Patient Stories

A work in-progress

I am new to my hip dysplasia diagnosis and in limbo trying to figure out where to go from here. I don’t have a success story (yet), but might have a story that some can relate to.

I started having hip and pelvis pain in April 2020 at the end of long runs. It progressed until the point where I couldn’t walk outside of my flat without deep shooting glute pain that would radiate down my leg. As an avid athlete (I mostly ran, cycled and rock climbed at the time) I wouldn’t let pain keep me from staying active, so I kept hiking and cycling right until the day I couldn’t walk any longer. I went to a physio who diagnosed me with bursitis and mostly stayed at home for six months rehabbing until I could walk again. I slowly started to run, swim and climb again, and didn’t have pain unless I was at the end of a 10km run. Then, in March 2021, my stabbing hip pain came back and I was again house-bound. This time, I had other pains that scared me more- nerve pain up my back and down my leg, pain in the front of my pelvis, pain down the side of my hip and that typical c-sign pain. I finally saw an orthopaedic surgeon in May who diagnosed me with a labral tear and said surgery would be the only way to return to being active. Since surgery wouldn’t be for another year at least with the NHS (public health care in the UK), I chose to go privately and found another surgeon who my physio recommended. He did a 3D CT scan and went through a few of the angles with me, then came up with a rationale for why an arthroscopy would work. At this point, he didn’t mention dysplasia so I had no idea what the angles meant- all I knew was he felt confident about doing an arthroscopy. I trusted him and went ahead with it on October 7, hopeful that I would rehab well and my pain would go away.

I’m now four months post-op and in worse pain than before surgery. I had joined a bunch of hip groups on Facebook around the time of my surgery and people kept saying I had hip dysplasia due to my CT scan angles (slight acetabular retroversion and undercoverage). I hadn’t heard this from my surgeon so I didn’t take it too seriously. However, when my pain wasn’t subsiding around the 8 week mark despite diligent physio, I knew something was wrong. I still couldn’t walk without pain and felt way less stable in my hip than before surgery- it felt like my leg was moving around in circles and I had to focus on keeping it in a straight line when I walked. I told this to my surgeon and he said I was struggling because of my mild dysplasia. He was confident I would recover if I could strengthen my psoas and expressed his opinion that I wasn’t rehabbing well enough. I felt so angry that he chose to tell me I had dysplasia after surgery and attributed my pain to my poor rehabbing, when he had no idea what my rehab looked like. 

Since that call I’ve done a lot of reading on mild hip dysplasia (my LCEA is 21) and hip scopes, and most of the literature cautions against scoping even a mildly dysplastic hip due to the scope’s propensity to worsen stability in the joint. Most articles advise surgeons to close or tighten the capsule, and I’ve learned my capsule was left open. I’m now arranging meetings with dysplasia surgeons and hoping they’ll have answers for me, but it might be too early for them to advise on next steps. I’ve never felt so depressed in my life but I’m trying to stay hopeful by reminding myself that this is just a really difficult period and will pass. As someone who derives so much joy, identity, connection and mental wellbeing from sport and moving freely, my dysplasia has cut me off from a major resource and I’ve had to find new ways of feeling human. I wish I could say I’ve found a new passion, but I have learned a lot from the process of having to inform and advocate for myself with health care professionals, most of whom don’t know what hip dysplasia is. I’ve discovered the Patreon put out by UK-based physio Laura Rutterford called ‘Help for Hip Dysplasia’ and found that incredibly helpful, because it gives ideas for strengthening exercises that are appropriate for those with dysplasia (both pre and post-op). Even though a PAO is a huge surgery to go through, I am hopeful a surgeon I meet with will say I need it done so that at least I’ll have a solution to my ongoing pain.

This photo of me was taken a few years ago on a climbing trip in France. I was at the top of a multipitch route just loving life. It’s a reminder of what I’m working towards, except now climbing a more difficult terrain of waiting in pain, being house-bound most days, and praying I’ll have answers soon. Sometimes these internal battles are more difficult!