"I feel advice is not reliable"

About: Berwick Infirmary / Ear, Nose and Throat Berwick Infirmary / Gynaecology

(as the patient),

Since 2011 when I got problems with painful protruding ribs and pressure on them, I have not got any answers fro my conditions. Skin rashes etc on scalp face arms and legs. Diagnosed fibromyalgia in 2005. Swelling of lip tongue and discolouration round eyes.

Have had a cough for 2 years (at night) too which GP said my chest was fine and offered no other explanation and pelvic pain fro just over a year which is worsening every day and is disabling. I cannot walk uphill or climb steps or bend down without pelvic pain. Had gallbladder removed august 2013 -swollen stomach worse since. Weight gain from 11. 5 stone to 14 stone in 3 years but all abdominal and loss elsewhere -not accepted by doctors.

Have had ct scans MRI scans ultrasounds and x rays but they keep saying everything is normal. Have had poor appetite for several years and only now eat breakfast and a small meal but even that is not so now. I never feel hungry and have constant pressure on my stomach and bladder. Have had polyps removed also and diagnosed with hiatus hernia gastritis and duodenitis following recent endoscopy, ca125 has come down from 152 at its peak to 37 which is still above range tho these figures vary between GP and hospital who said my ca125 was 14 when tested.

So I feel it is not reliable and knowing it is difficult to detect ovarian cancer and that it gets mistaken fro IBS I am still concerned this is the case. My symptoms bear those of lupus and were not accepted by rheumatologist who only told me I needed to lose weight and about ca125 which were not his department. Also had an op to insert tape to prevent stress incontinence but this possibly has failed as leaking urine again but not referred to gynae tho gp has spoken with gynae. Requests for referrals to ent. rheumatologist and gynae refused.

Also have some hearing problems-tinnitus and hearing music and voices which happens less often but still unable to hear tv properly even when on full volume it sounds quiet and have subtitles on so I dont miss anything. GP looked in my ear and said everything was fine but how can he tell I cant hear just by looking? Nasal bone growth and bleeding and sores inside nose treated but not diagnosed. Seen private gynae and had scans which again were said to be normal-ovaries normal but no reason fro pelvic(bone )pain which is spreading.

Drs assume I have IBS even tho never complained of or had persistent bowel problems and told it is not ovarian cancer therefore must be bowels tho colonoscopy two years ago was normal. Have had protein in urine on several tests and recent stool samples have shown something as I have to see GP on Friday re this but dont know any more than that

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Response from Joanne Mackintosh, Service Improvement Project Manager, Northumbria Healthcare NHS Foundation Trust

Dear Madam,

I am so sorry to hear about the poor health you have experienced over recent years. I can understand how frustrating and difficult this must be when you continue to have symptoms when investigations are yet to reveal the cause.

The anonymous nature of your review makes it very difficult to provide a more informed and personalised response. I would be keen to help in any way I can. If you think this would be helpful to you please drop me a line at Joanne.mackintosh@northumbria-healthcare.nhs.uk

Best Wishes


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