Thank you. I’m trying to retain a positive mindset, but it’s excruciatingly difficult.
I really thought SP was perfectly safe, I mean, I can buy it in a local “health” store.
Is recovery possible?
2 Likes
@Crembo I know it feels very difficult when your steeped in it but recovery is possible. A lot do. I took fin on and off for years which is why I haven’t and like you and many others I did not know it could cause so many life changing problems. My problems started 20 years ago before any of this was known. I even took saw Palmetto in ignorance too. It should be off the shelves in the health stores. Gabba was banned in the UK for minor reasons yet this poison is being promoted like candy. On discussions with my endo he stated 18 months to two years is generally the optimum time for a return to normal. So you stil have plenty of time. Try to context this shit as stressing will feed the disregulation.
1 Like
Recovery is possible of course but it’s a long process , like i said if the mechanism of pfs was understood we could reverse it in a few weeks , more studies are needed so we can understand the mechanism of pfs
2 Likes
Any blood tests? If so, post them here. If not, then do them and post.
Testosterone, estradiol, shbg, prolactin, tsh and ft4 at the very least. You might be lucky that it is a hormonal problem instead of a receptor or any other issue that is yet to be discovered. You haven’t checked everything yet, so this would be in your best interests.
Also, since it was more than 3 months, please fill out the survey.
Thank you all for your answers. I’ll fill out the survey.
Anything that can aid with recovery?
I donn’t think I can endure this hell much longer. Sorry for being so down.
1 Like
Many people on here have sympthoms that are 10 times worse than yours and they’re still fighting , keep the faith and be patient , it’s a long process @Crembo
2 Likes
I got a hold of my blood tests taken in may ‘20.
Prolactin 12.3 µg/L ( 4.04 - 15.2 )
Hydroxy vitamin D (VITD) 27.6 ng/mL
PTH 31.5ng/L ( 15-65 )
LH 3.4 U/L ( 1.7-8.6 )
FSH 3.0 U/L ( 1.5-12 )
Oestradiol (E2) 27.0ng/L (11.3-43.2 )
progesteron 1.78ng/mL (0.25-1.39 )
Testosteron 539.0ng/dL (267.0-929.0)
SHBG 25.6nmol/L ( 11.6-71.2 )
Free testosteron 12.8ng/dL (6-25 )
DHEAS 519.0µg/dL (160-449 )
Everything normal according to my endo. Test was lower in january. DHEAS was around 700 in january.
I’ll give it some more time then. Maybe my body will recover…?
Brother keep calm and stay hard. If you have a good performance whit cialis take a cialis… Give you a time and if you stay alone speack about your family about your problem… Stay calm and wolking running if you can listen music whathing TV and stay whit friend. The life is long… If you feel exstausting of maind speak about your brother sister mother or dad…
3 Likes
Hey mate do not entertain those thoughts, we all know how tough it is but you have to be strong. Take @Preoccupato advice and reach out to those close to you. Don’t give into despair. Be as positive and hopeful as you can about what could lie ahead.
1 Like
Hey everyone,
Just a little update.
I’ve hopped on a paleo diet since a couple of weeks and am trying to eat as healthy as possible. Just to start trying something…
In the last month, I’ve had a couple of upswings. Days where my genital numbness seemed a lot better with much less hard flaccid. These days are sparse though and I’m on a downswing again at the moment. I’m not sure whether longterm I’m in an upward or downward trend. The better days make me very hopeful, though. They just don’t last all that long.
Mentally, I was a complete wreck and dangerously suicidal. I was hesitant on going on any meds again, but to combat my severe depression and suicidal thoughts, I agreed on Wellbutrin. I’ve taken it before without many issues so I’m not worried it will aggravate my situation. Honestly though, if I hadn’t asked for Wellbutrin specifically, they would have given me an SSRI. I cannot comprehend they’d prescribe me something that would ADD to the symptoms I’m already depressed about. I am then accused of overanalysing, playing doctor myself, focusing too much, and well… all of that might be true, but if I hadn’t looked it up and told my own doc I wanted Wellbutrin because of its superior side effect profile, he just wouldn’t have given it to me. Seriously, sometimes I actually believe I AM the doc in that room… Sorry for the little rant. 
Anyway, I doing some more blood tests with my endo this week, but I don’t think he’ll know what to do. My previous blood levels were OK, so I am “OK”, and that’s kind of it for diagnostic tools. He was very understanding of my situation, though, but he’s not willing to prescribe treatment for something he can’t diagnose. I can respect that, but I might have to find a doctor who will or at least supervise, should I decide to take action.
In the meantime, I’m thinking of supplementing with some amino acids like arginine, citrulline, carnitine, BCAA and maybe some black maca too? They seem safe enough and effective in some people, I’m around 8 months after taking my last pill. Around 6 months after my first heavy crash. Would you advice to wait a bit more and give myself time to heal before supplementing?
Courage to you all, friends.
1 Like
I would be careful with supplements brother. Especially with MACA its anti androgen.
Black maca supposedly does not have an anti-androgenic effect, I thought.
To whom it may concern,
I’ve definitely had improvement in penile sensitivity compared to my crash months ago. There’s more sensation in the skin. So I hope this is a sign of slow recovery.
I’ve been on cialis 5mg daily for three months, which helps and allows for sex. Now that I’ve been off, it is obvious that my erectile dysfunction is still pretty severe.
I have small windows were my libido seems intense but never do they last.
The hard flaccid differs depending on whether I’m sitting or standing… Which seems to point more to pelvic floor dysfunction. Some with pelvic floor disorders display exactly the same sexual symptoms. So I’m continuing to see my CPPS physical therapist. He sensed a lot of tension last time.
