23 Years old - Experimenting Peyroines Symptoms and Seeking Diagnostic

[BAtBAt]

Hello,

I must say it is incredible to find this encouraging community and that I am very thankful to have found it.

I am 23 years old, which I barely made.  My symptoms started the 13th of October of 2018.
I could tell every single day, conversation and detail but I look forward and try to keep it as short as possible and not go mad.

To resume and not complain too much but I have been through an immense stress, pain, exhaustion and hopelessness to the point of giving up in my own war over this. Now I am trying to fight and start to be positive and stronger to seek support and medical care again in hopes of a diagnostic and action to make it better.

It all began with a series of bends of my penis during intercourse. (my girlfriend for some reason was doing something weird and new, in a missionary position, she would surround me with her legs tight close and incline her pelvis degree a lot towards me)

I did no pay attention of any damaging effects but did not really like it or it was pleasing trying to ejaculate like that. It happened a couple of weekends. At that time I was also really very busy starting to study to hopefully enter the university, in the process of buying a house for my family and progressing professionally. Then, next weekend I believe she somehow jumped on top of me and hurt my bulbospongosius muscle area. Still nothing noticeable and I used to masturbate a lot at that time.

The following weekend, from a bj that seemed really strong, 2 days after I started somehow feeling my glans completely detached. Suddently I lost all night and morning erections and could not contract my penis. It felt as if literally one of my corpus Cavernosum closed, (after I discovered it was very close to the glans). It started by noticing by being really tired, more than normally and having no sexual desire at all. I tried to masturbate and literally could not get up my penis, it could not stand on its own and would literally bend down in 2 areas, both below the glans and a bit close to the base, where I had lumps. It was a shock. I also noticed a feeling as if it was not attached, it was as if my penis was no longer there and had tingling sensations. I always did sports and was very aware of the PVC muscles and would do exercises too. Now I would not be able to contract nor it would not have effect as to move my erect penis a bit upwards.

It was insane, I could not go to the bathroom nor feel my abdominal muscles or sensations. I barely managed to taking warm baths with salt. Perhaps due to stress but it reached a stage where I was worried for my own bladder rather than anything else. There was no evident swelling, no big pain, no blood though.

At that time I thought it was broken or detached. I did not think it could be peyroines as it was not curved but had little real knowledge or security to say what could happen. I did not want to go crazy so I was hoping a doctor would diagnose and tell me what to do.

I went through 3 different GP´s, to a urologist and to emergencies at an early stage, when I could not even go to the bathroom. Did blood, urine tests and an MRI after a month. (self-pay)

The first GP barely listened and practically sent me away for 2 weeks, as if I am a silly worried boy and I told him I have a scar but he could not feel it. So I went exasperated to a private specialist that seemed to listen more at least and sent me to have a blood and urine test with a nurse but the guy just disappeared and I heard nothing back after, just left the hospital...  Generally he had the same dismissing way to approach me, as if I was just a young male worried and I had to really insist to have at least a test done. He did not say anything as leave it or have a rest. He actually told me to try to have sex. No contact number, no email, nothing.

At the time, with my little knowledge or research I thought it could be the supensory ligaments due that it would not stand on its own. The urologist actually only paid attention to that I said to be checked, which was disappointing. Like if I say I hit my feet I think its the cause and the guy checks that instead of doing its own job to really make sure nothing is going on. I was paying for this ffs...

With all the stress and no clear guidance over the actual issue, considering this was my first serious experience with hospitals and doctors, I was hopeless. It was not getting any better, so I went to emergencies. There, I tried to tell I had some blood and pain (my gf advice to increase a bit the symptoms to be checked). As I saw none was paying attention before it seemed a good idea to try. But they practically kicked me after with the premise "you already saw a specialist" and had to argue with the doctor. But who was I with my problem? There is people out there dying and having huge health issues. I left.

All affected me so much, being in that state. I no longer had physical desire whatsoever and thought I will be impotent for the rest of my life. Even before having really enjoyed a sexual life.

