in need of advice

[ajd]

hey, well, my names Anthony, over the last month or so ive done so much research i could probably become a urologist myself! whilst researching ive browsed over this forum many of times, as well as many other websites and forums. ive documented as much information as I could, in hope (unfortunately im probably not the only one suffering) that someone here will be able to relate. some of my symptoms may not be directly associated with peyronies, but nether the less they are bellow.

Age? 23 years young

What did your medical doctor conclude? 1 of 3 GP's diagnosed me with peyronies, another said i was fine, and the third didn't know what to suggest other than to be seen by a urologist. I believe my GP concluded peyronies from the pain felt in the penis when flaccid, and the 'hard flaccid' state of the penis.

How long have you had symptoms? I suppose the most common symptom of curvature, seems to be the only symptom I do not have, but since August/September my symptoms have been as followed,
loss of libido
hard flaccid - mostly constant, normal when relaxed
loss of morning, nocturnal and spontaneous erections - constant
more prominent veins on both sides - mostly constant
weaker erections - very frequent
harder to attain and maintain erections without physical stimulation - mostly constant

Symptoms from October 2014
buttocks ache/pain - muscle contracting when coughing - more noticeable when sitting - frequent
penis pain in flaccid state - mostly constant
single small pulsing vein on bottom of left side - more noticeable when warm - frequent
clumpy vein on left side - frequent
loss of pre ejaculate/very minimal - constant
soft glans - frequent
weaker ejaculation - constant
loss of semi erect girth - constant
loss of muscle contraction control in penis - constant
urine leakage after urination - constant

Symptoms from November 2014
slight bend to left towards head of penis when semi erect - once
painful ejaculation - frequent
improvement with pre ejaculate - mid/late November
great reduction of penile pain - mid/late November
rubber feel when not hard flaccid - mid/late November

What treatments have you tried and what were the results?
500mg l-arginine - daily - 50 days
multivitamin - daily - 50 days
666.6mg calcium, 266.6mg magnesium & 16.6mg zinc - daily - 50 days
400mg Ibuprophen - 4 times daily - take twice for 10 days at a time, with a few weeks break inbetween
cod liver oil with vitamins A & D3 - 1000mg cod liver oil and fish body oil, 220mg omega 3, 200mg EPA/DHA - daily - 30 days
25mg sildenafil - twice, once with stimulation causing erection, once without stimulation making no real difference.
none of the above made any noticeable difference to my condition.

Do you have insurance or means to get medical treatment? nhs treatment in england is available (dependant on whats available for treating peyronies)

where are you in dealing with the psychological aspects of Peyronies Disease?
my mental state is starting to crack, my doctor referred me to a urologist, and I am to be seen in mid January, well if im in the country anyway, I leave to travel Thailand and Australia in 2 weeks today, I didn't intend on coming home as I have a working visa for Australia. with my current diagnosis from my GP and without a urologists diagnosis or advice on treatment, I am turning to this forum for support and advice.

Are you in a relationship? im in a strong relationship, that has always been fuelled by a high sex drive from both of us! fortunately my girl is willing to support me as I go through this.

I have just started taking the traditional vitamin E, at 400iu twice per day, 1g of l-arginine twice daily and 1g of l-carnitine twice daily (as apparently the body can convert this into acetyl-l-carnitine and the price was far cheaper), I have discontinued pornography and greatly reduced masturbation to avoid further injury, my girlfriend lives long distance so sex is weeks apart.

sorry for such a long introduction, but I believe information is key.

Anthony.

[ghost]

I'm pretty new here myself, but let me start by saying welcome to the forum. I would say you need to get to a good urologist as soon as possible. With all those symptoms, I don't see how any medical professional could say "you're fine". And if you do have peyronies, the worst thing you can do is wait. Many of us have found out the hard way that things can get considerably worse in a short time. Not trying to scare you, but get checked out & make sure to list all of these symptoms when you see the doc. Gotta have some testing done, bud. And you're certainly not alone in having a cracking mental state. This stuff can drive a man crazy, but it's great that you have a supportive woman on your side. And it can be very difficult for her, too. Best of luck.  

[LWillisjr]

I read through your intro. I understand that you do have several symptoms but I can't say these all relate to Peyronies disease. There have been some discussions of hard/flaccid here but I do not believe this is a symptom or Peyronies. I would be more concerned about your weaker/loss of erections. This also is not a direct symptom of Peyronies. And there are other issues that can cause weak erections.

