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Author Topic: 25 year old from London. My Peyronie's.  (Read 2866 times)

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Cosmos

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25 year old from London. My Peyronie's.
« on: January 05, 2016, 07:39:55 PM »

Hello Everyone! :)

I hope you are all enjoying your holidays! I have finally decided to make a post and introduce myself. Long overdue. I realise that this is huge post, but I feel that I need to include all the information I have at hand, as there might be some members who can relate to the causes I mention and it might help them in finding their answers, and obviously, as it can give the members more information to assess my condition and give me any advice that they can.

To start with, I am 25 years of age. I live in London, UK. At the age of 24 Around May 2014, I started having strange pain during erections, that pain started to increase as time went by. At first I thought maybe it was due to excessive masturbating (From a young age, I would masturbate for prolonged periods, in order to try a technique for multiple orgasms for men, which states that if you keep prolonging the masturbation, you can feel the orgasm without ejaculating. There are different techniques for that and I won’t go into that. But it might have put an unnecessary strain on my penis. I would also do this during normal sex, and prolonged the intercourse for as long as I could, sometimes for hours.) Around September 2015, while still experiencing pain during erections, I discovered a small lump in the middle of my penis, just underneath the head of the penis. Straight away, I was terrified and started to research it. After about 3 hours of research, I came to a conclusion that it must be Peyronie’s disease. After a brief period of depression, I decided to make an appointment with a private urologist in the London Andrology Clinic. It took the doctor 2 minutes to set the diagnosis. His advice was to start taking Pentox and use VED. He discouraged use of any other treatments. But overall, he said there is no treatment out there that is statistically likely to help me. Essentially, what he said was - I could do the treatment or I could do nothing, and the chances of me healing are the same. This obviously caused much distress to me, and I now regret listening to him, but regardless, I started taking Pentox and doing the VED. After 3 months, Pentox had no visible effects, so I stopped taking it after finishing the 90 day course. During that time, I fell into a depression and stopped looking after myself and monitoring the progression of the disease. I now regret that tremendously, as my condition has become much worse. From the moment I found out about the disease, my condition started to worsen more rapidly, than before I knew about it. I don’t know if it was psychological, or just the natural progression of the disease. Within 2 weeks of the diagnosis I developed an hourglass shape, which later went away and the plaque went from the middle of the penis to the top, which created a bend of about 10 degrees. Around January 2015, another plaque formed, although this time it was due to an injury during sexual intercourse. By May 2015, the bend was about 20 degrees, I lost about half an inch of length, but gained girth due to my penis being swollen. At this time, I stopped using the VED. The 2nd plaque merged somewhat with the first one as both increased in size. By August 2015 another small plaque appeared randomly on the right side of my penis, which later merged with the 2nd plaque, in effect connecting the 3 plaques.

As of now, the plaque on the front has increased in size and thickness, so that it’s both on the left, the top and right sides of my penis. The bend decreased to about 8 degrees. But the front 10 centimeters of my penis have shrunk in girth by about an inch, so that my penis slowly goes from thick to thin. I’ve lost at least an inch of length. My erections are consistently strong and might be even stronger now than before I had the condition.

After almost a year of running away from my condition, I finally decided to take it seriously. I saw one good andrologist and had MRI and Ultrasound scans done to the penis area.

The doctor who did the MRI scan wrote this in his report regarding the problems:

Observed unevenness  of tunica corpus cavernosum (possibly post-traumatic nature - history of injury, should be differentiated from the initial fibrotic changes - as a manifestation of Peyronie's disease)

Observed asymmetry of internal genital arteries D> C, and the dorsal penile arteries D> C.

CONCLUSION: MR pattern of asymmetry of arterial blood flow of the penis D> C. MR signs of initial fibrosis (or traumatic) changes tunica corpus cavernosum.


Taking into account what the doctor mentioned about the asymmetry of arterial blood flow, I was told to have an Ultrasound done, to determine the exact nature of the problem. The doctor who did the ultrasound confirmed the MRI findings and wrote this into his report:

Ultrasound picture asymmetrically low velocity of blood flow in the cavernous artery, hypoplasia of the left cavernous artery. Symptoms of Peyronie's disease.