I also battled to not believe with my soul there is a very dark side of the story. I do not want to get in it as if my gf is evil and did this on purpose. I say that because my mind could not understand yet how can something like that just happen out of the blue when nothing happened for 2 years. She did ask me how I was before I noticed the issue and apologized generally but I did not ever link it to this. There was something strange about it when I first told her something happened, she messaged me worried and seemed to reassure me all would be fine. But she did seem to be scared as F~@< and distant to the point of not kissing me the next day I went to her house, which made no sense to me as only guilt provokes such a reaction in my book. All was traumatic. My security was at its lowest and I was so scared.

After that, I still could not go to the bathroom and noticed that my penis was different. I went again to a GP but they sent me away without any checks just because I already have seen this specialist and went to emergencies...

I could not contract my muscles and it seemed as if my urethra was misplaced or not whole. I also did not feel it passing through. It got better after a week and half.

After a while, I received a letter for an MRI scan (this already middle of November). It felt as if there was still hope. I had support from my family and managers at work, which was amazing to see and really relieving. At that time the property purchase was completed. To be honest I depressed to a point I was literally a zombie moving the furniture and boxes. Purchasing a house also did make me feel bad for spending money on this. I take care of my familiy and always put them first but anyways..

I went to do the scan, I started having an erection from time to time although my penis could not stand on its own. I started buying red ginseng, ginko biloba, gotu cola and l-carnityne. It was mostly a pure placebo effect but I had to try to do something for it and feel I am doing something. As no doctor would prescribe anything.

I did the MRI and then that weekend I went to see my gf. We had a really good evening (which we did not after a while and these issues affected the relationship and my trust for her). Although even in my worst I was still emotionally and even economically supportive to her, which is crazy when I was broken and needed it myself. Really low esteem and security at the time due to this.

That night it felt as a miracle to see my penis up again for the first time. It was as if only the right corpus was working fully ok and I literally could not believe it. But after another bj, it seemed the same story happened but in the other corpus cavernosum. As if it closed. It was a nightmare and I really thought she did it on purpose or was trying just to hurt me. Because she was totally unavailable at this time although she would say she loves me and is with me. But guys, I learnt you must be strong on your own and sometimes we hope someone will help but we must keep up first.

Anyhow, I had to call myself for an appointment and well. The urologist I paid for literally told me there is no organic side to this and that all was in my mind. To go to psycho-sexual therapies.

I was devastated and I could not believe it. I asked the doctor about the scars in the scan but nothing. I tried to believe it, to say maybe its stress. I tried to masturbate that night, I saw again my corpus spongosium deformed and kind of pinched where it was bending downwards. My penis would literally not stand on its own erect or even semi erect...

I had lumps in multiple sides close to the base of my penis. I had an hourglass shape below my glans, where my penis width was the most notable and this also caused a paraphimosis in semi erection state.

I was desperate and crying. I tried to forget it all and keep taking my placebo ginseng  .

I was still getting a bit better than at the very beginning to be honest, from not having erections whatsoever to start having semi erections. They were mild and I could only have them on my knees. But I was trying to be gentle and bit by bit make the blood flow. I could only have physical stimulation to make it happen and I was scared I would have fibrosis due to total lack of erections (including night ones).
I was really worried, and to be honest it seemed as if I was losing hair (I am very hairy in my chest and belly) and as if the pubic hair would not grow...

I was happy at that time just with that, as I had no more strength to fight for this and it was still a bit better. After further research and noticing these as scars I was asking for my MRI scan and medical reports (waited 3 months and insisted everyone for this). To seek another opinion.

My penis was strange and not spongy anymore. It was as fibrosis or something. Plus the scars. This was tough, and it seemed also smaller in size.

In hopes of not giving up, I red in some forum a guy solved his issue with an ultrasonic toothbrush to imitate the shokwave therapy. I tried it and also tried the castor oil but I was no really improvements and stopped doing it just to not harm my penis more or worsen the lumps or scars.

Nothing going on related to doctors until December. Then I went again to the urologist in hopes of not giving up, but this time I was not alone, only to ask for my medical reports and tell that I still had scars and my automatic erections disappeared (Also at night). That I had pains and so. (I lost trust in this urologist and the bad service the guy offered to be honest)

The guy was nervous and from being so sure that I am fully ok and and its all in my mind (which is so dismissive), he started talking of operations and that he is not capable of doing them. WTF!!!

