New UK member, hoping I will get better


#43

So went to see the Urologist again today, I always feel rubbish after going to these appointment, I have just got to the point where I hate having to discuss things with doctors. Seen so many damn doctors it seems recently!

So he firstly reviewed my blood test results which he thought was still broadly speaking alright. They are really at the lower limit of normal though (borderline really). I think if I pushed he would have boosted my testosterone, but I can understand why he was reluctant to. It can come with its own problems boosting testosterone and it might not do anything as many people on this forum have seen. That being said, I don’t know whether I would benefit from testosterone being boost really. Maybe I would? Am I producing enough to ‘heal’ the penis? Perhaps for the time being I should trust him.

He still seemed confident that I would improve and get better in the coming months. He thought I needed more time. He felt that finasteride had tipped me over the edge for ED but that my recovery was being prolonged by anxiety and worry about all this. I am not sure I agree with that really. He does not thing there is anything structurally wrong with the penis (although no examination, scan, etc).

I asked about doing an ultrasound scan with an injection of the penis so its performed when erect. He was not keen as he felt these scans prove nothing and show nothing, He said it is entirely possible for a young man to be nervous which produces adrenaline which inhibits the chemical being injected (adrenaline it turns out is the antidote to the injected chemical to cause the ereciton). He had no problem performing an injection on my to ‘prove’ i can get an erection and maintain it since this is a psychological block for me at the moment. Its probably worth doing just to prove to myself I can get a normal-ish erection.

He doesn’t believe in venous leakage (well, unless you are born with it or have had some kind of surgery). Since I was alright pre-finasterdie with erections (well, they were fine, I was never a pornstar though!), he I won’t have a venous leak. He said if I can’t maintain an erection, it is more due to not enough blood flow being pumped into the penis to make it fully rigid. Again, I wasn’t entirely sure about this!

With regard to shockwave, he said I could do it but he felt the money might be better spent on psychosexual counselling. He said I am very anxious about all this and I think he though I would recover faster with this really. I really hate it when people talk about anxiety and PFS really. I was anxious before PFS too but I could get a normal-isn erection. There is definitely something physical going on here.

I think this just shows there is no magic bullet really. Shock wave may well not help and would just be expensive. He’s probably right about the testosterone. And of course stay on tadalafil long term.

I disagree with a lot of what he says. But … is he sort of right? I mean, maybe the only real way to recover form this is time and tadalafil? Testosterone could screw me up more and shockwave is a gamble really?

I actually got sent an appointment today to see an NHS Andrologist which is good at the end of the month. I think my plan is to give it more time and see how I’m improving. If I’m no further after a month, I can as the NHS for the scan with injection and potentially still do the shockwave privately (the doctor today said I could if I wanted to, he just didn’t know if it would work). Will also keep testing testosterone although this may go up because of the vitamin D

So yeah, its just super frustrating that there is no clear path forward really, no established treatments for all this. Everyone is in the dark and there are no guarantees with anything. I think time and tadalafil are the best route for now. And Vitamin D!

Will let you guys know how I’m getting on and we can re-assess things when the NHS appointment comes around in a few weeks.


#44

Hi Will

As of from talking to you in the past I know you are a very level headed intelligent guy and its good to know this as their is some what i suspect are hypochondriacs on this board on the other hand you have actually been a blessing to me as you are in the UK and are going through the NHS motions like myself though you are more than one step ahead of me in the pipeline so your information us valuable to me and the way you deliver it is outstanding and sensible.
However Unfortunately from reading this post I can’t help but feel even more condemned with my situation as it very similar to yours.
I cant understand why the doctor said these tests are more or less pointless these are the very same tests that i had my hopes pinned on its very disappointing to hear this news.
Please please keep the forum and myself updated with any further information I will do the same my end.
I never imagined I would still be in this shit hole situation years on post Finasteride I’m sick of feeling less of a man due to having to rely on viagra for any type of sexual activities it just isn’t human or humain to be dumped in this situation all due to a drug that was supposed to assist me keeping my hair of all things it’s not like it was a life threatening, admittedly it is life changing but nothing like complete impotence this whole situation is just sickening.
Thanks for everything Will your time is highly appreciated


#45

Thanks Baz, dropped you a PM with a few suggestions for your situation.