He mentioned in the report that the velocity of blood flow on the right is 13 cm per second, and on the left one 7 cm per second. He said that he was surprised I wasn’t having any issues with erections, and that this asymmetry in blood flow could affect my erections as I grow older. He also said that it is likely hereditary.


The other urologist I went to see, examined my penis and told me that some of the plaques were still relatively soft and could be softened and removed through the injections of Collagenase clostridium. He insisted that is the only possible option that could help, and that oral treatments have shown no results of improvement. He also talked about some other treatments, like Stem Cell therapy and Shockwave therapy, but said those treatments are still in an experimental stage, and that he wouldn’t advise me to try them. I should mention that he said he wouldn’t be able to do the Collagenase treatment for me and that I should find a doctor in US and fly over there to do it properly. He didn’t suggest any specific doctors. He was quite confident in the fact that Collagenase clostridium would help me, but said that the calcified plaques won’t be removed and there is no way to remove them.

As for the cause of my disease, there are several reasons why I think I might have developed it:

1. The obvious one that comes to mind is the asymmetry in the velocity of blood flow, which the MRI and Ultrasound doctors have diagnosed. I am not entirely sure how it relates to the Peyronie's disease, as I am no well versed in medical terms, but I understand the asymmetry in blood flow can cause the formation of plaques or abnormal healing.

2. When I was about age 9, one girl in my school hit me hard in the groin when I didn’t expect it at all, and she was wearing shoes with a thick platform. She later regretted what she did, but said it was just meant as a joke. She obviously had to leave the school. I think it was the most painful experience in my life, and the penis was swollen and even some of the skin came off. I didn’t see any doctors for this condition, I was only taken to the office of the school nurse, who administered some iodine on the injury and then I stayed in bed for a few days, and the pain went away. Everyone assumed that was that. No further steps were taken. The 2nd urologist I saw told me that this incident might have triggered the gene that causes Peyronie’s, which must be in my DNA, as according to him only those who have this gene, have the predisposition to be affected by Peyronie's.

3. In the summer of 2013, 1 year before I discovered my Peyronies, I had just broken up with my fiancee, which was my decision, but it still caused me much distress, due to the ugly nature of the break-up. As a result, I refrained from having any relationships with women and did not have sex until the start of 2015, partly due to the discovery of my Peyronie's, and partly due to the sheer lack of desire. How it relates to my condition: during that time, I became a regular marijuana smoker. I would smoke it everyday, at least 3-4 grams a day from March 2013 to February 2014. I also used a vaporiser and many other methods of smoking marijuana. I also experimented with MDMA, but only about 4-5 times. During this time, my nocturnal and morning erections were non-existent, possibly due to the effect of marijuana lowering testosterone. I did no physical activities and ate mostly junk food. I also drank alcohol quite often. Only by 14 of February 2014, I decided to take my life back in control and cut out all harmful substances. I went cold turkey. I changed my diet to paleo and started working out. Everything was perfect on every level, but by May 2014, I started having painful erections, and then later on I found the plaque and discovered I had Peyronie's.

4. When I briefly changed my diet to paleo in February 2014, I started eating abnormally large amounts of protein, namely steaks. I started buying a range of different steaks from local grocery shops like Tesco and Sainsbury's. I would try to buy Organic steaks, but I would mostly buy normal ones, due to the Organic ones being more expensive. I would eat at least 1, sometimes 2 large steaks a day, for a period of about 4 months. Never before I used to eat so many steaks. Before I changed my diet, I would eat a steak only about a maximum of once every couple of months and sometimes less. Reading on these forums, I discovered that some members developed Peyronies due to the use of steroids. What I later discovered was that the normal cow meat they sell in the grocery shops like Tesco, is made by injecting the cows with some kind of steroids, so that they could produce more milk and to speed up the process of fowl and calf birth. This is just one of the hypothetical reasons why I might have developed Peyronie's. In general, I should note that my protein intake increased substantially, and whereas before I would only eat chicken or fish, now my protein intake was consisting of about 70% red meats. Red meats are known to affect the arteries and blood flow, as far as I know. Since I found out about my condition, I went back to my normal diet, which is about 30% protein, 60% carbs, 10% fat.

