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Old 11-06-2012, 03:04 AM   #1
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possible priapism ,total deserpate for help,please any one!!

ok hi people ,im realy struggling here, dealing with alot of pain ,
my recent research has lead me to believe i have some form of priapism,

but first my story ,its very long and spans over 2 and a half years now,
im still no better off that i was when this all began and in fact, the pain is
so much worst and sleep is now becoming a nightmare,

but before that make any sence my story,

one night over 2 and a half years ago ,i was at home just watching tv,doing nothing to exciting ,and over the space of a few hours i developed an incredable amount of pain in my groin and testicles,

rushed off to a late night doctor , she checked me out and couldnt find anything wrong,gave me some pain killers and sent me on my way,no help at all.

from there i went to my gp and had her check me out and she thought i may have an infection of some kind,and as usual with doctors here in australia proceded to hand out antibiotics for what she thought was an infection,

this went on for over 6 months , i think i went thru about 6 different types of antibiotics,cant remember all there names ,one was caphflexin, i remember that one as i was on it for a while, at the time i thought it may have been helping, but it wasnt.

from there i wnet thru a series of blood tests urine test and several ultrasounds and scans of my penis and testicles,

the scans found a small cyst on my testicle tube ,this lead the the doctor to believe this was the casue of my pain, form there i went on to have surgery to remove the cyst and tube, (later i found out that this was not needed as there a many men with cysts on there tubes and they probably dont even know about it or dont cause problems ,not only was the surgery not needed i lost a testicle in the process,)
4 hours after that surgery ,my testicles inflated to the size of a coconut ,and the pain was unbelieveable,i was taken to emergency hospital,where i ended up staying for 3 weeks in a ward, with so much pain , apparently i had internal bleeding from the surgery ,which inflated my testicles,( i thought they would explode,never knew human skin could expland that much!)

during my time in the ward, i was given alot of doses of morphen and high level pain killers ,i ended up leaving the hospital and staying at home for several weeks trying to come down off the pain killers ,that was a horrible time ,with vomiting and diarreaha etc, and still hell pain in my penis and testicles,

after the swelling slowly reduced and i was able to go back to work ,i started seeing alot of doctors and uroligists ,left my old doctor since she just kept given me antibiotics and that was a was of money and time,

got a new gp and she was very helpful , but again tryed many anitbiotics and pain killers , nothing worked ,

saw specialist after specialist, first one told me it was all in my head, second one put me on antidpressants,50mg endep,or amitriptylene which i was on for about a year and have only just stopped taken them after finding out that they were linked to possible cause of priapism, also i was not depressed just in pain!,


eventualy i got told by my doctor that she could no longer help me as i had exhausted her knowledge base ,

seen another specialist and he sugested getting a scan of my bladder to see if there was anything wrong in there.... that involved having a camera ramed down my pee hole ,
bar the complications from the surgery this was the worst most painful experience of my life, something ill never forget and would not wish on any one! they told me i would not feel a thing and used a local annistetic ,how ever because of all the drama and pain i was going thru ,i felt it , i felt it bad!,
spent another few days in hospital,more pills ususal treatment,
finaly got out and back to work and life goes on,

seen a ton more doctors and a few more specialist,still no help,
one of them put me onto a pain managment clinic,

meet with a doctor there and turns out they didnt try to figure what was going on rather they just delt with the pain and try to manage it,
started me on 300mg gabapentin one pill a day for a week,2 pills a day for a week and then up to 3 pills a day ,that went on for several months,
they actualy helped a great deal to start with ! the relief was amazing and i could actulay function like a normal person ,but as time went on they didnt work so well and the effect started to wear out,

went up to 6 x 300mg gabapentin a day, this was a fair dose but again worked realy well for several months , at the same time i was taking 50mg of endep which i cut down to 25mg a night, and last night i stoped taken it altogether, not sure what after effects thats going to give me ,but id rather be off it ,so see what happens there,

but over the last few weeks ive been waking up alot at night ,actualy i havnt slept well for the last 3 years ,and was going to look into that at the time of going to the first doctor i saw but becasue the pain in my groin and testicles was that bad i needed to get that sorted first,and then look in to the sleeping problems,

its only now that the pain has increased ,and im waking up with erections that could smash a hole thru a concrete wall, and alot of pain ,that im realising that its probably been the problem the hole time! ,

its getting real bad now tho ,that is why im posting this up,
ive read alot of forums and postings about people with the same
problems ,they to have been to a number of doctors etc with no out come,


i wake up at least 3 or for times a night now ,everytime i awaken , i have a very strong erection , and its very sore,
it usualy goes down with in a few minutes, but the pain remains,
infact i recall telling one of my doctors about a year ago that the skin around the head of my penis has been pulling back and it was all white and raw,
but she told me it looked normal, but i know its been changing and it must be from the pressure of being erect all dam night that is pulling on the skin a terrible amount, also a few vains have poped up where they never used to be before , ,almost like when you lift weights and you get the vains poping up from the strain ,like that but only permanant ,

