10 years PFS suffering

Member Stories
#1

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)? Spain

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?) Google search

What is your current age, height, weight? 35, 188 cm and 88 kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? 1mg finasteride

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

What condition was being treated with the drug? hairloss

For how long did you take the drug (weeks/months/years)? 3.5 years

How old were you, and WHEN (date) did you start the drug? 23

How old were you when you quit, and WHEN (date) did you quit? 27

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

How long into your usage did you notice the onset of side effects? after 3 years

What side effects did you experience that have yet to resolve since discontinuation? erectile dysfunction and low libido

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
[x ] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate
[x ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x ] 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
[ x] 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)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? natural path and supplements

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.

I would like to create a really meaningful post to help people who is suffering and also help myself.

I started taking 1mg of proscar a day (a piece of the 5mg pill) for 2 years. At first, it worked great for my hair and no sides whatsoever. Then the effect on my hair was getting poorer so i changed to a pharmacology formula for finasteride. A few months later, i started to realize that i was having sexual problems.

Well, when i was almost 27 i stopped cold turkey. I would say that the discontinuation led me to worsen my case getting more sides like metal and weight gain issues.

Over the last 8 years i have been slightly recovering from mental and physical sides. I work out and do cardio very often and i am quite fit for my age. I also follow a low-carb diet and sometimes intermittent fasting that truly helped me to build muscle and burn fat., making me feel much better at all the levels. Everything is fine but the two major problems that still persist: erectile dysfunction (sometimes even total impotence) and very low libido.

During this journey to fix these two problems, i have been following different diets and sport regimes, taking some supplements that i found here that could help, being in a very healthy condition (non-smoker and only a few drinks some days). I practically do no sugar either.

I have had many blood tests and always came back normal, even quite high testo level. I went even through pituitary adenoma surgery believing this was the problem (1cm was its size). I felt no difference after the surgery.

At this point and since the endocrine doctors have told me that based on this bloodwork they cannot prescribe any treatment, i had consultation with one of the best urologists in spain who wants to perform a penile tac shortly. I had 2 echo dopplers with a different urologist that partially provoked an erection, but nothing very promising. Results were not very clear and i ruled out this doctor.

This is where i am and i would like to share my experience and have contact with people who underwent similar treatments and may be in a similar situation. Plesae feel free to PM me.

Thank you for reading my story guys.

4 Likes
#2

Hi there nako
Welcome to the forum
I’ve read your story it was very upsetting to see that you have gone to such lengths to get things resolved yet still no positive outcome.
You are far from alone with this situation theirs possibly thousands of guys going through this process.
I’m personally in a very similar situation myself I have been to doctors twice for blood tests and they came back supposedly fine.
The last doctor said he thinks the problem is venous leakage and prescribed viagra to be consumed everyday for a few weeks.
He also booked me in with a specialist but that appointment isn’t until march.
I’ve tried all sorts of things over the years testosterone injections dianabol tablets calais viagra the list goes on.
Viagra works makes sex possible but it has a small window of around 4 hours which makes things very automated rather than spontaneous the side effects are a pain in the arse too.
I’ve given up on doctors for now and looking into amino acids and creatine combinations.
I’m determined to try and find a way to help myself and others in this situation I can’t imagine finding a cure as such but finding ways to minimize the impact is better than nothing none of us deserve the mental torments and relationship issues that this situation brings upon us along with the lack of medical understanding condemning us to prolonged suffering and a life of relying on drugs to have any form of sexual enjoyment.
Rest assured you have come to the best place this forum has alot of members experimenting to resolve our problems I’m sure between us we will find answers as to what works and what doesn’t.

3 Likes
#3

Dear Baz44uk,

Thanks a lot mate for your post and support.

To be honest with you, i also gave up on doctors a few years ago. I thought about following different treatments by my own but i did not find any on this forum that actually worked so i did not want to have any more stupid pills that could make me worse.

