Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: Nervous on August 23, 2017, 01:06:45 PM

Title: Introducing Myself... Would Love Some Feedback!
Post by: Nervous on August 23, 2017, 01:06:45 PM
Hello All,

If you're able to read this and offer any direction I'd be very grateful but I completely appreciate that you're all busy and might not be able to. I'll try to be as efficient as possible here but I am a bit of a rambler and want to be thorough. I've been stalking the forum for a month or so now; I really do wish you all the best and thank you for all of the ideas/advice that you've already given me. This seems like a great community and I'd love to help others one day.

I'm 29 and reasonably healthy. I have a good, balanced diet, cycle to work and play a bit of squash/football but I also binge drink/consume lots of unhealthy food occasionally. Now that I'm considering my course of action with my penis, I'm pretty much cutting out caffeine, alcohol etc. and I'm going to try to eat healthily more consistently. I'm scared to exercise much at present as I'm scared I'll irritate whatever's going on down there. I haven't smoked for about half a year and didn't smoke too much before then anyway. Alongside a recent (cautious-ish) diagnosis of Peyronie's by a consultant urologist, I've also been prescribed Sertraline by my GP for Generalised Anxiety Disorder/Depression. I actually stopped taking the Sertraline as I was getting pretty suicidal dealing with it alongside worrying about my penis. I've decided to really try with CBT and a healthy lifestyle but I'm conscious that tension in my body/persistent anxiety over time might be creating/making me imagine some of my symptoms (I've bought a book called 'Heal Pelvic Pain' and plan on getting into a habit of stretches/mindfulness etc.). I'm currently speaking to a counsellor over the phone through my work's basic insurance. I don't recall injuring my penis at all. I masturbated 2-3 times a week and had great but fairly unimaginative sex with my currently very supportive wife about once a week. As previously said by others, seeing her undress etc. makes me feel very sad and pessimistic about the future! I'm not always in this down state but it's there most of the time! I've always occasionally had what seems to be considered a 'hard flaccid' but I've seen it as fairly normal for me. If I'm ever nervous or after sport, it goes tiny and firm. I guess I'm getting the 'hard flaccid' more currently as I'm consistently nervous. When erect, my penis is currently average.

From the beginning...

16/7/17 – I settled down to masturbate and noticed, on my semi-erect penis, that there was a raised bump, halfway around the right-hand side of the shaft. Like a half-collar. I freaked out a bit but got online and persuaded myself it was sclerosing lymphangitis or a thrombosed vein and that it would go away with rest. The raised bump changes in size but I don't THINK it's any different within the boundaries - when I'm relaxed and my flaccid penis looks healthy, it's like a very thin cord (1mm diameter). When I'm more stressed or a bit more aroused, it protrudes 2-3 mm and is clearly visible with a spongey sort of texture. From the beginning (only 5 and a half weeks ago), I've been able to get pain-free, decent erections with just a very small 'dent' where my bump is when flaccid. You can JUST see it but you have to feel it really. I've always had a slightly thin base. My brain keeps wanting to worry about that but I don't think it's a problem. The dent occurs where my penis is wider, halfway up.

18/7/17 - I went to the GP. He's a really nice guy. He said there's probably nothing to worry about and considered that my anxiety was probably making me panic. He asked me what hand I use and implied that it's just a little masturbation injury. The right hand side of my penis has been a bit more convex for as long as I can remember really... I don't think I masturbate irregularly and I keep my sessions fairly short. I've never used lubricant or anything but I've never caused myself pain when masturbating...

24/7/17 – I went back to the GP as I was freaking out and wanted to get some better answers. He was reluctant but did refer me to a urologist. When I found out the waiting time was very long (24-26 weeks for Ipswich, England), I decided to see one of Ipswich Hospital's consultant urologists in a private setting. I'm fortunate that this was possible but it was pretty much all of my disposable income for last month...

When I was waiting to see the urologist, I was pretty much abstinent and intermittently felt quite a lot of discomfort in my penis. It wasn't constant but it often hurt, rubbing against my trousers and occasionally in the car due to vibrations. One night I woke up to what felt like veins erupting out of my penis. I had a really ugly erection and a seemingly new, thin, hard vein had appeared which ran along the length of my penis, to the tip (I'm uncircumcised). This vein occasionally reappears and is probably where I get the most pain actually. I don't think the bump itself is painful but sometimes I feel a sharp sensation which feels roughly in the same area. During this time and quite a lot since, I was waking up sweating and I've had a few night-time panic attacks (uncontrollable shivering/struggling to breath).

9/8/17 – I saw the consultant urologist. He manipulated my penis like it's never been manipulated before and checked my groin/testicles etc. I'll give some key quotes: 'There is also some discomfort at the urethral meatus and mild dysuria'; 'foreskin is retractile and not scarred or inflamed'; 'I expect that this is a hardened area of tunica albuginea of the corpus cavernosum which has always been there. It is just possible that this is an extremely mild form of Peyronie's disease. It is very unlikely that he will develop curvature and pain'. I don't think it had always been there but I recognize this as a possibility. I was worried that he'd felt the ridge in a very relaxed state so I emailed him to remind him about the fluctuations in size that I'd mentioned but weren't present in his report. He replied, reiterating that he didn't think I had anything to worry about. I'm VERY aware that this sounds great. It reassured me a lot. As soon as I got home and kissed my wife, I couldn't contain a huge, repressed erection and we had lovely sex.

