Anybody had it out with their GP after being diagnosed with endo, either not believing them/refusing to refer them? why its taken this long?

[Moff_cat]

I'm off to see my Gp on the 28th and I want some answers. Just wondering how this has gone for other people? And what kind of reaction you got. X

[Diagnosis21]

So far my experience with the doctors and nurses has been awful they have shrugged me off shoved a load of medication in me that i didn't need. I am also seeing my doctor on Tuesday next week to get some answers. One thing is for sure, they don't like to explain anything to you Hun

[Moff_cat in reply to Diagnosis21]

I know I had to pay private to get diagnosed. Im hoping she might be abit more straight with me as she is leaving the practice next month. Will you let me know how it goes for you on tuesday? Good luck X

[Moff_cat in reply to Diagnosis21]

Hi Diagnosis21 how did you appointment go? X

[Diagnosis21]

Yes i will do Hun and its ridiculous you have to pay for someone to care for your health care and health needs. I hate the NHS, its a joke. I hope you get the answers your looking for Hun and more explanation for you. Will you please let me know how you get on too.

[Chrissie66]

Hi

I read back a bit and if I'm right it's not long since your lap - what did the surgeon say? What sort of answers are you looking for?

C x

[Moff_cat in reply to Chrissie66]

Hi Chrissie66 , I had my lap 3 weeks ago which I had endo and a cyst removed. Im having my appointment in the 16th of dec with consultant so I don't no what stage I am or where it all was. I have to change my pill sooner rather than later as its driving me insane! The dr leaves next month so I want to see her before she goes. Basically I want some honesty, she point blank refused to refer me and was told it was because I was depressed and 15 day periods on the combi pill is nothing to worry about and cramps are part of being a woman. I want to know if she genuinely didn't belive me ( despite 10 years of it in my notes)or if they just dont have enough budget to do it. As it very rural with 3 doctors only with alot of elderly people. X

[Chrissie66 in reply to Moff_cat]

Your GP sounds as if she's not very clued up on endo in the first place. If she's leaving I would make sure you make an appointment with her replacement as soon as possible or better still hang on to see the consultant so he/she can advise you.

Nothing with endo needs to be done in a hurry unless it's in danger of exploding and causing infection or other problems. It's incurable so even if you get it treated tomorrow it's going to come back. It's painful and it makes life difficult (and I know that's putting it lightly) but it's rarely if ever life-threatening. I understand why you want to know what went on in the op but honestly, where it was or what stage it is at is not going to change in the next 3 weeks, especially as it's just been treated. And if you see your GP and she puts you on to something that your consultant doesn't agree with, that's messing your body around even more...

I understand your frustration at not being diagnosed for all this time. But GPs are just that, general practitioners; they know a bit about everything as opposed to knowing everything about one thing. I bypass my GP completely now and just see my gynae, it saves me time and lets him concentrate on people who might actually be dying. If you feel really strongly about it, then by all means go and see her. But it might be more effective to hang on to see the consultant instead, and to put your thoughts about how GPs could be better trained in endo into a letter to the Practice Manager or your local health authority....

As somebody else has said, our NHS isn't perfect all of the time. And maybe I am defensive of it because I have had nothing but excellent care, or maybe it's because I have lived with this for 20 years now and know that sometimes you have to choose your battles. With everything else you've got going on, you don't need the extra hassle....

Good luck

C x

[Moff_cat in reply to Chrissie66]

Couldn't agree more with you. I don't want her blood lol I just want her to be more aware of the decisions. As she actually said " oh its probably a touch of endometriosis " but still wouldn't refer me. I do plan to chat to the practice manger to chat about it and help try and promote awareness. X

[Chrissie66 in reply to Moff_cat]

I reckon she got 'comfortable' with a mostly elderly patient base and let's face it, not many of them would be likely to present with endo!

Maybe it's been your case that's made her see that she needs to broaden her horizons.

Let us know how you get on

C x

[kyla78]

In my experience doctors are not great, I have been fobbed off for years then finally got a diagnosis when I was just so ill bleeding daily and I went to G.P and demanded to be referred even that took two different consultants. I will say this if we didn't have the NHS it would be a lot worse! I've seen women in the states for example who can't have a lap done because they can't get insurance and it costs thousands for ops like that plus the treatment after.... So yes NHS isn't perfect but look at the alternative. I think we would be best to fight for awareness and more training for g.ps so they listen to us dam it!

