CANT HOLD ON MUCH LONGER

[Guest]

I DON'T KNOW HOW TO PROPERLY START OR END THIS THREAD BUT I'VE HAD HPPD FOR 15 LONG PAINFUL YEARS. MANY OF WHICH I BATTLED WITH EATING RIGHT, EXERCISING AND STAYING AWAY FROM DRUGS AT ALL COSTS. I WAS ABLE TO HOLD A GREAT PAYING JOB HAVE FRIENDS AND EVEN A RELATIONSHIP WITH A WOMAN.

BUT ABOUT 6 YEARS AGO I WAS OBLITERATED BY A CONDITION CALLED PROSTATITIS OR CHRONIC PELVIC PAIN SYNDROME. WHEN I HAD INSURANCE I DID EVERY PHYSICAL THERAPY, CHIROPRACTIC MODALITY POSSIBLE, HAD TESTS, MRI EXAMS, BEEN ON A SLEW OF ANTIBIOTICS BUT NOTHING HAS WORKED.

I GOT HIT HARD WITH HPPD AND DESPITE THE ODDS I BEAT IT BUT HAVING TWO CONDITIONS WITH THE LATTER I FEEL BEING BY FAR THE WORST I DON'T KNOW HOW I CAN HANG ON ANY LONGER. MY WIFE LEFT ME AND TOOK MY CHILD, WHO I LATER LEARNED IN MILD ON THE AUTISM SPECTRUM. THAT IS ALSO MENATALLY MESSING WITH ME AS I AM PRETTY SURE THE HPPD HAS SOMETHING TO DO WITH IT.

MY LIFE SUCKS, MY ABILITY TO HANDLE LIFE IS NIL. ITS NOT FAIR WHAT HAPPENED TO ME AND I REALLY FELT I'D LAST LONG ENOUGHT UNITL A CURE FOR HPPD COULD BE FOUND AS MEDICAL SCIENCE IS MAKING LEAPS AND BOUNDS EVERYDAY BUT PERHAPS NOT FOR ME. I CAN'T TAKE THIS SHIT ANYMORE; BEING MENATALLY AND PHYSICALLY COMPROMISED IS TOO MUCH TO BEAR. I DON'T HAVE THE GUTS TO KILL MYSELF BUT I WANT TO, AS THIS PHYSICAL AND MENATAL PAIN COMPOUNDED TOGETHER IS TOO FUCKING MUCH.

IMAGINE GOING TO THE DOCTOR AND TELLING HIM/HER THAT I HAVE CONSTANT 24/7 GROIN PAIN THAT GETS WORSE AFTER EJACULATION. THEY DO A COUPLE OF TESTS, GIVE YOU A SCRIPT FOR ANTIBIOTICS AND ADIOS AMIGO! AFTER THAT DOESNT WORK THEY GIVE YOU ANOTHER SCRIPT FOR ANTIBIOTICS AND IF THAT DOESN'T WORK YOU HAVE TO LIVE WITH IT...

LIVE WITH IT!!!!

I WAS "LIVING" THE BEST I COULD WITH HPPD AND THAT SURE AS FUCK WASN'T EASY BUT BEING BLINDSIDED BY TWO UNBEARABLE CONDITIONS IS UNJUST. I USED TO BELIEVE IN GOD BUT NOW I'M CONVINCED THERE IS NO GOD. NO GOD WOULD DO THIS TO ANYONE GOOD OR BAD. THIS IS HELL AND I'M TIRED OF IT. I TRIED TO GET DISABILITY BUT I HAVE TO BE UNEMPLOYED FOR ABOUT A YEAR BEFORE I RECIEVE ASSISTANCE. HOW THE FUCK AM I SUPPOSED TO LIVE FOR A YEAR WITHOUT ANY INCOME?!?!

FUCKING AMERICA THE FDA, THE AMA, APA THE WHOLE MEDICAL PHARMA ESTABLISHMENT BULLSHIT.

