Woof, where to start…
Probably with a bit of a content note, in the interests of being responsible. This will inevitably contain medical detail, talk of death/mortality, unsolved medical mysteries and, unfortunately, some discussion of what I consider to be medical negligence and gaslighting. What can I say, it has been a rough ride.
A bit of background
I’d always just taken for granted that it was normal to be in, at minimum, a bit of pain all of the time. I always had been, and so often when I’d tried to tell a parent/guardian/medical professional, it went unexamined. I was told I “couldn’t be in pain at my age” or was dismissed as lazy, told I was just trying to shirk activities that I didn’t want to do. I think it was a combination of frustration and resignation that kind of forced me to get on with it.
And by “it” I mean my life, I suppose. I stopped bothering doctors with things that bothered me unless I was genuinely scared for my safety. Being exhausted, in pain, frankly being miserable didn’t seem to interest anyone, so I just dealt with it as best I could. The medical conditions with which I have now been diagnosed were largely found accidentally.
- Hashimoto’s Thyroiditis – diagnosed during routine tests after I had Glandular Fever
- PCOS – diagnosed after a miscarriage and severe bleed
- Hypermobility – diagnosed by my private physiotherapist and later confirmed by a hospital rheumatology department (more on that later)
- AuDHD and dyspraxia – diagnosed privately when I was a child and only confirmed by the NHS when I was in my 30s after almost 5 years on the waiting list
This isn’t a definitive list of my health conditions, but it paints a picture.
With all this in mind, I go used to the fact that it hurt whenever I stood up, and sometimes it was excruciating when I first started walking. It eased up, I only got really paralysed with pain occasionally, I could live with it. So I lived with it. It wasn’t until a colleague said in 2019 “Why do you wince and groan every time you stand up?” I replied “Because it hurts?” And the look of confusion on his face told me that this wasn’t normal, and maybe wasn’t something I should just be living with. I made an appointment. Thus began years of medical bullshit. I was told it was bursitis, or strain from my weight, or lack of physical fitness. An x-ray came back as “normal, no further action”. Blood tests went astray. It was a mess. It wasn’t until two years later, after I’d had my first baby and taken myself for private physiotherapy, that my therapist said “You’re doing all the right things and getting worse. Do you want me to write a letter to your GP?”
This letter changed everything, and I’m not being hyperbolic. The letter from my physio meant I got referred to rheumatology at my nearest hospital, and they agreed that the amount of pain I was in, and the level of flexibility (albeit very clicky and loud) in my hip joints was abnormal. They referred me to orthopaedics and finally, in 2022, the consultant took one look at my hip x-ray and said “You have hip dysplasia – has nobody found this before now?”
What is hip dysplasia?
In short, it’s where the hip joint doesn’t form properly. In my instance, I have developmental bilateral acetabular dysplasia, which means that the little outcrop of bone at the top of my hip sockets never grew correctly. The knock-on effect of this is that my femoral head (the top of my thigh bone) slips out of joint. Understandably, that really hurts. It also means that when I told a doctor “It feels like my hip is out of joint” and he laughed in my face and said “That’s impossible, you’d be in agony”, he really was being an absolute twat.
(Do I sound angry? Because I am. I’m very, very angry about it all, and I think it’s likely I always will be.)
Despite someone confidently, and wrongly, seeing my hips on an x-ray in 2019 and declaring there was nothing wrong with them, something was indeed wrong. Well, not was, is.
I was offered two options: one, wait until my hip joints deteriorate until they are arthritic enough to justify double hip replacements, two, a procedure called a periacetabular osteotomy, which is a major surgery with an appropriately major rehab period.
The idea of waiting for my hips to degrade until I could barely walk, over an unquantifiable length of time, was not especially appealing. I was already in daily pain, I didn’t really want to just wait for it to get progressively worse. So, I asked for the proactive option. At which point the surgeon in my local hospital said “Well, if you were my wife I wouldn’t let you do it” and referred me to a different specialist further away.
At this point, I was the one who slowed things down… the day before a scheduled MRI ordered by this new specialist, I found out I was pregnant with my second baby. That meant we had to hit pause on everything until she was born, which is absolutely fair. My daughter arrived in May 2023 and we got everything back in progress.
After the MRIs and some new x-rays I had some some steroid injections into the hip joint, to see whether that alleviated my pain. When they didn’t work, and the scans confirmed no arthritis in the joints, I went on the waiting list for my PAO on my more painful side.
So what is a PAO?
A periacetabular osteotomy is a pretty huge undertaking. It involves chiseling/sawing the hip socket out of the pelvis, rotating it, and screwing it back into its new position while the bone regrows. Moving the socket stabilises the joint, reduces the pain from recurrent dislocations and, best case scenario, could mean the recipient never needs hip replacements.
I started with my left side, so we’ll refer to it as my LPAO surgery. It was booked for March 19th of this year.
So, just to be clear, I first saw a doctor about my hip pain in 2019. So six years between first appointment and surgery.
Surgery time
The surgery itself didn’t go entirely to plan: when trying to place the screws in my pelvis two drill bits broke, and couldn’t be removed. This means I now have two chunks of surgical steel lodged in my bones that will never come out. It shouldn’t cause me any major problems, but could become problematic when trying to do MRIs. We’ll deal with that when we get to it, I suppose.
I had expected to be pretty immobile and in a lot of pain when I came round, and I was fairly uncomfortable but I was fine! I texted my husband, and other loved ones, and told them I was awake and doing alright, and as far as I knew I was!
