Suffered too much, Lost everything

[russ1116]

What if?
You have suffered too long and lost everything due to your UCPPS?
You have seen dozens of Dr's and pain is subjective with nothing to prove your case.
Every Dr you see, only wants to do/perform things that brings them Monetary value, (their specialty).
Every Dr wants 12 pages of info from you filled out and gives you about 10 minutes tops and tells you what he thinks.
What if your just tired of all the fraud, the BS, the Greed... ?
Are you allowed to just give up? Is it wrong?
I spent 3 days of food money just to be on this forum :/...
If there is a God, Why does he make us suffer?
Our condition, is not profitable, and basically not covered under any insurance (for real treatment), so its like we are treated as if we are just mental pill seeking quacks....
And trust me, all the drugs they "try" you on, screws your brain up BAD... esp anti seizure meds... Those meds can make you homicidal., but that is on the warning label.. that's why they rx them to kids and schools get shot up (just a guess)...
My worst withdraws have been from SSRI's and anti seizure meds... WAY worse then opioids.....

You get to a point where you give up, you run out of power to fight... no one (mainstream medicine) wants to help you, again your not profitable.
Yes, they love to treat you "mentally" that is VERY profitable, esp if you can get committed...

Everything revolves around Money..
I'm not suicidal, But I have been in the past...
So this post is to help others that may feel like this as well.
What do we do, when where at the end of the line?
Is there an easy way to "check out"?

[webslave]

Why don't you start by listing all the treatments you have tried, and whether any of them were successful or partially successful. And please fill out your signature.

[russ1116]

Started with just perineum burning pain, and family internist of course instantly went with prostatitis and we did antibiotics.. seemed to come and go, never any "prostate" issues ever, no size issues, no high PSA, no irregular urine or blood tests. SO we lived with it for a couple 3 years maybe... Then I got a good "driving" job and it started to go down hill fast... weird thing was only left side, like clearly left side, no question about it.. something would spasm down there.. At 1st it was tolerable and I just tried to ignore it, then it got so bad It was unsafe to drive an I had to pull over and wait it out, I had Valium and Tramadol which, I don't think did much, and it just took time.. sometimes 20-30 minute, others over an hour... Sometime curled up on a picnic table in a rest area and people wondering if I'm a crazy hobo lol... The more I "focused" on it, the more it spasmed and pulled. And its rather difficult to not focus on extreme groin pain lol. It almost felt like it wanted (my body) to pull my penis in more then it was mechanically possible? This was all fine and dandy and GP put me on Lortabs (cetaminophen and hydrocodone) for the pain as needed. So then maybe 6 months of this and we went to the Next level... This level was the same but even stronger pulling/spasm, again all left side.. But it felt as if more left side muscles where joining the party now as the spasm and pulling power were much much stronger now. Like unable to walk type spasm, fetal position, or on knees bent over a bed would be the best positions to not cause more pain. If I caught it early enough with pain pills it would go away in about an hour, and after I was totally fine and could do anything I wanted... I finally noticed a "signal" that happened ever time before an event was triggered. This was my scrotum sack would start going nuts, like visually you could see it churning and going crazy, like it was kneading bread lol... Every time this happened, then a major spasm would come after...

Now this goes on for a few months, and we go to a new level again... Everything is the same, but again much stronger, more organized, maybe more muscles, always left side.. But now, shit started to literally rip apart.. Yes like tissue or muscle ripping off the bone, or who knows, this pain is the most pain I have ever felt in my life and required a 911 call, and if I was not basically frozen in a fetal position, I would likely try and kill myself.. The pain and memory of this pain to this day gives me PTSD just scared shit less of it... 911 to the ER, they test me for drugs and shoot me up with morphine and muscles release.. again all left side. this is when we start doing scans CT scans and a lot of them. I then saw the Urologist which led to options, as well as a referral to a Neurologist.. This went on for about a month and I was in the ER about 2x a week with the above issue over and over again.. At that point the ER was getting skeptical of me as being a drug seeker, as nothing ever was seen wrong. They literally told me I had to STOP coming to the ER, and my Dr must manage my pain, NOT them....

