Peyronie's back after 7 years "healed" + questions about traction, VED, others..

[PDnotFORme]

This is my unfortunate welcome back to this form after nearly 7 years away; here is a quick recap on my historical condition & my new dive into hopefully beating this terrible disease:

Initial Battle (2014/15): In October of 2014 (I was 26 at the time), due to a minor trauma during intercourse (female superior position), I developed a bottleneck at the base on the ventral side. By December 2014, I was fortunate to find a urologist in Dayton, Ohio that treats Peyronie's Disease & I was put on a regimen of pentox (3x daily 400mg), l-arginine, and 5mg cialis. Within about 3-4 months of this regimen, my pain began to subside. I was engaged at the time and having regular intercourse (Cialis made this much more comfortable, as my erections were quite strong). After it was all said and done, my girth at the bottleneck stabilized at around 5.75", where the rest of the penis was 6-6.25". I naturally have a slight downward curve (maybe 10 degrees), and this never changed, I did not lose any length and retained about a 7.75" to 8" erection. After about 12 months, I came off of the pentox, and was able to taper off of the cialis. I HAD NO ISSUES FOR 7 YEARS; I HAD WON!

Until now:

I contracted a bad case of COVID-19 in January 2022, also while dealing with another, unrelated medical issue (injury to cervical spine). About 2 weeks later, I noticed that my peyronie's disease was beginning to narrow again for the first time in 7 years, so I got in to see my urologist right away. Fortunately, I was able to be seen within 2 days. We decided to put me back on my original regimen and chalked it up to a cascade of inflammation after having COVID (apparently there is ongoing research at Cleveland Clinic about men having penile issues after COVID, and there are even documented cases of peyronie's after COVID).

Within about 2 weeks, the bottleneck was beginning to go away and I was feeling more confident that this would pass, then disaster struck. Due to the Cialis, I would have spontaneous erections, some of which were incredibly strong and rigid. Most would go away on their own, some required gentle masturbation to relieve. On 2/19/22, I had a particularly rigid erection, and unfortunately bent it upward towards the ceiling (total accident) and immediately felt pain on the ventral side of the penis and saw a redness under the skin of the penis. I called my uro (they have an after-hours hotline) and said if the pain doesn't subside to go to the ER to verify no issues to corporal bodies/tunica lining. I had an MRI done, and it showed no evidence of major issues like fracture (which was positive), but the pain remained. I noticed a small indentation immediately below the glans, but no curvature. Following this, I continued to take the pentox & supplements, and intermittently took the cialis.

The disease was beginning to feel like it was slowing down, but the last week I had noticed pain during gentle masturbation, and on 4/9 ended up back at the ER because I had tremendous pain after relieving an erection. This MRI was also negative (my doctor prefers MRI to US because it's less invasive and shows more detail, and I was having strong erections so did not feel US was necessary), but I woke up the next morning with a 20-30 degree curve (downward and to the left) about 3/4 of the way up the shaft, pain, and a buckling feeling/lack of stability. The tissue under the skin in that area feels stiff and rigid, I also noticed tremendous deformity when partially erect, and even a minor deformity when flaccid. I am heading back to my urologist tomorrow to discuss options, and am also getting a second opinion next week from a uro that specializes in sexual medicine in Indianapolis, IN.

Given that I am less than 60 days into this new onset, I am going to ask about traction, VED, and shockwave in addition to the oral medications, as I want to tackle this head on and try to eliminate the curve before it has a chance to get worse & "settle in". I know I am ways away from anything like xiaflex, surgical intervention, other injection therapies, etc. because it is such a new onset and I am in the acute phase. I have noticed that traction seems to be the gold standard for treatment during the active phase.

Has anyone had success with traction in the acute phase? Is there a particular device that has worked best? With an indentation immediately below the glans, I am concerned because it seems like this is where the traction device will clamp down & I do not want it to get worse. With the curve, I do not know if VED would be an option. Has anyone with a large curve been able to use VED with any luck?

I am no longer married (having the support of my fiance 7 years ago was a gift from God), and was actively trying to date prior to this new onset, but this is really messing with me mentally (as I already have a cervical spine issue to overcome), and this is the LAST thing I needed to contend with on top of that. Not having the support of a partner makes this condition that much more difficult mentally. That being said, I will not give up or hang my head. I am going to battle this, as having children is my biggest goal in life, and I can't risk that and will be doing whatever it takes to treat this condition.