1 Like
Does your physical therapist recommend PC muscle exercises? Does he recommend kegels or pelvic floor relaxation?
I need to find a PT who can work with pelvic floor issues. I think libido is weird in that it’s partially from brain & hormones however more frequently getting erections may increase libido as well. I.e. “erections beget libido” to some degree just as libido begets erections.
Really hope you get better.
Hey,
He recommended relaxing the pelvic floor by diaphragmatic breathing, and as a way to tone down an overstimulated sympathetic nervous system.
Hope we get better soon
2 Likes
Just an update. Bad day today. Consultation with my original endo, who’s only been treating my ED, because that seems to be the only thing he knows. Went like this:
- When you see it works, you’ll get out of the vicious cycle.
- I know high dose cialis works doc. It’s not just the ED that’s troubling me.
- Depression can cause all kinds of sexual dysfunction.
- I know. Can it cause numb, shrunken and deformed genitals though?
- No.
- Then, how do you explain this if you think it’s from my depression.
- I and the urologist checked your genitals, it was all fine.
- With all due respect, you don’t have a reference point. It’s radically different to me, and it happened over night.
- Yes, but that’s all in your head. (verbatim) You want a cialis prescription?
I’ve had it with docs telling me what constitutes normal for my body. I’ve been looking down there for like 20 years. I know what’s normal and what’s not. I won’t be seeing him anymore lol.
Luckily, there are some docs who do believe me, and are looking for solutions. I just need to find one who’s willing to try experimental treatments and can handle it if their patient tries to discuss their own f*cking symptoms with them. I’ve seen so many already that I’m being accused of doctor shopping.
Positives:
I’ve had some improvement in genital sensitivity.
Negatives:
Shrinkage remains or seems to be getting worse (?). Beard grows out slower/less dense. Not sure if this is truly the case or whether it’s me imagining things. I’ve become hyper aware of my own body, which is a problem in itself.
Current regimen:
- Paleo diet with lots of (cruciferous) vegetables, good meats, free range eggs, real butter, walnuts, pecan nuts, bresil nuts, and some coffee and camomile tea. No alcohol.
- Cialis 5mg daily
- L-citrulline 6g, L-arginine 2.5g, L-carnitines 4g, low dose Selenium and Zinc, daily
- Black maca 5g eod
- Wellbutrin XR 150mg
- Will add probiotics soon
- Looking to maybe cycle some herbs, but very weary of adding anything. Everyone seems to react differently.
- Reading lots of positive stories and recoveries. Just to remind myself it is in fact possible!
- Weight lifting and cardio
Probably gonna try hCG monotherapy in the future, which looks very promising, thanks to the brave souls trying it out. But I would really like a doc to supervise me in this.
Mentally I’m up and down like a yoyo. Fighting the good fight, but fuck me, this is some nightmare we’re in.
Hey guys,
I wish I could give a positive update, but unfortunately, I seem to be getting worse. I’m trying to find the courage to continue, but I can’t cope. My shrivelled numb penis looks very permanently dead and nobody even believes me. How is this even real?
Trying to hold on, but I’m close to giving up.
I don’t really have the answers either but I hope there is some solace in the fact that you are not alone in this.
Very few of us have doctors that actually believe us.
I am also puzzled and powerless as my genitals have become pleasureless and my testicles have shrunk in these past two years since taking Finasteride. My symptoms have mostly been up and down but over time I feel there is a slightly upward trajectory. Stay hopeful that time will be kind.
Please be careful with zinc as it’s also a 5-alpha-reductase inhibitor. You could try cutting that one out of the regimen for a while and see if it gets better or worse.
Well, another year has passed and still not cured.
I did have a couple of moments months ago where my symptoms improved significantly (less shrinkage, less numbness, more libido) but it never lasts.
As of this moment, my symptoms are:
- Severe penile shrinkage (sometimes hard flaccid, sometimes empty and dead), apparent tissue loss and veiny appearance
- Hourglass penis
- Penile curvature
- Genital numbness
- Testicular shrinkage
- Loss of libido (Never have the urge anymore, but I can summon some libido if I force it)
- ED (has improved somewhat but I still take cialis daily)
- no spontaneous erections
- morning wood is very rare
- Hands are super veiny and lost some tissue
- my beard started to thin out last year but this seems to have resolved
- high anxiety and suicidal depression, because of the issues above
For the record, I’ve done these tests:
- Multiple blood hormone panels: no abnormalities
- Penile and testicular ultrasound 2x: no abnormalities
- color doppler: no abnormalities
- sacral and lumbar MRI: no abnormalities
- Uro-EMG 2x: first time some latency in the pudendal reflex, second time no abnormalities
- several nerve conductivity tests: no abnormalities
- pelvic ultrasound: no abnormalities
- prostate exam: no abnormalities (psa was raised slightly though)
Current medications:
- Cialis 5mg daily
I was on Wellbutrin last year but it did not help.
Psychiatrist and one endo diagnosed me with “acute body dysmorphia” (right, I developed a mental disorder in 15 minutes huh… BS) and “autonomic dysregulation”. For which they of course had no proof. Diagnosis of exclusion.
Last professor in endocrinology knew about PFS and gave me NO (mis)diagnosis (which I appreciated a lot more). But he basically said there’s nothing we can do, but go to therapy, stop focusing and hope for the best. His concern was sincere, however.
I do have another consultation planned in april, with a specialised unit in medical genetics who concern themselves with the “undiagnosed” but I doubt they will take me seriously.
So there it is. I’ve been suffering for 2 years now. I’m grateful for the effort the team has done in moving us forward, but I’m in a terrible place and pretty close to giving up. No one believes me, it’s so isolating.
Courage to you all.
Hope to update in a couple of months with positive news.
2 Likes