Xiaflex Journal for flatten_the_curve

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Flatten_the_curve

Name: Flatten_the_curve
Age: 33
Date: 7/1/21
Level of calcification (if any): unknown
Result: Undecided
Number Of Shots: (1*2)
Doctor: John Foley (https://www.umms.org/find-a-doctor/profiles/dr-john-patrick-foley-md-1053381517)
Modeling: Self; not yet started
Summary: (1-4 line summary of the treatment and the results): Peyronie's presented in late 2020 without traumatic incident, approx 60 degree curve to the left. Brought it up to primary care, was referred to a local urologist who referred me to a second urologist with more expertise. After some wait due to insurance stuff, first course of two xiaflex injections took place 6/23 and 6/29. Second injection resulted in considerable pain and swelling around 12 hours post-injection. Hematoma likely. Will most likely discontinue use. More details below.

I was able to self-diagnose Peyronie's largely thanks to this and other forums. This diagnosis was quickly confirmed by a urologist who referred me to a colleague with more first-hand experience. He believed that because the nature of my plaque that I was likely to respond to Xiaflex and we proceeded accordingly. I have a smallish plaque (perhaps the size of a blueberry or small grape) located about 2/3 of the way up from the base (around the area of my circumcision scar) on the right side. This causes a 60-degree bend to the left, with the apex of the bend centered on the plaque. This makes penetration difficult (but possible). There is a possible second plaque located closer to the base the causes a gentler leftward bend, but this is more minor and poses no problem.  I elected to go forward with treating the more distal plaque, as success seemed likely and it would result in a quality of life improvement for my partner and I.

The first injection went without incident. Dr. Foley expertly administered the penile block with lidocaine. Others have expressed that this is extremely painful and produces mild trauma, but I had no such experience. The numbing shot was certainly uncomfortable (akin to a prolonged bee sting) and psychologically unpleasant, but passed quickly. The Xiaflex was painless thanks to the block, but was certainly uncomfortable. Lots of pressure and injection took a few minutes. My butt sweat left a butt-shaped hole on the paper covering the exam table; I was a little anxious. Dr. Foley applied a gentle compressive bandage (3M Coban wrap) and I was good to go.

I was advised to leave the bandage on for 24h, but could remove it before bed if I preferred. I did so after about 12 hours and was met with a brief stinging pain (30s or so) and sudden nausea. Nausea passed in a few minutes and I slept without trouble. I developed no bruising or swelling, and left fine save for a little tenderness.

Round 2 was 6 days later. Injections went as before if not better; the penile block was more complete this time, and I felt little pressure throughout the procedure. Coban wrapped as before.

Things went south when I removed my bandage that evening (~12 hours following injection, as before). Within 10 minutes, I was met with overwhelming stinging pain. I am pretty good at coping with sudden pain, but this was nearly unbearable. I couldn't stop myself from crying out as the stinging pain mounted and expanded through the length of my penis. This intermittent but extreme pain persisted for around 30 minutes. Any longer and I would have gone to the ER. When the pain subsided enough for me to look in on things, my penis had swollen to an alarming size. Concentrated around the injection site, fluid had accumulated to at least a golf-ball size. This was pushing up around the glans; the skin was stretched thin but luckily did not rupture. The mass was soft when palpated, suggesting fluid (most likely blood) had pooled. Once things had settled down by around 3 AM, I decided to forgo sleeping and call Dr. Foley's office when they opened at 8 AM. I was far too stressed out to sleep easily, and feared what a nocturnal erection might do. Those of you undergoing treatment presently: do not remove your wrap prematurely. Wear it the full 48 hours, even if you've been fine with less in the past. I cannot stress this enough; swelling is the enemy and the compressive wrap keeps things together while you recover.

