Sugarhouse new member story

Completing a new member story as my old one is a mess and out of date.

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? Australia

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

What is your current age, height, weight? 31, 180cm, 95kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg/per day

What condition was being treated with the drug? Hair loss

For how long did you take the drug (weeks/months/years)? 4 weeks

Date when you started the drug? Early August 2013

Date when you quit the drug? Early September 2013

Age when you quit? 22

How did you quit (cold turkey or taper off)? Cold turkey

How long into your usage did you notice the onset of side effects? 2 weeks

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
Loss of Libido / Sex Drive
Erectile Dysfunction - Somewhat better over the years
Complete Impotence
Loss of Morning Erections - Somewhat better over the years
Loss of Spontaneous Erections
Loss of Nocturnal Erections - Somewhat better over the years
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought - Mostly resolved
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

Head pressure during crashes

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Pretty much everything - HRT, HCG, many of the natural treatments/lifestyle changes, progesterone

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
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It was about time I updated my member story. I’ve been having a hard time lately and like many PFS patients, it helps speaking to other patients rather than family and friends who can’t fully understand at times. But now I am finding it hard to even share openly on this forum, which I play a key part in running.

Although we are making significant progress on many fronts, and I am pleased about that, I am finding it quite hard feeling responsible for the direction of this community. I know that I don’t really owe anything to anyone, but I desperately want to get everyone moving in the right direction, which leaves me feeling deflated when that doesn’t happen. Maybe I just need to accept that not everyone wants to move in this direction and move forward with those who do. Perhaps I need to let go a bit.

I know our team should be proud of how far we’ve come in a year, but this disease fucking sucks and once the dust settled after our recent successes, I realised that I still have PFS. Life still isn’t what it used to be. It’s like I just naively thought that once we had the research funded that I would somehow feel better, or a sense of accomplishment. But even though I know it’s a big achievement, it’s just an intellectual acknowledgement, not a feeling. That really sucks sometimes. I try to put on a brave face for everyone here but everyone is human and I’ve just been having a hard time accepting that PFS is the ultimate immovable object in many cases.

On top of that, my sister and her husband just separated. I was very close with them both and they’ve both been extremely supportive of me over the years. He’s a great guy and I’ve found it hard accepting that he’s not around as much anymore. And somehow I find I’m blaming myself in a way for parts of their marriage falling apart. It’s ridiculous and untrue of course.

I’ll obviously keep going because we still have a lot of work to do, I just needed to vent.

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It’s a pity that after so many years, you still face such serious problems,
And it’s hard to imagine that you have made so many contributions in this situation.
I can’t express more praise with my garbage brain.
I believe most people will stand with you and let us work together to end PFS!
You are also a patient. Let us know your anger and pain !(It’s a great honor to be the first to comment on your story)

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Hi @Sugarhouse, I’m sorry to hear about your sister and her husband , I know it’s hard once you have found people that understand the situation you are in and who can empathize with you, to have this situation suddenly altered. I imagine it feels a bit insecure …

Keep your head up though. hopefully it gives you a chance to be there for them too as it will be difficult for them both right now and you never know the support you offer might just be invaluable for fostering a healthy situation between them.

I know you have done so much for the PFS support over the last couple of years . It’s definitely the kind of role where not enough of us say ‘thank you for all you do’ as much as we should , but I am personally really greatful and appreciate all you have done.

I’m doing a lot better as you know , but the help and support on this site I recieved in that dark time at the end of 2019 gave me so much hope, I’ll always be greatful to so many on here.

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You’re a champion man. I marvel at your perseverance and passion. You’re a massive inspiration to a lot of us. You’ve given hope to me and countless other patients I’ve spoken to.

I can’t even imagine the hours you probably put into your projects. It’s truly a Herculean effort.

Like @baitongWu just stated we’re all here for you. Don’t ever feel like you can’t speak openly on the forum.

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I’m only new here but I’ve been reading a lot and watching a lot too. I’ve seen your member story on the pfs network Mitch and just like with everyone else’s it brought tears to my eyes (even with my emotional numbness). I cannot believe what we are all going through. It’s incomprehensible for a normal human being to fathom the effect it has.

