I feel like I and the medical world a... - Pelvic Pain Suppo...

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I feel like I and the medical world are gambling in a a game of poker and we both were dealt bad hands. :-(

Manwpelvicpain
Manwpelvicpain
32 Replies

I get so frustrated with pelvic pain. I always think, when I'm having a good pain day, I might actually be healing and getting better. Then the next day I'm back in worse pain again. This ugly condition plays with your mind like a cat slowly killing a cricket by ripping one leg off at a time. My wife and son leaving me during this difficult time in my life is hard enough to deal with right now; but the fact that the pain has come back after I thought I had beaten it gives me false hope and expectations. I don't want to get an exploratory surgeries done after reading most of these articles. It seems like most people were better of before it was done. My pain is functional pain right now, so I don't want to make it worse. I'm defecating in the morning and not urinating as often as before. I'm walking and stretching quite a bit. I go see my urologist again next week and I'm afraid of what he might suggest like a laparascopy. I just want another referral to a better pelvic physiotherapist that knows how to handle men wirh pelvic floor pain.

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Hidden
Hidden

I feel for you, that's exactly how I feel +  I saw many doctors who believes this problem is in the head which makes you more confused than you already been, this is a war and we must fight 

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Manwpelvicpain
Manwpelvicpain
in reply to Hidden

It is definitely a war. We are up against a huge teeth bearing money hungry machine that tries to consume all of us patients in it's path. There is no patient care for chronic conditions. We are treated like outcasts and misfits who want nothing more than a drug fix. All of us,from what I can tell, hate being on pain med.It is something we are forced to do to just have a moment of peace. We need the medical community and the world to give a @$! ß and sit up and take notice of this life destroying condition. 

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Jei-Carter

yea i hate the meds... the only meds that help any are the same ones that cause extra constipation that reduce the space available for the pudendal entrapment...

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Manwpelvicpain

Pelvic pain creates this whole circle of pain. You get constipation with it and that increases pain. You take pain relief meds and you get constipated.

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Jei-Carter

yup one vicious circle... One insane diet... the terror diet... available wherever the war against chronic pain sufferers is being waged now

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Pafen

Yeah I would agree on that one. I found when taking lyrica it would make me more constipated so the pain relieving effects were kind of neutralised. So I don't take any lyrica anymore.

Keeping bowel motions very soft is the key. I find if I can consistently keep things soft and also make sure my bowel empties completely my symptoms improve.

I've been using the therawand and it seems my pain is coming from a trigger point which is quite deep back towards my spine. I think everything then is spasming downwards from this trigger point.

I've had about 3 colonoscopies, multiple MRIs, ultrasounds etc and everything looks fairly normal.

Also put turmeric on your food as it's an anti inflammatory.

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Manwpelvicpain

I'll give tumeric a try again. I used it before but I was in so much pain, that I don't if I would have noticed a difference by taking it.

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Jei-Carter

It is a freakin curse...  Family just can not understand how being trapped in a self torturing body affects our ability to interact like people with other diseases are able to... I lost all my friends and family too just cause it is impossible to keep up with other people's worldly concerns... We are in a constant internal war... Just so happened the first 4 years of this for me was the same time all 4 grandparents passed year after year....  Every medical thing we have to deal with is like some Las Vegas poker bet... I knew before getting my 3 surgeries that each one might have a 15% chance to help at all... Still had to do them.... When your family tries to do normal human things like having a meal with them and they cant understand that a meal to us is just another torture device... I am starving myself right now cause no medicine to offset the pain that comes with it... Heard from my sister after 3 years and she said can i send you some food? lol,, Well actually food is not something i have the luxury to intake anymore... And saying that they know what suffering from pain is like when they can not possible comprehend the threshold of sadistic crafted pain that is a fact of our  ""Lives""... This is not life by any stretch of the imagination...

