introducing myself and some questions

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

finarod

Hello everyone,

I am not sure whether or not my post would be appropriate for an "introduce yourself" topic, pardon me in advance if I'm faulty...

I am 22 years old. I always had a congenital downward gradual curvature. In 2008 June I had a minor injury, then developed peyronies plaque which is not palpable, situated deep down in the root of my penis, as ultrasound test shows. No significant reduce in length, girth, maybe milimetric. Chronic discomfort while firm flaccid, loss of elasticity while erected. No significant change in erection quality. I used vit E and colchicine, no difference. Then I stopped using drugs, I thought that the disease entered into stabilized phase. In 2012 February, I noticed unusual pain whilst flaccid and a different sensation in erection. Then I went to the ultrasound test, found out that a part of the plaque is now calcified(0.8mm) but the remaining part(0.7mm) is still fibrotic. In 2012 May, my uro started a Magnetic Incontinence Therapy on my perineal area, suggesting that it is very close to the location of the plaque, considering that it would enhance blood flow and eventually help cleaning out of the plaque. I couldn't find any studies on that, so I doubt it was or wasn't useful. I had it 16 times, noticed increased erection quality, but inelastic and very strong, hence producing pain. Now I am on pentoxifyline (2*400mg), Vit E (400 IU alpha-tocopherol) since 6 weeks and zinc (50mg) to induce strong nighttime erections since 3 weeks. My erections are very strong, sometimes they wake me up with pain localized in the plaque. Not only nighttime erections, my daytime erections during sexual activity are increased too. This causes some pain though, which is also questionable in terms of progression of the disease. My hardened flaccid state discomfort begins to resolve, possibly due to pentoxifyline's blood flow enhancement effect.

I have certain questions, which are the following:
1) Is my plaque called "septal plaque"? I don't know what it exactly means. Would it be possible for me to have surgical intervention to the plaque area in the future, considering that it is deep down my penis, not palpable as it is seen in surgery videos (graft techniques)? Even if I am psychologically and biologically too far away from that option, it is still a possible future event.
2) Is zinc okay for erection and blood flow enhancement, considering the fact that it inhibits absorption of copper which helps collagen production? (not sure of it, i couldn't reach any scientific evidence apart from websites)
3) Is it okay to continue Pentoxifyline treatment for long time, even till death?
4) Is it normal for pain to increase along with an increase in erection strength?
5) What about possible effects of Magnetic Incontinence Therapy?

Thank you all for your help. I do admire the quality of responses given in this forum, compared to other websites...

Kind regards,
finarod.

james1947

finarod

First I have to say that you find a good uro if he put you on Pentox. Pentox will help you with the pain and with good blood circulation and with the hard flaccid.
I can't tell you if you can take it life long, but have people on the forum that are taking it for many years already.
It is normal that the pain increasing with stronger erection because is stretching the tissues, but Peyronies is a disease that is very individual.
I hope someone with bigger knowledge regarding your other questions will jump in.

Welcome to the forum, sevgililer :)
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

chandnitare

finarod,

Sorry to hear that you have Peyronies Disease at this age. I heard in this forum young people have good chances to recover. It sounds  that you are fighting well. Indeed you have come to the right place, people here are very kind and helping. Hope somebody do answer you questions which I also need to know very much. I have also been detected yesterday with tiny calcified area in my plaque. Wish you recovery soon.

chandnitare

LWillisjr

Quote from: finarod on July 25, 2012, 03:17:57 PM
4) Is it normal for pain to increase along with an increase in erection strength?

Kind regards,
finarod.

finarod,
You ask some very good questions. I only feel capable to respond to the question above. Yes it is normal for the pain to increase with increased erection strength. The reason is that as your erection is stronger it is placing more stretch on the area with plaque/scarring. I find it interesting that the treatments you describe have increased erection strength.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

finarod

Thanks for your comments. I would appreciate any other attempts to answer my complicated questions, or maybe I should post them separately in distinct parts of the forum in order to attract more attention, what would you guys say?

LWillisjr

Quote from: finarod on July 25, 2012, 03:17:57 PM
1) Is my plaque called "septal plaque"? I don't know what it exactly means. Would it be possible for me to have surgical intervention to the plaque area in the future, considering that it is deep down my penis, not palpable as it is seen in surgery videos (graft techniques)? Even if I am psychologically and biologically too far away from that option, it is still a possible future event.

Kind regards,
finarod.

I'll offer my opinion on question #1. To begin with, you have stated that your have good erection quality and you didn't mention any curve other than your congenital curve. So currently surgery should not be a consideration. Surgery is for correction of a sever curve, or for the correction of ED. Don't consider surgery to improve the pain. Often times the pain resolves once the Peyronies has stabilized. And then pain can also be addressed by meds like ibuprofen and pentox.

If, and only if you develop a severe curvature that prevents sexual intercourse, or you develop ED not treatable with Viagra or Cialis.......  then you would begin consider seeking surgery. And whether your problem could be improved with surgery would be completely dependent on the skill and capability of the surgeon. If you required an implant, I don't think the depth or location of the plaque really wouldn't be relevant. For grafting surgery I don't know. And there are only a handful of doctors we are aware of that I would even consider getting this surgery from.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

finarod

I have bad news here...

Yesterday I noticed a tiny lump in the middle of the right side of my shaft. It is not remarkable in erect state and it does not cause any deformity or pain during erection. However, whilst flaccid, it produces a sensation of being stabbed by a thin needle. Though I do not recall any particular injury. The lump is not hard and in erect state the condition of the tissue is just like any other part of my penis, as I gently touch with my fingers. My erections are as strong as it was and I don't feel any additional pressure in erect state on the lump that I described. In order to be sure, I checked the lump with my fingers and I suggest that it is not a dermatological issue.