I was advised to re-wrap my penis and apply ice. I could take an NSAID for the pain and to help with swelling, but there wasn't much to do except to let my body heal. I shared pictures with Dr. Foley (not what I had in mind for my first sexting experience) who confirmed this was not something that could be really treated. This is likely a hematoma that will take around 2 weeks to heal. When I changed my wrap this morning (7/1) I was met with a bit of a horror show. While the swelling had modestly decreased (no longer looked like a balloon about to burst), I still had a massive amount of swelling around the right side. Everything is black and purple from base along the extent of the shaft (the head has little to no discoloration). The mass itself remains soft when palpated, and is a nauseating mix of black, deep red, and purple. I am no longer experiencing racking stinging pain, but everything is very tender. It feels like a big bruise. For now, I am to keep everything wrapped (not at easy task given the... shape of things) and to keep the penis in an upright position (oriented toward the stomach) as much as possible to help reduce swelling. The psychological strain is also worth mentioning; I feel constant anxiety over my situation and the prospect of a poor recovery. This makes sleeping difficult and I have barely eaten since my second injection. I plan to begin my stretching exercises once I have healed, but that's a ways off. Might be less effective given the time that will have passed from the second injection.

Dr. Foley expressed doubts in continuing the course after this reaction. I am of the same mind. My condition is livable; I am in a stable relationship with no fears of going on the dating market, and our sex life may have changed but we're both happy with it. My initial assessment of a relatively minor procedure to get back to my old self was... off the mark. Re-evaluating things now, I do not think any possible gain from this is worth risking a recurrence. That 30 minutes of horror is something that I will never forget, and stands out as the most painful experience of my life. I can only hope my road to recovery is quick and uneventful.

I will update this journal as my recovery progresses, and plan to stay active on this forum to help others.
33 yo
Committed Partner
Onset late 2020
60 degree leftward bend
One Xiaflex course (2 injections) 6/23/21, 6/29/21
Painful swelling & hematoma following injection 2
Results unknown but unlikely to continue treatment

GaussRifle

I am undergoing xiaflex treatment as well and would like to point out that under no circumstance should you unwrap your penis before 1-2 full nights... the reason being nocturnal erections bring in blood and that is what causes swelling if no pressure is applied against it. I do know the sharp stinging pain you are talking about.... it lasted only for a minute for me and woke me up from sleep... that is to be expected and I was willing to endure it. I also have a big lump with no discoloration after my last cycle which was about 1.5 weeks ago... I think it'll take another 2 weeks for this to go away.

You need to take things easy in your mind and be mentally tough.  Also don't forget to reward yourself.. be it a great lunch or something you like. You need to reward yourself for undergoing treatment... this keeps a positive mindset.  Finally, re-evaluaye your decision of quitting treatment.... are you using restoreX with treatment? Positive results will reinforce your mind to go through with it.
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Flatten_the_curve

Thanks for the reply, GaussRifle. I've read a lot of your posts and they have been very helpful. I agree on the wrap; that seems to be the consensus. I figured I'd be fine because I had no issues on the first go, but boy was that wrong. For anyone reading, absolutely wear the wrap for the full 48. I can't speculate as to what caused the prolonged and intense pain. I went from totally fine to incapacitated, and the pain came along with massive swelling. My best guess is that a blood vessel had ruptured or was near rupturing, and removing the wrap opened the floodgates. 100% do not recommend taking the wrap off before 48 hours.

I am not using a traction device. Results on those seem inconsistent and my urologist has advised that they produce little effect beyond consistent hand-modeling, but says I am free to pursue if I'd like.

I'm trying to be kind to myself, as you suggest. I generally deal with stress poorly and in a very physical way, so this is taking a toll.

