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 1 
 on: Today at 05:46:50 AM 
Started by Lostandsad - Last post by markdubby
i know exaclty how you feel, and have been in the same spot at the start of my journey (back in february)

as many users say, this is a marathon, not a sprint and this will take a while to set in, but when it does and you come to the full acceptance of the disease it will get easier!

also you are just 6 weeks in, this is a relatively short time span to see any improvement from your routine. give it 3-4 months and you will undoubtedly see that things WILL get better. try to spend less time on here and focus on other aspects of life, this disease won't change from today to tomorrow so you might as well accept it and you will see that things will improve :)

stay strong!

 2 
 on: Today at 04:33:27 AM 
Started by Zlobenia - Last post by Zlobenia
Initially when I got peyronie's first it was in an entirely different place and it resolved itself almost entirely within about 4 months, alongside a number of other temporary deformities. The plaques I have now have occurred more recently but seem relatively stable unfortunately, and I can't say anything about a change in the last 8 months-ish.
As far as normal use etc. is concerned I still have full functionality I think: just quite a change in side on most of it, yeah.

 3 
 on: Today at 03:00:57 AM 
Started by Lostandsad - Last post by nemo
I hear you and I think many of us go through a bleak existence like this when we're in the throes of a Peyronies Disease flair (even if it's the one and only time you deal with Peyronies Disease in your life).

My last flair started in 2013, and I was on the boards here multiple times a day. Around about 2015, I was stable and seemed fine, and then no longer looked at the boards (maybe once a year) and resumed normal life. This current flair, which started in July, has me back on the boards multiple times a day. And like you, I check the boards for ... I don't really know why. Looking for hope. Some promising new treatment. Just to be with guys who are going through this. I'm not sure, but I spend lots of time here.

The key is to recognize that you are in a phase right now - the Peyronies Disease phase - of your life. This is not your life - this is a phase. You will come out the other side of it, and the odds are in your favor that when you so, you will be stable and able to have sex. If, for some reason, you are in the minority of men who are not able to have sex in the chronic stage, there are perfectly viable options, including implant.

So, though I know it's extremely hard to do, you have to try to step back and views this as a phase of your life. An unwelcome, really crappy phase, but only a phase. There are many people dealing with terminal illness, and that is not us. Be grateful, and resolve to power through this phase.

There are brighter days ahead.

nemo

 4 
 on: Today at 02:55:55 AM 
Started by 68andbent - Last post by Lostandsad
https://www.peyroniesforum.net/index.php/topic,13289.0.html

He posted updates here.

 5 
 on: Yesterday at 11:55:31 PM 
Started by Lostandsad - Last post by Kobegianna
We are all going through the same thing. Your rant just described my whole day too.

 6 
 on: Yesterday at 10:28:40 PM 
Started by MikeSmith - Last post by Bud luck

Injection therapy for Peyronie’s disease: pearls of wisdom
William O. Brant, Amanda Reed-Maldonado, and Tom F. Lue

Additional article information

Peyronie’s disease (Peyronies Disease) is a localized connective tissue disorder of the penis that may result in formation of plaque, penile deformity, pain, erectile dysfunction and emotional stress. It can affect the tunica albuginea, septum, or intracavernous struts leading to curvature, shortening, indentation, or hourglass deformity of the erect penis. Because it is a localized disease, a focal therapy seems to be the most rational approach. Additionally, patients are understandably hesitant to have surgery on the penis. This commentary summarizes the combined experience of verapamil and Xiaflex injection by the authors. Other practitioners use interferon and other medications. We do not use these and therefore have eliminated this from the discussion.

Verapamil injection
Although not FDA approved for use in Peyronies Disease, verapamil has been used commonly for many years (1-3). Verapamil is administered as 10 mg in 10 cc of NS, every 2 weeks. Our practice is to perform a penile block, use a 21 g needle to administer the medication, and to give six injections prior to reevaluation of the clinical situation. If there is good improvement but not quite enough, the patient may elect to have another six injections of 20 mg in 10 cc.