Will


#46

Thankyou Will
You have truely been a saviour of sanity
Your advice and support have been absolutely 1st class its people like yourself that make forums like this one work.
Sensible realistic valuable advice
I starting to think that you are a doctor

This is a public thankyou from me to you mate

I hope things get better for you I will keep you up to date on my hospital appointment with the euroligist hopefully I will be able to repay you with some advice / information after my visit.
Thanks again Will your a star


#47

You’re welcome mate. Just want to see you getting better.

I would be tempted to see if the urology department has a cancellation list. 6 months seems like a long time to wait.


#48

To the best of my knowledge, lavender oil if for external use, not for ingestion. It may help temporarily if you smell it. Silexan however is a capsule and it is made of the flowering tops of a specific lavender plant because that is where the higher concentration of the chemicals that affect anxiety are concentrated. Silexan is known to improve anxiety by affecting pathways in the brain. You can order Lasea (which is silexan) on line I believe.


#49

So the doc pretty much said it is psychogenic, which is a denial that PFS exists.


#50

I think he does think there is a part of this which is physiological but my recovery is being delayed by the anxiety component. How do you prove it?! I don’t feel my anxiety is really playing a significant role really. I have been anxious my whole life and my erections were never particular affected by it. I can tell that what is going on with my penis an erections is definitely a physical cause. No night time erections, no morning erections, etc.

I feel there are significant holes in the story this urologist describes really (like above, no morning erections suggesting anxiety is not the cause) but the only reason I went to see him is because he has access to the shockwave which I may decide to do in the future and its a reasonable price. Most places in London charge a lot of money for shockwave - 12 sessions at London Andrology is £6,000 which is shocking. Its around a 1/3 of the price with this Urologist. I have checked the machine, and its the ED 1000 machine so one of the mainly used ED machines and he is a consultant Urologist still who would be performing the procedure.

I still feel like I haven’t found the right doctor to take my care for this condition forward. I actually thought that the London Andrology doctor had a good plan but I just can’t afford several thousand plans to go ahead with his plan. I also feel like his ethics are slightly questionable with just wanted to put money above everything else.

I’ve got an appointment with an NHS andrologist in a few weeks so just gonna wait until then and see what this new doctor says. Perhaps I will feel more confident in this new doctor? I hope at least they will investigate whats going on with an ultra sound with erection.


#51

As you already know Will im going through the same motions with the NHS system myself right now I just hope they see sense in all that we say to them and that at some point one of their tests shows an abnormality which gives them further reasoning for investigation.
A calm cool level headed highly rational guy like yourself surely can’t be pushed out of the door with no answers.
I understand that the sexual side effects are highly complex but surely someone has some insight and understanding these side effects are so frustrating and life changing for guys.
How can a man feel like a man when his sexuality has been taken away.


#52

I would strongly advise you to get a second (well, third) opinion on shockwave.

I’d try to ask someone who has nothing to gain from its use. I’d also suggest you look on this forum for evidence of anyone having had the treatment and message them to find out what their experience was.

I urge you not to throw thousands of pounds at this without any evidence of likely improvement.

The recent PFS study cost $25000, if you want to invest £2000 in your health, I’d suggest a similar study is more deserving of your attention.

#justsayin


#53

Completely agree Greek, and its a very valid point. This is why I have not gone ahead with the shockwave treatment and I am only viewing it as a potential option currently.

I think whether the shockwave would help or not depends very much on the diagnosis of what is causing my particular problems. I suspect different guys with PFS have different problems in relation to their erections. Based on the conversions with my doctors so far, it seems like the best explanation currently is the smooth muscle of the penis itself has been damaged by a lack of DHT and there is some evidence to suggest shockwave can repair the smooth muscle and make it sufficiently strong to ‘hold’ the blood again for a solid erection. However, this still just a hypothesis and I would still like further tests for a proper diagnosis really.

