Good luck man... keep us posted !

Philcheck (imported) wrote: Mon Sep 28, 2020 8:31 pm This I guess has and is becoming a defunct blog about my journey in Orchalaigia. Things have been rolloing along, tests got scheduled for my next set of days off. The lady in scheduling worked hard to find a time in my schedule to get both tests done back to back. Sweet! Work has been really trying to work with my issue. Cross training in other areas within my overall dept and finding that is helpful making it thru the day.

Hey @Philcheck,

This thread is not defunct. In fact, it is extremely important to members of the group. Your willingness to share your experience adds value to the already massive amount of information on this forum.

About 1997, I was having huge pain in my groin and I was bleeding from my penis (not blood in my urine - I would just bleed at random times). Pain so bad that it would sometimes cause me to lay down and draw up into the fetal position. Like you, I was sent to a urologist who ordered every test in the book. After an IVP, a testicular ultrasound, a cystoscopy to look at my bladder, a colonoscopy, a chest x-ray, blood work for every disease on earth (okay, maybe not every disease), microscopic examination of my seminal fluid and urine, a finger poking my prostate by multiple doctors, dozens of hernia exams, an MRI, and a CT scan I was told that they had found nothing and "reassured" that I didn't have cancer or any other disease that was life-threatening.

Frankly, I felt anything but reassured. The only "good" thing was that my primary doctor believed me, he just didn't know of any more tests to run that might help figure out what was wrong with me.

I wasn't looking for castration but, would have let them take out my testicles through my nose if the doctor told me it would stop the pain. Like you, I would have pain flareups and they seemed to happen more after orgasm than at any other time.

My experience says to not give up and to make sure that the urologists know you don't care if they need to castrate you to make the pain go away. I can tell you that I inquired more than once from several doctors if castration would stop the problem and was told that in all the tests they had run, there was no indication that castration would help. The pain was in my balls but, was also in my groin.

I would wake up in the night and feel like I had to both pee and have a bowel movement. The urge to do both was very strong but, from experience, I knew it was a fool's game to go sit on the toilet. The pain flareups made urination impossible and the anal urgency was caused by the pain flareups.

In 1997, the internet was new and I couldn't really research the problem. I did go see a 2nd urologist and self-referred to him. He thought that there was a chance I had an infection in my prostate or seminal vessels. He prescribed an anti-fungal first. Then, he prescribed a very long course of antibiotics. The number of pills and the length of time the antibiotics were for caused the pharmacist to call me over to the consultation window to ask why I was taking the antibiotics for so long. I explained that the urologist thought that I might have an infection in my prostate which has a poor blood supply and that the long course was because it takes that long to get the antibiotic to kill any bacteria living in the prostate.

As it turns out, I was on a medication well known to cause loose stools and even diarrhea. I didn't think it was that bad because I had no trouble holding it in until I could get to a toilet.

My job required me to drive to client's offices to work. So, I could drive 100 miles round trip in a day. If I needed "to go" while driving, I'd hold it in until I got to home or to a McDonalds. You can say what you want about how terrible McDonald's food is but, their bathrooms are always clean and easy to get into.

I learned to not bring a huge list of written complaints with me. I still do this even today, I write down about five issues I want to discuss, I keep the sentences short and don't bring lots of printouts from the Internet. I put the paper on the exam table and take a seat in a chair. If they tell me to get on the exam table, I put the paper next to me. The doctors appreciate it.

When I had my thyroid removed for cancer, the doctor looked at the list and had all my questions answered in under one minute. Then, I got to spend the rest of the time listening to his plans for surgery and learned a few things I didn't know about the different ways the treatment post-surgery could be done.

Back to the groin pain, I was having. My pain, turned out to be directly related to the medication I was on that was causing loose stools and diarrhea. The clinching that I thought was no problem was causing pelvic floor muscle spasms. Pelvic floor muscle spasms are a rather common problem but, they are more common in women than they are in men.

Once I had a treatment plan for the pelvic floor muscle spasms and switched to a medication that did not cause loose stools, the problem slowly went away. From the start of the problem to finally getting an answer that helped the pain go away, it was almost two years. To say I was frustrated and angry barely describes how I felt about every doctor. Also, except for my primary care doctor, I don't think all of them believed me - and some might have thought I was seeking pain medications. Today, doctors thinking a patient is seeking hydrocodone or other pain meds is even more common than it was in 1997 to 1999.

@Philcheck, your determination to find relief is inspirational. I don't think I have any experience that might help you because my situations have all been so different. I'm sure you have done this ready. But, I might suggest that you write out five lines and make one of them read, "I am more than willing to be castrated to stop this pain."

Doctors concentrate so much on saving somebody parts because they think the patient would be better off. Doctors might consider removing your testicles to be a failure on their part or at least they might look at it as failing you. If they have a clear understanding that you do no feel losing your balls would be a defeat or a failure, they

cutnbulls2ox (imported) wrote: Sat Sep 12, 2020 6:22 am might be more willing to remove th

e testicles without further testing. It is possible that the doctors are hoping they'll find another problem and save the testicles.

