Lingering pain and discomfort

[SerenityPrayer]

I am 45 and was diagnosed with Pyeronie's at 43. I've visited this site from time to time and have been impressed with the support and advice people give one another. So, I'm excited to join the conversation. Here is my story (condensed for brevity):

Summer 2019: My wife has a low libido, for years. She attributes it to being so busy with raising the kids. My self-confidence is low. I take to jelquing, thinking it may improve my performance and reignite our bedroom.

Fall 2019: I notice a bump on the left side of my penis, slightly below the glans. My erections hurt and lose strength. Two different urologists diagnose Peyronie's. I take lots of ibuprofen and acetaminophen for the pain. One doctor suggests trying pentoxifylline, but I don't stick with that. I have a mental health crisis during this process: Anxiety, bad insomnia, eventually turns into deep depression. I start therapy.

June 2020: I wait out the six months (as the doctors recommended). Not much curvature forms. The bump is gone, but there is a small dent on the left side when flaccid. Erections appear normal and don't hurt as much. When flaccid, the pain is not as bad, but there is lingering discomfort, especially on the left ridge of the head. I start wearing sweatpants all the time, as zippers or tight pants are very uncomfortable. I am in constant search for underwear that will minimize the discomfort. Any friction when walking is very irritating. Trying different meds to help me sleep. Deep mental suffering.

December 2020: Still struggling. Insomnia still an issue. Have had sex a couple of times, but I'm highly sensitive; finishing super early. Erections are relatively normal, but erections/sex seem to make flaccid sensations worse in the aftermath.

Sept 2021: Things seem to be getting better, though there are still lingering issues. Still have lots of flaccid discomfort on the left ridge of the head. Some days are better than others. Erections are normal in terms of shape and size, but my penis is still very sensitive. And I still seem to have greater flaccid discomfort (all around) following sex. My sleep rhythm is better, and so is my mental health. THEN: I visit the urologist to see what he recommends for the lingering penile issues. He does the standard Peyronie's exam (squeezing hard all over the place; it hurts like hell). He says I still have scar tissue and that I should consider shockwave (Gainswave?) therapy to treat the pain. I go home and try to resume my life.

Today (Oct 24) 2021: Now it's been over six weeks since the urologist exam. Flaccid pain and discomfort have progressively gotten worse. I feel pain in places I haven't felt before (e.g., at the base). I take my pants and underwear off as much as possible to relieve these sensations. Any restriction or friction is a problem. Pain/discomfort come and go. Walking even a short distance can be highly irritating, or driving down a bumpy road. I wonder if the Peyronie's exam sent me into a new active phase. Trying to figure out what to do next.

Summary: It's been a long and difficult two years. I'm still in therapy. Most of my issue is flaccid pain and discomfort. Sex is possible, but I mostly avoid it because I don't want to deal with greater pain/discomfort in the weeks that follow. Things were getting better over the summer, but the urologist exam seems to have triggered a new round of increased pain and discomfort, and maybe more flaccid curvature. I'm not sure about my erection these days, as I'm trying not to have erections. I'm considering shockwave therapy to reduce the pain. I'm open to any new ideas. I realize my symptoms are rare and complicated. Any ideas/recommendations are appreciated.

[Mikel7]

Welcome to the forum SerenityPrayer.   The first thing you need to do is to fill out your signature line --> It's hard to remember  your case details out of 20,000 members.  You can find instructions
here! - https://www.peyroniesforum.net/index.php/topic,10819.0.html . You will also get a better response
from other members to your posts.

Then you need to download and read the survival guide -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This will give you more information regarding peyronies and a lot of different approaches to treating it.

So it sounds like you were formally diagnosed with peyronies back in 2019. Did either urologist do an ultrasound? Are you seeing a urologists that would be classified as a "peyronies" specialist?  So your erections seem to be fine and there is no curvature. That is great!  You also addressed your emotional state and sought out help with success - excellent. You say now you are dealing with pain and wondering about doing shockwave therapy. I think your last urologist exam could have been a little aggressive as you say you are now into pain now. I don't think it has caused a new acute stage.

I would read over the survival guide and possibly look into VED therapy as noted in the forum. You could also look into gentle traction.  The Restorex and PenimasterPro  are the two main traction devices used here. For me I also used heat therapy to help with my peyronies pain and it did help. Also I am wondering why your urologists did not recommend low dose Cialis?  It helps with healing the penile tissues and lowers inflammation and facilitates erections bringing in new oxygenated blood.  I would not do the shockwave therapy as it is very $$$ and results are not well documented.  Read the forum and you can read the reviews of others and their results.  Treating penile pain can be tricky.  I had some pelvic pain issues that radiated into my penis at times.  I had to realize that a lot of my pain issues were referred from my pelvic girdle muscles. When I had the proper treatment my pain went way down.  Welcome again !    Mikel7

[SerenityPrayer]

Thank you for the response Mikel7! A couple of quick questions/comments:
-Yes, I have read through the survival guide. There is a lot of great information there. My main struggle is to decipher what is meant for treating curvature versus what is meant for treating pain.
-I have seen two different urologists. Both specialize in Peyronie's, but they are both surgeons. Neither suggested preventative or mitigating treatments (though one suggested Shockwave at my most recent visit). I also met with a urological nurse. None of the above did an ultrasound. I will see the nurse again in a couple of weeks and will ask in advance about ultrasound.
-Re: pain. I have done some physical therapy for my pelvic floor. It's mostly stretches and some strength work on my legs and core. I do those every night. I don't think my lingering pain symptoms are related to the pelvic floor (though I do think those exercises are beneficial in other ways).
-Cialis: I've seen some people post here about that, but I'm not sure how it works. I know it as an ED med. I can't figure out if erections help with my pain or increase my pain. I was on a drug called Mertazapine for a while, which seemed to greatly increase my nocturnal erections, and I had a lot of penile pain during the day when on high doses of that med. So, I fear Cialis may have the same effect.
-VED: As with Cialis, it's not clear to me if I'm better off getting erections, or trying to rest it for now.
-Traction: I'll ask the urology nurse about that.
Thanks again!

[Mikel7]

When dealing with pain heat therapy for me helped a lot.  Curvature was helped through gentle traction with the PMP and VED therapy. The night time erections are good for healing also.  They provide oxygen and nutrients and stretch the penis out so it will not heal in a shortened state. Cialis also has some inflammation preventative actions. Surgery is something I would give a lot of thought to before doing it.  

[letzgo]

Hello SerenityPrayer,

It sounds like we have a lot of the same symptoms. Erections also irritates my penis. I was briefly on Cialis, thinking that  more blood flow will help with the healing process. However, the constant rigid erections irritated my injury and I would be in more pain throughout the day. The peyronies urologist that I spoke to advised that there's not much that can be done for pain, outside of Nsaids. My urologists' advised that pain is always tricky because they cannot narrow down what is causing it (no blood test, biopsy, or imaging study can narrow it down). So they usually recommend limiting things which make the pain worse until it has fully resolved. Penile pain can take years on occasional to resolve though- I wish I wouldve knew this before I did manual traction. However, he did mentioned, in nearly all his cases, a fully recovery is achieved. Among those who still have pain months after the original injury, it usually takes years to improve.


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