TOPIC: Peyronie's Disease & PMMA Journal

I haven\'t used rogaine.

Here\'s a week 4 pic. Abstinent still... too lumpy and full of cord-like things. They are hard to see in this pic, though.

I edited out some of the emotional ranting, but I haven\'t been in the best spirits lately - to be brief!Oh hey - I have the same shorts on from five years ago!! HA. Check this out... My before-antyhing-ever-happened penis vs. today. Well, wow - I am thicker now...though kind of a mess compared to my old penis which naturally didn\'t have lumps inside of it. I can\'t tell if the length is different but I think it\'s a little shorter due to the peyronie\'s and surgery (which is normal for that surgery). Anyway, wow I didn\'t realize how thin it was even before I did anything.

Hello all, I just started experiencing some problems with my penis and I\'m pretty sure its peyronie\'s disease so I was wondering if you guys had any good advice on how to treat this disease in its early stages. First I\'d like to mention that I am 31 years old and I\'ve never really had any serious problems with my penis until about 2-3 months ago when I was masturbating somewhat aggressively (but not too much) and felt a weird pull back of blood from my penis back inside of me. It was almost like the blood keeping my penis Erect rushed back inside of me and I lost my Erection within seconds. Since then I have felt a weird pain on the lower left side base of my shaft and masturbating has become difficult and sex seems impossible. My penis isn\'t that large (around 5\'7) but I am quite thick and its still becomes Erect and I don\'t have any bending in the shaft but the shaft isn\'t completely straight either. Its basically a straight penis that turns about 20 degrees to the left. Its always been kind of turned that way but I feel like its a little more noticeable now. Anyway after inspecting it I cant feel any hard pieces of plac but I do feel some weird dents and lumps on the lower left part of my shaft. I went to my Urologist and he recommended some vitamin e and steroid cream, I haven\'t applied any steroid creams or taken any medication, but I am taking vitamin e every day. Needless to say I\'m scared to have sex and I\'m not sure what else to do. Please, if you guys have any advice it would be greatly appreciated.

Vitamin E and steroids do not treat peyronies. They are treatments from the 70s that have proven ineffective.

Tretment options for peyronies are:

Oral Trental (prescription)
Use of a traction device to stretch the tissue (while on trental, so it works better)
Injectable Xiaflex (but not if you do not have plaque - since there is nothing to inject)
Surgery to correct the curve

You should see a male sexual function specialist - not a general urologist.

You\'ll get a lot more advice on this forum: www.peyroniesforum.net/

5 Weeks

I have lumps forming under my shaft, pushing on my urethra. When I finish urinating, I\'m not apparently finished because urine keeps coming out. I thought the pain/pressure feelings were due to the stretcher, but it\'s due to this lump that has been forming. When I pull these nodules off the urethra with my fingers like this pic, the pressure goes away. Also, this is on the left side - where the majority of lumps are.

Here\'s wade\'s response to my entry sites I posted in an earlier post. I am posting this because a number of people thought it looked normal... and I was overreacting (more so in another thread than here). So, trust me it\'s not good. Or, don\'t trust me and see what Wade has to say. He saw more pics than I posted here also. I guess maybe some of you were trying to be helpful by saying it looks fine - but you don\'t need to do that. It is what it is...and I am trying to treat it as best as I can given the circumstances. Also, the population I am dealing with (gay men) who have seen 100s of penises up close...makes it much more difficult to have any abnormality not scrutinized. I can\'t just put a condom on and go for it - 90% of the time there is oral sex involved. And, most guys are morons - I\'ve had gay guys think the freckles on my dick were herpes (in pics).

The only place that the nodules went away is where I got 2.5 mg kenalog at day 10 (a small dose). Everywhere else, they got bigger or harder. The reason I believe in early intervention is described in a number of journal articles and also here: www.exploreplasticsurgery.com/tag/kenalog-for-scars/ where Eppley says \"To be most effective,5-FU injections need to be done when collagen and scar formation is actively being produced.\" I know that another group of dermatologists and surgeons (and many here) believe in \"no intervention until 6 weeks when things settle\" but I think you have to consider what PMMA is doing...by recruiting fibroblasts and turning into permanent scar tissue (type 1 an 3 collagen) quickly. Yes, it smooths out and softens - but it can stay in a bad configuration, like on the left side of my penis (which was always a more challenging side in R1 and R2). The right side is basically fine, except for 2 entry points that are shallow and not big mounds. I know from prior rounds that some nodules will go away. Other things will get softer, but they will always be there (e.g., circ ridge). There is a risk/reward to anything... risk/reward of PMMA exists and risk/reward of kenalog and 5fu exists as well. To ME, the risk of kenalog vs. the risk of a permanent underside collection of tissue like JonThomas had was a no-brainer. Now that I have nodules pushing on my urethra, they will have to be addressed as well if they continue to worsen. I am not waiting until it feels like I have to pee all day. There are very effective treatments for PMMA nodules out there with minimal risk (also works for sculptra...which has a similar mechanism. Kenalog and 5fu are the main treatments for these things).