In relation to the studies, this is an area of PFS that I have not investigated yet but I am aware people have been talking about. I must say, my first impression is slightly sceptical (at least in terms of there being a short term treatment from the studies) purely because of the wide range of types and presentations of PFS makes me think this may in fact be many different types of ‘diseases’. This would instantly make me think this is much more complex thank first thought and certainly trying to find a treatment in the short term harder. However, I am not a scientist and I could well be wrong about all of that.

Certainly, in the longer term, the studies represent the best hope for all PFS sufferers.


#54

I agree with you Will. Although possible, I find it hard to believe that my neurological issues (no sexual sides) is somehow going to cured the same was as someone with dry skin, sexual side effects, or the myriad of other disparate issues folks report. Fin may have been the trigger, but I’m skeptical as well if all our issues are the same.


#55

These sides effects come in groups i.e
For myself …
Erectile dysfunction
Lack of libido
Dry skin at scalp eyebrows and sides of nose
Extreme Fatigue
Memory issues

So that’s 5 main issues

The next guys list would be different but still most likely be 5 or 6 main issues

I wonder how much of a role our autoimmune systems response has to do with these side effects.


#56

you and I do not share a single issue. My list is:

Dizziness/lightheadedness
Derealization/vision issues
Head pressure
Headaches
Muscle twitches when falling asleep


#57

This is what i expected really which makes me think that certain key symptoms come hand in hand with other symptoms i.e
Your list is mainly head / brain related followed by muscle related problems.
My list is more sexual / physical followed by memory issues pointing towards the brain
We see these patterns again and again it is rare that people end up with a full spectrum of prominent side effects it’s usually a case of batting one way or tge other with more prominent sexual side effects or cognitive side effects.

It would interesting to know how many people on this forum have autoimmune system problems as it maybe as simple as that as to who is safe and isn’t safe to take finasteride.


#58

Not sure if it helps, but I’ve had a full autoimmune profile and everything came out normal


#59

I have things from both lists. I don’t have everything from both lists.

Though the symptoms may be different, the cause is the same.

By bundling symptoms together and saying that people have different conditions according to those symptoms, you’re dividing us all up into subgroups, significantly reducing our power, we are all stronger together and ignoring that we all ended up here because of the same unknown mechanism. Instead of looking at the end of the chain, we should be looking at the beginning. The point at which these conditions start - the drugs that start this and the reactions they cause.

It makes very little sense that you have different symptoms to other people, but given that we all are left with the symptoms long term following cessation of the drug it’s correct to suggest that the mechanisms are related.

So, same drugs (those that interact with 5AR) cause the side effects. Same long term experience of the side effects.

It would be far better to treat the cause and then the downstream effects. If we knew what these 5ar inhibitors were doing to those who are negatively affected, we’d be able to plot something to correct those things and presumably the symptoms that we are experiencing.

If it costs £10 to research the effects of 5AR inhibitors and I have £4, you have £4 and someone else has £4, we can get it done if we pool our money. If we insist on only funding studies that are focussed on our particular conditions, we get no studies, no results and no relief.


#60

Everything you say is very true though my train of thought wasn’t to divide us all but more to try to ascertain if the issues were autoimmune system related.
You are definitely spot on about the funding mate


#61

Completely agree - hence why I contribute to this forum (both with my bitching and moaning) and also financially.

However, take me for example - I have the VDR homogenous mutation, say my viitamin D levels were super low, and as a result when Fin hit my body, it was in a unique position to destroy my brain. However, maybe someone else had a MTHFR mutation and it impacted a different area of the body. I guess what I’m saying is what if the trigger was the same for all of us, but the damage is different. Still not a reason to divide, but a sad truth we may face. I’m excited to see the results of the 23nMe project, especially when mapped against the symptom survey.


#62

I get you and I’m sorry if it seemed like I was being critical. It’s been a long day and I think I jumped ahead with something when maybe I should have read it a few times.

We are a small group and need to accentuate the similarities, not the differences, which happily it seems that everyone is prepared to do.