Advice Needed Please — Scope | Disability forum
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Advice Needed Please

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Delbut67
Delbut67 Community member Posts: 2 Listener


Hi I am new here and wanted to tell my story with the hope that I can get a better understanding as to what is happening with me, as I am really confused and my mental health is really suffering because of this.I had a hysterectomy (full laproscopic) in May 2013 for heavy periods and pelvic pain. The findings were Adenmyosis in the womb.

Three years previous to the hysterectomy I was diagnosed with Fibromyalgia and Interstial Cystitis. And then in 2013 after the hysterectomy and removal of my ovaries my journey began.

I have never experienced so much pain and misery in all my life continously for the last 11 years. I have had right side chronic pelvic pain ever since my Hysterectomy. My fibromyalgia is alot worse and so is the interstital cystitis.

A recent CT scan showed a 3.5cm mass. GP ordered a MRI to confirm if benign and the results where a probable implanted device left in from patients previous hysterectomy.

A followup appointment from Gyny said the radiologist has it wrong. After asking for a second opinion I was offered a vaginal scan which was painful and this revealed a 3cm area consistant with the MRI scan.!!

I am so confused in constant pain and nothing is happening. Five weeks ago I was told I would go on a list for laporoscopy but now this has been declined due to to many adhesions and maybe injury to the bowel by the surgeon who preformed the hysterectomy.

I have been on Morphine for 10 years now and at a loss what to do so I thought in posting my story I could be given some advice. Thankyou

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hi @Delbut67, that was quite the read. Your story reminds me slightly about my mum's own problems with a hysterectomy. She severely haemorrhaged during the surgery but only found out about it years later when problems just kept adding up. They never told her about it. 

    Have you ever put in a complaint about the procedure given all these issues it has raised? The Care Quality Commission goes through the process here: 
    Complain about a hospital, community or mental health service - Care Quality Commission (cqc.org.uk)

    I know this won't help with the pain, but it could help you get some answers and maybe get the hospital to properly consider how to make your situation better!
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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