How does one move from all is ok to tell he is not that knowledgeable as to operate? Anyway, I was insisting and asking for a Doppler scan and he referred me to a andrologist that actually specializes in Erectile Dysfunction and Peyronies Disease.

After that, I started taking Acetyl L Carnitine and Ubiquinol + turmeric and bromelain in December, also kept the gotu kola but stopped the ginseng and ginko biloba. I started eating again more consistently after all those bad months and trying to be back. To do exercise, even if its a bit,
and sleep, keep positive and not stress too much.  I am a smoker though and I must say that before these events I was really stressed with the house purchase process, at work we had an immense campaign and I was smoking a lot more than normally the months before I noticed the symptoms. Now I still smoke...

I kept trying to masturbate gently, to also feel a bit well again and discard any psycologic effect, with vitamin E oil. I noticed good improvements and now I can have almost full erections and they stand at least on their own. But only if I am on my knees or on my feet. If I law down my penis does not really stand, it bends a bit and its really hard to keep erect.

I lost 2 cm of width below the glans scar and kind of lost a cm of length, for now. I still cannot contract my PVC muscles from the left side and never felt my penis again as it was. Nor full during an erection. I have almost constant pains right at the left side of the bulbospongosius and expands to the tight.

I still cannot have a full erection if I am laying down but hey, comparing to before its much better. I just want to make sure I can continue having a sexual life and children in the future. I do not care if I loose some size, I can work on it as I saw from many from posts in the forum.

I ordered l-citrulline and ZMA on top of the ALCAR and Ubiquinol. I eat lots of nuts and seeds (pumpkin, pine, etc) fruits, specially strawberries, grapes, bananas and watermelon or melon. I try to make sure I eat high testosterone foods.

I am also boiling ginger and drinking that. Also started preparing a natural oil from bay leafs as it seems it improves a lot the circulation. Which will be ready next week.

I recently got a referral letter from the andrologist (specialized in Peyronies Disease and ED), after waiting since December. The guy said he did not see any reasons to have a Doppler test done from the MRI and the other urologist report, to come and talk to him. In 2 weeks I have an appointment with him but just in case he will not do the US or repeat is all in my mind, I booked another appointment with another urologist, which is this very week (to see if I get the Doppler earlier and perhaps I thought of Pentox, as you recommend generally in the forum).

I also found a family friend that is a urologist (been told the guy is amazing) and was told to completely stop touching it or attempting to have sex. (which is really hard and I admit I did have attempted to have sex (blindly without really admitting the issue just in hope for a moment more) a few more weekends in between the story. It was not satisfactory but I could have some sort of semierection. (I was really, reallllyyy, slow, gentle and careful). But I am trying as I can to fully stop.

He told me to not take any Viagra, Cialis, etc. That I must get a Doppler, its the first test that should be done and that area is really sensitive. Once that tests is done, I will send the results to him and see (hopefully without 3 more months fighting and calling to get my medical reports). Maybe I can go to him for an operation or something. (I do not want more issues tbh. Not sure if anyone had an operation like Nesbit or Grafting or penis enlargement and so but I´d appreciate personal references)

Another family friend is a radiologist and I sent her the MRI scan. I am currently waiting to see what she says.

I do not know what it will be but I will update it in the forum. For now I still have erections with manual stiumation although I do have pains and lost sensation. The glans scar seems to also cause my paraphimosis when my penis is semi erect but I have no bend in my penis. Its straight but I still do not have any erections or literally feel excited since that. Its crazy. Its like nerves are damaged and I hope its all growing back and I can rather work in something psychological.

I tried to keep the story short  .   I forgot to also mentioned that after a month, in November, I had a sort of premature ejaculation for a while.

I can just finish saying that this forum was the most helpful and inspiring. That due to this events I have become a stronger and more realistic person. For now...I have a lot ahead.

Alas, the forum made me realize the importance of taking care of oneself and acquiring good knowledge, support that there is always hope. The human body can heal from lots of things and the penis can be also improved I believe, after seeing so many operations videos and so. At the end of the day, there is a lot more worse in life and people who struggle with huge issues.