[John Smith]

Im sorry man. Your kid's autism had nothing to do with HPPD. NOTHING. You pass on your pre HPPD genes, sure if he does acid hed probably get it, but autism is chromosomal. Im sorry you feel this way man. I feel you on your belief in god too, im right there with you. But do it for your kid man. Be strong for him. Maybe get a prescription for an opiate and take it from time to time, being careful about addiction. Maybe antihistamines or muscle relaxants? Go to the doctor and fucking cry in front of him if you have to and make him fucking help you. Give him the whole, you got into this to help people and now you dont give a fuck when i come in here, on my last straw. Im ready to do something drastic and youre about to send me out there back out again? I dont know man. Make him help you. Hope you feel better dude, we're here for you.

[ferret]

If you stick with it Im sure that you will get through it and feel good again one day. Suicide is permanent, it is a mistake that can't be fixed.

[Guest]

Trust me, I don't want to die.

I've put up with HPPD for 15 years 98% of the time without meds but this pain syndrome has blasted my visuals and anxiety through the roof. My wife couldn't take it after 6 years and she divorced me. Sometimes its just too much and after going from doctor to doctor and not getting the same diagnosis made my mental state worse.

Oh you have herniated discs caussing the pain.

You have grade 1-2 varicoceles

Looks to me like a hernia

epididmytis

orchitis

prostatitis

My life sucks and after waiting so long for the day HPPD could potentially be cured, now I have another issue which I think is by far much much worse to contend with. I only wish that someone could clue us in on any real potential progress on the up coming medical breakthroughs out there that can help HPPD or any other malady like mine. It's so sickeningly frustrating when you want something so bad like good health but nobody is able to help. We didn't deserve this HPPD shit plain and simple and for the medical community, at large, to ignore it, downplay it even mythisize it is wrong. Personally I feel as though is more common than originally thought but the tough and the brave are the rare ones to survive and stick it out. The rest choose to clock out I'm sure. If ever there was a reason to start a war on drugs-this is it-but the war should comprise of education, prevention and above all else RESEARCH.

I've personally have reached out to medical researchers about HPPD from prestigious universities- very few have responded. There needs to be a campaign, a massive one to get this condition on the fucking map once and for all. I know that investigations into new therapies may overlap and be applicable to this condition but this condition needs its own team of experts working 24/7 to finally get to the bottom of it. Dr. A and David are simply NOT ENOUGH!

Don't get me wrong, we'd be screwed without their help but I find that all of us here are generally good people that may have taken too much of something or were predisposed to blow a fuse due to hard drug use but we are all relatively intelligent, kind souls that got the short end of the stick and deserve better. Nobody should have to suffer a lifetime living like this. I think of the person I was, of the life I planned, the things I wanted to see, do and accomplish and I find it next to impossible living like this.

This is not just a cry for help but a call to action. Parents, syblings, friends-whomever has showed us any love should be advocating for us. HPPD is not going to go away and new casualties are coming out all the time. We need help and with all the resources presently available to the medical community it makes all the more sense but to take research to the next level.

I've been told Dr. Abraham won't be around forever.

What will we do when he's gone?

Who will we turn to?

Who will continue his work?

It's not going to take one person but a team to figure this out.

The sooner this happens, the sooner I believe we can go back to being the people we once were.

[2muchmandy]

What do u suggest we do to help raise awareness?

[Ghormeh Sabzi]

I feel your pain. I also experience chronic pelvic region pain, mainly in the buttocks. It makes it impossible to sit down for any extended period of time. In comparison to the chronic pain, HPPD is nothing. The pain bothers me far more. I haven't really been researching causes, leaving it to the docs to try and figure out, but having Googled prostatitis, it matches up somewhat. I also experience pain when peeing or ejaculating. I don't have a urine infection.

Can you describe your pelvic pain? Mine is a burning/stinging pain in the buttocks, much worsened by sitting down.

Wiki says 'The symptoms of CP/CPPS appear to result from an interplay between psychological factors and dysfunction in the immune, neurological and endocrine systems' - perhaps there is some relation to HPPD. I never had any problems beforehand.

[Guest]

Well now this really frighten the fuck out of me; a possible correlation between CPPS and HPPD?

I've been operating under the assumption that this is some type of occult infection but now that I know there's two of us...

