Not sure where to turn now - please can anybody advise!

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#21

I thought it necessary to offer an update following my original post some time ago. This is pretty much a further requested/plea for help or guidance -
I’ve actually been suffering now for around 15 months with the same symptoms as originally listed and the state of play is that I’ve been told by 3 separate GPs (from the same surgery) that I am suffering from a physiological disorder labelled fight or flight and they cannot pathologically find anything wrong with me. Recent Thyroid blood tests also recently returned as normal. The only change is that the pain level in the right side of my testicle has/had improved a little over time.

The single only abnormality from all the tests (blood, 2 ultrasounds, MRI) is that my Testosterone levels returned at a low level but still just about in the given range. I have recently been receiving acupuncture as I’m prepared to try anything and had an interesting experience - One of the symptoms I get is uncomfortable muscle/nerve twinges particularly in my left knee area. The acupucturist put a needle right in the area and I had a sheering pain go through my leg and right up into the right hand side of my groin. After that I had a bad week which took me right back to last summer to the point where I had to go for an emergency doctors appointment as I was bleeding out of my backside pretty badly.
The doctor told me this was caused by piles that were evident. I’m not sure if this was coincidental with the pain in my testicles, groin, pissing ridiculously again and general fatigue that increased in conjunction.

I’m trying to logically figure out what is wrong with me. I still do not believe even after seeing 3 gps, and endo and 2 urologists that I have fight or flight although appreciate that the stress issue is a vicious circle.

The very first problem I had was blood and pain going to toilet before it morphed into all the issues as I listed originally. I’m wondering if some sort of blood vein/clot issue could be missed on an MRI or ultrasound? I also believe the veins in the penis and testicles have got marginally more prominent of late.

I also question whether I am suffering from fight or flight on the basis that changes in my lifestyle, reductions in my stress coupled with periods of acupuncture, homeopathy and raki have made no difference as yet.

Thanks in advance for any thoughts

#22

Hi there wurli

I can’t really comment with regards to the specifics of your own symptoms etc, but one thing I wanted to say (although I’m not sure how helpful this will be) is that the Doctors you’ve seen are only really going on what they already know and have had previous experience of, hence I suspect the fight or flight diagnosis i.e. when it doesn’t fit with what they already know they would rather make a psychological diagnosis, especially when their patient has been online and they’ve probably had their fair share of self-diagnosing hypochondriacs. What would be more difficult for them to accept is the fallibility of pharmaceuticals. At a stretch you may have what they diagnose, but I feel that this is for want of putting you in an easily understood and labelled box. Propecia seems to be a fantastic example of how an industry which is not properly regulated can release a drug for young men to play unknown havoc with their endocrine systems with absolutely no proper benefit risk assessment. Again, my rambling isn’t probably that helpful, but I think I’m trying to say don’t necessarily put too much store in what your doctors are currently saying. There are so many other factors at play here which sadly there currently are no easy answers for.

For starters it seems no coincidence that so many of us have ended up with low normal testosterone levels.

#23

Well said Scotsman, hope your managing ok these days?

In answer to the OP, I think what your doctors are telling you is utter bollocks and most if not all your issues are as a direct result of your Propecia usage. I’ve just started TRT since the drug crashed my T levels and ruined my once healthy life!!!

As Scotsman says, we are all in the too hard to do box, so let’s labels us all as ‘it’s all in your head’ types… Utter shite. I have no faith in any GP anymore

#24

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#25

What is deeply concerning for me is that after 16 months of misery I still do not actually know what is actually wrong with me and therefore how to be treated or who to believe or who to trust.
I know my body better than any gp, endo or urologist and I do not believe Or feel Iam suffering from fight or flight. I appreciate the stress and anxiety of the situation is not helping any supposed recovery but it isn’t possible to get advise from them as they simply don’t want to know (and don’t know) beyond their assumed diagnosis.

One of the things I have trouble getting across is the fact that there appears to be many other sufferers with very similar issues/experiences. This seems to be actually working against me as nobody seems to have any definite solutions either (as 1 gp indicated) and they probably dislike self diagnosis.
Also, I do not have factual evidence of ie the shape and size of my testicles, testosterone levels, labido and my general vim and vigour beforehand.

Anyways, that aside. If anybody has any advise, brainwaves or breakthroughs, needless to say, I’d be delighted to hear anything.
I have spent time again looking on this and other sites and although I’m not medical or knowledged in pharmaceutical areas I have come to the conclusion that there is no conclusion at all at present.

I have written and spoke to msd and specified very clearly my issues and story.

#26

It has been suggested to me, based on my symptoms and the fact that my only apparent abnormality from all the tests is low Testosterone levels, to try Clomid.
I’m naturally anxious about taking another drug that is actually manufactured for a different purpose that in turn may help improve testosterone levels (and hopefully therein all the other bizarre problems).
Equally, I’ve run out of opinions. The GP obviously didn’t have a clue about Clomid.

How much should be taken and for how long? I’m guessing this is another internet purchase…
I see it has helped some people on this site but as ever the info is vague…
Can anybody comment who has actually tried it?

#27

Bit of an update and I’d really appreciate any further suggestions -

Its been years now and I’m still really struggling. I’ve been trying alternative therapies as I’m not sure where else to turn. I’ve seen an improvement with time in that at least I’m able to ‘get it up’ at all. However, I’m still miles from where I used to be and its truly horrible to left like this.
Also, I’m convinced the strange veins in my penis have increased and are more prominent than ever.
The worst symptoms are still the need to urinate frequently, muscle twitching (in both knees now), tightness and shrinkage to testicles, backside pain, fatigue and pressure in ears.

I saw my GP again for one last effort following the extensive story going back. He said no longer wishes to see me and will only now refer me to an NHS registered doctor who knows about PFS.
Therefore, does anybody know of any NHS doctors in the UK who may at least acknowledge PFS and could actually help me.

Cheers

#28

Call me !!!

I’ve PM’d you my number