I am remaining open-minded regarding treatment, but this has spooked both myself and my urologist (who has a good deal of experience administering this treatment). As I mentioned in my long post, my condition doesn't severely detract from quality of life and the treatment is inconvenient, painful, and unlikely to produce profound results. I guess I don't see the sense in rolling the dice risking additional pain and other more severe side effects.
33 yo
Committed Partner
Onset late 2020
60 degree leftward bend
One Xiaflex course (2 injections) 6/23/21, 6/29/21
Painful swelling & hematoma following injection 2
Results unknown but unlikely to continue treatment

Benraycamp0

@Flatten_the_curve

Welcome to the forum! Could you please take a minute 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
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Flatten_the_curve

7/3 Update

I have been continuing the course of loosely-applied compressive dressing, rest, and ibuprofen. Discontinued applying ice after 48 hours. Swelling remains modestly decreased, but little improvement over my 7/1 report. Ecchymosis (bruising) has increased dramatically; the entire extent of my shaft is deep purple/black. A small portion of my ventral glans has also darkened. This isn't necessarily a bad thing; as the blood from my injury spreads out (thanks in part to gravity) an expansion of the bruise is normal. Darkening is also typical of bruise development. Everything is tender to the touch, but I have little to no pain at rest. Early this morning, I experienced a series of nocturnal erections. The first two were uncomfortable, but not painful. The third was accompanied by a mild sharp pain (probably a 2 on the 1-10 scale). It was enough to compel me out of bed ahead of my usual rising time. Today I am feeling a sort of odd moving pressure with a periodic, mild stinging pain (1 or less on a 1-10 scale). I suspect this is just mild discomfort arising from regular blood movement.

Today, I began digging into primary urology literature concerning Peyronie's, hematoma, and penile fracture following xiaflex injections. I am a scientist by trade, so I have easy access to scientific journals. I am not a physician, and I'm not going to pretend to be one online. That said, I have some theories as to what happened to me.

1. Possible penile fracture. While this usually happens to xiaflex patients who "miss a stroke" during sex too soon following their injections, it can happen during a spontaneous erection. The theory here is that the xiaflex can damage collagen outside of the plaque, including the tunica. This can weaken it, increasing the likelihood of a rupture. The most recent review I found reports that while surgical exploration is a common outcome in this case, patients treated with surgical vs more conservative (i.e. rest and heal) approaches experience similar outcomes. [1].

2. Damage to vasculature as a result of xiaflex degrading the plaque. Metzler et al. [2] theorize that expansion of the penis can cause spontaneous tearing of superficial blood vessels around the plaque. Because smaller vessels are fragile and may rely on the plaque for structural support, degradation and/or breaking up of the plaque deprives them of this support and renders them vulnerable to rupture when the tissue expands. This may work in concert with the aforementioned "micro-fracturing" of the tunica, leading to very similar presentation to a proper penile fracture without the same level of trauma to the tunica or hematoma within the cavernosa. These similarities in symptom presentation with stark differences under an ultrasound/MRI have proven confusing in terms of diagnosing a fracture following xiaflex; fortunately, early evidence suggests that for post-xiaflex damage (especially following spontaneous development) responds equally well to conservative and surgical approaches.

In light of this, I think I have most likely not suffered a proper penile fracture, but probably something rather close to it. No blood in urine or trouble urinating means no urethra damage, and the position and feel of my hematoma suggests it is not within the cavernosa. I am having nocturnal erections which is a good sign; I am hoping the pain is just a natural consequence of everything being bruised to hell and the stretching of bruised skin/hematoma is going to hurt no matter what. Hopefully conservative treatment leads to an uneventful recovery.

References for the interested:
[1] Beilan, J. A., Wallen, J. J., Baumgarten, A. S., Morgan, K. N., Parker, J. L., & Carrion, R. E. (2018). Intralesional injection of collagenase clostridium histolyticum may increase the risk of late-onset penile fracture. Sexual medicine reviews, 6(2), 272-278.
[2] Metzler, I. S., Reed-Maldonado, A. B., & Lue, T. F. (2017). Suspected penile fracture: to operate or not to operate?. Translational andrology and urology, 6(5), 981.