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costagran

hi,

i am intrigued that you had 3 surgeries.

where they explorotory laprascopes.

by which department.

and what was the outcome.

do you have a diagnosis.

i dont know if you are male or female.

if you are male and seen the urologist and gastric doc have they found the problem.

women have so much more going on in the pelvic area.

if you,ve had an all clear colonoscope, then consider something is pressing on the outside of your gut causing your digestive issues.

after over 4 years of pain and hours of researching, i have cone to the conclusion that something in me has moved(south).

it can be caused by straining on the toilet.

a bit of your small intestine for instance got itself jammed in somewhere.

these all singing and dancing machines supposed to be so clever but if you get layed flat on your back, is the problem gonna show up.

i'm sorry,i'm a cynic.

no faith in any of them.

just grasping at straws like the rest of us.

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Jei-Carter

thanks for the reply... the way you wrote your post reminds me of all the poetry i had to take when i was a English major in college... Not the kind of poetry i expected to learn for sure lol ha....                                         

      I am a guy that when all this started just had one semester left before i was to graduate.  I was about 4 months away from taking the official Japanese proficiency test that they give in Atlanta and other places in the US... It is a cool language cause it is actually possible to teach it to yourself if u have the drive... Were no classes here in Texas so i had to teach it to myself...

    To your points.. Yes i have been diagnosed.  My three Surgeries were first my $25000 dollar surgery that i had with Filler in California... Second was with Hibner in Arizona... And the third with Nundlall in France... 

   Yes women get this much more often given all the crazy stuff that comes along with babies and everything... No wonder when u think of passing a bowling ball through the pelvis...

   My pudendal entrapment was caused by a situation that i have NEVER seen repeated in the decade i have been on these boards... There might be many more but learning how this happened was hard... My entrapment was caused by a very indirect route...            

   The last vertebra in our bodies often fuse with the sacrum... Now doctors just ignore this and let it happen because they think it is just natural... My life could of been saved easily if acted on in my younger years... In me only the right transverse process decided to grow and fuse into the sacrum... Forming a bone jack that amped up the pressure slowly in all the years before i was 24... This actually caused the scoliosis curve in my spine... If that wasnt a big enough alarm bell that this fusion should not of been allowed to continue then NOTHING is.... So for years and years the weight was transferred wrong down through the pelvis... Causing a imbalance in the right and left pelvic muscles... My condition is so crazy that the right side muscles are responsible for both the right pudendal entrapment and the left that formed afterward...

     I went through with the Filler surgery because he did a test injection into the right piriformis area next to the pudendal nerve that 100% stopped the entrapment for the hours the medicine lasted... This replicated at the source what the 100 blocks of my L4 right side dorsal nerve root do.... Stop just the muscles involved in pudendal entrapment... And nothing else....  There is no one else i have seen that has found out that this one nerve root just controls a few utterly useless pelvic muscles... The one rhizotomy that worked the first time out of 30 stopped then entraping signals for a whole month... But then the nerve became completely immune to fire... Like a bad Xmen Mutant power... The invulnerable nerve root.....

     I am a complete cynic now too...  Sucks knowing i could be completly cured if it was still possible to get this nerve signal cut off...

        when laying flat on my back the entrapment is still there.. Bout the only thing strech that does anything is the crossed leg with pulling the knee inward to cause a pulling out at the hip joint...  This pulls the pelvic tissues apart just enough to give alittle space to the entrapment... constantly trying to pull the leg out of the joint is no solution though lol.... Doctors just look at me crazy when i explain that to them...

    When that nerve root is blocked or the one month rhizotomy or Filler's test injection that releases the entrapment so that there is no entrapment... Where as now there is so little room allowed that any constipation multiplies the entrapment to beyond the capacity of any human's pain tolerance.... If that was constant i would of jumped or something long long ago...  Right now since being cut off of pain meds i am just effectivly starving myself to reduce that cause as much as possible....

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Jei-Carter

i have several horror stories... But here is my first experience after this condition developed... So at start it was just the right pudendal and to begin with the pain was just in one spot in the scrotum where the  epididymis is.... So the first urologist i got stuck with... a bastard named Andrews... cut that out with a surgery... Since it was a nerve problem though that just sent a whole huge increase in pain for months... 

      As u might imagine I have lost all faith as well in the med system... with good reason...

