4 Year Journey

[ThinFizzy67]

Finally decided to post here after four years of considering it in hopes someone else can relate or give advice. I never got a real diagnosis or told what was 100% going on or what could have caused it like many of you. Never a Hugh Heffner, only been with one girl and never jacked off enough to cause damage I believe. Woke up suddenly to a shock of testicle pain during the night, it went away initially but grew into a dull pain over the course of a few days and became unbearable 9/10 on the pain scale. By that morning my left testicle had raised up and right had lowered. Penis hurt as well as abdomen and pelvic area. Penis had several bumps and hard rings under the skin. New painful veins developed. Emergency and Urologists said it could be epididymitis, or other infections so tried several antibiotics to no luck as the pain worsened. Eventually my penis started rotating in the direction of the lowered right testicle. Lost the ability to sleep on my side, stomach, and most importantly lost the ability to sit down without unbearable growing pain in my testicles as well as a sharp pinching pain between my left buttcheek and left testicle. It also affected my ability to use the bathroom heavily with bowel movements being painful and sometimes impossible as well as no ability to aim when I urinate. Due to covid I had to wait 4 or more months between appointments and photographed my penis slowly but surely twisting more as the days went on but no doctors were interested or cared. My family doctor tried to tell me it was normal until I broke down in an appointment where all she said was I wish I had a magic wand to wave it all away. Spent a full year on my back in bed or a couch unable to do anything. Eventually a chiropractor was able to tell me I had a messed up pelvis that had rotated but was unable to give more info or any reason as to why that would have caused it, penis continued to rotate. Tried Pentox but made little to no difference. Now four years in my penis is unusable, it's rotated so far that the main tube that should be underneath is completely on the left side a 45 degree or more rotation. I cannot have intercourse or even oral as it gets worse everytime, self stimulation is not an option either. Now that I've come to terms with, however four years of not being able to sit down anywhere, travel, road trips, even eat with my family has wrecked my mental health and driven me to becoming suicidal. I struggle to hold a job more then a year because of daily pains. No one has a full idea as to why I can't sit down but my new hope is that my pelvic floor physiotherapist believes it could have something to do with my tailbone after an internal examination caused a mass of muscle to open up between my left butt cheek and left testicle. Thanks to anyone who reads this, maybe I just needed to rant but it was time to join a support group nontheless.  

[Mikel7]

Welcome to the forum ThinFizzy67. You are in the right place for some direction to help ease your mind. First line of business is for you to fill out your signature line -->Signature Line . Then you need to definitely download and study our survival guide -->Survival Guide .

I am sorry to hear about all you have gone through and the pain it has caused you. All of us here have had similar pain/anxiety/devastation regarding peyronies. For some of us it appeared out of nowhere and did it's damage. This is what you have experienced. I do believe that you are also dealing with CPPS syndrome. I had a similar condition with
an accident when I fell on an iron beam between my legs and broke my tailbone. OUCH! I am not sure though if this is what started peyronies for me or not. I may never know. I just woke up one morning with penile pain and a marble size plaque that eventually bent my penis upward about 40 degrees.

You are doing something proactive by being here and developing a strategy/plan to conquer this. You really need to get into a peyronies Dr or a urologist that will work with you - there are not a lot of them out there. Don't feel bad though because all of us men here have had several Dr visits in finding the right one. I don't know how your healthcare system works.

It sounds like you have 2 issues going on and both need addressing. Pelvic problems need to be managed for a lifetime and you need to educate yourself on the origin of your tension. I have used several stretching/strengthening videos that do give me relief from pain and tension -->Overcome Pelvic Pain . Start slow and you will discover where your problems exist and hopefully will get some relief.

You then need to have an erect ultrasound by a qualified urologist to assess your situation. Internal blood flow and any scarring or plaques can usually be identified. So how are your erections? Have you ever thought about taking Cialis or like drug? The issue with peyronies is inflammation and a healing disorder. Addressing this issue will help you in the long run.

You then need to look into traction and VED therapy. This has helped a lot of us here and remember that this process is a S-L-O-W one and takes dedication and time.