Until recently, I've kept on top of my anxieties but they're creeping back in because of a few things going on:
-   I can feel a second ridge, about 5mm towards my shaft from the first one. It's semi-circumferential like the first one. It's even less pronounced than the initial half-ring. When my my penis is relaxed, I can barely feel it. It might have been there from the beginning of this.
-   I've got a sort of burning sensation which I THINK is on my scrotum skin on the right-hand side. Sometimes it feels like this pain, which is really manageable, is moving up the shaft of my penis and into my urethra/meatus. This has been relatively bad today but yesterday, for example, I felt pretty chilled out and didn't really notice any discomfort all day.
-   I just have a general discomfort down there. I've always seemed to have a rubbish bladder but now my urethra feels just a bit more delicate... The other night I woke up to pee 3 times. It's very tied up with how anxious I'm feeling at the time though I think. The night before last I didn't get up at all after dehydrating myself a bit before bed...

I am checking my penis A LOT. I've probably prodded it about 20 times today. Is this stupid?

I'm getting night-time erections. I'm not wearing boxers to bed as I'm scared to damage my penis and I'm sleeping on my back as I'm scared I'll injure my penis with an erection into the mattress... this is probably pretty pathetic!

I'll try to sum up with some questions:

1)   Would anybody speculate on the likelihood of this getting worse? I'm very aware that I'm very fortunate to not have anything more aggressive at this stage but it's quite easy to push me into craving oblivion. It's reassuring that a lot of you seem to be able to have decent enough (some very good by the sounds of it!) sex lives. Is it 'odds on' that this will be the case for me? At the minute, my uncertainty is stopping me from having sex. I'm sure I could but I just don't want to do any damage etc. Reading about people developing curves that were once just indentations is terrifying. Should it be terrifying? Is it actually quite a manageable condition most of the time?

2)   Should I push for ultrasounds etc. to confirm my diagnosis?

3)   My NHS appointment still stands and I should be seeing a urologist at Ipswich Hospital in December/January. I'm tempted to ask my GP to refer me to somebody who is more specialist. So far, I'm considering Dr David Ralph (Harley St.), Professor Kevan Wylie (Royal Hallamshire) and Mr John Mcloughlin (Bury – close to me). Before I do this, I just wanted to get any ideas from this forum. Does this sound like a sensible idea? Should I pay to see one sooner?

4)   Would you be tempted to start taking medication right away? I'm taking Vitamin E Cod Liver Oil (suggested by the urologist if I felt as though I needed to take something – I know it's efficacy is in severe doubt!). If I was to start, I'd be tempted by COQ10, L-Arginine, Magnesium Chloride and perhaps trying to find some Pentox. I haven't really seen anything about probable/possible side effects... Is there anything else that you think I should be considering? Do you think it's necessary at this stage? Would Cialis/Viagra be necessary?

5)   The urologist said that I should just carry on as usual. Is it safe for me to have sex/masturbate/do vigorous exercise or should I be abstaining? I'm worried that I'm making any potential scarring worse when I get erections. Why does it keep changing in size? Are other parts of my penis pushing it out to make it more prominent or is it becoming swollen after something I've done? Would this swelling be normal or something I should be scared of/try to avoid?

6)   Could these just be innocent 'ribs' that some people talk about on the internet? Are 'ribs' innocent? I've seen they're called trabeculae... Are these normally associated with Peyronie's? I guess if the urologist has (perhaps speculatively) said a mild form of Peyronie's, I should trust him? Does it sound like it to any of you?

I think that's it! I'm very sorry for how long this is. If you've got any questions, I'll be very available to reply quickly. Like I said, no worries if you can't reply. This has been helpful for me as a distraction/organization tool anyway.

Hope you're all doing alright.
Title: Re: Introducing Myself... Would Love Some Feedback!
Post by: Nervous on August 23, 2017, 01:19:11 PM
7) Sorry! Should I be considering anything like VED at this stage?
Title: Re: Introducing Myself... Would Love Some Feedback!
Post by: DN on August 23, 2017, 06:11:13 PM
Well, sounds like Peyronie's to me. You should definitely! start Pentox and maybe even low dose cialis as many believe they help reduce scar tissue/plaque. I too have "mild Peyronie's" but I also have erectile dysfunction caused by it somehow. Only feel a few ridges but I keep finding new ones. I pretty much have felt the same way you have and I'm 5 months in. My scar tissue/plaque/fibrosis (whatever you want to call it, there is huge inconsistency on this term) has only grown. I think you will find that yours will too. I saw Dr Lue a Peyronie's specialist and he said it will get better and not to worry but many on here have said theirs got worse out of no where months into it. Makes me very skeptical of urologists saying not to worry. I am currently on Pentox, l argenine, tadaladil, vitamin E. Good luck! If you don't have ED you're in good shape.

