Adding to the statistics

#1

Chaps! I’ve tried everything to combat this crippling syndrome but nothing has helped, if anything it’s made things worse. My life has gone into free fall and everything I held dear has gone. ive had enough and can’t deal with the torture that each day brings for any longer.This is not for sympathy or a plea for help. It’s intended to add a little weight to the lobby against this drug and hopefully will reduce the numbers of poor souls who otherwise would have had exposure. Going to do my mini bucket list/last swan song then that’s it for me. Good luck with everything and hope you all find restbite or even a cure/reset I’m just not strong enough take care

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#2

Hi @2981,

I am one of the administrators that provide this forum. I am in an extremely severe condition - far more so than the average conversation here revolves around, which is why I (and other severely affected cases I am in personal touch with) don’t spend much time talking about my personal situation. I am squarely focused on getting the acknowledgement, scientific assistance and public protection this issue needs. I believe my efforts can and will speak for themselves. This is not remotely possible alone and we all need you to be strong.

Please do not consider such a drastic action at this stage. I understand the loss you speak of very personally, but you should not be under any illusion that this will help - it absolutely will not help, it will be another injustice swept aside. It will be a loss to us all.

Standing together and pushing for progress is what will help, and now more than ever we are making considerable strides, organised right here. Additionally, what we hope is a significant scientific investigation is also due very soon. I would urge you to please take part in the survey to share your situation in a practical way. I would also urge you to try and focus on the small steps of self care and managing each day right now. Like you, the many therapy attempts I pursued out of desperation were either like water to my symptoms or exacerbated them. If you aren’t personally confident in the grounds for taking something, do not feel pressured by the certainty of patients who are making therapeutic suggestions you may see across this or other forums; you are clearly stating you are worsening from what you have attempted thus far. This has resulted in tragic outcomes before now in more seriously affected cases.

You’re stronger than you know and your life is valuable - don’t let go of what matters to you even through your current suffering, which I fully sympathise with and promise you I will do everything I possibly can regarding.

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#3

For the first time I actually planned it this morning but my wife soon to be X came back from the local swimming pool with my son and stated the exact things both you guys have covered. I thank you, my sister and wife so much for pulling me back from the brink. I’ll live to fight another day. Please don’t think I’m attention seeking, I think about ending it daily and for the first time it felt real. I was prepared to throw away the few good things left just to end my suffering and the effect it’s having on others. While there hope there’s life. I’m now deeply ashamed for my proposed action. Bless u guys

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#4

It’s not the easy or cowards way out as takes more balls than I have. Regardless I’m packing work in on Monday as the pressures and worry that brings is something I can do without. In the short term it’ll be tough “another void to fill” but in the long-term it will be a step towards a better life. Would like to do something rewarding like helping others and for that alone it’s worth hanging around

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#5

Yes.

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#6

Hey Ryan,

Your post is absolutely heartbreaking. Unfortunately I can’t say that a post like this is uncommon here or unexpected for any of us given the tragedy that has befallen us. However, I think it is too early for you to give up. In fact, it is always too early to give up!

Extreme suffering works in unexpected ways. You suffer like hell and are taken all the way to the edge. And just when you think you cannot take it anymore, you get tangibly better - usually the next day after a complete meltdown. I am not talking about improving your PFS symptoms. I am talking about getting an inch closer to acceptance, which brings peace and helps you find new meaning in life. But you have to survive until the next day.

This process repeats itself after every bout of extreme pain you go through. This is how acceptance works. You need to suffer intensely in order to incorporate the tragic information into your mental models of the world. Unfortunately this process won’t be over overnight. You have to go through it over and over and over again. Then eventually you will reach a level of acceptance where you will find a way to live even if you never recover.

I know you don’t want to accept the tremendous losses you have incurred and don’t want to live like this any more, but trust me that you will be able to with time - and most importantly, with suffering. You have a lot of reasons to live. You have a kid for example, which is the dream of many people here who fear they will never have a family or kids.

The process I am describing here is the absolutely bitterest pill to swallow but unfortunately the only one that works with things we cannot change. The other thing that works for easing suffering - in an entirely different way - is hope, but hope can be elusive. You can only sustain hope for so long without evidence that it is real. I personally relied on hope for two years after I got PFS. I hoped that I would get better, that a treatment would materialize soon, that there were protocols I had not tried yet. Gradually all hope left me.

Then I really hit rock bottom. I had to give up my illusions. I had to accept that I would be single and lonely. That I would have trouble walking and my dick would be shrunken. That I would have anhedonia and a low level of motivation. I accepted everything I didn’t want to accept. The pain of acceptance is indescribable…and then it eases up. Once you reach acceptance you can actually live without the things you have lost. And then you can start hoping again that one day you may get some of them back. But that would be extra and your life will not depend on it.

So stick around if for no other reason than to find out what you are capable of enduring (although you have other great reasons too). You will be surprised how strong you really are.

