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UK help - where/what treatment for pvps have you had


#21

Yes it is a diagnostic tool… he was talking about work on nerves - denervation or splitting nerves if i dont recover in 2 mths and the anaesthetic injection works… i don’t really want to have any more surgery for at least 10 mths, got to give time to heal


#22

sounds like a goid plan ro me mate .

fingers crossed your pain free soon.

who is the doc? sounds like a rare expert in th UK.


#23

Hi Lee. Happy New year. How are things going for yourself? I’ve been referred to a urologist. I’m seriously considering denervation now. time to roll the dice for me. All the best.


#24

Hi there, things are pretty steady for me… still going well on the Lyrica pain generally 1-2… sometimes not at all. Able to do eurodisney and go on rides at new year, been for a few runs and played football with my daughter on sunday. Coming to conclusion that it will likely never disappear entirely but if i can manage around then maybe thats the best bet. I have around £7000 so far and that is all debt so it will be NHS for any future referrals now. Good luck with denervation, i think mine is nerve related.


#25

Great news. Cheers mate. I’ve never tried lyrica, never really tried many meds so that sounds like an option for me. my urogist meeting 29th Jan will be interesting. I’m guessing nhs won’t let me have denervation on them, but have found a place in London that do it. can’t wait to find out the ££ :persevere:. All the best. Rob.


#26

@ljtomono1 seen a urologist. he is looking at epididectomy on the left side. hoping that by having the tube cut out including where the bad scar tissue is on the tube will relive pain. I suspect trapped nerve by the scar tissue. I hope this works. I will keep you all informed. all the best guys.


#27

Hi @Pvps75 what made you look further did the effects of Cymbalta wear off? Or just wanted to be off drugs? What are your symptoms again? Is the uro on the NHS and what are the reasons for doing Epididectomy? Why not just cut a bit more of the tubing out and reseal??


#28

HI

UK based.

Have tried and exhausted all meds apart from tapentadol which NHS refuses to prescribe.

Have tried 2 nerve blocks one of which was pulsed - one worked but due to short life of relief, 10 days, NHS refused to do it again. The other, pulsed, caused massive uplift in pain.

Epidydectomy in Sept 16 and life went downhill rapidly after that with increased general tenderness, increased pain and much shorter periods between cycles of pain.

Oct 17 consultant refused to increase pain relief as as with morphine, used previously, they felt the dose would simply spiral again. Morphine ended when it was 240mg plus Oramorph as PRN

At same appointment above NHS admitted there were no treatment options left, viable or otherwise. Immediately asked for radical orchiectomy (again) and was told too drastic. He had to concede given he had just said no treatment left that whilst drastic it was an option “to be explored”…but to get to the urology consultant to discuss I had to agree to a ganglion of impar nerve block. He could not give any outcome stats whatsoever given it is usually used for women with hysterectomy pain and he’d never heard of it tried for PVP but wanted to rule out everything before allowing surgeons to discuss removal.

Whilst he couldn’t give anyone outcome stats, risks he could reel off aplenty - any of the risks realised mean job loss and one of the risks negates any option of orchiectomy

That procedure is on 20th March - do not want it but am boxed into corner with no options left if I don’t proceed with it.

5.5yrs of hell either going to ease, remain the same or get a damn sight worse in 6 days


#29

cymbalta keeping me positive. pain flakes up. I’ve noticed from activity stress and alcohol. I’m going to ask if cut tubing out and reveal. my hope is by the epididectomy my body realises no need to send signals down and shuts them off and the trapped nerve is fully cut out. I will ask the uro (Burton hospital) tomorrow about cut out tube with reveal. sounds like a good idea to me. I’ve not heard of anyone doing that but idk. :persevere:


#30

sorry to hear of your journey so far. really hope it works out for you. it’s about time they sorted out this problem for the many effected. all the best.


#31

Sadly when so many Dr’s refuse to acknowledge PVP, when Dr’s minimise risk & where Dept of Health is happy to rely on studies from those with vested and declared interests then UK is decades off sorting problem out for many

Even with vast proof of pain and causal the medical community in UK argued against any form of control of mesh implants which caused hell on earth for 1000’s of women - with a far lower data set PVP isn’t going to pop up on radar of DoH, Govt & GMC for many years yet.

This is why forums like this are so badly needed - much solid advice post butchery and hopefully those searching for info pre op will come across it and not proceed

Due to meds I can’t drink. I did try 1 pint of Guinness on recent trip to Dublin - it was so amazing after 5 yrs dry but within an hour it mixed up with meds and I was not great. I can’t ride my motorbike due to pain from vibrations and I can’t ride due to med effects & law, can’t have sex, flying kills, can’t enjoy a hot bath and now the idiots are telling me I have to cut back on coffee, sugar & smoking! Mindful of that old joke…if I give up these will I live longer…no but it’ll seem like it :slight_smile:

Am just glad a nurse specialist thought outside the box a little and bought me 12 months of relief, happiness and fun by suggesting methadone instead of morphine. It was literally life changing whilst it lasted and within a week of starting I’d managed a 10 mile walk instead of struggling at 2 miles over a day :slight_smile:

Once legal case is sorted and I can cut back on work hours I am determined to set up some sort of support and pressure group - would seem the only way to try and effect change. MInd you it’ll just be nice to be able to bring the blog back on line

In the mean time we plod on, enjoy the small things and enjoy coffee


#32

Sorry to hear that @Wolverine… i have had almost 2 years of this and get very low sometimes… counselling (for my blame laid on my wife) and Lyrica have helped me. I had to go private in the end spent £7k on the credit card and still not sure im any further forward!


#33

What is your legal case? I was told i had no case because even though the vasectomst dismissed PVPS… there was a small note in the documentation covering it


#34

I went through about 6 to 8 months of really blaming my wife, along with Dr. Think that was one of the worst times.

Being honest I still have an odd day or two where that process kicks in again and that’s one of the worst things about this as she’s supportive beyond belief. She never asked outright for me to have butchery, all she said was the coil was hurting and given pill, jab and other methods over years had been tried and ruled out my mind went to vasectomy. Crazy even knowing how choice was made etc and the most supportive person gets blamed.