There\'s no size increase...but I couldn\'t care less about that at this point given the 10+ nodules I have all over the place.

What part was Wade\'s response?

That\'s his response in the pic (phone screen shot). I just erased my real name off that and underlined part of it.

I am very surprised the lumps are touching the urethra, I thought PMMA was not injected along the underside of the penis but I guess I was wrong.

There was a guy fran from berlin a few years ago who had several PMMA lumps successfully removed surgically, but I believe they were granulomas and required several surgeries.

I don\'t think any MD would offer to do surgery before 6mo. And it probably is best to give the situation some time to see how it pans out. It may improve over time. But I would not rule this option out. Although time consuming and expensive it is probably low risk vs the Kenalog injections.

I agree. If you feel it is a problem it is a problem. What anyone else thinks is not relevant. Stay strong and keep us up to date. I am sure you will eventually find the right path.

Thanks bigben... I just wanted to clear up everything from my last posts. It\'s hard to show this Nodule in pics, but you can see that some of the PMMA from the lower left side of the shaft is missing. It\'s just kind of empty, but Dr. C would have injected into that lower / side area. think the product drifted away from there (leaving the gap in the pics) & then moved down somehow, creating that Nodule at the base on that side of the urethra.

When I talked to my uro last, he said he has mostly dealt with fat transfer complications and my situation wasn\'t as bad as those. He thought it would also even out with more time, though I didn\'t have the urethra lump then. He said he would start with Kenalog, and he uses up to 10 mg in fat nodules. The one thing I am confused about is where you can cut into the penis. I asked what happens if it gets worse, and he said \"we\'d have to do a deglove\" and I was like - what? Over a couple lumps? No way. That deglove would make things worse. I don\'t know much about the nerves and blood vessels in the shaft of the penis, but surely you can make a small incision and cut out a Nodule...I think? The problem is that the nodules are tethered to the rest of the PMMA, but then he\'d just need to cut them out since they can\'t be pulled out with tweezers exactly.

Kenalog is a steroid, and it\'s low risk if small doses (1-2 mg) are given 1-3 times. For granulomas, I think 10 mg is used (or more). It blunts the immune response, so the reaction to the PMMA & scar / collagen creation is going to slow down and potentially reverse. The doses have to be watched closely and it has to be injected deeply to avoid Atrophy (though the penis has no fat, so I am not sure about Atrophy). Docs don\'t like using this treatment until a couple months are past because the rest of the tissue might change. If there is Atrophy, the Kenalog can sometimes be diluted (inside the tissue) with saline. 5fu is cancer chemotherapy in the 500-1000 mg dose. In doses under 150 mg 5fu (intralesional) it won\'t have a systemic effect. Most chemo is aimed at causing cell death, and 5fu is very complex, but it basically makes scar tissue recede slowly. 3-5 sessions are required. The two have been used together for PMMA nodules and have been effective in the face. The last approach is subcision, where the cannula or needle is used to break up the Nodule. 5FU is probably the lowest risk / highest reward approach (with a tiny amount of Kenalog)...though most dermatologists don\'t know about it. Subcision can work, but it means going back to Dr. C and sometimes it can cause more inflammation.

Sorry I\'m not so concise at the moment. But, hopefully this journal is helpful to people who have the same issues.

Thanks for the detailed answers, your perseverance will pay off. I have read reports of skin Atrophy with the Kenalog, all skin has some fat which can be thinned when the kenolog touches it leaving it potentially too thin if the Kenalog dosage is large. This would be a very serious if the skin became too thin for sex because it would require a skin transplant which could negative effect function, sensation, ect. (There was a guy here who had a full skin transplant a few years ago in Irvine with Dr Gelman and all I can say is wow !!)

Frans surgeon did not deglove, he simply made small incisions and cut or burned the lumps out, and sutured it back up. He said it was a quick procedure but took a few months to heal. Cool hand luke also had some lumps removed by cassavantes (he had very detailed pics up at one point, not sure if they are still there). I am sure this would be a walk in the part compared to the peyronies surgery you had. Since a Urologist is injecting the Kenalog you are probably in good hands. I think the challenge though is the Kenalog will definitely dissolve fat lumps from a fat transfer. However in a PMMA patient the Kenalog will not dissolve the PMMA beads, it will only reduce the size of the tissue around them. After a few weeks the Kenalog is gone and the beads are still inside. The likely have moved but they are going to begin to interact with the surrounding tissue again. Hopefully they would spread out so the new tissue growth they produce is not concentrated like the original lump. So with the Kenalog you are essentially getting a second chance to re-mold the PMMA, but as you know, too high of a strength is potentially risky.