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Struggling to cope. Looking for advice
#7

Having been where you are, and being a parent myself, I have to tell you that ending it is not an option. Consider what loosing you would mean to him, for the rest of his life. Think about that real hard, and have those thoughts present the next time you feel desperate. It will give you strength.
To this day, I am thankful that I did not do anything stupid in my darkest hours.

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#8

do you want to say you lost the hope of a possible cure? anyway, the other things you mentioned are right

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#9

I actually do have hope but now my hope is in the win domain and it is also for the long haul. It means I have incorporated the losses into my baseline and any improvement will be extra. This means I don’t have to put my life on hold waiting to improve because I have accepted I may never improve. If I do - that would be amazing. If I don’t, that’s standard.

Before, I wanted to get fixed first in order to resume my life. My hope was for a cure now so I can keep living. Now, my hope is for a cure eventually, but in the meantime, I can keep living.

I can’t say I have reached full acceptance yet but I have gone through this same process twice in my life before with other big losses. I thought this time would be different, that I would never be able to accept this or live without what I have lost. I am coming closer to the belief that it is not different and that yes, I can keep living.

Ironically, I had to lose hope and go through the worst of hell to start gaining acceptance. This makes sense because you cannot accept a loss if you think there might be a chance you can recover the loss. True acceptance is when you know the loss is irrevocable. And then once you have reached acceptance you can start hoping again but this time the pain is gone.

I wouldn’t recommend that people purposefully abandon hope though. It is way too dangerous.

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#10

Excellent, honest and nuanced post Sibelio. Big thumbs up.

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#11

Cheers again guys for the very well written and meaningful replies about trying to come to terms with this utter shit/ at times hell. Means a lot

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#12

and you should never forget that the most people here get better and better each year. im a lot better than 3 months ago. and i quit 1 year ago

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#13

I started getting symptoms nearly 20 yrs ago but never tied into into propecia until 19 years later when I stopped taking it. Previously I’d cycled this shit 9 months on then 3 off. Glad your improving mate. I’d like to think I’ve Peake’s as in can’t get any worse so hopefully the glimmers will appear some day soon :slight_smile:

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#14

Its the anxiety, constant chest pain and insomnia that effect me the most. 2 week’s worth of low dose mirtazipine caused the most recent and worst crash! I have them to different degrees every few days. Going to stop interfering with it as I just seem to worsen. Ditching the job as mentioned to see if zero stress helps although the impending solitude is quite daunting

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#15

I’m not on the site much, but l saw your post in my email and wanted to respond.

I’ve suffered almost 20 years. It’s been a roller coaster, but l can say I’ve been much better than l was at first. Tomorrow might be your day to feel better. Don’t be stubborn, now is not the time for pride. Seeing a great therapist and cialis helped me a lot.

I had a young son at the start of this. I don’t want to think how things would be if l didn’t. I knew he needed me, just as your son needs you. I found strength and purpose in that.

The impression l wanted to leave you with is this… lt will make me sound crazy, but at this point l don’t care. Hopefully it helps. When l was at my worst l would sleep 10 hours a work week. The time not sleeping was pondering how miserable life was and l couldn’t see it getting better. I never wanted to commit suicide, but l didn’t see any joy in living. One of those nights where l was at my lowest the grim reaper appeared at the end of my bed at 2:30 am. I was wide awake. He was nearly eight feet tall, had his scythe with him and l couldn’t of been more scared. He reached out with an arm that seemed to reach half way across the bed and motioned a skeletal finger nearly a foot long to come to him. I begged him not to take me. He hovered there expressionless for what seemed like an hour. I should say that to see a hooded skull with empty eyes that look like the gateway to the afterlife, scythe gleaming over his head, hoovering at the end of your bed is an eye opening experience.

Then he turned and left. Was l crazy? I don’t know. If l was it was for that moment, he hasn’t been back.

The point is DO NOT UNDERESTIMATE YOUR DESIRE TO LIVE. Even at my lowest, when it looked like life was merely a gateway to death, when faced with death, l realized l not only didn’t want to die, but l wanted to live.

Don’t put yourself in a situation where when you decide you want to live it’s too late. Your son needs and loves you. Speaking of, my 19 year old son just stopped by to see me.

Best wishes, take care. Tdb

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#16

When someone has kids, it seems that should give one a very strong additional motivation to live. I am not saying it would make up for the lack of motivation, the anhedonia and depression that PFS causes, but it seems it would make things better motivation-wise, all other things equal. That’s true in both yours and @2981’s case.

The question is how do the rest of us – single, childless people – find motivation? I am really struggling with that, despite what I wrote earlier. I try to set goals, to find meaning beyond my own miserable existence, to work towards something in the world I consider worthwhile, etc, but none of these goals reach me on an emotional level and as a result I have no drive. It is very hard to make myself do anything. I do the bare minimum, wasting my potential and opportunities.

I really like what you said here: “don’t put yourself in a situation where when you decide you want to live it’s too late.” I feel this is exactly what’s been happening to me. I am surviving all right, getting through the days, even improving psychologically, and hoping that one day I would really decide I want to live again, but I am definitely failing and regressing and at some point soon any meaningful life I could have had would be impossible. I think many people here are painfully familiar with this problem.