The thing is that there are over 2million men in the USA that recieve a prostatitis diagnosis and I'm pretty sure the percentage that have HPPD is rare.

Pain while sitting increases pain to the genitals.

I used to have the most insane post ejaculatory pain that would commence 8-16 hours afterwards and last 3-4 days of unrelenting mind searing pain.

Sex with the wife was once a month, no wonder why they call it the sex destroyer. Pain would also move to my bladder area and down four inches or so on either side of my adductors where the leg meets the pelvis. Six months after it started I had the most insane burn in my asshole as though a lighter was permanently placed there flame on but miraculously it dissapeared after 4 years although not long ago I went on my last script of antibiotics and the burn came back. Lasted for weeks after the script ran out but then went away again. Never had a pain with urination but sometimes I'll get up several times but during the course of the day it's pretty normal.

I swear to god, I remeber working out like a beast, going out, holding a job, bascially living with HPPD and all things being equal doing ok but I'm barely functioning now. I crawl through the work week barely able to make it. No health insurance either....

The good news, if it truly is good, I came across an ariticle about bacteriophages able to penetrate biofilms as that seems to be theory why men suffer HPPD or not, with this condition.

http://www.ncbi.nlm.nih.gov/pubmed/22590682

I'm really hoping that this could be the key to this whole mess for you, I and anyone else who suffers from this condition for if its any of the causes you posted then I guess there's nothing to do but live with it...

[Ghormeh Sabzi]

I don't mean they go hand in hand as such, just that HPPD could have a role to play. I don't know how accurate Wiki is, but it says

Category III prostatitis may have no initial trigger other than anxiety, often with an element of OCD, panic disorder, or other anxiety-spectrum problem.[49][50][51] This is theorized to leave the pelvic area in a sensitized condition resulting in a loop of muscle tension and heightened neurological feedback (neural pain wind-up). Current protocols largely focus on stretches to release overtensed muscles in the pelvic or anal area (commonly referred to as trigger points) including digital prostate massage, physical therapy to the area, and progressive relaxation therapy to reduce causative stress.

I personally do not think I have any problems with anxiety, but many with HPPD say that they do, so maybe there is something subconcious going on, which has acted as a trigger.

I don't have any lasting pain when peeing or ejaculating, just at the time or for a couple of minutes afterwards.

Have you had any tests done on the nerves? I.e. a nerve conduction test or EMG?

I'm due to have an MRI scan on my spine and sacral in a couple of weeks. I'll also be asking for the above tests. I'll let you know how they go. As I say I already had a test for a UTI, which came back negative.

[Guest]

I had several MRI exams.

One showed herniated discs in the L4/L5-L5/S1 and an inflammed pudendal nerve.

I used to be a very physcially active person. It's what helped me deal so well with HPPD.

Now I can barely hold down a job and live independently.

Had all sorts of generic tests but nothing like a PCR/ELISA or any other specialized DNA testing for a fastidious bug.

Got this 30 days after my X wife and I had intercourse.

Despite the pain so soon after we met, we still got married six months later thinking the pain would be resolved.

It wasn't...

Six years later and a son, she left.

Don't know if it's my back, an infection, a pudendal problem from spinning classes but all I know is that I really am the most miserable I've ever been.

No pain when peeing. Feel a "nervousness" in the inner part of my legs were they join the hip (adductors?) bladder area and testicles but the pain moves. even from testicle to testicle depending on my posture it may radiate to one testicle or the other. No two doctors ever came up with the same diagnosis. That, in of itself, was drove me crazy.

Any thoughts and suggestions would be great. I'd take HPPD anytime over this mess.

[Ghormeh Sabzi]

How are you doing mate?

My doc doesn't think my pain is prostatitis. But the problem is no one has a clue! Had an MRI on my spine and lower back 4 weeks ago but still haven't got the results - not sure what's going on there. My pain is worsening daily. Gabapentin and Pregabalin provide zero relief. If I'm up and moving about there isn't much pain, so I do that as much as I can, but I can't sit down and do anything, and sleeping is a pain in the arse

[mgrade]

My friend had prostatitis and hydrocele; I have a varicocele and HPPD and i have had urethritis and Epididymitis (and had surgery for it as a kid); my father has slipped discs

So I feel your pain man, literally.