I am so appreciative of those who have come before me. To bring this battle to where it is today. I struggle to see forward. I’m scared of the future. But what I see before me is brave men that have kept battling through. It is what I must do as-well.

In your video you spoke about your hopes for the future, those resonate with me and the likes of most of us here. I’m the exact age you were when this horrible disease/condition took ahold. So I see it that I have a long road ahead of me, which terrifies me.

You’ve done immensely well to take forward position and lead from the front, so I can see why, it must be hard when inturn that doesn’t change how your life is impacted.
All I can say is. “Don’t take your foot off the gas” it’s important to keep pressuring on.

It’s obvious that this is a systemic problem. Bad Pharma and The governing bodies are aware of our problems and those of many other problems and conditions across the world. They just do nothing about it. It’s purely business and the problems don’t affect them. ‘Out of sight out of mind’.

So we must make it their problem.
“I have a dream”

Take care

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Let it out. Rage > platitudes when it comes to this horseshit condition.

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You shoulder this when you’re going through the same stuff as us. You push for funding which is no easy task despite withstanding the same symptoms which not many can do AND you’ve been a positive light for others.
You’re a good man, Mitch. Not many of those left.

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Hang in there brother. Things will get better. You are our hero. We are with you. You are not alone in this.

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Thanks for all the kind words guys. I was feeling really low yesterday but I feel a lot better reading this. Thank you all.

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I just wanted to say to you personally that this is perhaps the best time we’ve ever had as PFS patients, and there is genuine momentum with the issue right now. It’s on us to ensure that we keep that momentum up though, I can’t stress that enough. Nobody else is coming to save us. Continue donating what you can, and spreading our message to other patients.

But if we do the right things, there is hope. And it’s not just blind optimism, there are some really top people on this problem. I can’t tell you how much confidence and hope it gives me to wake up and see exchanges in our inbox between two world-leading scientists, talking about upcoming PFS research. This isn’t their primary field, and yet Axo has done such a phenomenal job getting them interested to the point they are willing to dedicate their precious time to us. Lord knows they’re not doing it for the money, as they’ve only covered their costs for this first study.

These people could be doing anything else and they’ve decided they want to help us. That should be a huge confidence boost to patients.

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Mitch, the amount of time and effort you have spent getting this community headed in the right direction is truly phenomenal.

In the history of this disease there have only been a handful of people amongst the 1000’s of patients who have been able to push this disease forward. It’s takes tremendous bravery, sacrifice and perseverance to achieve what you already have. Especially in the face of constant adversity from a fractured community, huge industries that deny this exists, asymptomatic users who attack us and the challenge of getting friends and family to understand and support our cause. All this while also living with a debilitating disease that makes it hard to stay motivated and FEEL a sense of accomplishment.

You are a real hero in every sense of the word and my only hope is that you will continue to fight until one day we are all vindicated, those responsible are held accountable, new potential users can be adequately warned/screened and scientifically based treatments or a possible cure becomes available.

Even though you cannot FEEL it, you must know that the work you are doing is as noble as it gets. You literally have the potential to save many lives and I’m sure you already have through the awareness projects. You are also working for those who we have lost and the families that have been destroyed. Without PFS Network, this community would literally be nothing other than a group of guys experimenting with the same substances that have been tried for decades and a Foundation that has gone rogue.

As an exceptionally severe case, I dont know how much more time I can hang on but I can say with confidence that PFS Network has kept me going, to support monetarily for research and to spread it’s message to family and friends. My only regret is that I that I’m not able to do more in my disabled state. I really do believe that the researchers we now have working on this condition will lead to real progress. PFS is in good hands.

If there is ever a movie on PFS you will surely be one of the lead characters. Never forget how much you are appreciated by many people in this community. Know that there will be many more to come and support the movement. Keep the momentum going!