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Manwpelvicpain

I agree with you completely. Socially and medically we become pariahs and slaves to the pain that cripples us. It is not living. We are just existing in a world that does want to understand our pain or delve further into fixing our problem. We are labeled as unproductive and chronic complainers and pill poppers. I am still fortunate enough to be able to work and suffer through it, but with this evil condition who knows how long that might last. My symptoms are getting all it the worse. It took a month and a half to even be able to get in to see my urologist again.

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Jei-Carter

we are the strong willed to be sure.... penalized by the weaknesses of the weak willed that abuse the medicine that we need...   chronic conditions are

now to be treated with very harshly thanks to the new laws in the US...

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socirul

Hey man, sorry to hear you've been going through this. I'm another guy with pelvic pain. It's been constant for over 6 years now... I totally understand how low it makes you feel and how any small improvements offer hope, which can be taken away quickly when the symptoms return...

Each day I just try my best, try to be as creative as I can in living some kind of life and seeking answers, and helping myself.

Have you tried a TENS machine yet?

I do all kinds of stretches and get out for walks.  Hot baths and heat pads (the bean bag ones you put in the microwave) give some relief.  The meds just space me out...  I've lost hope really, but the irony is that I just keep on trying (why would I keep trying if I've lost hope?).  Maybe it's a matter of pride...  

Can you elaborate on your symptoms, how they started, and what investigations or treatments you've had?

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Jei-Carter
Jei-Carter
in reply to socirul

a spinal stimulator that i once had could help to mask some pain...  I had to crank mine up to the max... shocked the whole pelvis.. felt like u were sitting on a electrically vibrated trampoline or something...  Was no solution but could buy some time for some people... Just so happens that the metal leads had to be placed right in the middle of the scoliosis curve that was caused by the same vertebra fusion that caused my pudendal entrapment... Those tissues are already tensed in the spine so the electrical pulses of the stimulator made the middle of my spine feel like a brick... Had to get the metal wires removed  when i went to get the super mri from dr filler... For others with normal backs it could buy some time... was too painful to keep for me though... the wallet sized platinum battery is still in me.. I have never bothered getting the more major surgery to get it out... I kinda leave it there as a badge of just how far i have been willing to go for treatment...  If any doc thinks i am just a wannabe pill popper it is one more thing that proves i have done everything possible... Who would get a huge battery with wires put into the middle of the spine if they were just another addict.... not that it has made much of a difference.... Is one option to mask some pain signals... not recommended by me but it does confuse the brain into feeling less of that pain by mixing up the signals in the electrical pulses....

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costagran

my heart goes out to people in chronic pain, especially in usa where you are at the mercy of your insurance company or even worse, cant afford insurance.

i have read on this site about people who have been sucked into paying to have their gallbladder out on good medical advice.

then find they still have their original pain and no savings left.

here where i live in spain there is a national health which gives people some confidence.

in my case my confidence became shattered when i got chronic pain.

over the 4 years have seen 7 gynnos who said there was nothing wrong with me.

i then went private and was told i had a pelvic mass and needed a hysterectomy.

alarm bells started to ring at that point.

its frustrating not having a credible diagnosis but its also frustrating for you as you know what the problem is but all these clever surgeons cant put you right.

the cruellest blow was your mere months recovery, and then back to square one.

that must have been such a low point in your young life.

please dont starve yourself.

have you thought of liquidising your food.

may be of some help.

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Manwpelvicpain

I will definitely keep the liquidized food part in mind if I start having problems with digestion again. The US health care system needs an overhaul for sure. It feels like it is all about monetary gain and ethics be dam"'$. I am so glad to have found this site. I know I'm not the only one that has had to endure this horrible and hellish nightmare. 

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Manwpelvicpain

I used to have a tens machine but lost it when my wife left me. I have pain going from my hip flexor through my groin and down into my left testicle. I've also had, when this first started, ibs symptoms, urinary frequency, severe constipation, incomplete evacuation, and nocturia so bad I couldn't sleep. Now I have pain in the same places and some frequent urination and some constipation issues again. I've been through 8 weeks of physical therapy with just stretches, kegels, and a tens machine. No trigger point therapy was done one me. I find the least little thing sets this monster off.

