real problems going to the toilet. only now 4 years after that initial op are they putting me in for physio to try and re-build the muscles in that area. i also had terrible internal bleeding after one op and they left me bleeding nil by mouth for 3 days in hospital without seeing a doctor. they eventually took me back into theatre and magically i stopped bleeding, and alive after 2 blood transfusions. However they told me that they did nothing. i just stopped bleeding by myself apparently and to this day i dont know why i started bleeding or how it stopped. it was 5 days after a surgery and i was rushed in as i was bleeding so badly and my GP sent me straight to the ward, never mind A and E. i also know waht you mean about the pain management clinic. my consultant's answer to everything is drugs to numb your nerves like amitriptaline but i havent found they work and the side effects are awful. maybe you should complain. there should be more openness in what they do with our body. i also found out recently that a consultant I saw back in 2005 mentioned endo as a possibility but ruled it out with no real reason to do so! in 2009 i finally had a lap after pushing for years, and they found endo! ive had 4 surgeries since. your post resonates with me and i feel for you. well done for standing up for yourself. your post has made me consider asking for my medical notes. can you get hold of the hospital ones? or are they the same as at the GPS?xx

  • Hi Im33.

    It was my hospital notes that I acquired, there is a department within the hospital which you can request them from. Normally termed the 'medicolegal' department or something similar (usually, notes are requested for legal complaints).

    I am not sure why I have been so adverse to pursuing a complaint with the NHS; after all, my researcher promotes the importance of earlier detection of errors through patient involvement. But when you are the one in the middle of it all it is very difficult to remove the emotion that you are experiencing from what you know to intellectually correct.

    There is a charge to have a copy of your notes; to cover admin fees. Mine were £27.50.

  • just reading your profile, its crazy the similarities! im also a final year phd student and am working as a researcher at the uni, and weirdly im also 26. its so nice to know im not the only one, caus often it just seems impossible to endo onto everything else. it just shows how tough we are. having endo makes everything 100 times harder xx

  • Yes that does help thank you :0) It's something I've wondered about over rt he years but not enough to do anything to find out! lol Starting to panic the older I get (although still only 35) as I'm really hoping I might have another baby but feel like time is running out xxx

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