Current phenomenology resume:

Both weaker and complete sudden loss of nocturnal tumescence, increasing pain in left side of bulbospongoium area that spreads towards the groin, my upper left side PVC muscles cannot contract adequately. Loss of sensation and excitation.


Physical symptoms and cause resume:

I started noticing symptoms since the 12th of October of 2018.

No evident initial or posterior bruising, swelling or blood.

Circular internal scar, right below the glans, which causes a hourglass shape in area. Resulting in some width reduction in the area and that provokes  a mild paraphimosis in semi-tumescence state. Visible internal smaller internal scars or lumps nearer the base, in both sides of area 2 in picture. Both appeared after it was somehow bent, I suspect repeated times (as I mentioned before).

Then I believe I was injured by a hit, from my girlfriend siting on top of the bulbospongosium. (I suspect this the reason for my upper left side PVC muscles inability to contract, pains and loss of nocturnal tumescence)

My corpus spongosium still has sort of deformations. It has some separations or its folded in the scar/lumps areas. Which is what I believe did not allow my penis to be standing on its own from the beginning of the events. It also cannot be seen where the glans scar is, which is surrounding the whole right below the glans.

Hope this helps and best wishes to you all.

P D: Forgive the spelling mistake. I am not an English native and kinda wrote this quickly.

[BAtBAt]

I got a reply from the Radiologist that saw my MRI scan but no signs of scarring.


"I finally checked your MRI scan and I agreed with the original report.No major findings can be identified.

Regarding your symptoms and self physical examination I can tell you following:
If you say that you had a previously direct trauma, usually this is followed by a haematoma which might be superficial under the skin and as consequence visible as bruising or might be internal and is not visible and could be detected  only at the time of trauma with US or MRI. I suppose that this MRI was performed later and not as urgent scan on trauma date.
Later on a trauma might have as consequence an epididymal cyst which was reported as present on your MRI and also might appears varicocele which some time if these are small cannot be rule out on MRI scan. Both conditions are given coming and going pains, ache pain.  
In your case the way how you described the pain I suppose that you have this varicocele. it is very easy to identified them through US.
I am not concerned about the penile shape in semi -tumescence state. More guys have this problem but no disorder in function. This state depends on amount of blood through the gland."

[BAtBAt]

Also,

Generally speaking, since the events I described I need manual stimulation to reach an erect state. Otherwise I do not have tumescences.
Since then I have also not ever had the same aroused/excited feeling as before and if I do its sort of not physical. (but it does not really reach erection state).

[TonySa]

Hopefully he's recommending an ultrasound then, ask for it with an induced erection as well as flaccid.  Then they can diagnose ED as well.

[BAtBAt]

Thanks for the advice and the attention.

Best wishes

[BAtBAt]

Adding that my only way to improve my Erectile Dysfunction was to completely stop contracting the muscles (zero), be on my knees and manually (gently) stimulate my penis with vitamin e oil and not touch what I believe to be scars (which have definitely changed the sensations).
From that in a matter of months, by every night and without expecting to reach orgasm or a total erection (which helps to calm down anxieties and just accept the body to try to enjoy), I ended up being able to progressively have an almost full erection without my penis corpus spongosium pinching that much. I still lost sensation where the "scars or lumps" are and at the whole glans. I need to manually stimulate it through the middle.

My corpus spongosium is no longer seen close to the glans and like moved to the right side. I believe it has to do with the initial bend there and cause of the hourglass identation. Where some of the scars are. It´s also as if one of what I´d describe to be the cartilages at each side of the frenulum of the penis is no longer there. As if my tip is screwed.

[BAtBAt]

I did not have any preconditions, I was grown healthy and calm. I always had a healthy diet, slept and exercised well.

During the time I had these first symptoms. I was not eating well (neither quality), smoking lots and not exercising for months prior to it. Really stressed (for as strong a mind can be the stress becomes evident, it adds as a consequent) due to multiple intense events of my life (aside subject), working a lot and definitely not sleeping well either.

 

[BAtBAt]

I definitely wrote a lot in the previous posts....