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Jei-Carter

i hear ya man... I know all this crazy shit cost me every normal human relationship i had with girls or family or friends... we are just thinking about the giant purple people eater in the room and how to keep it at bay.... While those we know that can exist in the regular world have no possible way to relate with what is going on in our brains....  We are pretty much kidnap victims... Our thoughts held hostage by what others simply cant see...  I know to others i look like a healthy guy but that can not be farther from the truth.... I know i am medically discriminated because of that....  Relationship discriminated by it as well.... Financially discriminated.... A whole lot of discriminated.... Is part of the disease.....

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Jei-Carter

the part that receives no treatment at all...

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Jei-Carter

and it is no joke how the condition plays tricks with your mind... I know the whole constipation part that changes how much entrapment space is available confused the hell out of me in the first years... I would think i was doing better only to get worse when i couldnt understand why... So when i felt better i would feel like eating the meals i missed... which would come back to bite me a day or more later... Or i would get one surgery or procedure and cause of those i would not eat much in the day before... So i would get a false positive from the procedure... Would stop somewhere to eat with the family or something... and then a day later be in a ton of pain for some reason....  was some demented trick being played by the body on itself....  Then there is the medicine which we take and we think we are doing better... and just like the others have said that reinforces the vicious circle that redoubles the pain... Does alot more than redouble in me.. can cause 4 times or 8 times what the tissue entrapment does on its own...  it is one crazy mind game to be sure...   is something the family couldnt understand... They still think i am half crazy....  I think i should be... dont know how i maintain my sanity with all the mind games this condition causes... If it would disassociate me from the pain i would take it... The non opiod medecine  basically has that effect... puts u partly in another fucked up world... So u gatta chose between your sanity and the pain.... gatta chose to be part zombie so u can try to be part human again.... Not much of a choice to be given...

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Manwpelvicpain

The mind games this plays on you are insane. If it would be consistent in it's intensity and occurrences, I could at least accept my fate. Does it mean I don't want it to ever heal and just stay constant pain? No, but this back and forth all the time, giving you false hopes of improvement just further intensifies your depression and anxiety. 

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socirul

Read and understood guys, totally understand the sentiments.

This might sound undignified, but have you tried self internal massage of the pelvis with an "anal probe"?  I bought a thin one that's not uncomfortable and it can help...  I think this is what's called "internal trigger point therapy", but for me it's just a matter of pragmatism.  As you know, with this kind of condition you try anything.

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Manwpelvicpain

I was thinking about trying that myself but was afraid to without proper consultation. I've never purposely stuck anything besides an enema or suppository in that area before. I've had a doctor with really large hands stick his sausage finger inside of me if that counts. Does it come in a beginner's size? Lol.

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Jei-Carter

lol... your right ManP... getting a finger is enough to count lol... Dr Antolak was the first guy that did the finger test..... But when he pushed on the right pudendal area i was like... OH shit yea that is the horrible spot.... One time was enough to prove the point though.... am drunk as hell to counter the pain... I feel like a real carter right now... drinkin to drown the sorrows... but drowning the pain too....

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Jei-Carter

yup. would try anything... and thus our dignity goes out the window.... it is a dignity robing machine...  takes ur pride and plays games with it.... it takes everything you have...  takes your relationships... takes your friends... takes your loved ones... and gives nothing in return...  except your pride.... takes your pride and plays sadistic games with it.... while we try to hold onto it...

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Manwpelvicpain

I hear ya brother. It consumes every piece of you as if it was some starved lion and we are all the gazelles unlucky enough to cross it's path. After I lost my wife and son because of this soul consuming leach, I also started to drink a little to let go and try to escape my situation. However, my father was an alcoholic and I saw what it did to my family and him. I had to immediately stop because while it might have given me an escape temporarily, the long term damage I have seen alcohol cause was enough to deter me from consumption anymore. I am definitely not one to tell anyone what to do,what they should do, or would I want to be that person. Emotional and psychological pain can cause even the most sober among us to want to seek out comfort in any form we can find it. I just want to let you know if you ever need to talk man, don't hesitate to contact me. We stand stronger and become stronger when we stand together.