Thanks for keeping us posted !

Thanks for the info about frans and CHL. I have to check out their journals. I wasn\'t sure how CHL had his issue resolved, but I remember seeing the drastic improvement

Yeah, the story Basque posted was horrible. What a nightmare. (This is why people probably think I should shut the F up with my lump neurosis...and I get it.) Anyway, it sounds like Gelman had to do a graft there because there was no healthy tissue left. Elist already did multiple (poorly performed) surgeries and this led to antibiotic-resistant infections...all of which kept adding to the destruction of the tissue and compromising the blood supply and viability. I can understand why he needed a graft. I read he had a few kenalog shots by Elist that didn\'t do much (which isn\'t surprising given the level of disaster Elist caused - after of his dermal graft by the Russian surgeon...might as well have injected saline). For someone to damage themselves severely from kenalog, they would have to inject 100s of mgs. Collagenase (discussed below) is another story. Anyway, this is not to say I am trying to be a kenalog advocate by any means. It can work wonders, but it can do some bad things. So, here are some examples:

This is what 8 mg of kenalog can do to a face.


Here\'s what 40 mg kenalog can do to a butt,if not injected deeply into the muscle.



The key is to get it IN the nodule and keep it in relative proportion to the nodule (1-3 mg, so 0.1-0.3 cc Kenalog-10). Once it leaks out (which it often does upon withdrawing the needle) then you risk a dent in the skin. A high gauge (higher gauge = thinner) needle is important to use as well - but these needles can literally snap if you try to get them in dense tissue...so probably 21-25 gauge is the right size. My old Peyronie\'s injections used an 18 gauge needle so it could pass through that plaque (the pain when the lidocaine wore off was insane because my tunica was basically stabbed for 10 minutes straight. These were the verapamil injections described early early on in my log. They don\'t do anything for Peyronie\'s and nobody does them anymore since Xiaflex was approved 2 years ago).

I had an acne cyst injected with kenalog when i was 20, and the derm injected it in 5 different spots. One needle pass left a small dent for about 5 years (tiny, really). Similarly when I broke my nose, they injected kenalog all around the nasal bone...and again, one small spot atrophied - for another 3-5 years. Neither was noticeable to anyone but me...and unfortunately I don\'t know the concentrations or mgs of those shots. But, it definitely can happen. Nerve damage or sensation loss is extremely rare - and probably due to the needle or the diluent creating too much pressure (which is why, I think, some use kenalog-40 so there\'s not as much saline).

To put it in context: Depo-Medrol is less potent, and Celestone is more potent - and also not particulate (but it\'s \"runny\" so not good for derm injections - neurologists like it for epidurals). Kenalog is particulate, and the particles are left behind for a while (nobody knows exactly how long, 1-2 mos is the guess). So, these crystals are what is causing this atrophy...sometimes right away - sometimes 2 months later. They can be washed out or diluted in the tissue with saline if there\'s a risk of atropy. There is also a substance called collagenase (xiaflex) that is $3000 for 0.5 mL and will rip right through the tissue by cleaving the collagen molecule at distinct sites. Kenalog is very different since it is anti-inflammatory and slows down the immune response. It also blocks cell signaling leading to atrophy in some people. So, in relative terms, Kenalog isn\'t nearly as potent... but collagenase is used for dupuytren\'s contracture and Peyronie\'s disease scar tissue cords and plaques...not approved for anything else yet. It takes 8 injections into the penis to cause some breakage in the scar plaque, but it isn\'t 100% reliable. My doctor said about 1/2 of xiaflex patients go to surgery due to poor results - and that is straight collagenase! Similarly, kenalog atrophy is variable between patients to a large degree as well.

The most promising approach is a 5fu mixture with a small amount of kenalog in it. This will be synergistic without the atrophy risk. 5fu alone is better if the scar is not fully developed yet.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3865975/

www.realself.com/question/5-fu-mixed-kenalog-effective

I think 2 of the nodules I have are simply pmma balls (rock hard and small) - and nothing is affecting them. They might have to be excised if nothing else will work because they stick out and are almost sharp to the touch. I\'m going to wait on those - but they haven\'t changed at all so far. Some of the other nodules are more flexible and larger (like the urethra one) - so they might be amenable to kenalog and 5FU. The underside nodule I got injected of at 10 days was very firm but 2-3 mg of kenalog made it dissolve within 7-10 days, and now I am 3 weeks post with no atrophy yet. There may be some increased vasulature, but that could be in my head because I don\'t think that would develop so fast.

