Diagnosed 2 months ago and condition has worsened

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Littlemacca

Hi Guys

I'm from Perth Australia.  I've just turned 42 and I'm currently single, have been most of my life as I've never had much luck with the ladies (Shyness is not a turn on for most of them).

My story starts at the beginning of this year, I know this is going to sound stupid, but I believe my injury occurred back then when a new set of underwear with a very tight elastic basically constrained my nocturnal erection.  I awoke with my penis in pain with the head pushed forward by the elastic, I now suspect that due to the hot summer weather I must have been tossing and turning at night and have rolled onto my stomach injuring my penis.  The pain was sort of a burning sensation that mostly concentrated in the center of the shaft just below my circumcision scar.  

I was going to see my GP but the pain faded after a few days, so I forgot all about it.

In late may I noticed that if I masturbated that this same spot would be sore for a bit afterwards, this had me worried. Then starting in June I started to get painful erections when fully erect, the pain was like a grit feeling.  I then noticed a small bump appear in the shaft about the location of the pain.  I left it for a bit hoping it would go away, but it didn't so I went to my GP.  

I should mention that all this time my erections have been straight with no curve.

My GP examined me and thought it rather small, he thought it could be either a thrombosis or perhaps Peyronies but thought this unlikely since I had no bend.  He sent me to get an ultrasound to see what was happening.  

It only took the ultrasound doctor 10 seconds to announce the awful news... Peyronies a plague about 11mm long and 2.5 mm wide and its partially calcified.  

I went back to the GP and he said I'd need to see a Urologist, he gave me a list of about 4 as no-one seemed to list Peyronies as a speciality, he advised me that I really needed to find one that specialised in it and to check with them whether they wanted to see me and if they specialised. He tried to re-assure me that it wouldn't be too bad as the plague was actually quite small and that he had one other patient with this issue and he had no problems with Peyronies as it did not interfere with his sex life.

In the meantime I started researching and found this site, and also a lot of scary pictures and descriptions on other sites and the fact there is no cure.

I found a Uro (Not one give to me by my doctor) that listed an interest in Peyronies on his website at St John of God hospital, all the others where happy to see me (ie $$$$$$) but did not have Peyronies as an interest/speciality.   I've now gotten an appointment at the end of October (My doctor warned me this would be the case) since our wonderful health system has such long queues.  

In the meantime i started experiencing pain almost every day and night, always when erect and mostly when flaccid, the pain was either a deep itching or a burning sensation, this pain also started to manifest on the left of the lump, then the lump turned into a dent. I also noticed that there was also a partner lump appearing under the shaft but hoped/prayed it was not peyronies.  

I stated reading this site, and ordered most of the supplements most people seem to take, namely actyl-l-carintine, l-arginine and firstly Co-enzyme Q10 and now Ubiquinol.  My regime has been (for the past month):

1g actyl-l-carintine twice daily
1g l-arginine in the morning
200mg Ubiquinol twice daily
in addition 3 fish oil twice daily.

I thought I was on the improve the dent seemed to be improving and was not as deep as it first appeared, and the pain in both flaccid and erect states seem to be on the improve.. I thought I might be one of those lucky guys with slight dent and not much else.  I have not injured my penis to the best of my knowledge since..... I now sleep naked......

Yesterday was a great day no pain and I awoke with a nice hard nocturnal erection that was straight, so again I thought I was on the mend and might stabilize.. I was trying to think positive and convince my body to repair itself properly.....

Then this morning I awoke with a slight burning sensation left of the dent that continued around my circumcision scar toward this new lump underneath.  It felt like an inflamed vein, and the pain got worse all day. When I got home tonight from work I watch a little porn to get an erection which hurt like you would not believe I could only managed 60-70% erection and discovered that a massive dent has appeared in my penis where this new lump on the underneath was.  This is in addition to the existing small indentation on top.  I can now also feel there is a continuing indentation that continues around the whole circumference of the penis even on the right hand side.....  I now realise that I not going to get a mild case of this but probably the hourglassing effect.

I should also mention that I have had a history of psoriasis and plantar faciatis in the last couple of years (this to me indicates both auto-immune issues and a fibrous wound forming ability).  Looks like I've drawn the lucky straw genetically

I know everyone says get on pentox but I have no faith given other's experience with doctors (and given my luck thus far it probably would not work for me).  The few Aussie posts do not paint a rosy picture of upto date treatment.

