Peyronie's worse? still confused, scared

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Ralph72

I was diagnosed with Peyronie's a couple of months ago, they found what they called a distal mass, just below the head. I am able to feel it, it was a small lump that almost felt like it was right in the urethra. I then very soon developed a severe urethral pain, difficulty urinating, red swollen meatus. Doc said he thought it was unrelated and even said he didn't think it was an infection. I went back and begged for antibiotics as the pain got worse. Two days of antibiotics and totally cleared up the urethral issue. Negative on STD panels. They gave me low dose Cialis for BPH.

I was eventually given a doppler ultrasound, at which time the tech didn't go all the way to the end with the scan. I told her the mass was at the end but she said that they are just checking blood flow and can tell from "anywhere." Sounded very wrong to me. Well, obviously their results said "no plaques" and of course... I'm certain it's because she didn't go to the end.

I was exhausted at this uro with trying to get him to care about my condition. I can now feel two additional lumps, one near the original, and one now on the other side of the urethra, and one that seems to be on the top side. My anxiety level is through the roof, curve is only slight, but pain during sex and pain when flaccid. What is odd to me is that they seem to be so close to the urethra, all the way in the center and feel like "ropes" if that makes any sense, following the urethra down, more like hard lines than single lumps. I had a very bad catheter once after a back surgery, and have had a sound in my urethra when I was younger. So I wouldn't be surprised at a stricture or some kind of scarring there. If I'm honest, I was rough/reckless in my youth and didn't know it could cause Peyronie's later. But they don't seem to be able to tell me if the lumps are related to urethra or not. I was hoping the scan would show something more about that.

They told me about a VED and I ordered it/tried it a few times, but honestly not sure if it's helping or hurting. I take Arginine, D, Cialis.

I then got a second opinion with another uro who found same lump(s), prescribed Pentox, but was unsure if it will interact with my anticoagulant. Come back in 3 months he says... ugh. In the meantime more lumps. I am beginning to feel like no doctor even wants to bother with this disease as their approach so far has been "well once it deforms you completely and ruins your life you can consider surgery." I'm constantly terrified and basically feeling like my sex life and relationship chances are going to end completely, and to say it's a dark feeling is an understatement. I am having what are probably minor problems at present compared to some people here, and it's already killed my confidence and sex has been pretty unsatisfying, ED is definitely happening.The idea of talking about it with women seems impossible and just like a massive obstacle. I've already had to tell a partner I'm dating that I can't really do what she wants me to because of the pain, and that I'm not into rougher sex. Seems to be ending the relationship pretty quick. Which in this case, is probably for the best anyway, but the future of relationships seems rather bleak.

The uros seem to have absolutely zero concern about any of the concerns I have. I want the best chance possible to intervene/halt the progression. My questions:

1. I read on here about "resting" the penis and not having erections, sex or masturbation. I also seem to read elsewhere about getting erections being helpful and sex being ok. I'm confused as to which is correct, the advice seems so contradictory. Doc says "erections and sex are fine" and I am really not trusting anything the docs say at this point, sadly.

2. Pentox, according to my cardiologist and uro don't interact badly with Eliquis ( a new anticoagulant.) However i do read things that seem to indicate a bleeding risk. If this drug has any chance of helping me, i want to take it. I have to take the Eliquis for several months. I don't want to wait that long. If the risk is in actuality very low, I don't want to be too cautious and pass up the chance at it helping.

3. They have suggested Verapimil gel. Is there any validity to this at all? Feels like a totally blind swing in the dark.

4. Should I consider the verapimil injections? Like I said, I have so little trust in these doctors that I could imagine these injections making things 10x worse. They also seemed to say they only help pain and don't stop progression.

5. Do other people have these " bump ropes" that feel very close to or in urethra? I am wondering if this is common.

Thanks for your time reading this and for any advice.






NeoV

If you're in the US you have access to some very good Peyronie's specialists.

I don't really recommend verapamil injections, and "sex is fine" is the stupidest thing I've ever heard. You do want to have sex, just as an injured bodybuilder still wants to and should work out, but the frequency and the way you do it is completely altered. Be careful, and if you have a girl lay off masturbation and just have sex with her and always be careful.

It can seem impossible, but you have to try to laugh it off with your girl and almost be able to tell her with a smile that your dick is injured. As in "sorry babe not going to be rough with you". I know how hard this is to do, but this is how Peyronie's tests us.

