Worried Peyronies won't get better, or worse, it's something else...

[Anxietyguy10]

Hi all,

I'm new to post to this forum, but have been reading it for a long time. My initial issue started in October 2014 when I was 29. I started getting pain near the head of the penis during erection that would eventually dissipate. After a few months the pain continued to worsen and in Jan 2015, I noticed a small lump near the pain. Diagnosed as Peyronie's by a urologist and given recommendation to take Vit E, which didn't work. Fast forward to August 2015 and lump near base of penis found, though not painful, a dent appeared. Potential candidate for Xiaflex established. Fast forward to December 2015/Jan 2016, and due to some hourglassing near the tip, found two lumps on side front of Penis. Now March 2016, Urologist does ultrasound to confirm Peyronies with Cavernosas healthy. However I also noticed a hard lump on SIDE of penis now. This brings the lump total to 5 that I can feel.

1) My anxiety is leading me to try to understand why this is happening and getting worse. Is this my fate? Have these little nodules pop up continually to make elections not as full, deformed, and painful?

2) Is it possible this is a differential diagnosis? Why is there a lump on the SIDE of the penis? I'm lost, and even though Urologist seems to think it's Peytonies, I'm scared I'm letting something more ominous grow in there.

3) Note that I've started to improve my diet by Paleo and juicing with Ginger veggies, courtesy of Ashtown's results. I'm also not rough on my penis and actually have tried NOT to touch it much for the past few months due to the pain.

Any ideas anyone?

[Jimbruski]

Anxietyguy10,

You've got quite a bit going on and I'm not qualified to diagnose your condition.  I do think that you need to make an appointment with a respected urologist and receive an official diagnosis.
There are a list of uro's on this forum if you need some help finding one.

Use that as your starting point and be sure to update the forum members.  We're always curious and learning from others diagnosis and recommended procedures and most importantly success stories.

Good luck to you and don't forget to update us.  Oh, and welcome to the forum.

Jimbruski

[Jonbinspain]

Anxietyguy;

Multiple plaques are not uncommon in Peyronie's disease.

However, Vit E will do very little to help. I would strongly recommend  that you find a Urologist who is far more Peyronies aware and proactive.  

It's important that you start treating this now. I would suggest that you read about Pentox, low dose Cialis - my own Uro believes Cialis can be helpful in treating Peyronies. Xiaflex may also be an option for you.

look at the sections on VED and traction too. Any questions, just ask.  

[Anxietyguy10]

Thanks for the responses JimBruski and Jonbinspain. Having painful and deformed erections without improvement something I struggle with mentally. I've seen two Urologists since this began, the second is the one who performed the ultrasound.

I also wanted to note that this began after a bout with Prostatitis.

I've suggested Pentox to the Uro and he recommended Xiaflex for the initial plaque and was pleased to see that it hadn't calcified. His experience he didn't recommend Pentox as he felt there wasn't enough evidence to support, and from the forums it seems hit or miss.

Has anyone had success with anti-inflammation foods? Ginger, green tea, grape seed extract?  

[NeoV]

All of those things work to reduce inflammation, but it's hard to notice a difference in how your penis feels even by taking them by the mouthful. Pentox is no different, as it has clearly been shown to reduce Tgf-beta.

There may be some members, including me, who will tell you that after daily drinking ginger tea, consuming bowls of blueberries, taking nitric oxide boosting and anti inflammatory supplements, and reducing sugar and alcohol intake, that their symptoms improved.

If you endorse the idea of diet and supplements for Peyronie's, you have to endorse the idea of drugs like pentox and cialis too, since they have been shown to work in effective ways while supplements generally have not. Personally I choose not to take those drugs, and I also prefer supplements or foods.

The real issue is that no diet or drug can actually stop or reverse the disease reliably and in a short time period, so if your doctor does not find any worth while, then all that is left is injections or surgery.

Since injections and surgery aren't exactly reliable either, and should be saved for last resorts, we tend to rely on the drugs and supplements as well as physical therapies which are VED and traction.

I highly recommend traction and VED therapy.

As for your diagnosis, it is not impossible for various urologists to be wrong. Some research I read noted that ultrasounds and urologists generally cannot tell the difference between vascular, lymphatic, and fibrous tissue. The idea is scary to think that we could all be wrong, but it is possible, just not a good idea to rely on.

It is likely that you do have Peyronie's, and my rule is that any bending is always "Peyronie's," regardless of scar tissue, and should be treated as such. This means the physical therapies and the diet, supplements, or drugs. Basically this means that regardless of your symptoms, penile health is improved via the same means. Be it inflamed lymphatic vessels, inflamed or damaged veins, there is no consensus on effective treatments for these besides improving your penile health in general. No urologist I know will tell you to drink ginger tea or eat blueberries, but we know from studies that these things should help. Interestingly, even pentox was shown to help rid a man of penile thrombosis in a study.

As far as your symptoms being something else, there are no other known illnesses that cause those symptoms, unless we are dealing with something very rare such as penile cancer or extreme cases of gout causing build up in the penis. Even in these odd scenarios, the treatment would also be mostly the same. It's very unfortunate that the current medical norms are so poorly designed to treat male sexual health problems, and this is part of a larger stigma on male sexuality.

It is possible that there are indeed better ways to treat particular phases of Peyronie's, vascular issues, or swollen lymphatic vessels, or even that there are certain diseases effecting a man's penis that that are not yet discovered, but there is nobody in the world I know of who is on to what these treatments or hidden diseases may be.

It's very frustrating to not know, it drives me mad too, makes me feel guilty, but it's neither your fault nor mine. It's our society, or medical establishments, which are shaped by our values. The best we can do is use the limited information we have and take a stand for what we value. Give your urologists HELL, and in the meantime use the treatments you suspect will work based on the information we have. See a specialist, or better yet, two or three.