As I said earlier, my original plaque is not palpable, way down the root of my penis, I do not how it feels and I do not know the progression of such lumps into plaques or indentations. Isn't it strange to have such a lump and no evident effect on erection quality and shape? I searched for member histories and I found out that the first symptom is for the most part curvature or pain in erection. Anyhow, I suggest that it is a sort of inflammation or a sort of scar tissue, not necessarily fibrotic -though it might be-. I think the most proactive approach would be to continue medications that I'm taking already.

I don't think an urgent appointment would be necessary, as I do follow the necessary procedures already, taking pentoxifylline with vit e and in a few days I'll add coq10 also. I think I should also decrease sexual activity and ejaculation.

I should also add that there have been no change in the size of the lump, from yesterday to today.

I know that every case is unique when it comes to peyronie's, but I would like to know what would you guys suggest?

Wish me luck,
finarod.

james1947

finarod

First I wish you good luck from all my hearth.
In my private opinion, I don't think you should reduce your sexual activity and ejaculations (other people may think different). You are very young and your body needs it.
I was just carefull not to engage in to rough sex not to cause some injury.
Also regarding your treatment, for your situation, I think you are fine and adding the CoQ10 is good also.
Are you smocking? It will be also good to stop if yes.
Maybe you should make a sugar blood test, elevated sugar levels hold clue for many problems.

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

finarod

"Also involved in the wound healing process is a hormone substance called prostaglandin E1. Oxygen enhances prostaglandin E1, which causes several reactions in the penis: suppresses production of collagen, and enhances release of calcium by the smooth muscles of the penis so that blood flow is increased. Thus it can be seen that oxygen reduces TGF-b1 and increases prostaglandin E1, and that this has the combined effect of reducing collagen (scar) in the penis; lack of oxygen would therefore increase collagen (scar) formation. The combined effect of too much TGF-b1 is that it favors scar development, and reduces the substances that can remove collagen."

I quoted this scientific text from another site.

TGF-b1, already blocked by pentoxifylline and vit E.
Prostaglandin E1, decreases with ejaculation. It follows that too much ejaculation could possibly render body more prone to produce excessive collagen. Of course, it does not mean that the solution is abstinence, but a slight decrease could be helpful.

I don't smoke, and I drink occasionaly.

I intend to test my hormone levels and blood sugar.

Let's wait and see what others think...

Thanks,
finarod.

ashtown

It sounds like you are battling this very proactively and while it's awful to get this at your age at least you have the advantage of youth to help fight it, so natural recovery should be easier. You might want to also consider Acetyl L Carnitine, which is often used to battle Peyronies Disease. L-Arginine is good for circulation and often suggested by some of the better Peyronies specialists.


I only started taking these two substances a week ago together with CoQ10 and I think they are helping. There is far less pain now when flaccid but yesterday I noticed more pain while erect and as mentioned earlier in this thread that could be owed to the stronger erections that are also more frequent now. When Peyronies Disease first struck I experienced ED for the first time in my life and hated it so I am glad that has stopped.


Occasionally I find my penis just feels cold & uncomfortable or hard when flaccid and I find that covering the area in a towel covered hot water bottle helps at those times to restore a sense of normality. I also choose to sleep naked now to avoid any strain during the night with nocturnal erections and try to wear very loose fitting clothes during the day.


Like you I have no curvature as yet but I think it's important to fight this early on and you were lucky to find a urologist prepared to prescribe Pentox. I'm curious about the Zinc and may read up on that. Several years ago I took some zinc tablets and it actually made me vomit, so I was always a bit wary of it but that was 20 years before I had ever even heard of Peyronies Disease.


One point I would add is that I don't think it helps any of us to be checking constantly to see how the plaques might be developing and I'd be inclined to avoid frequent prodding or squeezing. You know you have Peyronies so feeling for lumps won't help it but may actually make it worse.  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

finarod

In my opinion, sleeping naked is beneficial for "securing" nighttime erections.

Hot water would help hardened flaccid state. I think applying hot water periodically could also help reducing plaque size, the same logic goes for hyperthermia treatment. It would be an amateur one though.

Fighting peyronies is not only seeking the best treatment. We have also "obsession" to cope with. I suppose that obsession, by changing hormone levels due to stress, also reduces chance of recovery. Once obsession is eliminated, for example constantly checking the plaque or the lump is abandoned, chance of improvement and moreover recovery would increase.

By the way, apart from moderator responsabilities as james holds, being excessively online in forum could also be a part of such obsession, I sometimes find myself constantly checking if there are any new posts. We are doing the right thing by continuing an adequately scientific treatment for a disease whose aetiology is unknown. Even scientists, professors could not grasp the whole logic of the disease. Then, we ordinary patients could only reach a limited extent of information. New posts could not reveal the true nature of the disease. For example, as a patient who is continuing pentoxifylline treatment, acquiring a brand new lump is not good. However, it does not mean that it is pentoxifylline that caused it. Such reasoning would be anti-scientific. Sufferers of the disease may acquire a bunch of important information on the disease, but totality could never be reached.

james1947

finarod

I agree with your opinion on the subjects you have mentioned, including:
Quotebeing excessively online in forum could also be a part of such obsession, I sometimes find myself constantly checking if there are any new posts.
The only difference between doing that in the past when I was not active on the forum and just wanted to find something that will be a "silver bullet" to my Peyronies and now is that now my obsession turned to try to help others on the forum with the experience I had acquired on the forum and other sources. It helped me (and helping) to fight especially the psychological effects of this disease.
An other reason that drives me to do that is the enormous help I get from the forum veterans (I am not one of them) to cope with this disease and wanting to thank them for they help.
Most of the forum veterans had found solution for they Peyronies, but they are on the forum and reading every post to help others.

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