Although the number of patients receiving verapamil has decreased since the FDA approved Xiaflex, there still is a patient population that seems to benefit from this medication. Unlike Xiaflex, verapamil is given in a larger volume. In other studies, injection of saline alone has a good response rate, and it is unclear to us the relative role of the drug itself versus the hydro-distension effect of the large volume of saline.

Cost
Verapamil is substantially cheaper than Xiaflex, and thus may be used when insurance coverage or other financial considerations prohibit the use of Xiaflex.

Pain
Although Xiaflex is not uncomfortable to receive, some patients have significant pain for up to 48 hours after the injection, with rare patients having discomfort beyond this period. Verapamil is more painful to receive, likely due to the volume of fluid, but is not significantly painful thereafter. It hastens the resolution of Peyronies Disease-related pain. Although many studies have noted that resolution of pain is an eventuality in Peyronies Disease patients, it is often a considerable source of bother in those patients who have it, and resolution of pain as rapidly as possible is a very desirable outcome. We have found that Xiaflex may be extremely uncomfortable in patients in whom pain is a predominant symptom.

Non-curvature deformities
Verapamil seems to have a superior outcome for deformities that are not purely curvature in nature. These include waists, hourglass, and areas of instability or hinging. Although the deformity in these cases appears lateral, a lateral plaque is relatively uncommon and these defects usually are associated with a typical, dorsally located plaque. Our surgical experience has shown us that the area of indentation is a contracture, rather than an area of underlying corporal fibrosis. The dorsal plaque is associated with abnormalities in the intracorporal struts, which causes local contracture. Our theory is that verapamil and/or the associated hydrodistension allows the struts to expand and thus corrects these types of abnormalities.

Stage of disease
With stable disease and heavy plaque calcification, verapamil seems to have much less efficacy than when used in the context of early disease and softer plaques. Overall, we prefer to use Xiaflex in the context of stable plaques.

Xiaflex (collagenase clostridium histolyticum) injection
The main difference between Xiaflex and other injectable therapy is Xiaflex’s ability to dissolve the collagenous fibrous tissue within the plaque (4,5). However, Xiaflex also carries the risks of hematoma and penile fracture due to thinning/softening of the tunica albuginea. The modeling/stretching maneuver to expand/lengthen the contracture following Xiaflex injection is as important as the injection itself. Clinical trials have clearly shown that the combination of injection plus modeling has the best results in reduction of penile curvature.

Location of injection
Anatomically, the thinnest portions of the tunica albuginea are on the lateral aspect (3 and 9 o’clock positions) and between the corpus spongiosum and the cavernosa (6 o’clock position). At this time, the company does not recommend injection to the ventral plaque for fear of damaging the urethra. After more than 1,000 injections, we feel that the ventral plaque is not necessarily a contraindication as long as the plaque is clearly palpable, not calcified, and thick (>0.3 cm by ultrasound measurement). We have also found that ventral plaques respond, in these situations, as well as dorsal plaques. The urethra can always be spared as long as the plaque can be firmly pinched between the thumb and index finger. The injection should be directed to the 5 and 7 o’clock positions not 6 o’clock position. We have seen herniation, hematoma, and micro-rupture of the lateral tunica after injection of Xiaflex to the lateral aspect of the penis. Therefore, we do not recommend Xiaflex injection to lateral aspects of the penis for men with true lateral curvature. We have not injected Xiaflex to sites of intracavernous or septal fibrosis and therefore cannot recommend it at this time.

Injection technique
The instruction from the company is to insert the needle to the plaque and slowly withdraw while injecting Xiaflex solution. We feel that this may “waste” part of the injected Xiaflex because it is very difficult to be certain that the needle is still inside the plaque if one is injecting while withdrawing. Additionally, we have seen higher rates of ecchymosis and swelling, likely due to extravasation of Xiaflex outside of the plaque via the needle track. Instead, we prefer to forcefully inject Xiaflex to the plaque against the high resistance (Figure 1A,B). We also prefer to inject into at least two sites within the plaque to avoid rupturing the thin plaque with the total amount 0.25 mL. Of course, a large and thick plaque is not a problem with 0.25 mL.

