How can I tell if my Peyronies Disease is worsening?

[YoungandWorried]

Hi,

I am new to the forum and I'm a 22 year old. I was diagnosed with Peyronies disease 4 months ago. I was told I have a plaque (about 30mm long by maybe 10mm wide, though the width is harder to estimate). My doctor gave me very little information about the disorder and my future.

Honestly, I am feeling depressed and the prospect of this condition worsening is really hard to handle. Particularly considering how early in my life it's starting. It feels as though if it were to be worsening even at a very slow rate I am certain to loose nearly all function at some point. Honestly, if anyone could point me in the right direction with literature about the chances of it worsening and how I can attempt to gage it it is worsening I would be so grateful.

Information about me specifically:

I misaligned during sex about 6 months ago. It hurt at the time but I continued. I then later (c.4 weeks) noticed an increasing amount of pain and curvature during sex as well as increasing difficulty gaining erections. This peaked around 2 months after the injury. I saw the doctor about 6 weeks after the initial injury since I had noticed a hard section in my flaccid penis. He gave me the diagnosis and some drugs to take 3 times a day to help reduce the size of what he called the "plaque" (I don't remember what). I took them for a couple of months but since they didn't seem to be working I stopped. It is now about 6 months since my injury and I am worried the condition might get worse.

Questions I can think of:

- What proportion of men does it 'get worse' for?
- What kind of rate does it get worse at?
- If it gets worse..
- Does the plaque itself grow?
- Does the erectile dysfunction get worse?
- Does the pain get worse?
or some combination of these?
- Are any of these linked? (Say if the curvature is getting less does that mean the plaque is shrinking?)


Please, I just want to feel better. I'm hoping understanding my future will help.

Alex, 22, UK.

[emasculated]

My method to gage progression of the disease is to drive to a Peyronie specialist for continual checkups every 3 months. He physically checks for plaques and then in the ultrasound he measures the size of scarring / plaque and makes a printout. Then he compares the printout and measurements with the ones 3 months ago.  

[james1947]

YoungandWorried

I will try to answer to your questions one by one. Of course I am expressing my own opinion:
* Almost all the cases are getting worst of not treated
* The plaque itself may grow, other plaques may appear, hourglass's may appear also if no treatment.
* The ED may get worst if no treatment
* The pain may get worst if not treated.
I know my answers are blunt, I hope you understand that you must treat the disease as soon as you can.
I don't know what kind of medications your doctor has given to you, but you must understand that treating Peyronies takes time.
It is a marathon, not a sprint.
You may start using VED, taking daily Pentox 3*400 mg, Cialis 5 mg, CoQ10 3*100 mg.

James

[LWillisjr]

Alex,
It does no good to worry about it IF it will get worse. You can waste a lot of time worrying about something that might never happen. What you can do is read up on how to treat it. Look into VED or traction on this forum. This can help things from getting worse by proactively treating the disease. I would encourage you to take pictures and keep track of your own measurements. This is the best way to track progression or stabilization.

Les

[welshwales]

Hi Alex. First off, if you want to help yourself, get back on those meds. You are very lucky having a doctor willing to prescribe medication for peyronie's in the UK, so take advantage of it. It has taken me 21 months to find a Dr willing to prescribe pills. I'm guessing by the frequency you were told to take it, you were likely to have been given pentox. Be more patient, meds won't necessarily work so fast, and could well prevent the disease from progressing even if it doesn't eradicate your current plaque.

Peyronie's disease is an odd disease. It affects each person individually and to varying degrees. Some very lucky people spontaneously recover, while some simply stabilize, and others have a progressive sexually debilitating ordeal. But one thing is for sure, and that is worrying about it won't help alone. Be proactive, get back on your meds, look into buying a VED for therapy, see if you can get a prescription for low dose cialis, and read through the various boards on this site. There is a wealth of information here.

You are early on in the disease progression, which is the best time to actively combat it. Don't sit by while it gets worse. Many of us are in the state we are in simply because we didn't fight the disease earlier.

[Nordicz]

Alex,

I agree with welshwales in his last post. Combat this early and with good fortune you may mitigate any further progression. I am of the opinion if I would have found this forum initially and been seen by my current doctor earlier, my disease would have been treatable without surgery.

Z

[YoungandWorried]

Thanks for all your replies. I appreciate your time to reply. What is confusing me is at current I have no pain, no trouble getting erections and the curvature must be at most 15 degrees, probably more like 10. Basically, if it stayed as it is it wouldn't bother me at all. What is more concerning is that different sources seem to say different things about what to do. I wasn't actually prescribed the drugs in the UK I was prescribed them in the US. So no longer have them, since I didn't think I could bring them back with me. As yet I have not seen a doctor in the UK.

Has anyone actually experienced any improvement using a vacuum pump? Could anyone link any studies about it's use?

I am still having very regular sex, is this a problem?

Thanks again for replying, it really helps just to feel like you're not alone.
Alex

[james1947]

YoungandWorried

Has anyone actually experienced any improvement using a vacuum pump?

I think the majority of VED users, including me.

Could anyone link any studies about it's use?

Read the library and the VED board

I am still having very regular sex, is this a problem?

In my opinion, use it or lose it.

James

[welshwales]

Has anyone actually experienced any improvement using a vacuum pump? Could anyone link any studies about it's use?

I am still having very regular sex, is this a problem?

I have regained much of the girth I lost, and some of the length. The angle of bends has remained the same so far, but that doesn't bother me too much as intercourse is still possible.

Have as much sex as you want, just be aware that some positions can be hazardous. Girl on top is more risky. Quite a few guys have been injured by girls being a bit too entheusiatic and coming down too hard bending or even fracturing the penis.

Regarding your statement about how you don't mind your current state and bend of your penis, don't be lured into a sense of security. Peyronie's can be quite progressive. I didn't mind it at first, having only a single plaque and slight hour-glassing. Years on, I have a penis full of plaques with multiple bends and erectile dysfunction. I am unable to maintain an erection for more than a couple of minutes without the aid of tension bands, pumps or Viagra. I'm not quite as young as you, but at 34 I feel too young to be going through this.

[UrsusMinor]

Has anyone actually experienced any improvement using a vacuum pump? Could anyone link any studies about it's use?

There aren't a lot of studies on anything connected to Peyronie's. There is one VED study that ran only 12 weeks, 10 minutes 2X per day, and found curvature improvement in 2/3rds of the participants, and length improvements in 1/3rd...which I consider pretty impressive in just 12 weeks.

A recent study on rats (I still can't figure out how you get a traction devide or a VED on a rat) found that both traction and VED improved curvature and ED. They concluded that traction was superior for curvature, and VED for ED, but both of them improved both parameters.

There are a number of people on this site who have experienced improvements with VED, but there are also a number of people who have hurt themselves, so if you decide to take up the practice, read everything you can find on this site before starting.