5. I won’t exclude the possibility of actual penile injury being the cause of the condition. But the only times I had an injury during the intercourse, was in 2011 and 2012, during the time when the girl was in cowgirl position, but those were relatively minor injuries and the pain went away after about an hour or so. Although I won’t exclude the possibility that this injury later turned into plaque, when my body was in the worst state and I started smoking in March 2014.

6. In desperation, I decided to try alternative methods. I was recently told by a psychosomatic expert, that the disease is a result of my previous bad experiences in relationships with women, as I was a serial monogamist. And that through this disease, my unconscious mind is trying to avoid having anymore relationships with women, to avoid the pain, disappointment and other psychological factors, which link in with my past experiences, my childhood and the myth that runs in my family when it comes to personal relationships. The verdict was that I have to keep working to find the exact root of this unconscious response and make it conscious, so that my body could start healing itself. I was told that even though I am still having strong erections, it is a natural biological response, but that for me to avoid relationships completely, my unconscious mind has developed a way to make sure I never have a normal relationship, due to my condition, which in turn ensures I never experience the pain that I mentioned earlier. She said it has to do with deep psychological fears. But then again, I cannot imagine why my unconscious would choose to create a source of even greater psychological pain, in order for me to avoid a psychological pain which pales in comparison. In any case, if this scenario is at all possible, there is a lot of further work that would need to be done individually and with the said psychologist in order to reverse the disease. I am not in a relationship right now, but I was for 6 months during the acute stage of my disease, and that seemed to have slowed down the progression of disease, and even softened the plaques substantially, which I think was mostly psychological. Later I had sexual relationships with 5 other women, but the condition seemed to be worsening. On a conscious level, I feel there are no clear psychological hang ups when it comes to women, even though my overall levels of excitement about relationships have gone down substantially, but I assume it is normal with age.

7. A doctor of Chinese medicine and homeopathy told me that the problem was in my liver and prescribed some kind of a medicine that was meant to cure me completely. After drinking all of it within a month as prescribed, I saw no changes in my condition, and it kept getting progressively worse. While my liver was confirmed to be completely healthy beforehand by numerous tests that I had done in 3 different private clinics, and all pointed to a healthy liver, kidney, thyroid gland, heart, testicles, testosterone levels, vitamin levels, and every other body part, except for the actual plaque formations on the penis. I had the last tests redone as recently as 2 weeks ago.

So this is all I can think of for now. If anyone could drop some words of advice, I would be eternally grateful.


There are several important questions that I feel would help direct me towards finding the best solution:


At the moment I am unsure on how to proceed with my condition. I am not sure on how to use the information I already have at hand. The one solution that comes to mind is to proceed with the Collagenase clostridium treatment, but I am not sure where to even start with it here in the UK. Going to the US or any other country is not a problem for me. I have guesses that the asymmetry in the arterial blood flow is the major culprit for my condition, but the doctors have not specified on how this information can be used to my advantage.

Should I take some kind of oral treatments, like Cialis, in order to increase the blood flow to the arteries ?
Is there a surgery that can be done to improve the blood flow ? And overall, has anyone developed Peyronies due to the assymetry in the blood flow to the penile arteries and is that something that’s hereditary or can it be affected by lifestyle ? As I understand, something must have been triggered in my body, for the first plaque to appear, and then the 2nd plaque appeared due to an injury, which did not heal properly, although in previous years any injuries would heal quickly ( maybe my body’s natural responses to injury and healing have stopped working, I have no explanation for this.) So far I have only used private doctors, if there is anyone out there who thinks I should try the NHS, then please advise.

Please don’t hesitate to drop any bit of information that you think might be useful, as I am quite desperate right now. These forums have been very helpful to me up to this point, but now I need the answers I didn’t seem to find through the research I have already made. Thank you all very much in advance!  ;)

Cosmos

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Steven Larrabee

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Re: 25 year old from London. My Peyronie's.
« Reply #1 on: January 17, 2016, 04:28:14 PM »

Cosmos: sorry to hear you got Peyroines at such a young age. I'm 57 and thats bad enough.
I don't think increased blood flow is the problem, but the scarring. Increased blood flow won't help that. And you clearly don't need cialis.