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Thanks for outlining all that, I don’t doubt the research they are doing and it is so important that it proceeds.
I haven’t really seen much about the research that they have been doing as I clearly haven’t touched that topic yet in my short time being aware of all this.
But knowing it’s going on regardless does bring me hope that this will all be resolved one day.
Ignorance is bliss as they say and I would do anything to be ignorant to this. But you cannot be ignorant when it’s physically affecting your life.

There’s good and bad everywhere. Clearly the scientists involved with the pfs research are the good kind. I hope my message didn’t come across as an extremely hopeless individual in regards to it being a systemic problem.

Since being ‘enlightened’ I have found many cases of individuals and groups of people being ignored/pushed aside by the likes of doctors, medical professionals, gov agencies (FDA, MHRA) and of course the guys at the top. I’m sure we have all been the subject of this time and time again. I was suggesting that something needs to change in that respect. I.e. the Martin Luther king quote.
A revolution so to speak

I’ll keep my faith in all the research that’s being done by the good guys. Even though I’m technically a PAS patient. I’ve yet to find a group of PAS patients that really have there shit together, something needs to change there too.

Cheers

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The videos, the podcasts, the PFS network and the research projects all driven by our powerful, empathetic and mostly optimistic leader: Mitch Sabine the face of the PFS community…
Together with Axo and the other staff members.

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Mitch this disease does fucking suck but you’ve done more to progress the find for a cure than anyone.

Watching your YouTube videos and sharing on this forum has been extremely beneficial for me and my loved ones. I’m truly grateful for the work you’ve put into PFS Network. You’re an absolute legend.

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Had a far better week this week. Sleep has been better and I’ve just been less anxious generally, which has helped me be more productive and have a better outlook on things. It’s encouraging to see things moving generally in the right direction even if there are setbacks at times.

Have been working on more blog content to come out soon, networking with some great clinicians and brainstorming some ideas for our next fundraising campaign. Lot of positive things happening.

It was great to have all your support last week when I was feeling the worst I had done in quite some time. Thank you all again.

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I’m glad you’re doing better. Keep it up, man! You’re so inspiring. Thank you for what’re doing.
Cheers

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I’ve been offered a full-time job again and have been wrestling with the decision the past few weeks.

On the one hand, it’s a great opportunity to make some money and be able to continue contributing significant sums to research. That in itself is valuable to progress in the coming years. On the other hand, I don’t want to take the foot of the gas and risk losing the momentum we’ve gathered the past 9 months.

Now that we have completed fundraising for our first study, and all of our marketing machinery is in place, I feel like the issue is in a good place and that risk is low. The job is also with a great company with equity, an offer which may not come around again. I would still be working on PFS Network initiatives part-time and I feel like inertia will continue to carry us forward, at least partly.

But I’m also worried. Will I be able to grind out more years of full-time work, especially in a high-pressure environment? What happens if I fail? What happens if we lose all the momentum we’ve gained?

It’s a difficult position to be in and I’m struggling with the decision. Not necessarily looking for advice, just wanted to provide an update on my personal situation.

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Hi Mitch. I’m sure many hearts will sink on reading this As u know with pfs not many step up and what you’re doing on behalf of the community is less than straightforward so it appears to stop and start with you (I may be wrong) and it brings hope that was never here before. However you have to do what is right for you. Bringing help to thousands and being integral in finding a cure for a disease such as this is unique and would put u in the history books and in the hearts of many for ever.This is how much u mean to us!. Helping others on such a scale. I know where I’d go. The big salary etc is a nice alternative. Regardless everyone will be pleased for you whichever path you choose and I appreciate this must be frustrating at times when you’re trying to convince the community at every turn simply because of the pfs emotional negativity induced mindset. Good luck in your decision, let both your heart and head guide you

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Please stay with us !

Your presence alone and that things got forward brings so much hope for all the young people with their destroyed life’s for a cure and for awareness with this in the medical community still nearly unknown syndromes.

The Schleswig Holstein Project, the podcasts, the videos, the PFS network…I think your heart is connected

You are really the hope and the anchor man of the entire PFS community.

But I won’t be egoistic, it’s your life and you have to make your desicion.

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