That’s a bit harsh. The guy clearly went over and above what most urologists would do, i think his letter is pretty commendable, actually. That said, he’s obviously outside his scope of expertise, as are just about all urologists.
Sad times, but it is what it is.
Whether a urologist thinks PFS is a credible diagnosis or not is acceptable, but to have never heard of it is not.
Most of the letter recounts the patient’s own reported complaints and hypotheses.
It almost makes the patient sound like a hypochondriac as the symptoms, to the ignorant, seem all over the place.
And the recommendation of antidepressants, TRT and Flomax are likely to exacerbate the symptoms.
Clomid gave me back-acne and put my hormones on a rollercoaster. OTOH, much better option than TRT (imo).
Unfortunately that is quite simply what most urologist letters will look like. It’s hardly “unacceptable” that he hasn’t heard of PFS considering that’s also the general position across the map.
As for the recommendations, well obviously they’re not going to be great given his inexperience with PFS.
Let’s be fair. It’s simply what we’d expect from the average urologist - if not a little more. He was prepared to offer TRT for low testosterone and was offering anti-depressants. Most urologists will offer cialis (if even), tell you it’s all in your head and to get on with your life. I think this from personal experience - i’ve visited several supposedly “top drawer” urologists.
Therefore, we have to fair and judge one against the other, not against a notional standard of how we would like them to treat us, because the latter isn’t realistic, unfortunately.
i’m curious to know about the possibility that Prof Traish accept patients
i see him like a real expert
one ppl from boston is going to see him (maybe)
Update.
Feel shit, look shit.
End of update.
no improvement in 1 year or however long you been off?
13 months off. Gradually got worse.
14 months off. Any changes mate?
omg we didnt know …
they pranked us…
sons of bitches…
money … all about the money merck earns…
I’ll update properly soon but just to say I’m worse than I’ve ever been during this whole sorry affair. I know this isn’t a competition as to who’s the worse on here but I’m about as bad as it gets, I’ll elaborate when I get chance. Days are dark and sometimes, no most times I feel like calling it a day. I’m battle weary, in constant pain and have had more shit than any man deserves.
PLEASE HELP!!!
Does anyone know ChrisC personally? Can anyone please reach out to him?
I’ve been reading for a while, and I’ve just registered after reading his last post. He needs our help now! He might not realize, but many readers rely on him for strength, and we need to support each other through this.
Hello. I am very sorry to hear you are feeling so bad. One thing that has helped me in fish oil, as per Mews suggestion. I used it in pill form and it did nothing, but once I started using it in oil form it really helped. I remember very recently I literally felt like dying and was weighing out the pros and cons of just giving up, so I know where you are at. Do not give up, try and stay strong man. Everyday that passes, it means we are closer to a potential treatment option. Stay strong. I wish I could help you. Consider the fish oil if you have not tried it yet. Maybe it will help out the depression aspect. Do not give up. Life will be sweet again.
Chris,
Please hang in there. We are on the verge of discovering what precisely is wrong with us. I know times are tough now but rest assured, one year from now you’ll look back at this and say “whew, I’m glad I’m not in that place anymore.”
ChrisC, where in the UK are you? PM me if pos.
Thankyou for the kind words. I’m not being sensationalist or a drama queen by the way, it’s just pretty bad right now. I’ll update story soon when I feel up to it and send PMs back.
Thankyou.
Chi, near Leeds mate.
Hi Chris,
Please update, perhaps we can help with some of your sides.
Things are as shit as ever. It’s crazy to think that 24 months ago, less in fact, I couldn’t have been happier. My only worries were the ones we all have, my only illness was the odd cold.
I was into so much stuff, had a great social life. I never had enough time to do what I wanted. My life was dominated by socialising, books, films, music, football, travel, everything. I was just on the cusp of a complete change of career, re-training in something. I’d done a bit of writing and was getting asked for more pieces. And then this shit happened,
Now, I’m just a dishevvelled wreck. The websites I go on now are all related to this crap. It’s on my mind constanly. My home life is wrecked, my marriage is a mess. I’m snappy and rarely smile. I cry like a baby most days and for what - BECAUSE I TOOK A PILL TO SAVE MY FUCKING HAIR!!! How can I go from my hair thinning a bit to this shit? Crying in front of my friends. Everything.
You don’t know what you’ve got till it’s gone.
I’ve got around 40 symptoms, some minor, most major. The worst are the crushing fatigue, the prostate pain and I discovered not too long back I have Peyronie’s. I have a big painful plaque in my dick. I can feel it most of the time, very painful.
I wrote a long letter to my GP and said I want to start again with all of this and he’s ordered a new set of blood tests. He dismissed my claim of a mould being the cause of my symptoms fatigue. The fatigue is massive, no amount of sleep sorts it. I’m also seeing a uro on Thursday for my prostate and peyronies. I visited a physical therapist for internal therapy some time ago and she found a lot of trigger points so I need to look at that angle plus the possibility of infection.
I’m so tired. Lost weight, body hair, facial hair, dark circles. Pain all over. Tired, sick. Depressed. Rambling now. Sick of reading messageboards and shit like that.
I want it all back. Where’s it all gone? Fucking bone broths??? I just want a sandwich and a beer. Used to love being me and what I had. Love my wife, love my son, love my friends.
Evil poison. All this just to grow a bit more hair. It’s fucking laughable. A sick joke.
Urologist visit today - prostatatitis and Peyronies. Completely dismissed Propecia caused it, ‘absolutely ridiculous, I’ve been prescribing it for 20 odd years with no problems’. I was too tired to argue.
Doxy for the prostate. Nothing for Peyronies. Man’s an idiot.
He did have access to some recent blood tests which I’m due to pick up at the doctor’s tomorrow. He said my TSH was 10 something. Hypothyroid in other words.
I am sorry to hear that. How bad is your peyronies? is it too painful to have sex?