The adenoma surgery was indeed a major thing. The doctor operates below your brain. They said that the cyst could grow and could cause great damage in the future, and also that my sides could improve dramatically. To be honest with you, my conception is that the guys took advantage of my sexual sides to “sell” this surgery because other doctors told me to wait and see if the cyst grew more. Nevertheless, this is past now.

What i can totally confirm is that my penis flow does not work well. I used to have erections that lasted minutes and now this is like never happened in my entire life.

Since i consider that propecia somehow reduced my penis blood flow and created constrains withing the vessels, this situation may have ended up in Venis Leak or some kind of atrophy.

Has anyone went through this penis tac procedure?

It seems that it is a really new test and only a few doctors in spain can proceed. Echo dopplers were totally useful because it does not reflect well what is happening. Apparently, if the doctor finds the leak and it is located in a easy way for them to operate, they can sort the problem. I do not trust this that much but i have run out of options anyway…

Finally, i have also been considering a penis implant so you guys may understand my state of complete resignation…

Thanks a lot.

#4

What’s your response been like to PDE5 inhibitors (viagra, cialis, etc)? Have they improved your erections?

I would recommend taking one daily for a year and regular masturbation. There’s is some evidence this can improve erections over the long term and you may even be able to stop the medicine after a year and the improved erectile effect is maintained.

It’s worth a try before going for an implant.

#5

Also, did the ultrasounds actually identify a veanous leak? This was presumably not there before finasteride?

And just to confirm you testosterone has been consistently normal? Low testosterone can cause venous leakage. It might be worth checking free testosterone and SHBG just to be sure. Do you have any other symptoms of low testosterone?

#6

Thank you Pianist_Will,

PDE5 inhibitors provided decent help. However, i used 10mg cialis 5 years ago and I can assure you that i do not get the same result by having 20mg today.

Regarding the evidence you mentioned, could you post some study, please?

My urologist mentioned a 3 month protocol with daily cialis 5mg but he was not very optimistic that his could be helpful long term. He said that this could make me gain some confidence but it was not any cure. Also, since their effect also tapered off, i think i should only use when really needed.

Ultrasounds were not conclusive (this sounds funny, but imagine my face when the urologist says: mmm, yes it seems there is a kind of leakage, although not confirmed. However, VL severity cannot provoke the sides you are experiencing). On the other hand, i had no VL before the finasteride intake, this is for sure.

However, one of the urologist that i considered more competent suggested that I should go to this expert urologists that performs the TAC where the VL can be properly identified.

#7

So this is the study I was thinking of in terms of improving long term erectile function.

Now, this study was done with guys with arteriogenic ED and on older guys. The results may not generals to use. Nevertheless, there is evidence to suggest that long term, low dose PDE5 does improve the natural erectile mechanism so it is worth a try given it is low cost, low side effects, and if it works the potential benefit are huge.

Its an interesting result you got regarding the venous leakage - I did’t realise it was possible to get an inconclusive result like that! My limited understanding make think you probably don’t have a true primary venous leak (i.e. you were not born with an arterial abnormality causing the draining of blood). Your response to PDE5 again suggests its not a true venous leak. I wonder if what you have is more to do wit the veno-occulsive mechanism not functioning properly and it there means the smooth muscle of the penis is not able to sufficiently ‘trap’ the book in the penis. The first Andrologist I saw diagnosed me with something similar to this.

If this is the case, long term PDE5 might help as I have suggested. The Andrologist also suggested to me that shockwave may be helpful. As he explained it “the majority of patients suffering from ED do so because the smooth muscle in their penile arteries has been damaged thus inhibiting the functioning of the so-called veno-occlusive mechanism. Shockwave therapy has been shown to induce the body to repair the smooth muscle in the penis and thus improve the function of the veno-occlusive mechanism”. However, the extend to which this claim is true is hard to say. I have done my own research of the scientific literature and its hard to find reference to improvements in veno-occlusive function from shockwave. So I would not rush into this option and do your own research, get you own opinions from doctors, etc. Just bear in my that many doctors will not be intimately familiar with the science of shockwave.

