Fibromyalgia? Wrong diagnosis? Help please!

Hi all, I've suffered from endometriosis symptoms almost immediately after starting my period at 12.

I suffered from incredibly painful periods, I bled very heavily, passing grey blood clots, vomiting, fainting from pain. I'd spend two days a month laying in the bath, bleeding heavily, vomiting and fainting, in a viscous and horrific cycle, that doctors called 'normal'. I'd spend the remaining 5 days bed bound, drugged up on strong painkillers because doctors didn't want to put me on the birth control pill, because they thought it would encourage me to have sex...

I am now 22 and I have just been diagnosed. 10 years of agony until someone decided to send me for a scan and listen to my symptoms. I'm awaiting surgery to remove endo & formally diagnose it, but my doctor is certain.

I've seen countless doctors, one of them a Rheumatologist, who diagnosed me with Fibromyalgia and wrote on my doctors notes that he was sceptical of my surgery (as if I was lying?) and believed my endometriosis pain was actually fibromyalgia. I left his office annoyed and disregarded what he said. Weeks later I obtained a letter from my GP to give evidence of my diagnosis to my university, seeing fibromyalgia as a confirmed diagnosis and endo as not, as I'm still awaiting surgery.

This makes me incredibly angry. I am NOT saying fibro is a fake illness, it seems incredibly painful and disabling and as someone who experienced undiagnosed endo for 10 years, I have complete sympathy and respect for anyone experience a chronic pain condition. But fibro is not something I have. Fibro doesn't make you bleed blood cots, nor does it cause ovarian cysts and retrograde menstruation. He did some scoring system to check me for fibro, I got a very low number, but he still says I have it.

I am incredibly fed up of being diagnosed with conditions I do not have. On top of fibro I also have anxiety on my file, which is also an incorrect diagnosis. My new GP and a specialist actually think these weird 'episodes' are epileptic seizures, not panic attacks. I'm still getting my head around epilepsy and waiting to see a neuro, but I've been sure for years that I don't have anxiety. My sister does, I have witnessed many panic attacks and know the condition well. But its just not something I have.

Other than coming here to rant (sorry!) I've come to ask if any endo suffers have also been incorrectly diagnosed? What did you do about it? I want this info off my record as its wrong and its affecting my studies and the help my university can offer me.

I've been ill for so long, and I understand there is a wait for surgery to confirm my gyno's endometriosis diagnosis, but having anxiety and fibro incorrectly on my file is a huge waste of time and energy for me, having to debate and inform employers and university that I don't have either. Time and energy are not things I can't afford to waste atm.

Finally, I am just tired of feeling helpless and angry at being mislabelled. If anyone has any wisdom, advice or just wants to rant about a similar experience, please share with me!

Best wishes to you all, K xx

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  • Hi - I'm afraid for most people many misdiagnoses is the usual route to a final endo diagnosis. For me over 20 years, in order, of anxiety, supratentorial ('in the head'), severe PMT, dysfunctional uterine bleeding, chronic sinusitis for all my allergies, cervical spondylosis with myelopathy for severe dizziness and unconsciousness due to oestrogen therapy overdose, (which should have me pretty paralysed by now since this was 14 years ago yet I have never had one symptom to date!) and atypical facial pain for severe headache due to chemical allergy associated with endo.

    What you have in medical record terms is an 'evolving' diagnosis which is likely to be finally confirmed with a lap. Your electronic medical record must be compiled according to the instructions to GPs which are contained in 'The Good Practice Guidelines for GP electronic patient records - version 4 (2011)'. I know this far better than my practice due to all the inappropriate recording in my records! You can download a copy from this link:

    gov.uk/government/publicati...

    Section 6.5 confirms that data quality must have five key elements referred to as CARAT - Completeness, Accuracy, Relevance, Accessibility and Timeliness.' Accuracy of your record must reflect 'real world instances' and all your misdiagnoses are such instances as they did happen, but they lose their relevance as your final diagnosis continues to evolve. Section 6.8 continues 'to write high-quality patient records, it is essential to understand the various purposes for which those records will be used and the factors that contribute to make the records fit for purpose...the quality of patient information only becomes truly apparent when the information is used.' Your information is being 'used' to inform your university of your condition and is clearly falling short of this obligation as your diagnosis has now evolved past fibromyalgia to suspected endometriosis that matches all your symptomatic evidence when fibromyalgia does not. It has therefore confirmed itself unfit for purpose as it is not giving an accurate picture to your university. Whether or not endo has been formally confirmed is irrelevant as it is now the suspected condition for your symptoms of which your gynae is certain and therefore the most 'accurate' representation in the evolving process.

    Section 9.7.6 goes on '...the correct representation of certainty, especially where a diagnosis is uncertain, yet may evolve, change or become certain. Thus accuracy is not an absolute characteristic of data that is permanent once recorded. It requires a continuing process of maintenance, or housekeeping, to reflect a changing understanding of the patient’s health problems.' What this is saying is that the diagnosis of fibromyalgia (if indeed it is a confirmed diagnosis) cannot now be regarded as certain even if it was deemed so at time it was recorded and this change must be reflected in your record and thus any representation of you to others.

    Have a look at Section 9.7.6.2 that reminds GPs that 'expressing an ‘opinion’ is different from recording a ‘diagnosis...’. If there are several different diagnoses under consideration for the same symptoms then this must be clearly explained as free text with the degree of certainly recorded for each. And where a patient disagrees with a diagnosis it must be recorded.

    I get a very firm sense that fibromyalgia is the rheumatologist's opinion that cannot be considered a firm diagnosis since your symptoms fall short on his scoring yet completely fulfill an alternative diagnosis. So your GP is not representing you correctly in his report since if fibromalgia and endometriosis are both to be disclosed then he/she would be required to detail the fact that they are both considerations for the same symptoms under investigations and state which has the highest degree of certainly, which is endometriosis and is expected to be confirmed by lap.

    The first thing I would do is familiarise yourself with these sections of the guidelines and obtain printouts of your computer medical records to find out exactly how things have been recorded, to include copies of letters/reports from the rheumatologist and gynae. There will be a small charge but not much. I think it unlikely that the former can have made a firm diagnosis and if he is just expressing an opinion then you should challenge it and insist that it is changed on your record and a new report written to your uni confirming that your diagnosis is evolving but is indicative of endometriosis and awaiting confirmation by lap. If fibro is just an opinion then it should not be mentioned. If it is a firm diagnosis then I should challenge the consultant by writing to him listing all your gynaecological symptoms and forcing him to commit to writing his confirmation that all those symptoms are more indicative of fibromyalgia than endometriosis despite the low symptom score for his condition and conviction of a gynaecologist. I don't think he would be prepared to do so.

    With regard to epilepsy, if you don't have the documented symptoms, which will be well recorded on line, then you don't have to see a specialist for it. All decisions have to be jointly made with the patient and if you have not consented to this as a cause of your symptoms then you do not have to go. A neuro might well diagnose you with yet another unexpected condition to add to the list.

    When you have endo confirmed you can choose to have the wrong diagnoses deleted or to remain with a clear indication that they were misdiagnosed. This is covered at Section 9.7.6. I recommend that you leave them on your record with a clear qualification made by the practice that they were incorrect diagnoses. If you were ever in a situation of taking action against the practice it is always recommended that your record represents what actually happened.

    Have a look at my post on endo and its many possible symptoms and the guidelines on how GPs should generally go about their business with regard to patients and your rights:

    gmc-uk.org/static/documents...

    xx

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