So this is when we start doing MRI's, Xrays, EGG nerve tests, all tests come back as normal. One time an MRI showed some inflammation at the right hip, then one at the left hip.. they say small silver sliver at the Trocantor bursa.. Then saw a Neuro surgeon to talk about PNE, he advised against as he stated its a guessing game and you may end up worse.. Urologist had opinions, they are surgeons and want to do spermatic cord de-nervation, they like doing those... Basically every MD had there own "opinion" as basically to what they liked to perform and what they did...

No one had any real answers or Diagnoses except the standard non bacterial chronic prostatitis.

I am now on straight oxycodone as that is the only drug that will release the muscles....

Also in the mix of all this I found out real quick that my penis was not working right now... If I tried to masturbate, my erection would last about 30-60 seconds until it initiated a spasm and the all hell would break lose and all I can say is, its like a tug of war.. Like the penis is stimulated but like there was a cord inside of it pulling it back in (and hard), and I had to immediately stop, or my penis felt it would be ripped apart..

I later found a trick which helped (and I feel it maybe a clue), but when my nuts go crazy, meaning a spasm event was about to happen, If I took an 3" ACE bandage and wrapped my Left upper thigh pretty tight with it, then it kind of held it together and it would "rip and tear" much much less... It would still get super super tight, and painful, but if I'm strapped and take pain pills it would not rip apart... But it was like swelling, like my thigh wanted to just bust the ace bandage apart, but it was holding it... I know that sounds weird, and maybe its hard to explain...

But yea, Ace bandages everywhere I go, and Oxy, just in case... Now the left perineum pain is mostly constant, its a burn.. I cannot sit, not for long... in an acute event I cannot even lie down, I must be wrapped and just "hunch back" limp around the house till it releases...

The issue has completely destroyed my life and I am completely disabled by it now.. However with opioids I can function at a half ass pace and do "some" stuff... I cannot do anything I enjoyed doing in the past which was riding bikes, snowboarding, long boarding, etc...

Carbamazipine does kind of work, BUT it leaves me completely bed ridden and makes my extremely suicidal and homicidal, I literally turn into the devil on these non-opioid options... And I have tried them all... But that was the only drug that would actually block the pain, but again I had to be a vegetable and was in a super dark place, mindset...

So I'm more inclined to diagnose and fix myself as all other Dr's have failed, or want to do surgeries that I'm not up for (yet).

The UCPPS, seems to fit me the best and my symptoms, even though mine are a bit weird, or severe compared to others..

And its VERY difficult as its all "hear-say", my word against what tests and scans show...

My Blood-work did have extremely high shingles/herpes titer... I think I've had every test we know.. I did react to one or 2 Lyme disease test things.

I mean its literally exhausting... because no one knows, everyone has ideas, but some thing your just a nutcase..

That's just all I can say right now, its been about 5 years now, with he last 2 being complete hell.

I'm a 45 yr male, and about all I want to disclose personally at the moment.

I have had several groin pulls, sports related... But so much time has past there is no way to isolate an event now.. I was a daily masturbate back then.

It's rather difficult or impossible now.

I miss my sports badly, I traveled the World snowboarding, I miss that super bad..

There is just so much Medical fraud I am aware of now, or in the USA, that it literally scares the shit out me.. It's hard to trust anyone now... Every specialist wants to do "there thing" on you.... Otherwise I'm not profitable and you get 10 minutes, and nothing..

The stigma on drugs is bad, its real... I personally believe its swung WAY to far... And I think these high cost non opioid pills are MUCH more dangerous then the super cheap $15 / mth pills I take now, and they work great and I can be out of bed and do stuff... Without being an A-hole, or a danger to myself or others.

I think there is fraud in drugs, they push the most expense ones, its quite obvious.....

Its all about money, which they got all of mine now..

Really tough to keep hope, but I am here, I am constantly searching for clues... Or anything that I can "Guide my Dr's", as sad as that sounds, but if you have a rare or difficult issue, YOU have to diagnose it... Dr's do NOT get paid to research and diagnose you, And they Will NOT do it either...

Mentally and physically I am stable, I am able to get narcotics... But I need to figure this out, It cannot go like this forever...

I do have kids.... I'm not alone, BUT, this illness has destroyed almost all of my relationships and friendships, and even "some" family that just don't believe me....

Its just sad, really sad..... I'm a very empathetic person to..

[webslave]

Very interesting case, certainly not the usual UCPPS patient. Disabling and paroxysmal pain is not at all typical.