Figure 1   
Figure 1
Penile ultrasound 5 minutes after Xiaflex injection into the plaque showing increased echogenicity from micro-bubbles in the plaque in (A) transverse view and (B) longitudinal view.
Since the volume of Xiaflex is small, it is important to pick the best spot for injection. This can be done in several ways, but we prefer to compare the palpable plaque with the patient’s erection and choose the site that corresponds to the site of maximum deformity. One author prefers to have the patient mark this site with a permanent marker the day prior to the injection so he has the correspondence of the palpable plaque, the patient’s subjective view of the area of maximum deformity, and the view of this area as seen on auto-photography. The other authors prefer to inject a vasodilator (most of time with 0.05 mL of phentolamine/papavarine solution) and self-stimulation to induce erection and mark it with a marker before giving the local anesthetic.

Patient taking anticoagulants
Discontinuation of an anticoagulant or antiplatelet medication for 5 days prior to injection is preferred. If contraindicated (e.g., cardiac stents that require aspirin), we teach the patient to apply a loose compressive dressing and change this daily for 2-3 days to prevent excessive ecchymosis.

To operate or not to operate
Bleeding during or after nocturnal erections can present with ecchymosis (bleeding within the subcutaneous tissue) (Figure 2) or hematoma (blood clots between Buck’s fascia and tunica) (Figure 3). In both conditions, a penile ultrasound to confirm the diagnosis is all that needed (Figure 4). Ultrasound examination of the tunica is operator dependent, and such examinations should only be done if the examiner is comfortable with this. On the other hand, if ecchymosis /hematoma developed suddenly during or after sexual intercourse, penile fracture is the most likely diagnosis until proven otherwise. If penile ultrasound confirms a sizeable tunical rupture, surgical repair is recommended.

Figure 2   
Figure 2
Ecchymosis of penis and pubic area 3 days after Xiaflex injection.
Figure 3   
Figure 3
Hematoma at dorso-lateral aspect of penis 7 days after Xiaflex injection.
Figure 4   
Figure 4
Penile ultrasound 4 days after Xiaflex injection in a patient with hematoma. No obvious rupture/disruption of the tunica albuginea is noted.
Hourglass deformity or unilateral indentation
If the plaque is palpable at the dorsal or ventral aspect, we have injected Xiaflex into the plaque followed by daily stretching with a vacuum erection device with reasonably good results. If only lateral plaque is palpable, we do not recommend Xiaflex injection anymore because we have seen hematoma and herniation after Xiaflex injection in several cases.

Injection schedule
The package insert recommends two injections 1-3 days apart, followed by daily stretching and manipulation by the patient for 6 weeks. In some patients who developed severe skin edema and ecchymosis, we have waited up to 1 week to give the second injection. In some men with small plaque, we elected to give one Xiaflex injection followed by modeling to prevent potential tunical rupture.

Conclusions
If a patient is interested in the most definitive, rapid treatment of a stable Peyronie’s deformity, surgical approaches continue to be the gold standard. However, most of our patients are understandably hesitant to pursue surgery and are willing to undergo the inconvenience of repeated injections to achieve a less invasive approach to their deformities. Our combined experience with over 1,000 patients receiving verapamil and over 400 patients receiving Xiaflex has shown us that these medications can be very successful and satisfying, but rely on (I) careful consideration of the patient’s individual characteristics, (II) adherence to good techniques for injecting and (III) patient’s willingness to comply with their at-home physical therapy. Verapamil is appropriate for less stable disease and in softer plaques, whereas we prefer Xiaflex for more stable disease and denser plaques. We avoid Xiaflex in true lateral plaques (which are very uncommon). For technique, a fanning technique is appropriate for verapamil, administered via a 21 g needle for maximum hydrodistention. For Xiaflex, the needle should remain within the densest portion of the plaque, corresponding the point of maximum deformity, in order to minimize extravasation and subsequent ecchymoses. The best results are seen when patients comply with manipulation of the plaque, via a combination of stretching, gentle bending of the erect penis in the opposite direction of the curve, and massage of the plaque.

Acknowledgements
None.

Footnotes
Conflicts of Interest: The author TF Lue was a consultant to Auxillium Pharmaceuticals, Inc., the others have no conflicts of interest to declare.