Finally the mental side of this is what does a lot of damage. Stress and anxiety cause a cascade of problems and need to be addressed. If you need counseling or medication you should not feel bad. We need what we need to make it through any situation in life and nothing is permanent. Tell yourself that you will make it through this. Read the forum and you will see for yourself that we all have had similar experiences and have made it through to the other side. Mental pain affects every part of our being and you can beat this. You are here and that is a start in the right direction!  

Mikel7

[ThinFizzy67]

Thank you greatly for your response and wisdom. I have updated my profile accordingly and made note of all reccomended resources. I will begin looking into them, thank you greatly for those as well.

I definitely have chronic pelvic pain, it took a while to figure that out but my chiropractor helped bring it to manageable levels besides the inability to sit. A Headache In The Pelvis was a great book that gave me tools to improve it.

I do not believe there are any peyronies doctors within my area other then Toronto but I cannot make the drive there due to inability to sit unfortunately. Some Urologists do the surgerys & injection ultrasound tests here but every urologist I spoke with talked me out of it as they believed it would make things worse for me.

I can get erections no problem and usually keep them for long periods of time, however they are painful and I am unable to actually do anything with them. Pentox seemed to help with pain initially but I believe it may have been placebo as it stopped making a difference after a month. As well I used to apply Vitamin E externally daily but was advised it may not be improving anything so I stopped

I would definitely be open to other medication and will look into them as well as traction and VED devices. Unfortunately I was already born with a penis size that I believe is too small for traction devices unless erect especially after whatever was lost through peyronies.

Your words are specifically highly encouraging and I believe medication is my best bet to deal with the mental weight of this. I have been on several in the past but quit due to the opinions of others around me which was quite foolish.

I appreciate all of this highly and believe I am making the right step here by joining as well. Thank you immensely.
 

[Mikel7]

I have that book also and it is filled with a lot of useful information. If you are ever close to Chicago I would highly suggest Dr Levine at Rush Medical Center.  He is my Dr and is highly regarded as a peyronies specialist.

You should still look into traction and VED therapy. I am sure that you are not too small for either one. There are different size rods for either the Restorex or the PMP and it may well restore some of your lost length.

 If your erections are good then you are getting some good fresh oxygen intake which helps with lowering inflammation and stretching your penis out. Also if any meds are helping you with anxiety/depression I would revisit using them again. Just because you are using them doesn't mean you will for the rest of your life.

Keep learning more about this disease as many urologist are clueless. We need to be more educated about what is going on. If it doesn't make a lot of money for the Dr's then they really don't care - not all but some. Sounds like you do have some direction as of what to do. You are going to make it through this. Remember that this is a marathon and not a sprint.

[tsp]

Unfortunately I was already born with a penis size that I believe is too small for traction devices unless erect especially after whatever was lost through peyronies.

If your erect size is sufficient, then you should be fine. Stretched (when flaccid) length is the same as erect.

I was able to use RestoreX despite my 5 cm length loss with instructions from their customer support. The penis head clamp in RestoreX is detachable, allowing you to clamp without worrying about length, and then stretch your penis and snap back the clamp into the rest of the machinery.

[Pfract]

ThinFizzy67

I second what TSP said. It would almost for sure be able to help you out in starting to use the device. Please have a look at Restorex website. It has a lot of info and that is something worth trying if you can afford the device.

I am from the Ontario, Canada as well and unfortunately there are not many good doctors that you can see in the province, as compared to the US, in this field. But you can look into Gerald Brock, in London ON. As for the US there are a few doctors that offer video consultations which are very reputable. Dr Landon Trost, Tariq Hakky, Lawrence Levine, just to name some. Many patients from the forum have been to them and you can google the board for their names and read the accounts yourself.

Something else that you can do is get access to virtual care in Canada, and ask for a scrotal/penile ultrasound and get your results assessed by a Urologist within the province. He would then discuss whatever the results were with you on the phone. I went through this after falling on top of one of my testicles, hard on a ledge. I felt my concerns where heard and i was reassured with his diagnosis. Maybe you can do the same to try and diagnose what you have on your scrotum/pelvic area?