If anyone has any ideas on traction, VED, best practices, supplements, etc. and has experienced anything similar, please let me know! Thank you so much for reading & I look forward to any support the forum can bring.

PDNFM

[Pfract]

Hey PDnotFORme!

https://malefertilityandpeyroniesclinic.com/peyronies/treatments/

It is sad to read that peyronies is having another go at you. IT is very reassuring that you had an MRI done so you know it wasn't a fracture. Even though it could definitely be peyronies. Please have a look at the link above. There it shows the most up to date recommendations from a leading expert on this disease. You can also book a consultation with him and a free courtesy call as well.

Please try to stay strong. You are right when you say this disease is so challenging mentally. Stay with us. Read the survival guide, update your signature if you haven't done so and read as much as you can. It helps a lot.  

[PDnotFORme]

Thank you for the info! I am familiar with Dr. Trost (I have poured into research for the last month or so), and will most definitely look into the consultation with him & free courtesy call. Are those set up through the website that you provided the link to? Any help I can get with this awful condition is great! I also know that I am still within the first 90 day window, but the clock is ticking (nearly 60 days in), so I am hopeful to get a regimen rolling in the next week or so.

Really appreciate the reply & look forward to hearing from others!

PDNFM

[jj21]

Hey  PDnotFORme,

I am sorry to hear about your condition especially since you had already beaten this!

Since it's been 7 years - there's a lot more research and treatment out there. I can't find the exact studies but the leading treatments based on this forum seem to be RestoreX, VED (3 Cylinder protocol)  and I think Penimaster PRo (traction device). Pentox helps some, so does fasting and Keto diet and manual traction (have a look at NeoV's youtube channel). Daily 5mg cialis helped me a lot and remember NTE can be good for healing.

If i could go back to the acute phase where you are - I'm almost certain I could have cured my Peyronies Disease with the above mentioned treatments.

Start sooner than later! There's a good chance things could get worse for you without treatment!

All the best,
J

[PDnotFORme]

JJ,

Thanks for the info! Have you tried either the manual traction or traction with a device? As I mentioned, my main concern is the location of the indentation just below the glans (I don't want to make this worse). The curve is a bit lower down so I would think that it could only improve with the traction.

One other thing I can mention - when flaccid, the area that is curving/buckling seems softer than the other areas (does not feel like a plaque, but rather an area where tension during erection is no longer possible), as if the tunica or corporal body is compromised. The MRI's showed no evidence of a tear, so I'm hoping my uro has some other ideas on what could be happening.

Has anyone else experienced a "softer" area where their curve is located?

PDNFM

[PDnotFORme]

Hi all! Just wanted to cycle back on this to see if anyone else has had success using traction, and how early they started. My current uro is referring me to sexual health specialist (appt is in 2 weeks). Also realized I'm dealing with hard flaccid, but definitely have the beginning of a new curve (down and to the left, about 30-40 degrees), and experiencing ED for the first time in my life (33 yo). I am concerned with traction because of the hard flaccid (my length while flaccid is cut in half when it hardens (which is about half the time). If I do start traction in the next 2 weeks, it will be within 9 weeks of onset of all of this, so that's one positive. I am also experiencing pain 24/7 while flaccid.

Second question: I have an indentation just below my glans, so would penimaster pro be a better option in lieu of RestoreX? I don't want to make that worse with the clamp.

Thanks in advance for any insight!!

PDNFM

[Hawk]

PDNot,

You have met the minimum post requirement and the signature line requirement. I would make a well-formulated question and open a topic on Dr. Trost's board on the forum.  Word it in such a way that you are not asking for specific medical advice for your case.  For example "If a man has ......  Would you recommend ...."

[PDnotFORme]

Hawk,

Thank you for the tip! I will work on getting something prepared for Dr. Trost's board.

Really appreciate the reply! Being so early on in the comeback of my Peyronies Disease, I am hopeful and trying to tackle this head on. I will not succumb to this condition, and would encourage anyone else who happens to read this and may be early in their presence of pain, curvature, or both, to ACT FAST. That was my saving grace the first time around which led to 7 pain and curve free years.

PDNFM