I never even heard of Peyroines at 25.  But I will say you have a healthy psychological attitude about it.

Steve
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QuackAttack

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Re: 25 year old from London. My Peyronie's.
« Reply #2 on: January 17, 2016, 05:00:42 PM »

Cosmos,

Seems to be a big day for new members which isn't what anybody wants to see because this condition sucks. Take a positive approach, continue with Pentox and VED. My URO who specializes in Peyronies said that in his practice Pentox and Traction shows positive results for about 60% of his patients. He did say that a lot of patients aren't very compliant with traction and you need 4 hours a day for it to be effective. If you aren't getting results Xiaflex and VED or Traction is another option or PRP with VED or Traction. My personal course is 4-5 months of Pentox and Traction before PRP or Xiaflex with VED and Traction.

Good Luck,

ohn
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Jonbinspain

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Re: 25 year old from London. My Peyronie's.
« Reply #3 on: January 17, 2016, 05:23:00 PM »


Steven;
This, from an ncbi.gov study explains how Cialis can help with Peyronies far better than I can. As you can see, it's not just used in Peyronies cases to treat ED.


Phosphodiesterase type 5 (PDE5) inhibitors PDE5 inhibitors have been shown to decrease oxidative stress-associated inflammatory changes, as observed in the pathophysiology of Peyronies Disease. Its mechanism of action results in an increase of cavernosal smooth muscle levels of cyclic guanosine monophosphate. PDE5 inhibitors, when given continuously over long periods, induce an elevation of nitric oxide and cyclic guanosine monophosphate which act as antifibrotic agents to reduce collagen deposition, profibrotic factor release, oxidative stress, and myofibroblast numbers.11 Levine and Latchamsetty demonstrated that sildenafil was a safe, effective, and well-tolerated first-line therapy for Peyronies Disease patients with ED.43 In another study by Levine et al, sildenafil reduced the incidence of postoperative ED in patients who underwent surgical correction of Peyronies Disease using pericardial grafting after plaque incision. However these results were not statistically significant.44 Valente et al performed a study in a rat model with a Peyronies Disease-like plaque induced by TGF-β1, demonstrating that sildenafil caused a reduction in plaque size.38 Ferrini et al performed a similar rat model study with a Peyronies Disease-like plaque
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Steven Larrabee

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Re: 25 year old from London. My Peyronie's.
« Reply #4 on: January 17, 2016, 08:38:04 PM »

I tried sildenafil for the first year and everything just got worse. It was worthless as is Pentox.  But I still take Pentox j(I have no idea why).

Good luck with Cialis but I doubt it will do anything. I wrote a urologist in Vancouver Canada after I was first diagnosed.  He's a professor of urology at the Medical School of British Columbia and one of the best urologists in Canada, and a specialist in urology. He said there are no effective non- surgical treatments for Peyroines and surgery is only indicated if the penis isn't straight enough for penetrative sex. Simple as that.  Sorry, but I think he's right.

But good luck.
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krazylord

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Re: 25 year old from London. My Peyronie's.
« Reply #5 on: January 17, 2016, 09:26:22 PM »

Hi Steven,

Well tell your doctor he IS wrong. I have talked to many guys who overcame Peyronie's with a multimodal/combination therapy that included pentox, dialy cialis and VED (+supplements). Also I have talked to doctors that have eliminated Peuronie plaques with stem cells. There are options out there. May be not definite but there are things that can help. Surgery is last resource, and your doctor obviously is not as well informed as he should.

I believe most of the old members here have way more knowledge about the disease that many doctors.

This is a marathon, not a sprint. The goal is to get better, or even get healed. How long it takes nobody knows. If you took ome year cialis and it didn't work, I can understand your frustration. But I would never give up any treatment that might help. I would just keep trying. Many people did not see improvements in years after taking pentox and cialis. Nobody knows to what extend they help, but it they can help a 1%, I would still take them.

