Admins - please move this thread to somewhere else if it needs to be. thnx
This is quite a long and complicated post so thanks in advance to anyone reading or commenting on it.
Just to quickly run through some of my issues: aged 50, probably got Aspergers which manifests in social situations (getting privately tested end of October), no physical ill health until sept 2015, when began taking cerelle for ‘painful periods’. At the same time as I started taking it, I got a 24/7 relentless pain in my upper abdo (day and night). I tolerated it and travelled to USA. In feb of 2016 I was rushed into hospital in USA and had gallbladder out, sphinterotomy, and stenting. Cost: $78,000. UK travel insurance paid. It took from feb 2016 to sept 2016 for the pain to go though. Saw a Harley St professor and he said I more than likely had acute pancreatitis with issues at the sphincter cos the gallbladder was normal when they took it out in USA. I was prescribed 5mg oxycodone, 2 tabs, 3 times a day, and it helped.
At the same time, I still have painful debilitating periods since being 47. Prior to that, I worked my 2 jobs easily through a period. Since then, I’m bed bound for 3 to 4 days, nauseous for 8 days. It’s KILLING ME because I’m trying to work 2 jobs. I had an transvaginal scan in 2016 NHS, they found nothing. Had a transvaginal scan 2016 a week later, they found adenomyosis flecks but said they were ‘nothing’. No recommendations for pain relief, no nothing.
In sept, when the upper abdo (pancreatitis pain) went, I carried on with the oxy for the periods because it helps me to be able to carry on working and not lose my career. April 2017, I was prescribed 6 months of 100 5g per month, and that’s worked really well. But I’ve not given up on what the adenomysis, seen the year before, is/was. I had another transvaginal scan this year and an adenomyoma (16mm) was seen. But again, no diagnosis and no recommendations for meds or treatment.
And this is where this weeks UTTER SHITFEST really began:
With all of the above, I have been being as strong as I possibly can, mentally. I’ve also had the trauma of my 19 year old daughter being brutally raped by a stranger in her own home, while at college in USA. Unfortunately, she’s decided to almost cut me out of her life though, because mum is always a good target to vent on and no matter which way I approach her/things, it’s not appropriate. She lived with her dad in later years and didn’t contact me. When she told him she’d been attacked, they left it 9 weeks before they bothered to tell me, by which time she had been hiding in her bed, losing her place at college, and now her life’s not what she wanted it to be. He didn’t recommend she get counselling….nothing. So as well as health issues, I’m trying desperately to keep hold of my relationship with my daughter, but it’s slipping, badly…
Back to the health…
I collected the letter from the gynae consultant (who is the top guy in my area), from my docs, prior to a GP drs appointment because I wanted to be familiar with it. The first words were ‘She is fixated with getting a diagnosis of adenomyosis’. In the letter, he does go on to say that flecks were seen and an adenomyoma was recently seen, but that first sentence floored me. I went to see the GP the next day because I’m hoping to get to Spain this Thursday and I needed my prescription a day earlier and I got into the GP appointment, with the owner of the practice, and he listened to what I was saying regards the prescription a day early and that the consultants letter had me a bit upset, and he just let rip at me.
He was SCREAMING at me:
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I shouldn’t have used up an appointment to get my script a day early (I haven’t had an appointment at the surgery for 6 months and only go if there’s a true problem).
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He wouldn’t give me his opinion on the consultants letter, ie….what does HE, as the prescribing dr, take from what the consultant had written. Does he take that I have any problems below? Or does he see that there’s no diagnosis so therefore no issue? I really do not know WHAT to make of this whole thing.
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I have had 2mg diazepam, 10 tabs per month, for the past 14 years, for the social issues I have with my suspected Aspergers. It allows me to function in business meetings, dinners and be able to travel. Without this med, I wouldn’t be able to have the career I have. I have been seeking ‘help’ from mental health for 32 years, since being 16. I’ve been given a multitude of meds (none have worked, NO antidepressant brand, nothing. They not only don’t help the issues but they make things worse with awful side effects). I’ve had all kinds of therapy/counselling. NONE has worked. What has worked is mindfulness and meditation, which I have learned to practice on my own. However, I do still need the diazepam for particular issues. ←---so he’s saying the past 32 years of intervention mean NOTHING to him, I have to go back to the drawing board, go through the whole system again… even tho….I have something that helps, and I’m happy with it, and it allows me to live a normal-ish life… I asked him if I can pay privately for an assessment from a psychologist or a psychiatrist and he said he would NOT TRUST any letter from anyone I chose. I have NO negative history with this practice. I’ve only been with them for the past 9 years.
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The oxycodone script I have, that’s enabling me to tolerate the worst days of the period… and allowing me to hang out from my age now, 50, til menopause.. ←--he’s ranting about that. Basically suggesting that I don’t need it, nothing’s been ‘proven’, nothing’s been diagnosed. Nothing, nothing, nothing. Btw, when I went into the surgery with a letter from the top hepto guy in the country, saying that by my blood numbers, I had acute pancreatitis, the GP I saw at this surgery categorically stated that couldn’t possibly have acute pancreatitis.. So the GPs at the surgery are very much in the habit of 1. Dismissing pain 2. Dismissing symptoms 3. Dismissing prior medical history 4. Dismissing anything that a privately paid professional has to say.
So my question for you ladies (and any men actually!!) are:
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What are your thoughts about the gynae consultant saying I am ‘fixated’ on a diagnosis? I don’t feel as though I’m fixated on a diagnosis. I would like to find out why I’m in pain, yes, sure. I would like to be able to know that I can function into the future, possibly without a hysterectomy and so on. I’d like to know what’s causing my pain and if adenomyosis has been seen, then why is there no diagnosis? I feel very very belittled by his writing that I am ‘fixated’ on diagnosis.. (I refused all hormones btw, because I had a nasty episode (as above) with cerelle, possibly causing sphincter of oddi and resulting in a $78,000 worth of surgery, plus, I would like to ride out my menopause naturally if at all possible). I just don’t think his wording is appropriate for the year 2017. I feel it’s treating me like I don’t DESERVE to know anything and don’t deserve a diagnosis.
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Prior mental health treatments that have not worked – how the hell do I protect myself from a GP who dismisses 32 years worth of other NHS professionals opinions? Have I got ANY rights here??!!?
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What happens if he boots me off his GP surgery list? I have written him a letter after his freak out last week and he may take exception to it, given that he doesn’t even want to consider the most basic off issues that I have had/have.
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If I pay for a private GP, where do my notes stay?
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If I receive the diagnosis of Aspergers, what does that mean as far as treatments that work for me, having to be continued? As these GP’s a law unto themselves, or does there come a point where they have to tow the line of: prior history, what actually WORKS…and allows a patient to have the most normal life….and listen to what the patient themselves is saying…
I have lived in some seriously grotty areas of the UK and in 50 years, I have NEVER experienced GPs like this..
I’ve also survived some pretty nasty family and social stuff but this GP practice is now seriously threatening my mental health.
I don’t know what to do or where to turn to..
Thanks
Jem