Then I started to feel very hot. Then very cold. Then very sweaty.
Then my ears started to make a whooshy staticky sound. Then my vision started swimming. By the time I pressed my call bell, I was completely blind.
I initially thought I was conscious for all of what happened next, but now I know that is impossible. I’ll tell you as much as I can remember:
A nurse came over and I couldn’t see, speak or breathe. I could hear her talking to me, but I couldn’t respond. They called the crash team, and I heard someone say they couldn’t find a pulse. Then someone else said the same. They put an oxygen mask over my face and pressed my chest to help get me breathing again. I heard my husband arrive, and I heard them say he couldn’t come in just yet. I felt them place defibrillator pads on my body. I remember asking someone to wait with my husband, because he’d be worried. I remember saying “Not to be dramatic but am I ok?” and the previously noisy room going silent. I felt someone pat me on the arm and say “We’re doing our best.”
What I know now is that my blood pressure had crashed out so spectacularly that I’d gone into organ failure. I had barely lost any blood during the operation, so nobody really knew what was going on or why, but they fixed it by giving me a lot of fluids very quickly to bring my blood pressure back up. Once I could see again they let my husband in to see me. It wasn’t until later that a doctor came to confirm how serious it had been. After debriefing us about the 40 minute efforts of the crash team, she said “Does it reassure you to know that we were all really scared for you?” And in a way, it sort of did? It was weirdly helpful to hear that I wasn’t overreacting, that for once a doctor was actually concerned about me. I wish it hadn’t happened, but I am very glad it happened with that particular team, because I was very, very well looked after.
Recovery in hospital
I have so much to say about this that it risks becoming a novel, so I’ll keep it as brief as I can:
Physiotherapy was wildly variable. Some of them were very compassionate and really understood the scale of the surgery I’d had and the loss of function and pain I was in. Some were the medical equivalent of a personal trainer who has always been fit, hot and thin. I cried a lot, and I am not typically a crier.
I spent several days very anxious that I was going to die in my sleep and that nobody would notice.
I still think I was discharged before I was ready because the ward wanted my bed back, not because it was in my best interests to leave at that point. Despite assurances that I wouldn’t be going home until I was confident I was safe and capable of taking care of myself, I was taken home in an ambulance still unable to do much more than take myself to the bathroom and back. Climbing the stairs when I got home that night was agony, not to mention fucking terrifying and I spent weeks doing very, very little and in a lot of pain. I told everyone who would listen that I couldn’t imagine ever putting myself through this again. I felt so guilty and grateful that my husband was functionally a single parent, plus had to look after all the animals and be my carer all at once, and I could barely put my own socks on.
So, how are things now?
Better. Not 100%, but better. I’m a LOT more mobile than I was even a week ago, and progress feels more linear and consistent. I’m in significantly less pain, and feel less nervous about attempting different movements or leaving the house. My dad bought me a secondhand mobility scooter, and that has been a lifeline. I can collect my son from nursery on it or pop to the shops and bring home groceries, which I couldn’t do on crutches if I tried. One of my short-term goals for physiotherapy was to be able to get around the garden and pick up chicken and quail eggs, and I can do that now, albeit I have to put the eggs in my pockets because I need both hands for my crutches once I start moving. I even had my first totally unaided, unsupervised shower recently, which felt like an impossible, unthinkable milestone a fortnight ago. I got to go to my best friend’s baby shower and take my daughter out for her birthday. It’s difficult, and sometimes still exhausting and painful, but I can imagine a version of my life where I can have more spontaneity again.
The slight spanner in the works is that I had some tests, because of the loopy bloo pressure incident in the hospital and some other previously unexplained weirdness with my heart/blood pressure/body temperature and it turns out I have something wrong with my heart. I’ve had one test at the doctor which confirmed an electrical issue, and I have three cardiology appointments this month to find out more.
I’ll be honest… I already feel like people’s eyes roll back when I have to list all of my medical “stuff” and I wasn’t looking for more to add to the list. I’m struggling to balance being grateful that we’re looking into it, and being so very angry.
I am angry that I was ignored, belittled, called a liar and made to feel like my pain was not important or real. I am angry that I have a bunch of supposedly inherited diseases that nobody else in my family has (not that I’d wish it on anyone, but it can be very isolating). I’m angry that there are so many things not quite right in my body and my brain. I am angry that I still have untreated injuries from 2021, I am angry that I am not alone in having had this adversarial, dismissive experience with medical professionals. In fact, amongst women (especially fat women) this seems to be the norm!
I’m so tired. and not just because I have a fatigue disorder…
The thing is, though, I’m also quite proud of myself. I have a lot going on, and while I have felt fairly useless and helpless and burdensome lately, I am so proud of everything I have done despite a body and a brain that seem specifically designed to prevent me from doing ANYTHING. Nothing seems to come naturally to me, but I manage in spite of it. I don’t think I’ll ever say that I’m grateful for my disabilities, because honestly if I could choose a healthy body then I’d have a healthy body, no questions asked. If I could choose to be pain-free you can bet your ass I’d be pain-free, thanks. Give me all the energy! Let me sleep a normal, unbroken amount and not wake up immobile and in agony! Let me walk without aids, let me leave the house and drive again! There are lots of things that I cannot do, or cannot do without pain or great difficulty. But I do what I can, when I can, and that is the best I can do for now.
So, will I get the other hip done? Ask me again when I’m off crutches. We’ll see.
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