Back in January 2001, I had a hysterectomy at the age of 32. I had begun fighting for one 7 years previously, after 15 years of pleading with GP’s and gynaecologists to find out what was wrong with my reproductive parts, and for all but one of those years being told that there was nothing wrong at all. (Because having 3-4 week long periods of bleeding, and then a non-stop period of bleeding lasting over 15 months is of course perfectly normal, as any person who menstruates will tell you). That I had 2 live births at all, let alone the two – now grown up – sons that I have, will always be a miracle to me.
Had I not moved to Sheffield in the 15 months before my surgery (because GP’s tend to be better educated about these things where there is a specialist centre for reproductive issues), I would not be alive. At that point certainly, both the care and treatment my GP and consultant gave me were amazing, and life saving. Having endometriosis, adenomyosis and Polycystic Ovarian Syndrome (PCOS), a botched sterilisation resulted in endometrial cells infecting the cysts around my ovaries, and my elective surgery began literally minutes before the blood poisoning already underway would have been irreversible.
So bad had been the pain that post-operatively I didn’t even need a paracetamol – any discomfort from having to be cut open was nothing at all in comparison. Overnight, I had lost a stone in weight just from the fluid retention in my uterus having been removed. Within weeks, I felt like I was re-born. I was, I thought, finally cured. I left my abusive marriage, and took my children 250 miles away to start over.
The single biggest obstacle to accessing diagnosis and treatment throughout the whole of that time was the succession of GP’s and gynaecologists who refused to believe that I was in pain at all – yet nearly twenty years on, I am more than aware that it is too often still a battle for women across the gender spectrum to receive any recognition of physical pain, let alone receive the right support for the reasons which they experience it.
It wasn’t my first experience of being disbelieved about pain – shortly after I started school just before turning 5, I began having migraines and ‘absences’ (which I still have). I had all but given up hope that those would be taken seriously. If you are a woman (trans or cis, non-binary, gender fluid or gender queer) or read as ‘femme’, then the chances are that the pain you experience is likely at some point to be disbelieved. That possibility is an even more likely assumption if you are black or of colour, and/or autistic and/or disabled.
I do know that there are many healthcare professionals who seek to work in partnership with their patients, and who listen to and believe their patients. I met one this past weekend.
Ever since a work accident when I was 18, my left shoulder has always bothered me. It would ache more in the cold and wet, and as the years progressed, it hurt more and more just to sit at my desk and work. The occasional aches became a continuous throbbing pain that only eased when I got home from work and layed down. The throbbing pain was joined by hot fire, tingling and pins and needles down my arm, and the bones began to crunch more noticeably. Then my right shoulder began to hurt too. Fatigue became nauseating, I developed allergies and transient symptoms. After a cardiac crisis, I was told to see a rheumatologist (since my cardiac crisis was a severe inflammation of the cardiac muscle and pericardial sac.
It took over a year, but then last summer I saw a local rheumatology consultant. If I had hopes of answers to what was happening to me going in, they were dashed almost as soon as the appointment commenced. For various reasons I will not yet go into detail or name names. But the ‘diagnosis’ I came away with was ‘an hysterical dependency’, along with the judgement that my disabilities were ‘a predicament of my own making’.
I rejected his recommendation to see a psychiatrist. He gave me a neurology referral grudgingly.
Yes, I have registered a complaint. I’m still trying to get a follow up from that complaint. And I’m not going to any detail yet because I haven’t decided if I can or should take that complaint further.
I was furious, and told my GP so, and demanded I get referred to another rheumatology department for a second opinion. I saw a second rheumatologist this past weekend, and got a second opinion. I am so glad I did.
She listened. She asked careful questions carefully. She went through my entire history with me, and helped make the physical examination as comfortable as was going to be possible. She was autism aware, and respected my intelligence. And then she gave me a preliminary diagnosis of fibromyalgia and arthritis, and ordered blood tests to eliminate any other underlying autoimmune issue. She was glad to hear that I was seeing a neurologist, since she was concerned that a neurological root for certain of my symptoms be eliminated.
She took the time to look me in the eye, and tell me that I wasn’t making it up in my head and that my pain was, and is, real. When she heard that I was sofa surfing, she asked how she could help with that.
The NHS, such as it still is, and what little is left of it, is responsible for such great improvements in patient care. It shouldn’t be unusual for a woman to receive the respect of being believed.
At the end of my first appointment with the rheumatologist I will refer to for now as ‘Dr Dick’, I told him that I knew my body better than he did. His retort was that he knew rheumatology better than I did.
Just like all the gynaecologists who told me the same thing, and who were wrong and failed to diagnose real problems which nearly killed me – Dr Dick was wrong because I DO know my body better than he knew his rheumatology, and he failed to diagnose real problems because of personal bias, and gaslighted me by trying to convince me that I was simply being hysterical.
I am not hysterical – but I am angry. And right.