There are several things you can try. Let's go through it step by step.

Firstly, does heat help at all, during an attack? The symptoms sound very much like spasm, even like proctalgia fugax. Try a heating pad on the area next time, or a hot bath.

Opioids unfortunately end up making things worse in the long run because of their effect on mast cells. So getting off them is a good idea if you can manage it.

Also, your snowboarding and bike riding past may have caused an injury that could be behind this. Just something to keep in mind.

More suggestions to follow, based on your responses to this.

[russ1116]

No real pain in the anus at all, none while pooping, nothing relieved by pooping. No urinary pain, no penile pain.. Or external penile pain... Whatever is "internal" and the left side of the penis is always firm and painful.. And we did to a penile Doppler to rule out high flow priapism (due to injury), the ultrasound came back perfect.

Water, in itself can set off a spasm... Esp cold water IE: swimming pool, I have had to RUN out of a swimming pool and dry/wrap and prepare, like quick...

I'm a bit scared of water in my condition, however showers do not seem to create an issue, and don't seem to help an issue either..

Without pain control, I'm dead... simple as that... So I could care less of the "risks" of opioids...

It is very well documented that when the negative out way the positives that opioids are ok long term. Again, I don't believe the other options are any better anyways.. It's a money game... Tell me a "cheap" pain control and I will do it.... Tell me a $10/pill then I'm going to question the motives.

Nerve blocks are not good long term as well, they are diagnostic only... they are HUGE profit makers at clinics...

Again, I don't trust anyone as money creates HUGE bias in the USA.

Antihistamines cause mast cell issues but you say those are ok in a document I saw of yours? So why are some good and some bad?

Your mind MUST be good to heal yourself, if your a useless vegetable, well your going to die.

And there is a lot of real data that shows that "true chronic pain" patients Rarely get addicted to narcotics...

Don't let the USA propaganda fool you....

I cannot say heat helps or not, I have tried it, but at that point I've taken pills so, it gets better anyway as a result of that... I will do ANYTHING to prevent ripping of whatever is ripping apart from my left perineum...

Pain is left inner penis/perineum and left inner thigh, and scrotum.. feels like a hundred tiny razor blades, all on the left side..

No issues peeing or pooping, no pain with either ever.

This issue did start after I had a colonoscopy done.. but everyone denies any involvement.

And I did have a left kidney stone, 3mm left side, out of the blue. once in my life which also happened after the colonoscopy. And I never really felt or saw the stone come out.. again no Dr seems concerned as it was likely just dissolved in the bladder.. nothing shows up on scans either.. the stone was scannable when it happened 4-5 years ago.

Cold definitely makes the problem worse, and heat likely neutral...

[webslave]

Severe spasm does feel like something is 'ripping', and heat is a known relaxer of spasm. That's why I asked you about that. I suggest you try it the next time you have a spasm. The sudden onset and release of your pain episodes point to spasm, so that's my assumption at this stage. If not spasm, then the only other similar thing I can think of is trigeminal neuralgia (look it up and read about the symptoms), and it's possible that something similar is happening to a pelvic nerve branch in your case.

You are defensive about your opioid use. Defensiveness is often linked to addiction. If you are addicted to them, that's a whole separate issue and my experience of that is that men with this addiction cannot escape their pain syndrome. Not sure about you, not saying you are an addict for sure, but just raising this flag.

Can't see how colonoscopy can be linked.

Please read this too, just in case it may apply to you
https://ucpps.men/viewtopic.php?f=53&t=9331

[russ1116]

I am no more addicted to opioids then anyone is of SSRI's.... I'm defensive because they are extremely hard to get, legally.. and many have severe negative opinions on them, and would rather see suffering then people use them... Until you have real pain that requires them, you cannot understand.. And no, no one can compare pain, as your 10 is only the most pain you have ever felt... One persons 10 will be much much different then a War Vet that had his leg blown off with his 10.... I don't even like the pain scale 1-10 as its completely useless as a basis of measuring pain..

No ones 10 is the same, and my 10 maybe your 100 in retrospect, you just do not know....