Before the scan I was advised to take 5mg Cialis a day for a month. Got Tadalafil as there was not Cialis, generic cheaper version. I have seen lots of studies that do recommend a month of daily 5mg Cialist and clinics that also combine it with Shokwave therapy to restore some vascular capacity, break scars, improve healing in soft tissues and muscles, etc. But to be honest I personally decided to not take any until the scan and after a while. It was giving me bad palpitations, headaches, dizziness and other symptoms that got me worried, for silly as it can sound, for worsening more my health. I said I would rather try to just exercise, relax above all, eat well and lots of fruits and vegetables. Specially rocket leaf and garlic. I found posts from hard flaccid treatments in other sites from people with pelvic floor muscles issues.

So I had taken the ultrasound scan a month ago and was diagnosed with a venous leak, possible pre-peyroines was not discarded although the scars did not seem to show in the scan and got referred to a (butcher) surgeon. No fracture evidence. The left side of the main arteries flow was poor and unusual, the right side was kind of filling or compensating some. I have not received any second opinion over that ultrasound scan yet.

The doctor that performed the scan did not perform a physical examination, I was injected with caverjet and would not get erect, partially due to the position. After the scan I did get a fuller erection, despite the deformations and literally missing parts of what was my penis before. I will keep the details short for now but wrote butcher because I have seen so much lack of knowledge on this matters, the way to operate in the medical community there and lost trust from that specific clinic I went to. Lots of things have happened.

As an example, I almost got kicked before the US scan. After traveling and taking time off from work because the nurses said they did not have any caverject, that I need to go home. That there is none in the whole country and they do not know when they will have any. After I went to speak to the hospital manager to at least let know that this is happening suddenly there was a last caverject somewhere brought by a different nurse.

The specialist followed up this by telling me I have a "congenital" venous leak during the consultation. That it would not matter what I do or take anymore and to go to the next specialist that is also surgeon and knows more than him. I know it is not congenital and initially said this as well, this was caused by acute injuries and he would not address that...Thus I have not seen the surgeon or specialist.

If having a surgery I better look for a true and good specialist and as such I researched everywhere and kept looking for second opinions as an open option. A clinic in London wrote back to me with a macro, for free tough and saw they surprisingly even have better prices, but did say it is really unusual to have a venous leak at my age. Foremost when I described not being able to achieve erections laying down. .

To keep the story short guys I tell you that I got screwed on purpose and it is insane what has been happening with her for months. I am now currently in the process of trying to get microsurgery in France. It seems I am very lucky to be young and might have some hope to restore it or improve this. I will surely try. Anastomosis is a part of the procedure and seems to fit the revascularization surgery.

I met a good urologist in this process, after this diagnostic he told me to not worry, to not take anything. To eat and sleep well and only take Cialis (if 5mg don't work, then 10mg, if not working 20mg) one hour before and only if trying to have sex until the operation. Above all to not stress and continue as normally as I can. Which I battle as everyone but appreciate a lot some reassurance from a doctor after all the previous experiences.

I have found that France is one of the best in microsurgery in the world and also use robotic help for it. I was not yet fully sure whether the scars will be touched or not but he said it is possible that the hourglass and what I describe as scars is all a consequence from an initial block in one of the main left arteries.

I have taken a dose of Citrulline, Ubiquinol, ZMA from time to time. Symptoms got worse, still have lumps, scars, hard flaccid, pains, deformation as if missing chunks, etc. True story and faith above all, believe in your will and body as a first treatment.

Thanks a lot for your attention and best wishes.

[Whyisthishappening]

welcome try to relax and do not trust doctors that offer a magic solution,always be sceptic ,and try to avoid aggravation of your symptoms whatever the cost(even to do not have sex with the sexiest woman) ,take care and search this forum you can find lots of info.

[YoungFella]

Take high dose testosterone before it's too late.

People here a ignoring the healing properties of testosterone and perfer to take some crappy  placebo treatments.

You got six months of acute phase now, take action and use the superior treatments and ignore all the old guys.

[BAtBAt]

Hi YoungFella and Whyisthishappening, I thank you so much for the reply.

This doctor that is organising the operation said there is an 80% chance of positive outcome and to relax. I really do not know what to expect nor can trust anyone anymore but I will be poking over this these days and can surely share it here. All I know, it is the best I heard by far although I did not see much about Peyroines and Revascularization procedures combined.