I'm hoping someone else will respond about lumpness. Distal masses in the urethra that effect the meatus should have a biopsy always if you ask me. Verapamil gel would be fine to try but it doesn't have much support. I also seem to have lines near my urethra, since the only part that bends for me also is the urethra.

Is the anticoagulant something you must take?

I recommend you try CoQ10 at 300mg per day as per the famous study. I personally never took pentox beyond 3 months. If you are having bending I recommend traction. Try not to give up hope man I know how painful this all is.  

Mending the Bend

Ralph72 -

There are several things you can do to try to halt progression and improve your condition. To answer your questions:

1) If you do have sex or masturbate, do it gently. Be especially careful with yourself until you have a full erection. Roughness with a semi-erect penis is one of the suspected causes of injury leading to Peyronie's. It's what caused mine.

2) As an alternative to Pentox, try 3 x 1000mg ALC, with food.

3) Don't waste your time with topical Verapamil gel. There is very little chance that it will make it to the scar. If a Uro will do it by iontophoresis, might be worth a shot.

4) Avoid Verapamil injections. Very painful, and many members (including myself) have experienced marked worsening of symptoms from them.

5) Those "bump ropes" you refer to are very possibly small scar nodules. I have a few round bumps within the larger area of my plaques. They feel like knots.

Definitely start yourself on traction and the oral supplements recommended here. Find a good Peyronie's specialist and get yourself properly evaluated. You can get much better if you address this now and have patience. If you have insurance, and you're a candidate for Xiaflex (not sure because of the urethra involvement), then that could be an option down the road.

Good luck.

Ralph72

Thank you, I will look into ALC. And yes, the anticoagulant I have to take at least for the next few months. I have supposedly seen the "specialist" in my area, but from what I read, they all just kind of do the same thing, recommend Pentox and VED, offer Verapimil. If sex is a bad idea, I'm wondering why neither uro has said much about it. Discouraging.

So, the idea with no sex and masturbation is not to injure, or not to ejaculate? I am not rough on myself during masturbation, but haven't found a way to avoid roughness with the current GF, hence the impending split. But if ejaculation is a problem, then that's another story. Also, I wonder, wouldn't the pressure from using a VED be inflammatory to someone in the acute phase? So is the consensus that erections are good, but just don't ejaculate? I don't know about traction so I'll read up on it here.

NeoV

Mending, the ALC study was compared to Tamoxifen, not Pentox. ; )

Ralph, ejaculation should be fine unless you notice other issues coming form that. Personally ejaculation seems to cause me pelvic floor problems which can cause the penile smooth muscle to also end up in bad shape from what I understand, and from what I read in one study. Follow your body, but the general idea is that you should stay hard. Avoiding ejaculation and stimulation altogether will raise your bodies ability to produce harder erections, so this is one of those paradoxical things -- limit stimulation and ejaculation in order to have harder erections. In general, don't over do it, and allow yourself days where you do not touch your penis much (no erection checking).

Having Peyronie's tends to cause us to check our erections daily, exhausting our bodies ability to be naturally aroused. It also keeps the inflammation trapped in the penis and keeps the prostate inflamed, some of this inflammation is the bodies natural response to ejaculation.

You could try the non-prescription approach if you like, which is to buy a traction device, a VED, and order CoQ10 and ALC. Personally I do not own a traction device as manual stretching has worked amazingly in my own unique case.

Mending the Bend

Quote from: NeoV on September 30, 2014, 10:23:49 AM
Mending, the ALC study was compared to Tamoxifen, not Pentox. ; )

Neo - yes, you're right! Sorry...confused Pentox with Tamox for a moment there. I've removed the reference from my post. As I am not on Pentox, I can't give any personal input.

In any case, Ralph72, ALC is good to add to the regimen. Traction works, but you need to have patience with finding the right approach for you. It can be very clumsy, awkward and uncomfortable at first.

Ralph72

Thank you I will look into that. I am pretty sure I wouldn't be able to get away with a device under my pants at work, or be able to tolerate it, I have enough trouble focusing as it is. NeoV I am interested in what manual stretching is? I also don't really know what you mean by "erection checking," do you mean self-stimulation?

If I use VED, is there any kind of consensus on whether use during acute phase is a risk to make things worse? Or is it just case by case? From what I am reading, the VED is not supposed to give full erection and so that may have been my first mistake. I didn't feel overpumped, just naturally happened.  

