So I went to see a Consultant Andrologist yesterday. This person is named on the PFS foundation as one of the two leading consultants in the country to consult on PFS (I live in London). I feel a little reluctant to name names so it doesn’t come up on google searches and I can therefore give a more honest opinion on my experience (although check my members story post if you are desperate to know which consultant it is).
I am not sure what to make of it all really. There are parts of the consultation that concern me, but also part which were hopefully and I am hoping he is right!
So as a brief reminder, I am basically suffering from persistent sexual side effects, a month with erectile dysfunction after stopping the drug. Tried cialis, some help but still big problems with erections - can’t have sex. His theory is basically that the lack of DHT has caused some damage to the smooth muscle of the penis. This will not show on an ultrasound, MRI, etc. But this is potentially reversible using three steps. Firstly, Cialis 5mg every night for three months (probably long term actually). 2) if testosterone level are low or normal-low then boost with Clomid 3) Shock wave therapy for the penis.
I felt uncomfortable during the consultation because it was very clear that he was pushing the shock wave therapy very hard and it is of course very expensive. I asked if I would recover without the shockwave therapy. He basically said no, but this doesn’t account for the many people who do get better from sexual side effects after discontinuing the drug without shockwave. Some people do recover over week/months and do not need shockwave? How can he be sure I am not one of these people?
I asked how confident he was he could resolve this for me and he put the figure at around 90-95%. I just thought this is far too high! What other treatment can there possibly be in which there is a 95% success rate! He also said the risk was 0% for the shockwave. My understanding is shock wave is a non-FDA approved treatment with relatively limited evidence (certainly not long term studies), no establish protocols, etc. There must be some risk, even if small.
My theory is I wonder if he thinks I probably will notice improvements over the coming weeks just with continued cialis use. I am not sure i will take clomid, I suppose my hormone tests will be fine and I think it might just help to let my system reset itself (if it turns out my testosterone is low, perhaps I’ll think again.) So is he just thinking I’ll improve and the shockwave is almost like a sort of placebo. It might even help a little but I find it hard to believe it will bet the critical element of this treatment plan.
To be fair, maybe he was saying this because he could see I was anxious. He wanted to calm my nerves. But over hyping all this makes me lose trust in him and not sure what to believe? If I can’t believe the claims about the treatment, can I believe what his theory of the problem is i.e. smooth muscle damage from lacking DHT? Is this all just like the saying: ‘when you have a hammer, you see every problem as a nail’. He has the shockwave, and it doesn’t really matter what my problem is or if its entirely the right treatment - he will use it.
There were also a number of what I felt were quite obvious errors that he made during the consultation:
- No blood test for oestrogen. In fact, he basically just did Testosterone, Prolactin, FSH, LH. I was pretty convinced that oestrogen (and probably many others) should be included. I am certain that finasteride has the potential to screw with oestrogen. I had pain full breasts during terminate - almost certainly due to oestrogen imbalance. He didn’t think so - wtf?
- No DHT medicine. I do not want to take this anyway, but it came up in the conversation and he said there is no medicine which can raise DHT but there is in fact a cream. How can he not know this? World class Andrologist? I’m not gonna take it because it probably wouldn’t work - but I would have thought he would know one exists.
- He was not surprised my libido was fine because DHT is not linked to libido. Not sure about this?
I also decided to get second opinion from the NHS Urologist who pretty much put the fear of god into me about my symptoms and I’ve felt fucking awful all day because of it. Went to see him, he basically said there is nothing I or he can do and he doesn’t know if this is all permanent. He said it is serious and made me feel like complete shit for taking the drug and I have been stupid and foolish. He didnt offer any blood tests, no treatment and basically said it will either get better or it won’t. After hearing that, I feel like this might be the worst day of my life.
So there we go - one consultant who say 95% chance he can cure me! One who says this could be my life over! Worryingly, the second consultants opinion seems more consistent with the evidence of PFS and he doesn’t have an ulterior motive (he is not selling me shockwave therapy!).
Its been great to have somewhere I can talk about what I’m going through.