I think the key is to try ALL you can. I am doing everything in my hand. After 9 months of my injury, my pains is gone. Now I am fighting the deformities and the loss of sensitivity. Focused on VED therapy, dialy cialis, pentox, and other supplements for fibrosis (muira puama, guarana, l-citruline and ginger... study here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4578663/)  I will be doing stem cell soon with dr. Zahalsky (study here: Effects of Stem Cell Treatment in Human Patients With Peyronie Disease. - PubMed - NCBI). I am doing David McCoid restorative exercises for pelvic floor muscles, which is 4 months program of daily walking (2.5 hours) plus extretches plus hanging exercises in monkey bars.

What I want to say is....your doctor is wrong. There ARE things you can do. BE POSITIVE, try all therapies out there, get out and live your life, be consistent, change your diet, sleep better...be your best self for a year, and commit to it. And see what comes out of that. If after doing all of that is all the same, then look at other options. But no way you can just say that everything that is non-surgery is not effective. This forum is the real example of the opposite.

Good luck.
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pfract

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Re: 25 year old from London. My Peyronie's.
« Reply #6 on: January 17, 2016, 10:15:10 PM »

I suggest you see the London international andrology, and the cadogan clinic for more help. Congrats on the way you assessed your condition. Good luck!
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Penile fracture during sex, Portugal, August 2014 (no surgical repair, left with moderate ed) / ultrasound, full assessment with Dr Irwin Goldstein, San Diego, California March 2016 / Saving for implant; Dr Kramer, Dr Eid? 2020?

Jonbinspain

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Re: 25 year old from London. My Peyronie's.
« Reply #7 on: January 18, 2016, 01:55:35 AM »

Cosmos;

I would second what pfract has said. If you can afford to go private, make an appointment with Dr Franklin Kuehhas at The London Andrology Centre.
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Steven Larrabee

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Re: 25 year old from London. My Peyronie's.
« Reply #8 on: January 28, 2016, 11:48:35 PM »

Thanks Krazylord for your words of encouragement. I'm not sure Pentoxifylline is doing anything but I keep taking it. I'm thinking of complaining to my health plan, Kaiser, here in the states that they have to pay for the Xiaflex injections now that they are FDA approved in the US. So far, they've said no, the bastards.  But I may sue them if they don't pay for the Xiaflex.
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mischa

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Re: 25 year old from London. My Peyronie's.
« Reply #9 on: May 01, 2017, 07:53:30 PM »

Although not reversing the use of Pentox and Cialis and topicals (you can read my other postings for my regimine) have "arrested" my increase in difficulties. I have stopped increased progression in so far as shortening, dents, twisting etc. I have also resolved 90+% of my ED. So I'm learning to live with where I'm at for now and hope for improvement.
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Mischa😕

UncleAidan

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Re: 25 year old from London. My Peyronie's.
« Reply #10 on: April 14, 2018, 03:24:55 AM »

I know this is an old thread but heard what you're going through with this disease and my heart went out for you. This is a horrible illness and I know that modern medicine usually doesn't do that much for it with noninvasive treatments. But I am firm believer that even the most stubborn diseases can be cured even if considered terminal. I've read a lot about peyronnies after I was injured. And I came across two alternative treatments that seemed to have high success rate. The first was an Ayurvedic medicine known as **Kanchanara Guggulu**. That is Guggulu blended with another herb. It has been shown to be one of the greatest treatments to reduce or cure the curvurature. I have heard guggulu has legendary healing power in Ayurvedic medicine and they even recommend athletes who are prone to penis injury to consume guggul to prevent the disease as well. Very strong medicine. Must be taken for at least a year three times daily to have best results. I do a tablespoon 3 times day...
Another treatment I have read great things about is ultrasound vibration. I read on line many people saying they used the ultrasonic toothbrush inspired by ultrasound therapy. And lot of those guys said they had great results reducing curve and pain tremendously. A few  I read said it cured their penis and it is completely back to normal after that treatment. I hope this helps and God bless you.
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LWillisjr

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Re: 25 year old from London. My Peyronie's.
« Reply #11 on: April 14, 2018, 08:50:54 PM »

Locked as an introductory topic.
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Les - 10 yrs Peyronies Disease free
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