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