I deliberately don't see the GP often - it takes a month to get an appointment sometimes and the guy I'm registered to isn't exactly helpful, so I just get my prescriptions on repeat and stay away. I really had to make an appointment though - I needed to talk to someone about how bad my fatigue is at the moment, talk about having my mirena removed, and how much I'm struggling with the see effects. The pain consultant I'm currently under is clueless (my last appointment lasted 4 mins and all he talked about were reducing my painkillers) - I found out that there is an anaesthetist / pain consultant at the other local hospital who is part of the specialist endo centre and specialises in chronic pelvic pain so I wanted a referral. I also need a referral to an endocrinologist as my hormones have been screwed up since I came off zoladex in 2009 and it's causing me a lot of problems. Then I thought I might mention that my body clock has become completely screwed up and see if he could give me anything to help me get back on track.
However, my appointment was a complete disaster and I'm left realising that not only does he know nothing about endo, but he couldnt really care less about my treatment.
When I went in, he fires straight into the painkiller reduction and asked how far I'd got - I said I hadnt gotten anywhere as I'm in so much pain from the mirena, but now I can have it removed, I'm happy to start. He asked when the gynae was taking it out - I said he wasn't, that I was getting the practice nurse to do it. He didn't seem too pleased about this.
Then I started trying to talk about how bad the fatigue is and how I've only left the house three times this month. He really didn't grasp the severity of what was I talking about - he kept checking his watch, all he said was "that must be tough". Then he pulled up the letter from my gynae saying they only found minimal endo during my lap - I had to explain to him that mild endo doesn't mean mild pain. He looked at me like I was lying.
Then I broached the subject of the referral to the pelvis pain specialist at the other hospital and he said no, he wasn't happy to refer me somewhere else as there was nothing different they could do. I pulled up their website on my phone and showed a list of all the treatment options they specify which I now have no access to. He then had the nerve to ask me why I didn't just see the guy privately? I'm usually terrible at standing my ground with doctors but I got pretty angry at this point - I made it clear that I was entitled to be referred where I want to be referred and if there's someone locally who understands my condition and is better placed to treat it, that's what's in my best interests. After several minutes of arguing, and him looking at his watch, he said he'd look into it.
At this point I decided not to even ask about the other things as there was no point.
He then asked me if I'd considered counselling and if I might be depressed. Duh! Of course I'm depressed - I'm in agony, my fatigue is terrible, the mirena is affecting my mood and I don't have a single doctor that cares about my case. He asked if I want anti-depressants but I said no - I want the mirena out and that should help. Then I left.
I just feel so angry and let down - is it really too much to ask to have a bit of support and the feeling they care about what's best for you, rather than what costs the least and whether you're making them run a bit late?
I know I need to change practices but I'm concerned about ending up in an even worse situation - at least this practice give me my morphine on repeat so I don't even have to go in there.
When I lived in London I had such exceptional care from everyone I saw which makes it even harder. The pain specialist I had in London was helping me reduce my morphine - she told me to reduce very gradually, no more than 10mg a day, and that it could take years to get down a low dose. This new guy has written to my gp to say I should be off the concentrated oramorph within six months - I asked the GP how much I should reduce by, and he said to go from 4ml to 3ml which is a reduction of 120mg a day! I would be I
Hospital with withdrawal if I did that, even I they are adding in a bit of tramadol.
And they want me to restart pregabalin which I struggled with before on a low dose because I have ME. This pain guy wants me to start on 75mg a day and increase to 300mg a day within 4 day. I'm already housebound 95% of the time, if I take this dose I'll be completely non-functioning but they won't listen.
I honestly don't know what to do - even if I find a new GP, they'll have the notes from this clown and the consultants that completely trivialise my situation and they probably won't take me seriously either.
What hope do I have now of ever getting to see an endocrinologist? My hormones have been screwed up since I stopped zoladex in 2009 - I still have no sex drive and hot flushes etc but because my gynae did a blood test whilst I had the mirena in at a random point in my cycle and wrote to my gp saying it shows I'm ovulating normally (I believe you need multiple tests and certain points in your cycle to compare levels), that's apparently the end of it. Worse, I was on zoladex for 2 years and I've never had a bone scan.
I'm completely devastated - I feel completely alone in this and I don't know how to move forward. What would you do?