I play defense as I see fraud, I see suffering, I see suicide, and I see murder.... All from misinformation... and Greed. Take my pain away and i'd quit cold turkey... yes I would be a dick, but I'd do it..... lol if the pain was gone... I have never increased my dose sense I started them 16 months ago... in fact I've lowered it.. Stress is the biggest trigger for me, and all this did start when my business failed due to situations beyond my control.. And no I did not take drugs to deal with it, I do not even drink or smoke lol... I went to medical school and sat a LOT, and I dropped out, and then Drove A LOT, and then quit. now I can't do shitz on anyone terms that is... Self employment is all I can do.. I can only do work, when my body allows it.. And with opioids... more work more drugs, more work, more purpose and more self worth = better mental, more work better sleep which is better healing thus less drugs.. It's a cycle.. If no work, no drugs, feel like shit, bedridden, depressed, then pain goes through the roof and I spasm every day, then go back to more drugs... My best health is prevent spasms, do some work, have some purpose, have some sleep = stable drug intake and not yo yo.... I'm not going to be a vegetable welfare case, I'd rather be dead then.. I need to work with my hands, and be out of bed... You have no idea how important that is for someone's health!

Drugs are not bad, people and the way they USE them are bad, just like drinking.... You think if I was addicted in the USA I could legally have an RX for oxy every month? for real????

[webslave]

How much opioid are you taking daily? Drug and dose.

[russ1116]

Oxy 10mg TID

I do appreciate your insight and help, know that.... I can be an A--hole, but I've been through a lot, and I have been hurt, and judged by many..

My actual daily use will be 1-3 pills according to pain... If I have a spasm and don't catch it, get ahead of it, then I may end up at 3 pills to get rid of it (over a period of 1-2 hrs) which can put a day at 5-6 pills but that is getting more rare, as we have to stay ahead of it and prevent... the more I prevent a complete spasm, the harder it "appears" my body has to get into one now... Like its "trying" to heal, whatever it is....

Basically I need to be ER proof, as they do not like people of our kind... meaning patients with "hear-say" pain, shoot one of my hospitals is saying they are going completely non-opioid soon... seriously, that's how far this thing has swung he other way!

We are not depressed kids taking street drugs laced in fentanyl (sp)... the street drugs, the non Dr treated people, those where the problems... not people just trying to stay alive... The US focus's on a tiny tiny issue, and blows the whole dang thing up... Dam we are good at that!

But then we can have a life saving drug (ivermectin) save 100's of thousands of lives, even out of the ICU for 20 cents a dose!, but FOR MONEY, we let them all die, and suppress the real information about it and Covid19... I mean you "think" our nation (USA) does not suppress info like N Korea does, but it DOES..... Actually makes me sad as hell, they all have to suffer over our addictive GREED for Money.... Peoples grandparents, and parents, all for nothing... Research it, get past the BS and find the truth, its sad as hell man...

Or "addiction" problem, is Money.. That's a much Larger issue then stupid opioids....

I still may try and get into the Wise program, unless something changes... Or he says he is doing a at home course soon too, so idk..

TY

[webslave]

That does not seem to be an excessive dose.

You have a lot of rage and anger about this issue, and it's going to hurt you and prevent you from getting better. Let it go. Doctors cannot help you, they also could not help me nor many of the members of this forum. Ranting about money and greed and covid19 treatments etc is pointless. Please stay on topic, which is your symptoms, what you have tried, what has helped and what has not helped.

There is an alternative pain medication called PEA that you can get from Walmart. Please try it and see if you can phase out the opioids, which as I said can provoke inflammation and actually make things worse.

And again, report back on heat treatment.

[russ1116]

Your point is admitted and agreed, I do need counseling and will get that asap... I do dwell on bad things that I cannot change, but it just gets me.. I feel people, I am very aware.. Caring too much is a double edged sword indeed... I'm a giver..... It's who I am..
Thanks about PEA, will do that! looks good.

[russ1116]

Question?
Medical grade CBD, same or better than PEA? Have not tried either but curious your thoughts if I was able to get Medical CBD oil

[webslave]

Try them both, but only one at a time, not together, and with a few weeks in between.

By the way have you tried neurontin?

[russ1116]

Gotcha, and yes on gaba, Lyrica as well.

[webslave]

The other things to try are Flexeril (in case skeletal muscle is involved) or a smooth muscle relaxant (in case smooth muscle is involved).

Oh, and when the next bout hits, try diaphragmatic breathing as described here:
https://ucpps.men/viewtopic.php?f=53&t=9338