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#17

As I’ve stated my life has been a roller coaster. I took propecia in 1998, so I’ve seen my share of unknowing, ignorant and incompetent doctors. I’ve had my ups and downs. Some of what l say may be easy to glance over, but looking back it all was very important.

What l can tell you from my experience is that you do not know how you feel tomorrow. Tomorrow could be your day. Out of stubbornness, pride and maybe stupidity l kept my condition to myself, with the exception of a few (unhelpful) doctors, for 9 years. One day l decided to go to a great therapist. That is where my recovery began. You have to prepare mentally and be open to improving yourself.

The first thing the therapist had me do was tell someone about my issues. I told my mother and brother. One of the hardest things I’ve done, but it was a tremendous weight off my shoulders.

While the therapist didn’t have any magical answers, he put me in a place mentally to proceed with life. I can not stress how important that is.

Without a doubt my son gave me motivation to live. However, when l was faced what l felt like was a way out, I pleaded desperately to save myself. I can assure you at that moment, my son was not a factor, that was all me. Point being regardless of what or who l have here it had no bearing. By the way, the logical side of mind tells me what l saw wasn’t real. My intuition, which is never wrong, isn’t so sure. Regardless, the end result was the same.

It’s all been said before, but eat healthy, exercise, get sleep and put yourself around positive people and situations. It makes a difference. When you need to take a break from thinking about your condition. You need a break sometimes. I didn’t do that soon enough because l felt that meant giving up. I was wrong.

Two of the biggest mistakes l made was not getting help sooner and NOT FINDING A WAY TO FIND SOME JOY IN LIFE AS YOU FIND YOUR WAY. I’ve been through it all and even when you think you can’t, you can. Just because you don’t see it, doesn’t mean it’s not there. ALLOW yourself joy. Don’t let life pass you by because of this. DO NOT let life pass you by because of this. When you start feeling better do you want to look back and say, " Man, that was a shitty time" or " l made the most of it, l had fun doing/going…" ?

From when l first took propecia, we are 20 years closer to a solution. Some recover with time. Tomorrow may be your time. NEVER EVALUATE YOURSELF AT YOUR LOWEST. Never underestimate your self worth. Put things in play to put you in the best place mentally and physically to be your best.

Whenever l was struggling l thought of a quote. “If you’re going through hell, keep going.” Winston Churchill. My follow up advice would be not to overthink that. Tdb

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#18

These are very wise and powerful words, thank you! I will try to write a more substantive response later.

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#19

Tdb, greatly appreciated , I felt lucky to still be here Sunday and Monday but after better sleep than normal '3hrs last night" woke up covered in sweat and overtaken by suicidal thoughts again and a sense of hopelessness which has since receded as the morning has progressed. There is no rhyme or reason to my symptoms. Healthy lifestyle and diet in place as always. Some days it’s the mental sides then on others its the Physical then on an another it’s a mixture so it’s really hard to pinpoint the aggravaters! I avoid the usual stuff as mentioned. When it’s at its worst I will look to these messages for them to hold me back and to make me realise how lucky I am to be alive and that it WILL get better

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#20

2981, I’m not a doctor, so take it for what it’s worth, but trouble sleeping and night sweats while under stress are classic adrenal issues. Thyroid issues are usually closely linked as well. If you’re aware of that, disregard.

Many on this site either have failing adrenals or at minimum taxed adrenals. I would highly recommend Dr. Wilson’s book. For thyroid issues Stop the Thyroid Madness book, which also has some adrenal advice.

There are home tests for adrenals if you think it may be an issue. There is a pupil dilation test, google it. Otherwise, get a good, non digital thermometer, like geratherm and check your temps. Check 3 or 4 times a day at the same time. If your temps fluctuate, you have adrenal issues. If your temps are consistently low, thyroid issue. If they are low and fluctuating, you have both.

Again, l am not a Dr. and this isn’t medical professional advice. If you need a Dr., one will most likely have difficulty finding one for said issues. The Facebook or Yahoo sites can be of help finding one. Stop the Thyroid Madness has a good list.

It is key to manage stress. Meditation, exercise, whatever. I was just thinking the other day of one thing I should of done that l didn’t. I love dogs and find them calming and just good to be around. I’m not in a position to own one now, but our local pound has volunteers walk the dogs. That would of benefitted me tremendously. Find something that you enjoy to take a break from this.

I will add one more thing. At my worst l was accepting of my condition. I did not try to steer out of the rut. Take breaks, yes, accept no. A real epiphany came one day when l was so miserable, l looked at it logically and told myself it would literally be easier to not be miserable. It was. The only difference was outlook. You don’t need to wait as long as me.

Tying in to that rut, much of what my therapist did was get me out of that rut, pushing me out of what had become my comfort zone. He had me make new friends, which l did and was a lifesaver . He had me put myself in different social situations. It was all for the better. We all handle things differently and timing can be everything, but at some point you may have to step out of what your comfort zone has become.

2982 and Sibelio there will be better days ahead, but make the most of everyday!

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