Happy to advise on ways to access these primary sources for those interested in reading.
33 yo
Committed Partner
Onset late 2020
60 degree leftward bend
One Xiaflex course (2 injections) 6/23/21, 6/29/21
Painful swelling & hematoma following injection 2
Results unknown but unlikely to continue treatment

Flatten_the_curve

7/6 Update

Saw my urologist this morning for a follow-up following the complications; he was kind enough to work me in in-between standing appointments. Mostly good news. Could have had a spontaneous corporal rupture or just a hematoma; treatment is the same regardless. My urologist even consulted with Dr. Martin Gelbard for a second opinion. Recovery should happen without invasive measures over a few weeks. If the hematoma does not resolve on its own, we may need to open things up and evacuate the clot.

Swelling is coming down, but I still have extensive bruising, a hematoma around the injection site, and edema on the ventral side near the glans. Moving around has become more tolerable, and I'm really only experiencing pain related to direct contact with the bruising. Morning erections are a bit of a problem; an erection is uncomfortable enough to wake me up. Involuntary contraction of the pelvic floor muscles with an erection causes a sharp pain which will get me out of bed for good. This is causing me to lose a little sleep (probably sleeping 5-7 hours a night). Inconvenient, but manageable. I'm keeping things wrapped with light compression and continuing low-dose ibuprofen for pain/swelling. I can now apply some gentle heat to aid recovery.

Once bruising has subsided enough, I am to begin the hand modeling exercises. I'm not ready for it yet, but hopefully soon. I have a follow-up in a couple months to check in, but it is unlikely that we will resume the Xiaflex course. If Peyronies Disease progresses, we might explore plication surgery.
33 yo
Committed Partner
Onset late 2020
60 degree leftward bend
One Xiaflex course (2 injections) 6/23/21, 6/29/21
Painful swelling & hematoma following injection 2
Results unknown but unlikely to continue treatment

Flatten_the_curve

7/26 Update

I'm nearly a month out from the second injection from my first round and I have nearly recovered. Swelling is completely gone, the edema has resolved, and my bruising is mostly healed. I no longer need to apply the compressive wrap. The hard lump left from the hematoma remains, and will likely take several more weeks to heal. There is a little bit of scarring near the glans from the swelling and some slight discoloration, but nothing you'd really notice. There is still a little tenderness, and my morning erections can feel a little uncomfortable but not painful. I've been doing my hand-modeling exercises, but I don't know how much improvement they will produce as I was unable to preform them for weeks following the second injection.

I'm doing well psychologically. I've been able to share my experience with some close friends and have gotten a lot of support. My partner has been great. I no longer feel super anxious, and have stopped doom scrolling through Xiaflex forums. It feels like everything's going to be alright (knock on wood).

I think there is some improvement to my initial curve, but I have not been able to quantify it. I wonder if the improvement was caused by the tension of wearing a compressive wrap through morning erections for weeks--it's a bit like the counterbending exercise. I can't tell if the plaque has become smaller as the hematoma is in the same general location. My penis feels a bit different and perhaps a bit thinner towards the more distal portion, but by no means a showstopper. While I experience completely full nocturnal erections, they tend to dissipate quickly once I wake up. That's probably because I've been trying to scare them off ASAP for weeks to avoid pain, but it makes it hard to snap a good photo or to take measurements. Erections induced intentionally during the day fade even faster. It's going to take a little getting used to erections not being dangerous anymore, but at least I'm confident everything is working properly. I did a careful solo run today and was able to ejaculate, but it was a bit of a mental struggle to stay hard consistently after all that's happened. Now that I know everything is intact, I plan to avoid sexual activity a bit longer until the pain is totally gone to avoid any possibility of reinjury.

I think I'm through the worst of it.

I'll post again when I have more definitive measurements of curve change, but initial results are encouraging. Regardless, I'm done with the Xiaflex treatments.  
33 yo
Committed Partner
Onset late 2020
60 degree leftward bend
One Xiaflex course (2 injections) 6/23/21, 6/29/21
Painful swelling & hematoma following injection 2
Results unknown but unlikely to continue treatment