[Moff_cat in reply to kyla78]

Hi Kyla78, thats kind of my point I was refused referral by the NHS and I have had to pay thousands, well £4000 to be precise just to get the bottom of it after 10 years of pain. I agree there really needs to be a much higher profile for endo like on par with the awareness of breast cancer. I plan to do my bit in march for endo week. X

[kyla78]

That's so bad, it's shocking really it took me over 15 years to get a diagnosis but for you to be refused a referral is disgusting! Yes me too I'm hoping to get my local endo support group up and running in the new year

[Moff_cat in reply to kyla78]

To be honest I'd rather they would admit they have no money in the budget than making out that its normal or in your head. I was shocked at how many celebs have endo, I wish they would champion the cause more as that would really help raise awarness in the general public. x x x

[kyla78 in reply to Moff_cat]

Yes that would be so helpful are there a lot of celebs with it then? I know of a few

[Moff_cat in reply to kyla78]

Seems to be a few I found this page emlwy.blogspot.co.uk/2013/0...

[kyla78 in reply to Moff_cat]

Wow that's a lot! We need to get them to promote it!

[Diagnosis21]

I would love to go private but we struggle to make ends meat as it is but the NHS staff are just awful i have been very close to almost over dosing because of the pain i was and still in but they just shrugged me off and now all of sudden i need to be seen straight away by the doctor that put me in surgery after him saying he will see after three months they just like to confuse you.

[Moff_cat in reply to Diagnosis21]

I know what you mean about the pain. I haven't been in a position to pay before now but it did mean we didnt go honeymoon after we tied the knot and we are having to wait to get a new car (new to us but second hand) X

[kyla78 in reply to Diagnosis21]

It's not right you have bad experiences but your not alone which is even worse! Not all NHS staff are awful xx

[Diagnosis21]

No i agree with you there its just my hospital and Drs surgery are terrible including the reception staff, my partner has said he wants to have a specific hospital tattooed on his body incase anything ever happens to him as they saved his mums life once she was admitted there they was brilliant with her and really helped her and continue to help her, i wish i had the option to have a transfer to there but in not eligible and its not appropriate time wise and journey wise with a toddler its difficult

[kyla78 in reply to Diagnosis21]

My doctors are not great either, it's disgusting really considering how much they earn!

[Diagnosis21]

You'd think with the amount they earn and for the fact we all pay for this in national insurance and tax, you'd think they would be more helpful and understanding to those that help with their big wages

[jinka]

Hmm interesting debate going on here but let's be fair girls....we don't "all" pay for the NHS

I can't remember the statistics but those who work are paying tax for those who don't and are covering their costs on many things including the NHS this is the way the UK works. This cannot be sustained for much longer so just think....what will we do when the NHS is no longer a viable option? It will happen!

I myself have had a moan about the doctors I have seen who fobbed me off and how long it took me to be diagnosed and waiting times and I completely agree that the GPs are sadly under informed about Endo.

Before I was diagnosed on the NHS I paid privately ( a lot of money) for a well known company to help me. They did NOT help me at all they took my money and I was no better off. In fact the doctor I saw privately was the same doctor I had seen on the NHS ( conflict of interest) and after a lot of tests she had already performed under the NHS and several considerable pounds later she came to the same conclusion that she had before.....nothing wrong with me other than usual period pains! Needless to say complaints were put in my money was returned and I would never recommend the company to anyone.

My point is other than the private hospital being a bit cleaner and the waiting times being a few months less I have been much better looked after and listened to on the NHS. I basically paid for the honour of seeing the same doctor that had already seen me for free, not to mention the extra mileage due to the private hospital being so exclusive it was out in the middle of no where!

This is just my personal experience....as I said I've moaned a lot about the NHS but sometimes the alternative really is not much better.

[Diagnosis21]

My appointment was a waste of time to be honest my gp doesn't have a clue what's going on apparently they removed the Endo, but if that's the case why am i still in so much pain and was told they only removed the cyst and scarring tissue on my fallopian tubes and that's it. I have an appointment with the gynea doctor that sent me for surgery next week i am going with back of mother in law (she has loads of gynea issues so knows the lingo they use) and my partner and if he says something that either one of us aren't happy with i feel terribly sorry for him lol. Its ridiculas my gp should know what's going on and what's happening

[jinka]

GPS are just that! They know a lot about general medical issues. They are only as effective as the information they receive... If consultants do not feed back to GP then they are in the dark! Communication between different sections are just awful....my GP will now not touch me Endo wise because I'm under and being treated by a consultant! I'm still pro NHS tho! Xx

[Diagnosis21]

The information they sent to my gp from my consultant was shocking such little information in there no wonder he didn't have a clue, as he had nothing there to tell me. It really winds me up though we put our trust and faith into all of these doctors and alot of them either don't care or just don't have a clue what they are dealing with most of the time.

[amber505]

My experiences have been pretty good so far. Took about eleven months to get a diagnosis and have been seen by various people in this time. Originally I had swabs at my family planning clinic before I went to the GP and asked for an ultrasound. When this found nothing, I went back and asked for a referral to gynaecology and eventually got my lap and was diagnosed with endo in October.

The DR I saw was really good and suggested that it could be endo even though my main symptom was painful sex and I didn't think my periods were that bad.

It's now I'm having trouble with them. Back in constant pain in my stomach, back and legs and being told that only a small amount of endo was found so it can't be that =(