Fighting my case and demanding appropriate treatment

[weekari]

Hi Ladies

I just wanted to share what's going on for me. I think it's often the case that we have shared experiences here and we can all learn from each other. I know that I have learned so much from what others have shared.

I have had such a long and difficult journey with my illness which started 4.5 years ago. I was diagnosed with severe endo in May after years of all the usual 'IBS' and stress diagnoses. I had a clear lap in 2016 too. Even my diagnosis hasn't been straightforward with 4 months of being told different things, having to get repeated scans. I was eventually told at the end of Aug that I had a very unusual fibroid with endo growing off my uterus and that removing it would be too complex and so zoladex would be the best course of action.

I have terrible fatigue and brain fog and I was told all of this on my 40th birthday so it took me a little while to process, research and decide what I thought of it all. My conclusion was that it just didn't make any sense to me. So, while I started a more natural treatment approach, I started digging and requested all of my medical notes, scans and GP notes. What I found was unreal- the way I have been described in my notes is AWFUL. I sound like an anxiety ridden hypochondriac who actually wants surgery. The reality is yes I do get anxious when I am told I may have cancer or that there is no physical cause for my debilitating symptoms but, this is pretty normal! Also, I am terrified of needles, let alone surgery- I would avoid any medical intervention at all costs! The only reason I would have surgery is because I am desperate- I am so ill and my quality of life is so bad due to my symptoms, that I would be willing to face my fears.

The descriptions of me aside, what I found about my actual diagnosis was more concerning. I had to get a lot of help to understand it all but there's basically been a disagreement between the oncology and endo teams as to what the large mass in me is- with the endo team saying it's cancer and the oncology team saying it's endo. I am upset about this for lots of reasons. Obviously cancer is just plan scary but also, I have continually been told that there is absolutely no concern about malignancy- every discussion, which is just a complete lie. In the end, I've ended up with an endo diagnosis and for some reason they've concluded it's not cancer but my case is being managed by a gynae who specialises in oncology. Which makes no sense to me, especially as all the records highlight how complex and unusual my endo is and it's been diagnosed as severe so I meet the criteria for the specialist service.

The treatment they've offered me also makes no sense- I've only been offered zoladex, which is obviously not a long term option and doesn't actually 'treat' anything. There's been no long term plans discussed. It seems to me that surgery would be my best option- it would remove the large mass, which seems to be the cause of a lot of issues, plus any endo, plus it would let them test the thing to finally rule out cancer for sure. But when I read through my notes, I was appalled to read that surgery was discounted due to my priority for fertility preserving treatment which is not the case for me. I've never even been asked! I am 40 and married, I've been with my husband for 17 years , we've never tried for children (sex is out the question just now anyway!) and I'm really not that sure if I want children. If I was given the choice of a child or full health, I would take full health without even bating an eyelid. The fact that this wasn't even discussed with me is shocking.

With the help of an amazingly informed woman, I have put together a letter to the head of my nearest endo centre to request they see me, explain my diagnosis and offer me appropriate treatment.

I want to share this in case anyone out there isn't happy with what they've been offered or how they're treated- you do no have to just take it. It's a lot of effort to fight, especially when you're feeling so ill but there is help available for all this. If anyone wants to know any more about this, please contact me. I'd be happy to help where I can.

x

[AllthatGlitters]

You have been through a lot! You are a strong lady & always give good advice on this site. Thanks for sharing your story x

[kittykins7]

Hi Weekari,

I've just read your story and its just plain awful the way we have to fight our corner to get anywhere with this terrible condition! There needs to be more training and understanding on this. No wonder you have no confidence in them !

You keep fighting your corner, and good luck x

[Gettingoldnow]

Well thanks for sharing I am going through exactly the same thing right now and will update when my second opinion comes through.seems a lot of people are unaware of the protocols like me to get to the bottom of things.just one question how did you go about getting your doctors notes ?please .and keep fighting I intend to .

[weekari in reply to Gettingoldnow]

For my GPs notes, I just had to put my request in writing and then once they'd got them together, I had to sign a form. It was super easy and quick. I'd expect it maybe to vary across different surgeries though.

For my hospital notes, I googled the health board and requesting notes and got to a page that had me download a form. It was fairly straight forward and I just had to provide ID (or get a professional person sign the form to prove your identity). They came really quickly too but it was more fragmented and I had to chase up some missing things. I got a cd with all my scans on them and the reports which were so helpful. It's amazing what they don't tell you- then you're supposed to consent to treatment, only knowing a tiny part of the picture?!

Good luck with what you're doing. It's not an easy process but we're worth the fight eh?! We only get one body! x

[Gettingoldnow]

Ah thanks for that,I have got all my reports and scans from hospital which all contradict one another hence second opinion .but might be an idea to get my doctors notes so thank you.its disgraceful as you say you are not consulted on what actually is on the scans .i will update my outcome and story as soon as I can .keep fighting ,I applaud you.just wish more people would question these so called experienced medical persons.they are not gods and should treat us like adults and not like illiterate idiots.i suspect there are really good medical docs out there but not unfortunatly where I live.

[weekari in reply to Gettingoldnow]

I've been talked to like I'm a complete idiot and criticised for doing my own research. I'm a Dr myself, in clinical psychology, so I've got the same level of education and worked in clinical practice in the NHS for 10 years but they still talk to me like I'm 8 years old and couldn't possibly understand my situation. I was told zoladex was just a 'tiny injection' and that was all the info I was given, no info about risks, side effects etc. It's not like he was pushed for time. It was a total power thing.

I know they're not all like that but I do wonder about male gynae's! I try to not think about it too much.

I'm just grateful I trusted my instincts and started looking into things. Not everyone would and not everyone can.

Is great you're fighting it. We have to.

X