24y/o with many questions

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algie

Hi all,

I'm 24 y/o, single and was recently diagnosed with Peyronies Disease.

I think I'm still in the acute phase (flaccid pain, erectile discomfort, self-estimated curvature of 30-40° (left) and 30° (up), hard flaccid, not sure about changes in length and girth).

Timeline:

2-4 July 2021: Onset of noticeable symptoms (curvature, hard flaccid and flaccid pain/sensitivity).
13 July: Visited 1st GP and mentioned I was worried about Peyronies Disease. He told me there was nothing wrong.
13-18 July: Visited 2nd GP and mentioned Peyronies Disease again. She told me there was nothing wrong.
19 July - 19 August: Serious doubts as to whether I was going crazy or whether something was wrong with my penis.
20 August: Visited 3rd GP, who diagnosed me with Peyronies Disease (he was the first to ask for a photo).
25 August: Visited 1st urologist, who confirmed the diagnosis. He wanted to "wait and see" and refused to order a blood test or ultrasound >:(. After I pushed back, he was willing to refer me to a 2nd urologist who has more experience with Peyronies Disease.
27 August: Started taking Coenzyme Q10 (360mg), Acetyl-L-Carnitine (2000mg), L-Citrulline (1500mg) and Ibuprofen (only when pain is debilitating).
31 August: Visited 3rd GP again. Told him I'd like to start a multimodal conservative treatment asap because I want to avoid surgery (I wrote an essay with citations and bibliography to get this point across :-[). He proposed to call the 2nd urologist to discuss the matter with her. I also asked him to refer me to a 3rd urologist (one of the most authoritative experts on Peyronies Disease in my country) but did not get a referral yet because the waiting list is excruciatingly long and I still have to meet the 2nd urologist.
7 September: Added turmeric (600mg) + bromelain (300 mg/720GDU) to the aforementioned supplements. I also generally try to eat healthy but am not following a diet.

Next steps
My GP told me to call his office tomorrow (9 September) to inquire about the outcome of his conversation with the 2nd urologist. I hope I'll get a prescription for pentox and a PDE5i.
I ordered a PMP on 21 August. The manufacturer told me they were experiencing delays due to the pandemic. After a couple of desperate and semi-angry emails, I received a message today which stated that my parcel will be delivered on 13 September.
I have an appointment with the second urologist on 14 September. I hope she'll be willing to consider pentox + PDE5i + traction (+ VED?). I'm hesitant to start PTT and/or VED therapy without professional supervision.

Mental health
All of this has been absolutely devastating from a psychological point of view. I really tried to get an early diagnosis and treatment but I'm getting more hopeless by the day. I haven't been able to focus on anything other than Peyronies Disease for the past couple of weeks, have been sleeping very poorly and don't really have anyone to talk to. Although I'm not the type of person who tends to measure his value or masculinity by the length or shape of his penis, I'm extremely worried about further progression of curvature, shortening and/or narrowing. I've also been feeling guilty about how I might have caused or worsened my condition, whether I'm too passive in tackling it, etc... I even feel a strange kind of meta-guilt because, in the end, this is a benign condition and many people who face life-threatening diseases are also waiting to see a urologist.

I never really worried about the fact that I'm still a virgin but have recently been overwhelmed by grief. I'm afraid it's going to be infinitely more difficult to find a partner and get intimate with her (I wasn't very confident in that regard to begin with). Even if I find someone, I'm probably going to be stuck with some degree of inhibition for the rest of my life. I'm trying to stay positive and resilient but it hurts to know that I'll never experience a normal, careless sex life.

Questions

I decided to write this post because I was hoping to receive some advice regarding my past steps and future plans. Is there anything I should be doing (differently)? (e.g. Should I order a VED? How could I add hyperthermia into the mix? Should I try manual traction until my PMP arrives? Is there a protocol for starting PTT? How does one safely practice PTT with hard flaccid? Should I ask for a specific PDE5i? How do you measure erect length if you have an acute erection angle?) Is there anything I shouldn't be doing? (e.g. Are erections good or bad? Is careful masturbation good or bad? Should I eliminate yoghurt, bread, coffee, fruit, etc. from my diet? Should I add something to my diet?) How does one deal with the psychological impact of this disease? I've found answers to some of these questions on this forum, but would still appreciate any and all advice I can get.

Apologies for the verbosity of this post and thank you very much for taking the time to read it. I hope I'll eventually be able to make a meaningful contribution to this forum.

N.B.
I'm not actually from Brunei. I live in Europe but prefer not to specify my country of residence.  
24 y/o
Onset early July 2021
Curvature approx. 30-40° left / 30° up

Treatment:
CoQ10 (360mg)
ALCAR (2000mg)
L-Citrulline (1500mg)
Turmeric (600mg) + Bromelain (300 mg/720GDU)

Hopefully starting soon: PDE5i, Pentox, PMP, SomaCorrect

Lostandsad

Welcome to the forums, very detailed introductory post. Better late than never to start treatment on your own. You seem to have already read the survival guide and filled out your signature line already, so that's good. I personally did not like the "wait and see" approach myself and tried to do whatever I can. I got the same exact email from the PMP guys and mine is coming on Sept. 13th as well.

Your mental health concerns are very valid. I'm going through the same thing. Peyronie's disease has taken over my life and all I'm doing is looking for answers, and losing hope. But I'm still early, so I have some hope that I can maybe stop the progression or get as close to my pre-peyronie's penis as possible. I just ordered a VED too, so hopefully that would help.

I have hard flaccid as well, but it goes away when I lie flat on my back on my bed. My penis becomes very elastic and I can do manual traction on it then. Erections are good because it introduces fresh oxygenated blood into the penis. But I believe we should not be masturbating, since it will cause further inflammation(I always have pain after masturbation, so there has to be a connection for sure). I believe sex with a fully erect penis is okay, as long as it's limited and in positions where you don't risk doing further damage to the penis.

Some members don't bother with diet here, and some swear by going on a keto diet to reduce inflammation. That makes sense since this is an inflammatory disease, so I think that can only help. I believe there are many positive studies on hyperthermia. People here either use a rice sock, infrared heating pad, or a hot shower/bath. I think some using a heating lamp as well.
I wish I could help more on the psychological aspect, but I'm struggling with this myself. Just remember that everyone's body and penis will react differently to each method treatment, so what works for someone else here may not work for you. I wish you the best of luck.  
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray