This month we’d like to share Allyiah’s story with you, and we’re grateful that she’s given her time to write candidly about her ongoing experience with a hidden disability and her struggle to get it treated...
AA: Hello Allyiah, tell us about yourself, and who you are…
Hello, my name is Allyiah – I’m 26 - and I have a labral tear in my left hip which was likely caused by Femoroacetabular Impingement (FAI). These are both conditions women are more susceptible to, especially women who took part in a lot of sports growing up. I am a woman of colour and throughout my journey I feel like I have been side-lined, not taken seriously, been pushed from department to department...
AA: Why do you feel that way?
My GP had no clear direction or understanding of what to do - a lot of the time I had to make suggestions for them. I have been the A&E a number of times, with nurses there joking and laughing, suggesting I’m ‘probably just imagining it’. It has been a really harrowing experience for me because doctors - including my GP - would not take me seriously.
AA: So, is it a relatively unheard-of condition?
The conditions I have are not all that rare! There are a lot of papers on the kind of conditions I have, and its well known that young women who play sports - and who have played sports growing up - are susceptible to these kind of hip conditions. However, for some reason three orthopaedic surgeons wouldn't take me seriously and neither would any of the other specialists I was referred to by my GP.
AA: Allyiah please describe your journey, and how this all began
My journey has been a long and difficult one. I initially started hearing a clicking sound in my hip back when I first started University - about 6 years ago now - but back then there was no pain, just clicking when I stood up or sat down. I found this strange, so I went to the doctor but was dismissed as I wasn’t in pain.
That kinda characterises my whole journey because even when I returned and was in pain, my GP didn’t really have a clue, and sent me to lots of different departments at lots of different hospitals where I had to have lots of different procedures!
AA: Such as?
One being a laparoscopy - which is pretty serious operation - and I had to have three weeks off work. I was even advised to go to therapy because my GP was convinced I was feeling a pain which was no longer there. In the end I had to see a private physiotherapist who had to make the case to my GP for me to see an orthopaedic consultant.
So I saw four orthopaedic consultants and three of them refused to take it seriously until I paid up to see a private consultant that specialised in hip & knee conditions - and more specifically young adults with hip conditions. Only then did they start to take me seriously.
AA: Where did you start to notice the initial symptoms?
I noticed I was getting more tired during HIIT type classes, so I mentioned it to one of the PT’s at the gym, but they told me to just ease up on my workouts. Not much support offered at all, and considering this is an injury which can be caused by sport, I think it’s something PT’s should have at least some knowledge on…
AA: Was it simple enough to diagnose?
An MRI scan, MR arthrogram and an X-ray: those were able to confirm to doctors I had a torn labrum. Prior to that I had to go through a lot of other tests because doctors were very slow in pinpointing the cause of my pain. So, I had to go through a large number of really unpleasant tests and two serious operations which I was put under general anaesthetic for...
AA: That sounds like a lot of time in different clinics. How many specialists did you reach out to?
10 to 12 specialists from all different areas of medicine. I've seen four different orthopaedic surgeons alone…
AA: Could you please give us more detail about the condition itself?
A big part of FAI is that it causes pain and discomfort and most times leads to the tearing of the labrum in your hip (the cartilage). Put simply, it's a condition where either the ball & socket part of your hip joint is misshapen - causing pain as you move - or there are small bony parts that overlaps the ball and socket which cause pain as you move.
Both of these can lead to tears in the labrum - the cartilage that helps your hip stay secure and helps you to move without the bones rubbing together. My labrum is torn and I have FI which is why I feel pain with most movement I make.
AA: So, are you still in pain now? How does it impact you?
As I sit down to write these responses I'm in pain.
I normally wake up pain-free but getting to sleep is always really difficult - I have to sleep in a dead-straight position on my back. I can't sleep any other way because it’s really painful. Sitting for longer than 30 - 45 minutes at a time is considerably painful and the same for walking. Walking upstairs or uphill takes me ages and normally leaves me out of breath. Even if it’s only one flight of 10 stairs. I cannot sit cross-legged on my bed anymore, and everything takes way longer than it used to do, because I always have to stop and rest in between tasks.
