Hi guys
newbie here and fellow sufferer was wondering what should i do in regards to trying to treat this,should i go to my GP or is anyone in the UK that somebody has seen that they would advise? at a lost here o where to start,also should i try natural supplements?
any help would be appreciated
My experience after 14 months of suffering with zero improvement probably isn’t much to go on but I figured you’d appreciate whatever input you can get.
I would see your GP first and go through the official channels but the reality is that even if your GP does believe you’re suffering from PFS he/she won’t really be able to do anything. Try to get your GP to do as many of the recommended blood tests as possible and insist that they refer you to a urologist and endocrinologist. I’m finding it difficult to get referred to an endocrinologist and I’ve been suffering for ages so count yourself lucky if your GP listens. If all else fails you’ll have to see an endocrinologist privately. Also bear in mind that if you get referred to one via the NHS you’ll probably have to wait a few months for your appointment. If you’re really fortunate you may even recover naturally during this time.
I’ve tried to find the best person to see in the UK in regards to PFS via this forum on a few occasions. I’m based in London so my hunt has been London-centric and nobody really seems to be of that much use. Prof Pierre-Marc Bouloux has been mentioned a few times and from what I understand he is aware of PFS and has seen sufferers but apparently is not entirely convinced of the syndrome. I have also read on this forum that his son takes Finasteride. I must make it clear that I’ve not visited Prof Bouloux and that all my information is based on what others have said either on this forum or in the private messages I have received.
The only other endocrinologist who may be worth visiting is Dr Leighton J Seal who is also in London. Again, based on secondary information, he’s seen a few PFS sufferers but as to how helpful he’s been I can’t say.
As to whether to take natural supplements there’s probably no harm in doing so but in my honest opinion if you are going to recover naturally it won’t be because of them. Without knowing your circumstance and where in the UK you’re located this is the best advice I can offer and all of it is simply my opinion. If you really want to do something positive I would contribute to the PFS Foundation but I understand that you’ll probably want to explore other avenues first in the hope of recovering.
Let me know if you want more advice and I’ll see if I can help. I would be grateful if you could keep me up-to-date if you do manage to see an endocrinologist as I am planning to see one soon whether my GP finally agrees to refer me or whether I have to go privately.
Good luck and stay positive.
hi guys
alot the posts on here are quite dated i was wondering if there is any one you that somebody could advise to see regarding our PFS problems in the UK,im seeing my GP this week but apart from that am at a lost of what to do,seriously worried now
coming to terms
thanks so much for your reply im planning to see the GP after this bank holiday id imagine blood work to be done which ill report back on here, ill keep you updated with any progress and would really areciate the same,be good to have someone to support throught this as im pretty local to london
best of luck hopefully here from you soon