Did your anxiety disorder come about because of this condition? I've been talking to a psychologist after this diagnosis and he suggested antidepressants but I'm thinkin about just trying to stick it out and see if it gets better
Title: Re: Introducing Myself... Would Love Some Feedback!
Post by: Nervous on August 24, 2017, 10:15:30 AM
Thank you for the reply DN!

I spoke to more of a Peyronie's specialist on the phone earlier and he didn't seem too concerned despite me mentioned pain and indentation... he said that, at the end of the day, xiaflex and surgery can solve the problem if it gets worse and stabilises. He said that he wasn't even sure if it was Peyronie's as it was rare for people my age. He seemed confident that it "burns itself out in 12 months"! I loved hearing this but this forum doesn't support that notion... I want to be optimistic but I'm really struggling. He's pretty experienced with the condition... great credentials and performs surgery for it. He wasn't mentioning surgery etc. for the money. He mainly works for the NHS and advised me against touring the country, spending money on private consultants.

Thank you for the suggestion of Pentox. I'm going to see my GP tomorrow (I'll take the studies and state my preferences) but I don't think I'll get it prescribed in the UK. We have Potaba I think but, even then, I don't think they'll want to prescribe me anything. My 3 doctors have said don't do anything but this forum STRONGLY advocates getting on with it! If I take CoQ10, L-Arginine and Acetyl L-Carnitine at the recommended doses, is there any chance it could make Peyronie's WORSE? I don't mind about any side effects like nausea etc. but is there any chance it will mess with the plaque formation and worsen things?

Would you suggest buying Pentox over the internet? I read something about it being bad if you've got a low tolerance to caffeine (pretty lame on my part but it does mess with me)? Is there anything else I should be worried about? Once again, could it make Peyronie's worse?

I've had anxiety all my life and, just in the last couple of years, it's ramped up to include panic attacks and fairly obsessive thoughts about my health/mortality. I was put on Sertraline about a month ago (noticed the bump 6 weeks ago) but, alongside worrying about my penis, I couldn't deal with the side effects. I think a lot of people have success with SSRIs (plenty of colleagues) but I'm going to try CBT and healthy eating/lifestyle etc. I'm speaking to a counsellor and my wife is very supportive (had a little cry this morning though because I'm letting it affect my brain/sleep/willingness to have sex).

IS IT SAFE FOR ME TO HAVE SEX/MASTURBATE? IN THE ACUTE PHASE, COULD THIS WORSEN SCAR FORMATION?

Anyway. Thanks again for the reply. I THINK we're reasonably similar with age/condition so it would be good to update every now and then if that's alright with you. I'll try to get more brief with my writing.

Hope you're doing alright.
Title: Re: Introducing Myself... Would Love Some Feedback!
Post by: DN on October 13, 2017, 01:56:41 AM
Sorry for late reply, sorry to hear about your anxiety, this condition has given me a new understanding of how debilitating anxiety can be. I hope we both get control of our anxiety. Those things won't make peyronies worse, they are thought to make it better. It is worth trying pentox for 6 months, my doctors would recommend it and they're the "best" but let's be honest there are no peyronies doctors, there are peyronies surgeons. The only things proven to work are xiaflex and surgery. My doctors do say that the severity of my issue and probably yours is mild enough that it might get better to the point that it is not a bother. Mine continues to get worse.... Hard to be optimistic when you see it degrading. Good luck and know that if you have ED and big curve there's always an implant! Its not great news but done by the right doctor many people love it. Don't let this end your and life. None of the doctors have said stop masturbation and sex, but they said if it hurts, stop.
Title: Re: Introducing Myself... Would Love Some Feedback!
Post by: NeoV on October 13, 2017, 08:35:20 AM
Quick things, do not erection check! This is not good for your penis if it's already inflammed, and it leads to masturbation usually over time. You need the inflammation out of your penis, leave it alone, entirely, for over a week until it feels elastic when flaccid. I had to leave my penis alone until sperm would literally come out when I peed. At that point, it felt very elastic and my symptoms improved, while my erections felt very strong. Now, that is a bit extreme, but it's just an example. When I say rest, I mean rest.

Second, urologists know very little. You are your new best specialist, so research away! The ridges are indeed normal, everyone has them. These branch off the main dorsal vein of the penis. Masturbation or sex is safe if done carefully, you take a long time with it, and you don't do it TOO OFTEN.

Get your fasting blood sugar below 90, exercise, stop spiking your blood sugar with carb heavy meals. You will get better with treatment or basically, awareness. Simply being aware of your options and taking steps to improve your condition can lead to massive improvements. Traction is a miracle, and the only thing I swear by besides diet. My symptoms are basically gone for the most part.

If you have ED and Peyronie's, you likely have hidden metabolic issues, and poor vascular health. Work on THESE METRICS, and forget your penis. Your penis is a baromter of your health, so focus on overall health. Go extreme and go all in. If YOU remain healthy throughout your life, then you will likely have a healthy penis. Get serious about traction and consider VED too if you like. Be careful with it.