If I do have negative side effects from that I WILL post it. If I see anything, though, my doctor said to have saline injected right away to get rid of the crystals. My guess is that telangiectasia would be the main risk in the penis...due to the vascularity there. PMMA causes this a little bit too, I\'ve noticed - 6 months down the road (it just means more capillaries that are visible - can range from nondescript to very obvious)

So that\'s today\'s dissertation...lol. Honestly, I hope this info can help someone later on who is facing issues related to this...not sure if they\'ll find it buried in my journal but maybe it\'ll show up.

Very interesting info. thanks. I think Dr cassavantes was using 5fu in the past, but I have not heard anyone mention it recently. Sounds like a good option. Wow the xiaflex almost sounds more expensive than surgery, and only a 50% success rate.. You show some good examples of how Kenalog fat loss seem to be very specific to the patient.

Restoration wrote: Vitamin E and steroids do not treat peyronies. They are treatments from the 70s that have proven ineffective.

Tretment options for peyronies are:

Oral Trental (prescription)
Use of a traction device to stretch the tissue (while on trental, so it works better)
Injectable Xiaflex (but not if you do not have plaque - since there is nothing to inject)
Surgery to correct the curve

You should see a male sexual function specialist - not a general urologist.

You\'ll get a lot more advice on this forum: www.peyroniesforum.net/

Thanks very much. ill look into this.

6 WeekI have lumps all over the place. I didn\'t mark all of the lumps in the pics, but since most are palpable (not that visible) - I marked most of them. There\'s no size increase. FG is back down to 4.5 (same as post R2). EG back down to 4.75 circ, 5.0 MSEG, 5.0 BEG. I wonder if I\'ll actually LOSE size from R2 because the treatments to get rid of the lumps (Kenalog, 5fu) can thin the tissue that is there...and there\'s really no other way to get rid of these if they don\'t go away with time.

So... Here\'s what $3500 looks like. Actually, it\'s more like $6500 since I gained virtually nothing in r2 either. I honestly cannot believe this is what happened in R3 with Linnea Safe. There are so many things I could\'ve done with that money rather than screw up an already good outcome.

The Nodule that was pushing against my urethra is nearly gone after an injection of 2mg Kenalog (in Kenalog-10) followed by an injection of 15 mg 5-fu (as 50 mg/mL) with lidocaine a few days later. It\'s down to 1/3 the size after about 8 days. I had to do this because it constantly felt like I had to urinate, and other times- I would \"finish\" urinating and then continue to pee all over the floor. All that stopped now.

That has to be really frustrating, I can\'t even imagine. If memory serves, didn\'t you stay in TJ for a few days after your procedure? How many times did you see Wade for aftercare? it just seems even crazier if both you and he were massaging. Has the office given you any feedback? What\'s your next plan of action?

I will say this, in the end, any problem or imperfection is always way worse in our own minds. I avoided sex for 5 weeks because of my circ ring. I finally couldn\'t wait longer and had a whole backstory planned about it...and to my surprise it wasn\'t even mentioned. Like not even a passing thought. It was a hookup and 5 min after I left his place, I got a text hoping for a repeat.

I know it\'s not ideal, or what you hoped for, but just remember that we are our own worst critics. What\'s bad for us might not even be noticeable to another.

Wish you all the best dude.

Thanks WGB - yeah, it is. If I never did this round, I would\'ve been fine...and the same size. It\'s nuts.

I had it done on a Tuesday at 4 PM and then I left on Friday at Noon. So, Wade saw me 2x on Weds and 2x on Thurs + once on friday (when you were there too). The only issue I had was a dense layer on top that didn\'t want to be pushed to the base. Every time I went back, that was the only thing Wade really commented on. I massaged it constantly & used the stretcher, just like R1 and R2. The dense area on top did form a little lump (an arrow points to that) - but it\'s not visible and not really palpable Erect, unlike the others.

The bizarre thing is that if my body is allowing these nodules to form, why isn\'t it allowing growth everywhere else? It\'s not like I\'m \"PMMA resistant\" or something. I wonder if I should\'ve put tape over my entry points & not let the PMMA ooze out for 4 days. I think it must have dripped out and gotten trapped in the entry points. 17 mL is really not a lot of fluid...and if 3 mL drip out, and each Nodule was created by 1-2 mL of trapped product, then there\'s no more PMMA left to cause the penis to grow. Who knows. That\'s all I can think of in terms of explaining this... that perhaps my skin is too tight and my existing layer of PMMA trapped the linnea safe in the entry points as it was trying to drip out altogether. Maybe the Dr. N / Dr. Camacho\'s 1-entry point method would\'ve been better for me too.

Linnea safe is less dense than metacrill, so possibly it doesn\'t stay in place as well....but these are all just guesses. I didn\'t have any real growth from R2 of 30% metacrill, but the nodules in that round were small and went away.

The thing that kills me the most is the money now too. I am sure I\'ll get this looking normal again, but the time & expense of all of this has been incredibly high. I put a lot of things on hold to \"finally fix my Dick\" financially.