pvpd ive had it for 1 and a half years

Posted , 4 users are following.

hiya all thought ill add my piece to this not mentioned enough condition..

?what happened well the opp was bad my right testical was crused at the top where the top 2 nerve beds are this is causing me great pain loss of job  I was a well know shop butcher fishmonger not going to say  where for leageal resons.pain management have said this which shocked me and people need to be awaire off first revershal is not above a 25 to 50 % fix yep not meany going to work second and by far the most me men should read and look into there is NO KNOWN cure.it can be managed by pain relief .

?I my self am on 25mg a hour of morphine sulphate via patch and liquid , pregablin,paracetomol,anti sickness,anda aray of things like tens machine ,I have had a nerve block for over a month and still failing to do my part as a dad of 5 kids,

?my top tips get to the right departments fast as you and gp need to try different things like drugs,GET a good hobby I'm a xbox ambassador here in uk. when in pain yea its going to hurt ICE BLOCKS same as you get in the summer time for picknicks fishing ect a good tens machine and keep the pads in a bag in the fridge ive been though a few my self .

?most of all should the nhs do more there are a few sites one of which I talk on via email, xbox chat please feel free,not blaming any body but was not told of the risk of this stats say its 2% of men in uk doc said small chance of pain lasting more then 6 weeks when I had the opp I only found out my self by looking out on google.guys we have this eather for own piece of mind or I'm my case to carry on injoying what we do with partner with out loosing her she nearly died the last pregnancy..

?aim is to get nhs or some one to read this get in contact and lets get some more resurch don this is not fair its taking my job has been lost and now disabled which hurts get some counciling even if it just a chat with another sufferer it helps take the time to find all the info you need to have a better way though the pain no quick fix so settal down with it get used to it men we hide this but suck it up talk to partner ect get help get on with some sort of life.. ill post up as I go thought the next part a infusion sounds fun not ...

?j4yt411 a xbox ambassador and a pvpd writer on the pvps and pvpd site

 

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  • Posted

    Had PvP for 6yrs now and getting ready to make decision for bilateral orchiectomy.

    Don't build your breath waiting for NHS or GP to read this or even its chance of reading.

    It isn't in their interests to change how they do things out how they advise of risks.

    GP surgeries perform vasectomy now under the guise of GPwSI, GP with Special Interest - this means they get paid extra every time they perform a snip

    If they were to advise of true risks (NHS figure 10% / globally up to 43%) of chance of pain then no-one would have it done

    They gain the cash payment whilst then passing problem back to NHS proper. GP's are NOT NHS Drs, they are private practice who contract to NHS and therefore gain from the issue.

    Until there's a major review and enforced long term follow up of patients (costing money) then nothing will change and they'll keep inflicting pain on unsuspecting patients who naively believe and trust Dr's.

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  • Posted

    Before I had pvp I was an organ donor and blood donor.

    After what can only be described as a farce where I did not receive my appointment (who with this condition would not turn up or call?) I was offered more surgery to cut more away.

    i only signed up to some pipes being cut, not something that meant it was irreversible. (I obviously don’t want more children)

    i opted for a private reversal, that way I could explore the other options if that did not work. I am lucky I I could afford it and am now pain free, but it took some time.

    Needless to say when the blood team rang up asking me to donate again they got a mouthful. 

    I am am no longer on any donation list and my children have been given strict instructions that my organs cannot be used (unbeknown to them my will has a clause that rights them out if they disobey)

    I will never ever trust a doctor again. I visit only when I absolutely have to and a hope I get to my parents age without the need for the services of a surgeon.

    Ps .. I was married to a doctor and heard too many stories where things had gone wrong. 

    If it is not in the notes, then it did not happen as far as the nhs and law are concerned. Make sure you document everything, and if you disagree make sure you put your complain issue in writing and keep a copy of everything in an organised state.

     

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    • Posted

      Hiya in the notes but can't sue them there to big and have told lies about the numbers I just want to get ppl the right help and Ur lucky IV heard nearby story's and not just UK but usa China and others yea NHS bad but some of the others worse one lad injects Botox into his bits to stop pain

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  • Posted

    6 years here with PVPS.

    Tried all sorts, surgery, botox injections, drugs.

    Im also on testosterone replacement due to the damage.

    Given up finding pain relief. There is no cure for the pain. Started splitting my Testosterone gel dose to twice a day to possibly reduce the night pain.

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