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Jei-Carter

yea dude... i hate alcohol for alot of reasons... watched several carters drink themselves to death.... I hate the feeling... fact is though that i had not slept for weeks and weeks... 2 hours is all i will get in a day now completly sober.... 4 hours every 3 or 4 days... went to the ER but they say we dont treat chronic pain... Or sleep deprivement caused by the pain... So really the only reason i have turned to it is to fatigue me enough to allow me to get 6 hours of sleep.... 2 hours is only enough to drive u insane.... Feel like a hypocrite as i am so anti booze... Cant say enough how crazy that it is legal to drink urself to death but needing pain relief is now a crime over here.... And chronic conditions are now to be treated as nothing but addicts.... Just trying to last to my dr appointments on may 5th and 9th... that is as far in the future as i am really looking... I dont expect or am getting any hopes up for them to do anything though... to much experience getting shot down... just trying to hold out for another week.... a week seems forever now.... So all i can do is try to allow my self the ability to pass out and not be tortured awake in seriously just 2 hours like has been my experience for the previous weeks.... a human just cant handle that for a extended time....

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Manwpelvicpain

I hear ya. When you lack sleep, your body and mind can not heal properly either. Sleep is a vital part of that process. I will keep wishing for the best for all of us.

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Manwpelvicpain

I completely understand. I was only getting one hour of sleep a night due to the nocturia. It practically did drive me insane. I feel for you brother. Let me know how your appointments go.

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Jei-Carter

Yea... If the condition isnt bad enough then the sleep deprivation when added on top can definitely kill you... That is basically what happened a year ago... That and added on top then was no outside sensory input... didnt have internet in that crappy meth trailer park i was stuck in....  I need it to input some kind of sensory intake besides just the suffering... So when i slipped into a bad funk for a month that was sufficient to literally make my mind say I have had enough.... So finally i had a nausea episode and tossed up everything and then some... Completely dehydrated and then the brain turned on the white light DMT juice.... Took a decade but this disease can physically kill you... Is not just chronic pain... I imagine that is what can do in people that end up homeless somewhere with no way to counter these side effects....  Even when i ended up in the local ER they just treated me as a overdose.... When i was actually dying from a UNDER dose... Not medicated enough to counter the down side.... Like i have said before what brought me out of my white light euphoria was them repeatedly trying to jam a catheter in me to try to do a forced drug test... Well in our condition those signals are amplified time 10 or more probably so i was Tortured back.... I had to fight them off 3 or 4 times in a near unconscious state....  The only thing that actually did anything was the IV of fluids....   Well as for today i didnt drink enough yesterday so only got 4 hours of sleep.... I hate it but my body just wont allow me to sleep even at the lowest pain levels... Forget it all together if i eat more than a tiny bit.....  I got quite a few horror stories... Am pretty tired of them adding up....  It takes everything i got financially just to not be homeless.... I know for sure that as soon as that happened it would push my body over the limit that i have had a very upclose look at... Have gone up to limit and know exactly where it is now....  There is no more proof needed to me that this is not just a chronic pain condition.... It can very easily be a terminal condition.... The term being the rock hard limit of just how much mental punishment we can physically take... There is a limit there.... Took a long time to find it but it is there... Thus this condition is not just chronic... It goes well beyond that....

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Lily21

Hi guys! 

So sorry to hear about your suffering! I am a long time female pelvic pain patient, and I have finally found a therapist in London who can work properly with my issues. I live in Scandinavia, and all I've gotten here for my pelvic floor dysfunction are stretches and kegels and the phrase: "just ignore the pain and relax" - this does not help! In UK and US they do trigger point and myofacial release to tackle the constant cycle of pain and tightness. The aim is to restore muscles that are putting pressure on nerves, skin etc. It might be worth trying out. 

Check out Maria Elliott: 

sylvieart.wordpress.com/201...

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