Article information
Transl Androl Urol. 2015 Aug; 4(4): 474–477.
doi: 10.3978/j.issn.2223-4683.2015.08.09
PMCID: PMC4708590
PMID: 26812930
William O. Brant,1 Amanda Reed-Maldonado,2 and Tom F. Luecorresponding author2
1Department of Surgery (Urology), Center for Reconstructive Urology and Men’s Health, University of Utah, Salt Lake City, USA; 2Department of Urology, University of California, San Francisco, USA
corresponding authorCorresponding author.
Correspondence to: Tom F. Lue. Department of Urology, University of California, San Francisco, USA. Email: [email protected]
Received 2015 Aug 15; Accepted 2015 Aug 19.
Copyright 2015 Translational Andrology and Urology. All rights reserved.
See the article "Collagenase Clostridium Histolyticum: A Review in Peyronie's Disease." in Drugs, volume 75 on page 1405.
See the article "Clinical efficacy, safety and tolerability of collagenase clostridium histolyticum for the treatment of peyronie disease in 2 large double-blind, randomized, placebo controlled phase 3 studies." in J Urol, volume 190 on page 199.
This article has been cited by other articles in PMC.
Articles from Translational Andrology and Urology are provided here courtesy of AME Publications
References
1. Abern MR, Larsen S, Levine LA. Combination of penile traction, intralesional verapamil, and oral therapies for Peyronie's disease. J Sex Med 2012;9:288-95. Erratum in J Sex Med 2012;9:945. [PubMed] [Google Scholar]
2. Alizadeh M, Karimi F, Fallah MR. Evaluation of verapamil efficacy in Peyronie's disease comparing with pentoxifylline. Glob J Health Sci 2014;6:23-30. [PMC free article] [PubMed] [Google Scholar]
3. Chung E, Garcia F, Young LD, et al. A comparative study of the efficacy of intralesional verapamil versus normal saline injection in a novel Peyronie disease animal model: assessment of immunohistopathological changes and erectile function outcome. J Urol 2013;189:380-4. [PubMed] [Google Scholar]
4. Dhillon S. Collagenase Clostridium Histolyticum: A Review in Peyronie's Disease. Drugs 2015;75:1405-12. [PubMed] [Google Scholar]
5. Gelbard M, Goldstein I, Hellstrom WJ, et al. Clinical efficacy, safety and tolerability of collagenase clostridium histolyticum for the treatment of peyronie disease in 2 large double-blind, randomized, placebo controlled phase 3 studies. J Urol 2013;190:199-207. [PubMed] [Google Scholar].
So Verapamil suppose to work on non curvature deformities

 7 
 on: Yesterday at 10:23:13 PM 
Started by Lostandsad - Last post by Bud luck
I understand how you feel. This disease affects everyone differently. Urologists don't agree on what is the best treatment, that makes our disease more confusing

 8 
 on: Yesterday at 09:46:44 PM 
Started by Hawk - Last post by Anbil
Dr Trost is an all around amazing human being and I had the experiencing of exchanging a few emails with him that showed a very high level of compassion and expertise.
 

 9 
 on: Yesterday at 09:42:16 PM 
Started by Lostandsad - Last post by GaussRifle
I totally understand what you are going through. I think we have all been in your spot. The key is to keep pushing ... sure you will have your dark days... I do too !  but keep pushing. If you think pmp is too much work,  shift to RestoreX for traction only a total of 1 hour needed a day split into two 30 minutes sessions.


And don't be too hard on yourself, treat yourself from time to time for fighting this crap. Remind yourself,  that you are doing everything in your power and your goal is to do treatments from least invasive to most invasive. Work your way up the treatments to find one that satisfies you and remind yourself this is a sprint not a marathon. For any treatment to work you gotta give it time and persistence.

Sending  prayers, good thoughts  and Strength 💪 your way.

 10 
 on: Yesterday at 08:42:32 PM 
Started by Zlobenia - Last post by Lostandsad
Looks like your plaques reduced in size then? If so, that’s fortunate, sorry that you’ve had penile size loss and curvature though. Is your blood flow and rigidity good enough for penetrative sex?

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