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"Chronic Pain for 11 Years"

About: East Lothian Community Hospital / Rheumatology East Lothian Community Hospital / Trauma & orthopaedics East Lothian Community Hospital / X-ray General practices in Lothian

(as the patient),

For 11 years of my life I have suffered from chronic pain in my lower back. It started with diagnoses like growing pains, pulled muscles, just being a kid. Until I couldn't take it any more. 

GPs prescribe painkillers starting with NSAIDs and currently opioids which as many know are addictive and I'm terrified of taking them no matter how much pain I'm in. 

After 9 years I finally saw rheumatology and NHS physiotherapy. Who sent me for 2x x-rays and a MRI. They told me there was no inflammation and to go back to my GP. At this point my GP (a trainee) told me by the time I was 50 I'd have osteoarthritis anyway. 

Now every time I see a GP they say they won't send me for any more scans (including MRIs) due to the fact I'm a woman and the area the scan would be needed due to radiation for my future to have children. I know for a fact MRIs don't have radiation. If I continue to be in this much pain for the rest of my life I won't even think about carrying my own children because my own body weight leaves me in tears on a daily basis. 

Every time I leave a GP appointment I cry, scream and want to punch someone because I get the same story every time. 

- no radiation due to ovaries 

- more painkillers (currently opioids) 

- nothing they can do 

- visit physiotherapy. 

I wasn't satisfied with the way my physio at East Lothian Community hospital was doing things, so I recently visited a different physio from the same department. Despite me seeing a physio in hospital and multiple private physiotherapists, my new physio is the only physiotherapist that has ever done certain tests on me. I left feeling satisfied that they were doing their best. 

A GP at my local practice referred me to Orthopaedics and I received a letter for a doctor at East Lothian Community Hospital. I however didn't meet with the doctor but one of their students, who was lovely and for the first time in 11 years someone noticed the physical difference between my lower left back and my lower right back (where the pain was) and they referred me for another MRI. 

I left that appointment crying happy tears because for the first time in 11 years I felt listened to. 

I'm in a 6 week flare up taking so many pain killers and having to call out of work more than I'd ever like and I feel like no one ever listens to how I feel when it comes to my back. They see a young girl who should be healthy but isn't. It isn't right that I've been left in pain for 11 years of my life.

I've cried more over people not listening to me about my own body than anything else in the world. Is it so bad to ask for a diagnosis or permanent solution and not a temporary solution? 

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Responses

Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian yesterday
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 21/11/2025 at 14:17
Published on Care Opinion at 14:17


picture of Claire Withnell

Dear funnyym78,

Thank you for sharing your story. I am so sorry to hear about the long and painful journey you have been on with your chronic back pain. Living with severe back pain for 11 years is difficult enough, but to also feel unheard, dismissed, or misunderstood throughout that time must be incredibly hard.

Reading your experience, the years of interactions with many services, receiving conflicting information about the MRI, fearing the medications you’ve been offered, and leaving appointments in tears, shows just how much this has affected every part of your life. Your frustration, exhaustion, and emotional pain are completely understandable.

Having spoken to the Clinical Service Manager at East Lothian Community Hospital, he wants to make sure your concerns are fully understood and properly investigated so that your experience can be reviewed in detail. To help he and the services do this, he would be grateful if you could contact the NHS Lothian Patient Experience Team.

You can contact the Patient Experience Team, providing your details:

By telephone 0131 536 3370 (Mon-Fri, 9am to 2pm) or by email LOTH.feedback@nhs.scot

Once again, I am so sorry to read of your experience with our services, but please don’t lose hope in what has clearly been a very difficult time. I am hopeful there is care available to support you.

Kind regards,

Claire

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