Hi, Mum with Hip OA and awful referred pain.

Sassykat

Hello, I’m new!

I’m 45, Mum of two (3&6) and up to now have been misdiagnosed, although I’m finally seeing the orthopaedic specialist this week after 9 months of hip pain.

I was originally told I had groin strain after a fall, then a labral tear which I needed a contrast MRI for. The contrast absolutely killed me, left me almost completely lame, but in agony and ending up with me being signed off for over two months.

I was given some vague results after of having “significant cartilage loss of the weightbearing aspects on the acetabulum and femoral head” and not a tear, but was literally left with just pain killers and no explanation as to why I am now unable to walk without a crutch, bend, get my shoe on or carry my daughter.
The MSK team referred me urgently to the orthopaedic department due to how much pain I’m in, but this was downgraded so I’ve been left in limbo, no physio, no exercises and just opiods and naproxen which don’t work. I cry every night because the pain is so bad, particularly in my knee, and I rarely sit because it hurts too much and my lower leg stops functioning properly.

I paid to see a specialist as I was so upset, who agreed with the results, he thought the contrast had caused my hip to be filled with fluid, (and they had also hit my femoral nerve) which needed draining and steroid injection immediately, but it was over £2000 privately. So I’ve waited 6 more, long weeks, trying to function like a normal Mum but inside I’m just so sad and disappointed in the whole ortho process.
Does anyone out there have any tips for the referred pain? It’s like a band is attached from my hip to my knee and it absolutely burns everytime I get my leg in the wrong position. At night it is hell, and I feel so bad for my children, until October I was completely fine. Also what happens on a first referral appointment? They’ve said to give 3 hours.

Thank you for reading, honestly I am fun and not usually this down!

X

Trish9556

Hi @Sassykat

Are you based in England? If you are, you can ask to be treated at any hospital of your choice. I've just had a hip replacement at a private hospital paid for by the NHS. Can you go back to the MSK team and ask them to refer you to a private hospital locally who will look after you? Research the NHS choices scheme online.

I hope you get some relief soon

Trish xx

Trish9556

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Trish9556

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

try this :)

Sassykat

Hi Trish, because the MSK team wanted them to see me urgently it apparently wiped out the private hospital choices for my first referral. But then they didn’t give me an urgent appointment, so I’m not really sure what to do. The consultant I’m under is a under 50’s hip specialist who also saw me privately for the consultation, so I’m hoping I might be able to ask to change hospitals once I’ve been seen this week. I’m on The Wirral😊

The radiographer who viewed my MRI gave a diagnosis of “early degenerative OA, routine priority” which makes it feel like it doesn’t matchup to how much pain I’m in and almost makes me feel pathetic if its only early signs. Because god help me if this is only the beginning 😞 xx

Nurina

Hi @Sassykat I'm so sorry you are in pain. Doctors don't understand that what they see in the xrays might be completely different to how you feel. There are people with advanced OA without pain and people with not much degeneration, but in agony. I had my two hips bone on bone but only one was in pain. That depends on what tissues, nerves, ligaments, muscles are affected. If you have spurs or cysts, the mobility is getting reduced and you could be in pain even you don't have loss of cartilage. I hope your consultant puts you in the priority list. Good luck.

claudsl

Hi @Sassykat - Firstly, welcome to our online community. We are a friendly and supportive group and I hope that will be your experience as well.

I am sorry to hear that you are in so much pain and not getting the support you need. I also have arthritis and have a 2 year old daughter so I understand how difficult it can be trying to be a mum while living in so much pain.

I have found some information on exercises which may help your knee and hip pain. It may be worth giving them a go.

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-knees/

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-hips/

I really hope your first appointment goes well. I would assume you will have blood tests and perhaps scans of where you are experiencing pain, as that is what was done on my very first appointment with my Rheumatologist.

Please keep us updated, I would love to hear how you get on and hope you will get a lot of questions answered.

Good luck, Claudia x

SoniaR

Your story is so sad, and shows what a state the NHS is in. Glad you are finally seeing an orthopaedic surgeon at last. I know with my hip pain, the consultant told me the pain with OA travels to your groin and down the thigh. He said pain travels downwards not upwards, if that’s any help? Have you had your knee xrayed too? Will be worth doing that just to rule out OA in the knee. I eventually had a THR at 58 and it has been amazing. The first few weeks of recovery were an ordeal but I was driving by 7 weeks and no pain anymore! My knees need replacing, so looking into that. I hope things start to improve for you and you get the help you need.

Sassykat

Hello, thank you for all the lovely comments❤️ I’ve actually posted again as the consultant now thinks I have Femoral-acetabular impingement alongside some OA. He didn’t think the pain I get could be caused by the arthritis and did find a spur on my MRI. The plan is having to wait a further 4/6 weeks for hip drainage and steroid injection to see if it helps, in which cause they’ll say it’s hip for definite and then. a CT scan to try to get more details. Literally in limbo again, no help with the pain, no offer of physio and it turns out these orthopaedic surgeons dont treat FAI anyway.
Think he kept trying to make out the pain was muscular, when I know my body and where it hurts.
thanks so much ❤️