Ralph72

I've definitely noticed a fairly rapid increase in bumps/cords in the last few weeks. Now I'm sitting here wondering if supplements, Cialis, VED, etc. are making things worse. I have to be deadly honest: Reading all of the threads here is really tough for me, so many directly conflicting opinions, with many saying VED works or made them worse (and then those who say it only got worse because you over-pumped) People saying Pentox helped OR made them worse, Those claiming that diet is the only thing that helps... etc. I can understand if an approach doesn't seem to help much, but I'm just feeling like there are so many claims that some of these courses caused their Peyronies Disease to accelerate/worsen.

Maybe even more confusing are the radically conflicting opinions about sex/masturbation, ranging from "sex is ok as long as you are careful" to "erections are good but don't ejaculate" to "the only thing that works is to rest your penis for years." I feel like my pain increases with ejaculation but honestly the idea that my sex/romance life is over and all I can do now is eat Vegan and exercise a lot is pretty much a sentence to crippling suicidal depression and if the thing is going to end up useless anyway I'd rather use it while I still can.

I realize this is the nature of a condition that doesn't have a lot of funded research to point to. I just feel like I'm looking at all these things that are potentially helpful OR damaging. I realize no one can really know "what" exactly made their condition worse or better, I just wish there were some kind of way to know if things like VED and Pentox have any real benefit/harm. The more I read, the more it seems like there is absolutely zero evidence to conclude anything at all about any of these therapies, and can understand now why the Uros say "we don't know of anything that really works."  So maybe this is just a bellyache, but if anyone knows what I mean and can help to ease the confusion/panic please chime in.

Jonbinspain

In my opinion, neither VED nor Pentox, used correctly, will do you any harm. I can see that they may be of no help, but that is the nature of this disease. It really is a case of trial and error until you hopefully find what works for you individually.  

nemo

I think what you're seeing is simply guys who enjoyed some degree of improvement while on a particular treatment tend to tout that treatment (or diet, or whatever), with almost religious fervor, as "the way."  Conversely, guys who suffered an advancement of the condition while on a particular treatment tend to assign blame to the treatment, not the natural progression of the disease.  

Unfortunately, each of us has to wade through this and assess what we're most comfortable pursuing.  In reality, there is no silver bullet, but I don't think any of the popular treatments are inherently dangerous, unless you over-do it (as with the VED).

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Ralph72

Yeah I imagine there's just no way to know what helps you without conducting your own double-blinds.  Thanks for the reassurance.

welshwales

I whole heartedly agree with Nemo. There is no real way of assessing the information and advice on treatment provided by guys on an internet forum in any kind of scientific way. We just have to muddle through, use our own common sense and take what we read with one very large pinch of salt. Having said that, there are certain themes which generally appear to be pretty stable. So by disregarding the outliers, the extremes, it is possible to take a 'general consensus' and attempt to work with it.
What I have taken from the forum personally is moderate VED, pentox and low dose cialis appear to have very few notable side effects, and a high number of encouraging testimonies. So if you have a uro which will advise you on their use and/or give you scripts for the meds, I think it is well worth trying them as long as you have no pre-existing medical conditions which could be complicated by these therapies.

Ralph72

These are the therapies I'm trying, with some other supplements as well.

And today, hot peppers. By accident. Posted in another topic.

james1947

I also agree with Nemo post, for me also as welshwales stated:
Quotemoderate VED, pentox and low dose cialis
Was the treatment that helped and helps to still be able to function sexually.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Peyroniedevice

I was using Peyronie device ...helped me to cure my bend penis .But  you should also consult with your Dr

james1947

Peyroniedevice

What king of Peyronies device you were using?

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

Quote from: Ralph72 on October 13, 2014, 10:24:36 AMI just wish there were some kind of way to know if things like VED and Pentox have any real benefit/harm. The more I read, the more it seems like there is absolutely zero evidence to conclude anything at all about any of these therapies

The below treatments are backed by successful studies on Peyronie's:

Pentox
coq10
acetyl l carnitine
traction
ved

Not anecdotal evidence, not peoples opinions on a forum. They are backed by clinical studies, all of those studies are on pubmed, google or in threads on this forum.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Peyroniedevice

Quote Removed By Moderator:

traction device  i was using  .
Justin