I'm really depressed and scared and am now facing up to the fact that my sex life (however pathetic it was) is over....  I was always proud of my penis (it was 6 1/2 inches) it was one of the few things that gave me confidence with the opposite sex .

I've been talking to my brother who is a great support, but there have been many tears shed tonight......  

I cannot bring myself to tell my parents as my Dad has been really sick with possible ulcerated colitis or crohn's disease (at this stage they cannot tell as its so bad).  The last two weeks have been hell as we had to rush him from a colonoscopy to emergency to get immediate treatment. I don't think my mum could handle this as well.......

I'm also just about to leave on a 4 week holiday of the USA and will have to take this worsening condition with me.....  

I'm really scared what my noctural erection will bring tonight........ at the moment my penis is on fire and cant see this getting better

ashtown

Hi Littlemacca,
I grew up in Perth WA so we have something else in common besides Peyronies Disease. I've been away for many years but it sounds like your health system is similar to the UK, so telling you in straight Aussi fashion I think you need to take action and not wait for this to get worse.


Having also been diagnosed myself just a couple months ago my simple advice is not to waste time waiting to see a state health urologist who might just turn around after a six week wait to say do nothing but "wait and see" as happened to me. Go private so you see somebody quickly and you should find they are much more willing to be proactive, even if it's a case of you saying you want Pentox and them simply agreeing. You could always try asking them directly if they are willing to prescribe Pentox before making an appointment so you don't waste your time.


I was in exactly the same situation as you not long ago in terms of treatment and it had at least stopped most of the pain while flaccid but I knew it wasn't enough. May I also suggest you double your amount of L-Arginine to include 1g at night as well to help with nocturnal erections. After seeing a private urologist experienced in Peyronies I was soon on a combination of Pentox and Cialis, which I've now been taking for a short time but the sooner you start the better and no way can you enjoy a holiday with this playing on your mind so start treating this seriously a.s.a.p. Also consider using a VED or traction device.


Good luck


Ashtown






Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

Littlemacca

I would like to second Ashtown on all his advices. Pentox will help with the pain, low dose Cialis will help with erection and with softening the plaques. Usually Pentox is acting fast regarding the pain, so it may help also to have a pleasant holiday.
Myself taking 2gr L-Arginine at night as I was adviced on the forum and with the low dose Cialis (4mg, cutting the 20mg in 5pcs) giving me good nocturnal/morning erections.

Welcome to the forum
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

blueturf

Hey guy!

I worried for months before I saw my doctor.  

My major worry was that i felt unusual bumps when i masturbated...I was worried it might be cancer!  (Scary, huh!)    

But all the "junk" kept working a long time; when it didn't, I went to my doctor, who referred me to a specialist.  Scary event...having someone really feel your penis--if you don't know him or her!  (Cute might be a factor...but fear is more of a factor!)

:-[
Bret

Littlemacca

Guys

Thanks for all your replies.  

In short I leave for the US on Sat, so it would just be impossible to get another appointment in such short notice.  I will be away 4 weeks, then a week after i get back I have the appointment.

The few Uro's that I did try with no interest in Peryonies also had long waiting lists, so my GP was right on this account.  St John of God is a private hospital, and the doctor is the only one I could find with an interest in this condition.  I just don't see the point of seeing someone that knows nothing about this problem other than what they learned at University...

One of the things about the Aussie health system is that it has public and private cover, but most specialists take appointments from both. Private health cover is only any good once you need an operation as the private hospitals are better and have smaller waiting times and you get the doctor you want ....  and as I just discovered with my Dad who has top hospital cover, that if the speciality merges with the public system you just join the queue.  Picture spending 6 hours in Fremantle hospital emergency dept with my Dad just given a chair in a corner of the ward and then having to run to the toilet every 1/2 hour, the place was a meat market with people lying in beds in corridors....

I had mentioned pentox to my GP (had to tell him it was called Trental) he was happy to look it up but when it said nothing on his computer about use for peyronies he basically said 'whatever people are being prescribed overseas is strictly off the book'. This I took to mean if its not mentioned as used for this condition then he won't prescribe it in case he gets sued by me if it had some adverse reaction.

