I am in London, UK.
I am going to go see my GP soon. If you have done this, how did it go? Did you ask for/get a referral? Did the GP have prior knowledge?
Are there sympathetic specialists that you know of? If you do, please post their name and contact details (or message me) it is possible that if we offer up enough case studies then doctors might be able to start a research project or at least share info amongst their peers which could lead us somewhere useful.
I went several times to my GP, even had to change it as I wasnāt happy with the first oneā¦ The GPās are useless here in London IMOā¦ That does not mean you should not go to the GP! Go and see if you get lucky, you never know though! My experience was horrible here thatās why I am going in private hospital in my country, Bulgaria. Cheers!
My local GP is very understanding and kind. She was also aware of the post-accutane condition which is, in my opinion, PFS, so I was able to contextualise and discuss this with her. She obviously canāt help but is very willing to engage with me. If thereās anything I want prescribed she tries to do it. Unfortunately nothingās helped, except Valium. My endo was also aware of the possibility of the finasteride disease, was aware of the research to a basic extent, and had seen considerably milder patients himself. However the visit was still largely futile as he couldnāt offer any treatment as my hormonal levels were not in need of correction, and he believed there was little he could do, which he was right about, sadly.
I am very involved with the scientific side of understanding this condition so I had a lot of studies to hand, which I would advise people to print, highlight and take with them. This was especially helpful in dealings with ignorant mental health professionals.
My experience so far has been mixed. I was in a state of terror the first few times I went into the GPs for emergency appointments. GP 1 heard me out and said finasteride is a powerful drug but the negative effects (at that time I was complaining of no sleep, crazy anxiety and impotence) should pass within a few weeks, prescribed me sleeping tablets, which I didnāt take. When things got worse a few days later, I saw GP 2 who basically completely disregarded any possibility that I could be having a reaction to finasteride and tried to put me on an anti depressant and refer me to CBT.
In the months since then Iāve been accused of having āhealth anxietyā, been told stories of hypnotists making men stand in upright positions like a ladder from my GP and rugby players with broken collar bones not feeling physical pain until after the match is over (private gastroenterologist). Other things have happened which indicate that the professionals tasked with my healthcare do not really believe in post finasteride syndrome.
My advice to you would be to first describe your symptoms and state that these have occurred after stopping finasteride. Donāt try to spearhead your interaction with the intention of trying to find a pfs specialist or with the hopes of having pfs suddenly become of vital interest to mainstream NHS doctors. If you do that, theyāll probably think youāre going in there with a preconceived notion of what pfs is and have psychologically induced pfs symptoms in yourself by obsessing over them. Of course, anyone who has experienced a crash will know this is nonsense.
As time has gone on, I have been referred to specialists. After a day on an acute medical unit I got a referral to a gastroenterologist, who subsequently has referred me for a CT scan on my stomach and brain. Iām seeing an audiologist as a result of my menieres disease-type symptoms. Iāve also been offered trt by my GP as my testosterone numbers have dropped and my estrogen and SHBG numbers have soared compared to my pre-finasteride test results. However, youāll notice that these specialists are as the result of individual symptom categories and there is no specialist that I know of on the NHS who tackles pfs as an acknowledged thing.
At this early stage for you, I think you should go in there simply to have your experience so far documented. Go back in a month if things have not improved.
My iniatial GP was nice but I think probably thought I was crazy and this is also true of my new GP. I donāt really go into discussing pfs much with them these days. I saw a urologist once and he was horrible and didnāt even seem to know what finasteride was and wouldnāt let me speak and just kept talking at me. Iām hoping when the new studies are produced attitudes may start to change. Thatās a good idea about taking copies of studies with you, or printing pages from the foundation.
Thanks guys, did anyone get referred to a particular specialist? Not because Iām expecting a quick fix, just thought it might be better to have data collated together.
Nah, i am not even trying going to GP. It will be classical āā its all in your head āā. They will look into this matter when PFS, PAS will be acknowledged on a global scale. but not now.