It has affected my mobility in a very big way. Day-to-day activities such as bending to reach things that are low down, carrying shopping, walking and even sleeping are all so much more difficult than before. Sleeping is the hardest. I used to go for jogs, go to the gym as well as boxing once or twice a week, but I haven’t been able to do any of that for the last 3 years now.
AA: What would you say has been the most eye-opening experience for you?
This condition has changed my view on pain massively. As a woman, I experience pain monthly, but that pain is not constant, and most painkillers give me some relief even if it’s only slightly. No pain killers give me relief from the pain I feel in my hip, and it has been continual for the past 3 years. It came one day and never left. I had heard about how pain can be debilitating but I had only experienced that debilitation for short periods of time prior to tearing my labrum, but now I know pain can be long term and it can affect you mentally as well as physically...
AA: How exactly did that affect your day-to-day activities?
I’m a very independent person, so not being able to carry shopping or drive around/ walk around as much has been very difficult. I had to learn to ask for help with carrying shopping or in the early days I just couldn’t go shopping at all because the queues would mean standing up for long periods of time. So, I had to make sure to go at times where there was no queue or accepting defeat and leaving the queue if I started to feel in pain after standing for too long
AA: You’re quite young to experiencing such pain, how have you managed?
In the early days, I tried to manage it with painkillers but that didn’t help. Hot water bottles seemed to help but I needed the hot water bottle constantly and in the end I gave myself a hot water bottle rash which is very serious and can leave you permanently scarred! I
wasn’t aware hot water bottles could do that before, because even though I didn’t put in boiling water, the mere fact I had it on my hip constantly was enough to produce a nasty rash right across my lower stomach and thigh. It looked more like a bruise and it lasted for months. Epsom salt baths help, but can’t stay in the bath all day – as much as I’d love to!
AA: Does the pain come and go?
It affects you day-to-day as well. For a long time, I couldn’t go out with friends on nights out because there was no way I was putting heels on to go out dancing, where I know I’d be feeling pain in my hips and my feet! I had tried it before, and I had ended up in tears about two hours in. Not even alcohol could rid me of the pain, it only made it more intense. Now, because of the pandemic, I don’t worry about turning my friends down for a night out, but it was very isolating in the beginning and my friends were understanding but it was annoying all the same.
AA: Allyiah, let’s talk about living with that pain during the pandemic. During the last year, did you feel there was enough support out there for you?
Covid caused hospitals and the GP to be massively delayed and also caused a number of mistakes. I was told I had to wait to see doctors because of the Pandemic and when mistakes were made, my GP did not want to accept blame and neither did hospital. Physio department was completed shut down as was the pain management clinic.
AA: How did you manage?
It was a very tough time, I had to pay to see physio therapist privately in the end. When the physio department re-opened I had to have telephone consultations…it is just impossible to do physio over the phone and I found that process to be very inconsiderate. There have been instances where hospitals have refused to send over paperwork, delaying me for 2 months just before Christmas. There has been little to no support - everything has been Covid-centric, and I understand why, it’s a pandemic. Nonetheless, the NHS has not been very supportive to those who were already in the system and that they know need treatment for pre-existing concerns.
AA: At any point of your journey did you think to yourself ‘I need to take back control of this if I’m going to get treatment?’
After I saw 3 different orthopaedic surgeons who specialised in hip conditions who all said different things. One downplaying my pain so much that he said I would just have to live with it as there was nothing he or anyone else would do for me, certainly not surgery because it couldn’t be fixed! When I asked if that meant I would have to be in pain from 25 onward he said yes.
At that point I saw two further consultants, one who was very surprised by my pain but said he could not help and it would be hard to do this procedure during the pandemic, and another who referred me to a colleague as it wasn’t his area of speciality and my case was very complex.
Hearing such excuses, with no consultant wanting to take ownership of my care or provide me with a clear positive outcome I sought help privately because at 25 I was not willing to hear there was nothing that could be done. Especially when I had found so many academic papers online, lots of studies which evidenced there was the ability to fix my hip and I could live a life pain free, if a doctor was willing to help.
AA: Where will you go from here, Allyiah? Will you try the NHS again or will you continue with private providers?
Yes, I am now seeking help via private hospital because of the NHS continued unwillingness to take my condition seriously.
AA: Allyiah, thank you for sharing your story - please keep us updated!