I will mention Trental and VED to the specialist and see what he says.. I'm a bit nervous to try VED at this early stage......

Some other things I should mention are that I had a varicocele operation back in 1991, basically they opened up my left groin to fix the issue. Normally they don't bother with it but in my case the varicocele had pressed on the artery to my left testicle sending it into spasm...  When I awoke from the op I was bruised about the size of football, this included my penis which was all shades of black and blue.. From time to time over the past 20 years I have had ongoing niggles with strange pain and itches since this op... perhaps its not related though.....

I will try to stay positive but its very hard and very scary.... thanks so much for the support you guys are great, I'd rather not share this condition but its great to meet people who have been though it... I just wish medical science was better at fixing this, for all our sakes.

I've increase the l-arginine but still have pain.. its mostly on the left side now and that side now looks slightly indented and narrower.....  

Hawk

Welcome to the forum,

I am rushing from one errand to another so I will be brief.  Pentox is prescribed what we call "off label" meaning it is prescribed for something it was not developed for but for which it has a known benefit.  It takes either a doctor who knows up to date information on Peyronies Disease or one that is open minded enough to look at data to prescribe it.

On our main forum page you will see a section call "Resource Library"
In that board you will find 2 or 3 papers on pentox from leadingng urologists.  I would be certain to take these with me to my appointment and you will quickly learn what kind of doctor you have.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Littlemacca


Littlemacca

Guys

Had my appointment with my uro yesterday.  Right off the bat he seemed really professional and understanding, said that peyronies is about 10% of his business and he often has to pick up work from his less enlightened colleagues, he said he's become the local expert on the condition as a result.

We discussed treatments and he's well aware of most of the latest research, including pentox and xiaflex. He does prescribe pentox but wants to hold it back for a little bit and wants to tackle inflammation in my peryonies first.  His opinion was that VED would be not good at this time and probably aggravate the inflammation.

He examined me and said that my peyronies was on the small side and distal and a bit more treatable, was happy with penis length when he did the stretch test so no shortening at this stage, in his words probably unlikely but I may see some narrowing at the neck.

He gave me a prescription for cialis 5 mg every second day, colchocine .5mg twice day, and ALC 1 gram twice day. He also had no problem with L-arginine and ubiquinol, in his words no harm and they don't intefer with the presciptions.

Xiaflex was exciting but very expensive in his opinion and still not approved.  

He wants to see me in 3 months time to see how things are going and we'll take it from there.

So if anyone needs a recommendation to a uro who seems to know about peyronies in perth I can point them in the direction of a good one.

All in all very happy based on some of the horror stories I read on the forum.

skunkworks

There is zero reason to hold off on pentox, and I personally believe it is vital in the early stages to minimise fibrosis and plaque formation.

Especially when one is going to go for colchicine...

QuoteAfter therapy, in subjects and controls a reduction in the penile deformity was observed by 17.1 and 18.4% of the patients (P > 0.05), and a decrease in plaque size was noticed by 10.5 and 10%, respectively (P > 0.05). Objective measurements did not demonstrate any difference in plaque size or penile curvature. There were no substantial differences in response to treatment based on duration of disease or within the three Kelami classification groups. Significant drug-related adverse effects occurred in colchicine group and in two cases was treatment discontinued. Colchicine is no better than placebo in improvement of pain, curvature angle, or plaque size in patients with Peyronie's disease.

http://www.ncbi.nlm.nih.gov/pubmed/14973528
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]

james1947

I will second Skunkworks.
Pentox is the most important component on this treatment in both early or late stages.
I think Littlemacca problem is that from one side he found a uro that is listening, giving treatment that is very close to what the forum is thinking but from the other side he didn't get Pentox but get colchicine that also from the link posted by Skunkworks and also from the forum posts is not doing nothing.
Because of what I have learned on the forum and my experience with doctors, I was changing colchicine to Pentox in my treatment, but it's me. And adding VED from the same reasons.

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

Hawk

I know that when you are at the Dr. you have a lot go through your mind and I am sure this man instilled some confidence.  I can imagine the relief to have someone take you seriously in person but did he explain WHY he was going to wait on the Pentox and what the benefit would be?

The Pentox would not interfere with stopping inflammation.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

skunkworks

A quick google brings up quite a few studies showing pentox to be beneficial for treating inflammation.
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]