this is how bad its getting , when i start to drift off to sleep ,with in 2-5 mintues of closing my eyes i can feel the erection growing ,its like automatic ,as soon as i lay down ,close my eyes i start getting an erection ,and not a normal erection , my penis gets huge, way bigger than its ever been before,
i sleep like this till i wake up from the pain ,

ive read alot about the differrent types of priapism, and i now believe
after 2 and a half years that this is what i have, a rare form maybe,
but its deffinatley getting worst and i realy need some one ,any one to help!@!@!@!@@!!@!@!@!@!@

ive seen a total of 13 doctors, 4 uroligists, 2 hospitals, one surgery,
ive had rake and healings done ,ive tryed everything ,

half the problem is the system ,here in australia where i live, the doctors are hopeless, they take your symptoms ,look up online the cures and then hand out anitbiotics ,
thats just how they work , and they also dont realy want to help,more concerned about getting the next patient in and making more money,

where in my case i have a serious problem and i cant get any one to listen to me!!!!! if they would just listen that would be half the battle,i spent probably a year and a half been handed out all sorts of antibiotics and pills for this and pills for that ,one doctor even gave me pills for sexualy transmited deases ,
which i also got tested for and clear those as well,

so this is where i am at right now as of the 6th of the 11 ,2012
ive had all the blood tests,urine tests,ultra sounds,std tests,
all come back clear ,im taking 400mg gabapentin 3 times aday,
but thats not enough to hold the pain back, i realy need to be back on a
higher dose, but thats not the answer the gaba is just covering up a serious condition ,and i need to get it sorted asap!!!!
its getting to the point where the erections are wanting to happen during the day, and they are not sexualy aroused erections either , i know the pain now that comes along with these extreme erections ,its realy starting to scare the crap out of me along with dealing with the pain its just getting too much!!

ive done that many google searches on the subject and from what i can gather , i have a form of priapism , i desperately need to speak to some one who is a specialist in this area!!! is there any one out there,any one reading this who could put me onto some one that actualy knows and has experience in these matters???????? im so tired of dealing with the western health way of doing things, the system is terrible !!!

Can any one help ???????

im willing to ring doctors or specialist who actualy know what they are talking about ,even if they are on the other side of the planet ,

i will fly to the other side of the planet if i can get some real help,
im just not getting any here thru the australian health system ,

please, i appeal to anyone who has also had anything like what im going thru ,please contact me ,leave a comment ,tell me your experience ,possibley offer help? any one im getting near my breaking point

 
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Old 11-06-2012, 03:28 AM   #2
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Re: possible priapism ,total deserpate for help,please any one!!

It does indeed sound like a type of priapism. I would call the manufacturers of the drugs that are used to treat erectile dysfunction, like Viagra, Cialis. Those drugs sometimes cause priapism, and the manufacturers have a protocol for treating it when people come to the ER with painful erections. They can possibly provide you with their protocol, and may have a list of Drs who specialize in erectile disorders. The problem may be one of vascular instability, where the arteries dilate to let blood blood into the penis, but the veins don't relax to let blood out, causing the pressure and pain to build up. Since this is happening frequently, you may need to be a maintenance dose of a medicine to stabilize the smooth muscle activity in the blood vessels. You can get the 800 number and manufacturer names online or from your pharmacy.

 
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Old 11-06-2012, 03:35 AM   #3
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Re: possible priapism ,total deserpate for help,please any one!!

Then what to do in this situation!!

 
Old 11-06-2012, 01:19 PM   #4
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Re: possible priapism ,total deserpate for help,please any one!!

Wow, that is a long story to go with a long list of "terrible". I don't fit your cause of pain, but I do fit with a long period of pain.

I have gone for decades of Thoracic and lumbar pain and similar to you all of a sudden I get a new pain. I suddenly could not sit down for more than a few minutes. I have gone through MRI's xrays poking and proding without diagnosis. It appears "like" Ischial bursitis or something like it.

Anyhow to get to the point about the pain. I am on 9x10mgs of methadone per day and now with the new pain I have added gabapentin 300mgs 4 times a day and ready for an increase. This combo is giving me good sleep and the ability to go through the day sort of OK.

God bless you and hope you give the methadone a try. It suffers from a bad rep and yet it gives pain relief without a high.

mikeh66

 
Old 11-07-2012, 05:23 PM   #5
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Re: possible priapism ,total deserpate for help,please any one!!

Maybe this is a silly idea especially because your problem sounds vascular, but a chiropractor or an osteopathic doctor might tell you if your posture or something could be causing problems with nerves. Chiropractic or osteopathic adjustment might help. (...just to guess--since you've tried most conventional options)

Last edited by mc7; 11-07-2012 at 05:25 PM.

 
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