moonie8404
new member
Hi everyone, i'm new to the forum after i've been googling madly these last few months trying to find some more answers on my condition i've just been diagnosed with.
I have always had issues with my hips since a little girl, I could never sit crossed legged at school and always wondered why. Anyhow as I grew up I started getting issues with my left knee subluxing which was eventually operated on when I was 21. Along with issues back and neck pain and I was referred to rheumatology who diagnosed me with fibromyalgia but couldn't confirm what else was causing my issues. I fell pregnant when I was 31, and throughout that pregnancy I had awful pain in my hips which got so bad I ended up on crutches as I was unable to walk. I was diagnosed with Sensory Processing Disorder (SPD) but after my Emergency C section (EMCS) with my rather large and heavy son, I still had problems in my hips and SI joints hurt. MRI confirmed bilateral inflammation and I was diagnosed with Ankylosing Spondylitis. I went on to have another child in 2017 however I found this pregnancy much more manageable in terms of pain due to great physio support.
Fast forward and my condition has gotten worse over the last few years even being on biologics, until in 2021 I told my rheumy that my hips were just getting so painful. She ordered an MRI and the results of that led to me being seen by an orthopaedic surgeon who did a x ray and last year told me I had bilateral acetabuli protrusio and that I will need both hips replacing at some point. He said my AS has caused softening to the bone which has caused this. However because I was 37 (38 now) they want to put off the replacements as much as possible due to the lifespan of hip replacement joints and want to reduce how many I may need in my life, they said they want to monitor regularly (once a year with the NHS) on x rays the level of progression as they do not want it to protrude into the pelvic space.
This was back in September, now March and I can feel my pain has increased even since then - they said my left was the worst, however I saw another OS in December for my knee problems (apparently ITB syndrome) I am having (which he says are related to my hip).
I can't find much out there really and feeling a bit of a loss as I always like to do research into what I have, how I can manage it, I can't even find anything on the NHS, it seems quite a rare thing to have and still studies are being undertaken into it - ideally i'd love to see a OS who has specialist knowledge in the area as i'm a little concerned why one OS is telling me my left side is worse then another is saying my right side is worse - doesn't fill me with much confidence.
I've attached my x rays of my hip - is there anyone out there with experience of this, or have it themselves and can help? My mobility is reduced because of this as is getting worse, my AS also causes a lot of issues, I have slipping rib syndrome on top of this and only recovering from surgery from that. I can no longer lay on my sides in bed due to the hip pain I get from the pressure on the joints, so I have to lay on my back but this puts pressure on my SI joints which are inflamed and damaged. My anti-inflammatories I am on aren't doing anything to reduce inflammation, my OS said my rheumy needs to get on top of my inflammation but my rheumy refuses to change my meds or my biologics until my hips are resolved. I've two young children and i've already missed out on so much play with them due to my disabilities which are just getting worse, it makes me so sad I can't do things with them and they at the ages of 4 and 7 have to look after me when I'm in pain or help me up off the floor or stand up from a chair. They shouldn't have to do that!
What options do I have? How much longer a wait do I have? I know its going to get much worse before getting better - my pain management team won't issue me with painkillers as say i'm on enough (i take 60mg Etoricoxib and 1800mg Gabapention daily). They took away my pain patches :(.
Sorry this is a bit rambly and well done if you have got that far. Any advice gratefully received or directions to any articles or information. I am based near Tunbridge Wells, Kent, UK if that helps at all. Thanks so much.
I have always had issues with my hips since a little girl, I could never sit crossed legged at school and always wondered why. Anyhow as I grew up I started getting issues with my left knee subluxing which was eventually operated on when I was 21. Along with issues back and neck pain and I was referred to rheumatology who diagnosed me with fibromyalgia but couldn't confirm what else was causing my issues. I fell pregnant when I was 31, and throughout that pregnancy I had awful pain in my hips which got so bad I ended up on crutches as I was unable to walk. I was diagnosed with Sensory Processing Disorder (SPD) but after my Emergency C section (EMCS) with my rather large and heavy son, I still had problems in my hips and SI joints hurt. MRI confirmed bilateral inflammation and I was diagnosed with Ankylosing Spondylitis. I went on to have another child in 2017 however I found this pregnancy much more manageable in terms of pain due to great physio support.
Fast forward and my condition has gotten worse over the last few years even being on biologics, until in 2021 I told my rheumy that my hips were just getting so painful. She ordered an MRI and the results of that led to me being seen by an orthopaedic surgeon who did a x ray and last year told me I had bilateral acetabuli protrusio and that I will need both hips replacing at some point. He said my AS has caused softening to the bone which has caused this. However because I was 37 (38 now) they want to put off the replacements as much as possible due to the lifespan of hip replacement joints and want to reduce how many I may need in my life, they said they want to monitor regularly (once a year with the NHS) on x rays the level of progression as they do not want it to protrude into the pelvic space.
This was back in September, now March and I can feel my pain has increased even since then - they said my left was the worst, however I saw another OS in December for my knee problems (apparently ITB syndrome) I am having (which he says are related to my hip).
I can't find much out there really and feeling a bit of a loss as I always like to do research into what I have, how I can manage it, I can't even find anything on the NHS, it seems quite a rare thing to have and still studies are being undertaken into it - ideally i'd love to see a OS who has specialist knowledge in the area as i'm a little concerned why one OS is telling me my left side is worse then another is saying my right side is worse - doesn't fill me with much confidence.
I've attached my x rays of my hip - is there anyone out there with experience of this, or have it themselves and can help? My mobility is reduced because of this as is getting worse, my AS also causes a lot of issues, I have slipping rib syndrome on top of this and only recovering from surgery from that. I can no longer lay on my sides in bed due to the hip pain I get from the pressure on the joints, so I have to lay on my back but this puts pressure on my SI joints which are inflamed and damaged. My anti-inflammatories I am on aren't doing anything to reduce inflammation, my OS said my rheumy needs to get on top of my inflammation but my rheumy refuses to change my meds or my biologics until my hips are resolved. I've two young children and i've already missed out on so much play with them due to my disabilities which are just getting worse, it makes me so sad I can't do things with them and they at the ages of 4 and 7 have to look after me when I'm in pain or help me up off the floor or stand up from a chair. They shouldn't have to do that!
What options do I have? How much longer a wait do I have? I know its going to get much worse before getting better - my pain management team won't issue me with painkillers as say i'm on enough (i take 60mg Etoricoxib and 1800mg Gabapention daily). They took away my pain patches :(.
Sorry this is a bit rambly and well done if you have got that far. Any advice gratefully received or directions to any articles or information. I am based near Tunbridge Wells, Kent, UK if that helps at all. Thanks so much.
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