ESA: Pudendal neuralgia — Scope | Disability forum
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ESA: Pudendal neuralgia

Alpine88
Alpine88 Community member Posts: 13 Listener
Hi 
I am new here and wanted to introduce myself..
I have Pudendal neuralgia following perianal sepsis where I lost half my bum cheek and suffered damage to my sphincter muscles and surrounding nerves in 2016. 
I am under specialist care in London and have had many operations including some reconstructive surgery of my bum cheek, a fistulotomy, many nerve blocks and radio frequency work, caudal epidurals and most recently a sacral nerve stimulator fitted.
My pain ranges from 5-8/10 and I walk with the aid of a stick. I have lost much of my independence through this disability and have subsequently suffered with mental ill health including depression, ptsd (which I received EDMR therapy for) and anxiety. 
I am on a range of medications which make me drowsy however I have a job which I need to perform at so cannot take my medication when I work. 
I love working but at present this feels impossible. I receive PIP and am looking to make a claim for ESA. 
I would be keen to hear from anyone who has made a successful claim for ESA under similar circumstances? 

The stim is not giving me the pain relief I had hoped for so it seems I will need to continue using strong medication to be able to function even at an adjusted level. Due to my bowel issues I have been advised it is likely I will go down the stoma route within the next year or so. 

Looking to reach out to anyone who might like to chat who has perhaps been through similar. It is a very lonely place to be.

Best wishes 

Comments

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @Alpine88    Pleased to meet you.

    Thank you for joining and sharing.

    Sorry to hear what you have been through. Please can I add you come to the right place for support, friendship.

    I am one of the team of community champions.

    We guide, advise and help members of our community.

    Please if I can suggest you mentioned your mental health.

    I used these three mental health charities.

    Even though had treatment it can be still beneficial to continuous your mental health.

    This is something I continue to do. Have knowledge, education to help myself cope.

    I enclose some links for those including other charities may be of interest to you.

    https://www.richmondfellowsip.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    All three offer support, guidance, information, advice on your mental health do take clientele with additional disabilities.

    Offer floating support, benefit advice.

    I have a disability as well

    Might not be in all areas, last one an advocate charity represents you on your behalf. Speaking for you dealing with mental health issues medical professionals Doctors.


    https://www.awaywithpain.co.uk.


    This is an organisation give relevant information on pain.


    https://www.bladderandbowel.org.


    Helpline 01926 357220


    Useful information, support any advice.


    Please can I advise your benefit situation with ESA. Contact the mental health charities worth looking at.


    The advice they give can be supportive.

    Please I can help further with anything, please tag my name. Wish you well for a positive outcome on your ESA.

    If you look at our ESA advice on our website.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
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  • Joanne_Alumni
    Joanne_Alumni Scope alumni Posts: 188 Pioneering
    Hi @Alpine88,
    Welcome to the Community  :)
    If you would like to talk through your benefit options our Scope Helpline advisers would be happy to help. The call is free and the lines are open 8am to 8pm Monday to Friday and 10am to 6pm at the weekend.
    Joanne 
    Scope
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Alpine88 and a warm welcome to the community, is there anything else we can do to help? :)
    Scope

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