So my thoughts are try to get a proper diagnosis, perhaps with a yet another doppler to confirm venous leakage. Try to find a google Urologist/Andrologist who is willing to work with you. In the mean time, get on low dose Cialis and see how you are doing in several months. Shockwave is definitely an option but it would be expensive and its kind of experimental with out condition really (no guarantees).

I wouldn’t necessarily just on the implant route straight away. There are new treatments for ED being researched and there is hope for future treatments. Once you implant, you can’t go back. It really depends how much it is screwing up your life. If you can have sex with a PDE5, I would be tempted to carry on with that until it really fails. In the mean time, you may have found a more durable solution to your issues.

2 Likes
#8

Dear Pianist,

This was indeed a very complete post, thanks a lot also for posting the study.

As for the study, i will really consider this and will address it to my new urologist. However, i am a bit reluctant to taking up new long-term pill treatments because we both know how the last one ended up… Also, 50 mg of sidenafil does not appear to me like a small dose to be honest.

The situation is that the echo doppler seems to be a less effective test to determine Venus Leakage, this is why i was told about the penis tac (more expensive and complex but better). I do not know if propecia may cause venus leak that can be reversible by testosterone intake (less likely) or surgery. First of all, i would need to have a proper diagnose. However, this seems to be so difficult…

I agree with you that implant shall be the last scenario to be considered, because we do not know what the science may discover tomorrow but i am quite tired of waiting and see no actual improvement or real diagnose for that problem

Shockwave is spain may start in 1500 euros, which is not much. My current urologist told me that this was for cases less unfortunate than mine, though.

Anyway, my plan is to get this penis tac before 2019 and i will keep you guys posted. I was only wondering if someone here underwent the same procedure.

Cheers.

#9

What is the Penis TAC - not sure I heard of this before?

#10

There are no guarantees about the longer term PDE5 intake, its really just an option worth considering before implant. I suspect it might help though. If its not super expensive for the shockwave too, its worth a try really. I would prefer to exhaust all options before I consider an implant.

There is venous leak surgery but my understand is the success rates are quite variable and I’m not sure how much of a long term solution it represents. Definitely keep us up to date with what you decide to do and how you are getting on.

#11

Please check the link below:

I think they also have english website version.

They call it angio tac helicoidal.

My last urologist (not the guy from andromedi) really emphasized that this doctor is the one to try to tackle the issue…

#12

The implant is of course the last stage. I would definitely go for pills and shockwave before. The thing is that even the urologist who performs (sells, in other words) the treatment was reluctant to recommending it for my case.

VL surgery is indeed tricky. As far as i understood, there is a great chance of being successful if they find where the leak is (and the place is accessible). Otherwise they would not recommend the surgery if recovery possibilities are low. Anyhow, before giving any feedback, i would need to get the angio-tac done.

#13

Just been reading about it, the angio-tac does sound like a worthwhile procedure and would hopefully give you a definite answer about venous leakage. I’m just wondering really - if this test comes back fine, what would they diagnose you with?!

#14

Although i am of course no expert at that, it seems that the angio-tac is truly a really modern test that overcomes echo doppler in terms of diagnosing penile issues. My former urologist described it as expensive but clear and conclusive. It seems that there are only a few centers in spain that perform it and i am lucky i live close to Seville, i guess.

#15

The situation is that this urologist is really expensive and the sensation i have from the adenoma surgery is that health has also become a business in Spain (sadly as it started many years ago in the US). Therefore, i do not fully trust any of these doctors anymore. The experience with another urologist i visited does not help either. The guys performed two dopplers (different tests apparently in name they look very similar to me) and ended up saying that they are not sure about the diagnosis so that there was another test that…

Anyhow, what to tell you, this is the health rat race, similar to financial rat race for these XXI century…

#16

Hi mate
Sorry for the delay in getting back to mate
I see Will has given you some great information.
I’m currently trialing a couple of things myself I will send you all the details mate its too early to know which way it’s going but i have my fingers crossed that the outcome will be positive.