@Philcheck, do not think this is a defunct nor dead thread. Your journey has been long and therefore so has this thread. I can tell you that more than six dozen people have read your thread. So, please keep posting. Thank you - your ESH (Experience, Strength, and Hope) is very valuable.

TMFL

Hey @topmanfl

You certainly understand where I'm coming from since I've been down a similiar road as your own journey. I even have gone into Chicago to a major medical center and teaching facility to see some very well respected doctors nationally on my issue. One commented that he had seen medical write ups of people with a similiar pain issue after the numerous abdominal surgeries like me but had never experienced one in his practice. He said the only thing he could offer me was a neurotomy, basically severing and taking out a section of the affected nerves. He said it had a low success rate and with my history could easily make my pain issue worse. Instead of this pain issue at point B, it's now at points A and C since they cut out the neuroma at point B.

This has been an endless, complicated journey with so many surgeries. Heck my pension disability hearing from the police department involved over 5k pages of medical and personnel records related to why I was disabled. Yes 5,000 pages of related info starting from 06/09 to when I filed for disability in 2/13.

I have tried to file even for social security disability but denied. It is hard to keep working to make ends meet on a small pension, the pay I get from a retail job that I can find that I might find I can work with this issue. I even have moved a family member in to help out take care of things around the house that I just can't do period.

So yes this is a horribly frustrating issue and medical condition to have, live with, and convince a doctor you have it, let alone find a treatment for so that one can live somewhat of an enjoyable life.

When my surgeon said back in 2009 I needed this second life saving surgery but if I also knew it might have caused this horrible pain issue at the same time I might have chosen a different route. Life in this horrible pain or die in just a few days from going septic? Hmmmmm. Decisions....

Out of all of this there is one good thing that I don't regret in the least bit at all. Things happen for a reason. My father who I was very close to was diagnosed with Alzheimer's at about the same time I was recovering from my 22 days in the hospital and almost dying. He was found to have a very aggressive form that normally has an average life span of 7 years after diagnosis. But he was already well into the disease and such a horrible disease it is. My father was a brilliant engineer and inventor holding patents for inventing things etc. He became a man who would cry in frustration because deep down he should know how to do something but couldn't figure out a daily task. Was hard to see a man and a father go from a engineer and inventor that designed huge machines for car manufacturers to someone that couldn't tie a shoe.

As I transitioned to being disabled and only work part time at best it allowed me to hang out, be with and do things with my Dad that I wouldn't have been able to still being on the PD. He and I had some of the greatest times together hanging out as I listened to his far out stories and comments. I call them Dadisms. Priceless times that I wouldn't have had otherwise.

Things happen for a reason....

Hey @Philcheck,

Don't give up on social security disability. I think they deny almost every claim on the first application.

Simplyify your claim and hire a good lawyer. From the date of your disability until SSA finally grants your disability, you will receive back pay. The lawyer normally takes a percentage of that back pay.

Plus, Medicare kicks in 2 years from the date of the disability.

I wish I had a better answer for you than just that I think you made the right decision. Living in pain sucks. And, now, with too many doctors providing too little help, it can seem hopeless. Do you have an advocate when you go to the doctor?

I should consult a disability attorney but how does it look when I still am able to struggle working thru 30+ hrs a week to make ends meet? So one can work so am I truely disabled? I think I am and just fighting thru the pain and luckily right now my bosses understand that.

I have talked with my pain management doctor about filing for it and he does not support it at all. Major torpedo under the bow of that ship that will never set sail.

Philcheck (imported) wrote: Wed Sep 30, 2020 8:35 pm I should consult a disability attorney but how does it look when I still am able to struggle working thru 30+ hrs a week to make ends meet? So one can work so am I truely disabled? I think I am and just fighting thru the pain and luckily right now my bosses understand that.

I have talked with my pain management doctor about filing for it and he does not support it at all. Major torpedo under the bow of that ship that will never set sail.

I was in a really bad car accident when I was younger and also have had thyroid cancer. So, I've learned a few things about getting doctors to work with me. I've never fooled myself into thinking that I can make them actually do anything they don't want to do but, I can make sure that they document everything.

First, do not assume that something you said a year ago is still in your charts. Complain (that is the term doctors use) about every aspect of your pain every time you go to the doctor. Ask that the doctor document your complaint. It's easier today than it was before electronic medical records - the doctor can copy and paste the complaint from the last time.

Do not forget the side effects of your medication. Any side effects you have from medication is part of your disability. So, if your medication makes you sleepy or makes it hard for you to think, that is part of your disability. If you are struggling through 30 hours of work by not taking all of your medication (such as gabapentin or baclofen three times a day) because it makes it difficult to do your job, then the job isn't a problem.

If you were taking all your medication, you wouldn't be able to work and yet your pain would be under control. Tell the doctor that at every visit. "The only reason I'm able to hold down a job is by not taking my medication which causes me to be in pain."

When you leave the doctor, ask for a copy of your chart notes. If the doctor did not chart your complaint, ask that the record be corrected and tell them you'll wait. Trust me, it's difficult to ask for that the first time and even the 2nd time. But, after two times, the doctor will start charting the notes. If you ask for your chart notes at the same time as the visit, they have to give them to you for free.