Your options for doctors might be limited but you really need to find a doctor who specializes in male sexual function. A general urologist is too broad of a spectrum.

[ajd]

I guess I joined this forum for the advice from people that have experienced peyronies first hand, although I may not directly have peyronies, the psychological effects im dealing with seem to be somewhat similar.

im not sure if the following is suited to remain in this conversation or another topic in another category? (please advise if it needs moving)
But from what ive researched, fibrosis could be a cause of some/many of my symptoms (the pain and tissue changes) which from what I understand isn't to dissimilar to peyronies, to which the treatments for peyronies could be beneficial for fibrosis? again I do need to see a specialist sooner rather than later, im in hope that the early precautions of the supplements im taking and the advice I can gain from this forum could aid me until then.

[ajd]

I think this link is relevant to where my conversation is going, I don't want to 'hijack' anybodys topic as I believe you guys call it lol.
Fear I may have cavernosal fibrosis- need some input, please... - Peyronies Society Forums

[NeoV]

See a specialist,

Take CoQ10, the Carnitine (alcar is more bioavailable).

At the specialist explain about the lumpy veins you have, get an ultrasound to see if you have thrombosis rather than peyronie's. Consider pentox.

Recent literary reviews describe Peyronie's as resulting from vascular trauma. Avoid clenching your pelvic muscles at all costs, and never do it to achieve ejaculation. Give your penis a rest.

[ajd]

thanks for the advice, sorry for not understanding but whats 'alcar carnitine?' and what does bioavailable mean? ill get some coq10 straight away, any recommendations on dosage? (I know you cant tell me which dosage to take but an idea would be appreciated). rest will not be a problem.

also thanks for the support everyone.

[Jonbinspain]

Acetyl L Carnitine. You can read about it on the site, or Google it.

Bio-available simply means more easily assimilated in the body.  

[NeoV]

The mitochondria have to convert L-Carnitine to Acetyl-L-Carnitine (ALCAR), which is then used to trigger the CRAT gene, which is of particular interest to us due to it's effects. After this the ALCAR is turned back into L-Carnitine outside of the mitochondria for reasons I am unsure of. The research seems to suggest that while a portion of L-Carnitine is converted into ALCAR, it's much better to just take ALCAR.

From WEBMD "In fact, the body can convert L-carnitine to propionyl-L-carnitine and acetyl-L-carnitine. But, no one knows whether the benefits of carnitines are interchangeable. "

I can tell you what dosage to take, the dosage used in the famous (THE ONLY) study was 400mg a day for CoQ10. I usually split it into two doses, morning and night, and take each dose with 1g of ALCAR, as to take 2g per day of that.

Since studies that exist on Peyronie's are so scarce, the dosages tend to be standard around here!

[ajd]

brilliant thanks for the advice.

after speaking to my dad (needed someone other than my girlfriend to help bare my mental strain, even at 23 years old!), ive decided to go for a private consultation, hopefully within the next 2-3 days I will have a complete diagnosis. This has been recommended by my dad from my grandfathers experience, the nhs continuously misdiagnosed his condition for weeks and could not find an answer, then within 2 days of contacting then seeing a private consultant, the answer was found, which ended up saving his life. I am quickly learning that finance is the last of my worries with the issue at present.

I must quickly note I am not 'slating' the nhs or anything of that nature, im purely writing about an experience. Also I am not making judgement on anyone that does not opt for private treatment.

although this eases my mind in finding a rapid diagnosis, I am still finding it hard to come to terms with that in 2 weeks today I leave to travel for potentially 2 years (timing couldn't be anymore inconvenient!). although probably slim, I am hopeful my condition may be a case needing prescribed oral treatment, in which case I can continue in Australia. I guess in the worse case scenario, I will have to delay my travels and/or at least miss parts to make sure I don't completely loose out financially as a chunk of it is already booked!

I would like to hear from anyone that has experienced a similar mental strain on maybe relocating country or even city whilst also awaiting diagnosis or after a newly confirmed condition.

im assuming I can carry on in this conversation as a sort of self help blog? somewhere to vent; also for anyone to read in a similar position.

[NeoV]

I encourage you to post often and to utilize this forum in that way.

However please use another sub forum since this one locks down after 10 posts.

Like you I had to come to Tokyo after the disease started at 26, its been brutal.

[skunkworks]

AJD I am in Aus and you can get everything you need here, though might need to get pentox from Riverpharmacy online.

Don't let a doctor talk you into verapimil injections!