I fully agree at this stage I should do all I can, whether pre o peyroines it can be consequently more severe from further improper healing of the initial injuries I already have. Which never seems enough and stresses the hell out of my life daily. I will surely try to get second opinions, also try Pelvic Floor Therapy and all I can and more. I definitely believe to have all the most important and more sensitive areas damaged...my damage was well thought.....

At least he is a kind of friend and did not send me to F~@< off as a simply worried young man that needs psychosexual therapy or has a congenital leak.....he also offerered understanding and the operation quite before anyone else. It does make sense that ensuring I have proper flow it could help with everything. I do believe this is one of the causes of my issues due to the perineal area damages and maybe it helps with the raphe total deformation. I shall see as I am doing the impossible here, including economically and I do not really have many shots over this.

Signs and symptoms
Many men with Venogenic Erectile Dysfunction start having trouble with their erections from a young age.[4] Common complaints include a chronic soft erection insufficient for sexual intercourse, position-dependent erectile rigidity, difficulty achieving erections, difficulty maintaining erections without constant manual stimulation, loss of penile length and girth, and a soft glans of the penis during erection that is not fully engorged.

Physicians often look for signs that suggest an organic cause of erectile dysfunction rather than a psycho-osmotic cause in making a diagnosis of Venous Leak. Such suggestive signs include (1) Erectile Dysfunction that is persistent on all occasions where an erection is required, including with a partner and without a partner during masturbation, (2) Loss of quality of morning Erections, (3) Loss of quality of spontaneous erections, and (4) multi-treatment resistance to traditional erectile dysfunction medications including sildenafil and cavernosal injection therapy."


Outcome of penile revascularization for arteriogenic erectile dysfunction after pelvic fracture urethral injuries.
https://www.ncbi.nlm.nih.gov/pubmed/23206787

The combination of penile revascularization surgery with penile corrective techniques as an alternative to prosthesis implantation in patients with peyronie's disease accompanied by erectile dysfunction: Long-term results.
https://www.ncbi.nlm.nih.gov/pubmed/29255189

I also got some crap I still do not know about from the very last time I saw that woman I used to love so much, that one that screwed me on purpose and also cheated on me...insane....

I can tell I got a T test done around October when all this started to happen and came back normal. I expected more tbh  . I will try to check that then because it does make total sense and found lots of studies supporting the paramount role of testosterone against prostate cancer.

Testosterone is essential for sure, which it surely went down due to the immense stress, depressions, etc and I did not exercise anymore for a good while. I believe that my total lack of physical libido came more from the actual acute injury that damaged the erectile compound of mechanisms but who knows.... I am so lost on this sometimes, in spite of all the constant efforts and research.

Could you provide some more details about what you mean by "take action and use the superior treatments and ignore all the old guys"?

I was also told that vacuum and other can be highly dangerous. I will surely be back on those supplements and get Cialis in for a month .

What exactly do you recommend on top of that and the testosterone consideration? Should I check maybe if I can get the Shokwave therapy in the future?

Thanks for your attention

[BAtBAt]

I would like to add that one of the specialists I was referred to, Michael Fraser, can be found within the forum list of Peyronies specialists. He seemed really nice after we held a brief conversation over the phone but he did not see any reasons to get a Doppler scan done after receiving a referral from his friend (the one that sent me to psycosexual councelling...) and checking the MRI.

I kind of lost trust and cancelled that appointment, foremost coming from that initial referral, so as I got another specialist, sooner and for a cheaper price, that did not initially raise issues to get a Doppler done.

[Whyisthishappening]

because you are ready to have  a surgary which is something not uncommon but extreme , i would considering first the effects of  a scalpel on inflammed tunica albuginea. if not in chronic phase avoid injury can possibly aggravate your symptoms.many times doctors recommend a therapy judging by statistics,and not by individual cases .take as many opinions as you can and whatever is in conflict with your clinical symptoms and logical thinking do not give credit as much as someone is trying to convince you for the opposite.

[james1947]

This topic as an introductory has ended.
Please be kind and continue the conversation on the adequate boards

James