SSA can ask for your file at any time for free. This used to be more of a burden on a doctor before electronic medical records. If you told the doctor about how difficult it is for you to get through 30 hours of work a year ago and the doctor did not chart your complaint, then it's not been charted since then because you didn't complain again (thinking it was already in your notes), SSA is not going to find your complaint in the notes.

I'm not a lawyer but, I do know that SSA can't give you disability if it isn't documented by your doctors.

A consultation with a lawyer is free. They won't take your case unless they think they can win. It will suck when your back payment check comes in and your lawyer takes over half of it but, it's better than no check.

Also, if you have tax returns from before the disability started - keep them. Your disability payment is based on how much you were making for a period of time before the disability started not on how much you are making now.

I know it's frustrating and it would seem to me that removing the testicles would be a good attempt at solving the problem. But, I'm not a neurologist and maybe the pain is in the nerve elsewhere.

You need to be your own advocate sometimes and that is difficult. If you have a trusted family member or friend who can go with you to the doctor and lawyer, it helps. I don't know why but, I won't say anything to a nurse or doctor and then when my advocate shows up, I tell them what's wrong and they get it fixed for me.

Just one example of how an advocate can make a difference. I was supposed to go into surgery for my thyroid in about 10 to 15 minutes. So they had me take off my clothes and put on a new kind of gown that controls a patient's temperature during surgery. It has hookups for airflow tubes that cool or warm the patient as needed. Well, the person in surgery before me was taking a very long time because her cancer had spread into every lymph node in her neck.

Instead of 10 to 15 minutes, I was wearing that plastic bag without the airflow hookups for about three hours. I was sweating and becoming dehydrated inside the bag. I said nothing to the nurse. My advocate showed up to take me home because I should have been out of surgery hours ago. Instead, I was was still waiting. I told him, "this thing is really hot and I'm soaked under here." He took a peek under the plastic gown and went and got the nurse. I heard him say, "you're going to need towels, he's drenched in sweat." The nurse came in and had me lean forward. My back was in a puddle. She had to change the sheets and dry me off what towels. As a precaution, she increased the drip on the IV fluids.

My point with that story is that an advocate got the ball rolling for me. I then took the gown off and threw it in the trash can. Apparently, that wasn't in the hospital's plan because they were expensive. When they came to get me for surgery, they asked where my gown was and I told them I threw it away because it was soaking wet after I had worn it for three hours. They had to get a new one and only after an arm full of Ativan did I let them put it on me.

All is not lost on your claim, you are just at the beginning stages.

TMFL

Hang in there it took me 31 years for them to fix it for me and castration was the solution for me now I'm finally pain free. I begged them for decades to remove them but they always wanted to save them they have an aversion to castration. All my urologist were men and they all have castration anxiety. Hopefully your female urologist will be more open minded.

Thank you TMFl and Chesleyt. Tomorrow evening is the time for an ultrasound on the left testicle that's bigger than a golf ball. Yeah some will say so what that is not huge, well my friends that's it's sixpze on a good day. Some days it swells to about 4 inches in length. Yeas DAMN!

Anyways tomorrow evening brings an ultrasound to see if the testicle is damaged and also a CT scan to see what's up with the cords maybe or mainly if there is an inguinal hernia hiding down there yet. Fingers crossed.

Philcheck (imported) wrote: Thu Oct 01, 2020 7:48 pm Thank you TMFl and Chesleyt. Tomorrow evening is the time for an ultrasound on the left testicle that's bigger than a golf ball. Yeah some will say so what that is not huge, well my friends that's it's sixpze on a good day. Some days it swells to about 4 inches in length. Yeas DAMN!

Anyways tomorrow evening brings an ultrasound to see if the testicle is damaged and also a CT scan to see what's up with the cords maybe or mainly if there is an inguinal hernia hiding down there yet. Fingers crossed.

I know we live in a digital world. In fact, we just bought a house a year ago and I never signed an actual piece of paper until closing.

However, I have found that a three-ring binder, a three-hole punch and some section dividers have been my best friend when trying to remember everything.

I make a section for:

Lab orders - that way I have them when I need to go get a blood draw or a scan.

Test Results - I sort them by date with the newest on top

Chart Notes - I ask for the chart notes after every visit

My Notes: Any questions I've asked the doctor, I make a copy of and have it in the binder

Bills: Just in case there is a question on payment

Vaccinations: When and where with a copy of any paperwork

Prescriptions: A current list of all medications and over the counter meds I'm taking.

I learned this from my dad. Whenever there was a question about my mother's health, he always had the answer.

Later, after my mom passed, it helped with his conditions. I've seen it save both of my parents a scan that they'd had two months earlier and when my dad was ill after sepsis, I found a duplicate medication that could have killed him. His discharge nurse at the hospital told me it was okay for him to take two different medications that did exactly the same thing to slow down his heartbeat. Yikes!

You might have another method to keep yourself informed. But, some kind of way to always have the current and past data.

Tell the tech to be gentle during the scan.