Now with your prostatitis, stop having sex for a bit, do the saw palmetto thing, cranberry juice thing. Once you get over the prostate thing, things will look much better. Just concentrate on getting that better, and guaranteed you will feel a lot better. My friend had this and was f'k'n nutty for like 2-3 months. Stop having sex for a bit and do those other things. Also get on some SSRI or something. But make sure you find a good neuropsychiatrist/psychopharmacologist first.

[VisualDude]

I feel your pain. I also experience chronic pelvic region pain, mainly in the buttocks. It makes it impossible to sit down for any extended period of time. In comparison to the chronic pain, HPPD is nothing. The pain bothers me far more. I haven't really been researching causes, leaving it to the docs to try and figure out, but having Googled prostatitis, it matches up somewhat. I also experience pain when peeing or ejaculating. I don't have a urine infection.

Can you describe your pelvic pain? Mine is a burning/stinging pain in the buttocks, much worsened by sitting down.

Wiki says 'The symptoms of CP/CPPS appear to result from an interplay between psychological factors and dysfunction in the immune, neurological and endocrine systems' - perhaps there is some relation to HPPD. I never had any problems beforehand.

So this pain started around the same time as HPPD?

[Ghormeh Sabzi]

Yes. It started around the same time I had a massive increase in visuals, as well as a whole range of other things happen. Started off more as uncomfortable and annoying rather than painful - but has progressed and worsened. As this happened my really bad headaches that started at the same time slowly subsided and are now completely gone - seems I have swapped one pain for another!

[EmIly]

I would go see a pain doctor for sure there are all kinds of injections they can give to help depending o. Weather it is nerve or disc or joint related. Also if you have no ins. If you talk to your doc. And tell him it's out of pocket most good doctors will give you a big discount. Remember whatever the cost ins. Will only reinburs them so much. Some doc.s will even barder if you have a skill like wood working or construction it may take getting to k ow them to put this into play. Also a good pain doctor knows all a out all the pain meds out there and can find one that will suit you he'll keep trying different ones.

Sucide is yes a way out but not one for you your sons going to need you so now you live for him. Use every resource out there every med out there keep applying for disability you don't stop trying. Hppd sucks and adding anything on top of that is even worse I know but you chose to have a son and he deserves a dad and that's number one! Do what you have to but get better for him.

[gill]

Hope you feel better eventually; I still have my crappy days too....

[Guest]

I also have bilateral. Aricoceles but the docs say that it shouldn't cause pain..

[Guest]

Varicoceles

[VisualDude]

I also have bilateral. Aricoceles but the docs say that it shouldn't cause pain..

"One of the signs of varicoceles is an aching pain" - - - http://www.varicoceles.com/varicocele-symptoms.htm

[mgrade]

Hope-----i done got a varicocele for 15 years ...........wear briefs, no boxers. Do what it takes to increase circulation. There is also a pair of doctors in Israel who have invented a technique for fixing these problems and are world experts and hypothetically you could go there and have this operation done to alleviate the problem.

update---i think it's Gat-Goran technique----look up these 2 docs

[Ghormeh Sabzi]

My MRI scans of spine, lowe back and pelvis came back without significant abnormailty. A couple of disc bulges from L3/4 to L5/S1, but they are not pressing on any nerves, so are not the cause of the pain.

The GP thinks it's related to everything else (HPPD and other strange non visual symptoms I have), whilst the neuro thinks it's mechanical in nature.

[VisualDude]

A couple of disc bulges from L3/4 to L5/S1, but they are not pressing on any nerves

How did you get these?

[Ghormeh Sabzi]

No idea, but apparently up to 80% of the population will show disc bulges on an MRI so it's no big deal, they tell me...

[EmIly]

Hey hope1 have you looked at pelvic wall syndrome? Might be worth a look there are exercises you can do to strengthen it. Maybe when you ejaculate your causing a spasm. Are you doing any better?