Challenge! Write or email your local government official!

I wanted to issue a challenge to sufferers and the families and friends of sufferers. If you have the energy, as I personally know how consuming the pain can get at times for the sufferers and the care takers of those with our conditions, try to write the local government official who represents you in your home country. I am going home tonight and emailing mine. We might, alone, feel like we can't initiate change, but we have to keep fighting. It is either we fight or roll over and let the ignorance and arrogance of the medical community(especially medical insurance companies) prevail. There are those in the medical community that genuinely do care about our cause, but no one with this condition should ever be told they are just crazy and druggies for wanting pain pills or proper treatment to try to have some kind of life. No one should ever be told they are just imagining or choosing a life of pain and all the horrible things it can do to our lives. We should NEVER EVER be called a hypochondriac for our legitimate life long suffering!! I tried not fighting anymore with a failed attempt on my life. I don't want anyone else, including myself, to be pushed to that point anymore. I still hope to one day have my son forgive me for my moment of weakness. While there aren't millions of us on this board, there are millions of us who suffer. Now, take the millions of us who suffer and add all of our family members and friends to that number. That could make change happen! I know everyone is tired of being bullied or ignored by a system we help fund, a system that is supposed to protect us, a system that would rather turn their heads to make more profit than a system that prides itself on human decency by taking care of it's own. If it wasn't for our taxes, our hard efforts through our own and our families' blood, sweat, and tears; our government representatives and the medical community would cease to exist. We are all of the parts that make it possible for the engine to keep pushing! It's time for them to look under the hood and see our importance!

11 Replies

  • Whilst I agree with your sentiments and everything you say I fear there is not enough money in it to instigate a proper cure or even diagnosis.

    My wife suffers like you and has attempted suicide but now after twenty five thousand pounds trying to solve the problem has given in and her life has no quality as she lies in a special bed or chair never going out not doing anything or seeing anybody, her life is over, the medical profession have let her down, they do not understand and do not want to understand as it is not part of their training, in fact, our GP and all the top consultants we have seen have never heard of Pudental Nerve Entrapment and are left with the only diagnosis available to them, Mental Problems!! But there were'nt any before the pain. After five years of continuous pain, acid reflux brought about by constant anxiety, unable to eat proper food, drinking Gaviscon by the bottle one is entitled to consider Switzerland as a realistic option.

  • I am so sorry about your wife. This condition is a tragedy for the sufferers and the family of us sufferers. I was also practically bed ridden with my condition for 1.5 years. I have had broken bones that didn't give me the amount of pain this has given me. I too could barely eat anything and couldn't defecate on my own. It is one of the worst conditions for anyone to suffer from due to so many aspects of society, medicine, and our government. You are a strong person for supporting your wife through all of this uncertainty and tragedy. I know it is tough for you too. We, as sufferers, feel so alone and uncertain about our futures, so it is very important for us to have that kind of support. I don't have that kind of support in my life anymore and that has made my struggles now very difficult.

  • I'm so sorry for what you're going through. There are some treatments out there, pudendal nerve release surgery, interstim, pain management. I'm sorry about the ignorance of so many doctors. I've met so many on this journey. We have to keep fighting, even when we're so dead tired. It is the hardest thing I've ever done. Look at the pudendal hope site, there is a lot of information there..

  • What country do you live in - if we knew this we could make some suggestions.

  • Hi

    We live in the UK,  just South of London in Kent.

  • Have you thought of writing to the Care Quality Commission Headquarters, London. or NHS England, Sir Bruce Keogh. Ask them to help your wife - When all else fails go to the top.

  • I'm in the United States.

  • Why not write to President Obama - as he introduced Obama Care

  • I'll do that :-) 

  • Good Luck, let us know if they offer any help.

  • I went online and sent an email to him last night. Going to send one to Biden too.

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