#17

Dear Baz,

Do not worry my friend, I was also busy at work so I could not get back to you guys. I would like to share a few things related to this that happened to me lately:

  • My medical insurance sent me a note not approving the ANGIO-TAC. This was kind of expected since no insurance in Spain covers ED issues. Anyhow I will push the doctor to say this test would also cover pain or any other potential side effect so perhaps they might end up covering (not very likely but I should try at least). If not, I will anyway take the test in the coming months and pay the bloody 800 euros from my pocket.

  • I had sex a few days ago with a younger lady that really turns me on. Well, I took 50mg of Viagra (half of 100mg pill) like 2 hours before sex with practically empty stomach. I had 2 glass of wine and a little bit of rum before sex. This is the first time I take this drug. In the past I always used Cialis with acceptable results that eventually tapered off a little bit. I will try to describe all I felt because I consider this is important in terms of libido, erection and sexual satisfaction. Libido with this lady was high (I would say 7 out of 10, close to prefinasteride intake) in my opinion not only because of her hot body but also because of the better blood flow. Erection was 8.5 out of 10 for the first sex session and 7.5 for the second. I had sex by 4 pm and then 6pm with no problem. However, whenever she was over me, I kind of lost it a litte bit the erection, which makes me thing that there is Venus Leak or something similar that is not pumping blood properly (pressure problem, nitric oxide, I hell don’t know… but there is something for sure). Sexual satisfaction was also 7 out of 10 because: I managed to have sex twice in relatively Short period of time, I could ejaculated both times (the second one was very difficult though), orgasm pleasure was decent (definitely not like prefinasteride intake). let’s say 7 out of 10 and 6 out of 10. From her side was really great sex (if not she should be nominated for an Oscar award) but for me was only quite good despite that I also took a pill to achieve this.

My plan for the next months is anyway the following:

  • Stick to the workout routine (2 heavy weight days and a HIIT cardio session every week at least).

  • Keep my low carb and kind of keto diet (I really felt very fit for the 2 sex sessions so my problems are not physical condition related).

  • Use my shower pump to help penis blood flow 5 times a week.

  • Avoid alcohol when possible (beer is not very well tolerated by my stomach anymore).

Regarding sex, I will repite with viagra in the same way because cialis sides were a bit more unpleasent. With viagra I felt no sides whatsoever.

Sorry for the long post and please feel free to give any feedback.

Best regards and enjoy your weekend.

1 Like
#18

Hi matey
You gave the Viagra a shot then pal sounds like it hit the spot :+1: that rarely let’s me down but you will most likely have to up the dosage in time but nothing crazy I’ve been using it for over 10 years recently I’ve had to up the dosage to 125mg problem is anything in the 100mg range the side effects get heavy blocked nose bloodshot eyes and headaches. Cialis didn’t do much for me I tried taking a low dose every day for a couple of weeks but made no difference and in higher doses it gave me a splitting headache.
Great to hear it’s working out for you mate it takes the piss having these side effects from a drug then having to rely on another drug just to get an erection but at least viagra can give us some sort of normality just don’t let taking that tablet play on your mind and it will bring you some mental relief.
Can I ask what is a shower pump mate ?

You have a great weekend pal :+1:

#19

Dear Baz,

Well, I do not want anyone to think I am selling a product here so that is why I did not mention the brand. There are a few Air pumps that may help with penis blood flow. I can indeed feel the difference. Mine is bathmate.

I do not want to rely on pills for anything in my life, of course. However, viagra really allowed me to have normal sex twice so I am happy with this so far.

I would like to take that test and hopefully have a proper diagnose. However, the idea of getting the double caverjet injection to pass the test is really hitting my mind very badly…

#20

Really good to hear about your success with viagra Nako! Hope that gives you a bit of hope really. Had any more thoughts about the long term daily viagra route to see if it heals the penis long term? Discuss it with your urologist/andrologist.

Will also be very interested to hear the results of you ANGIO TAC. Keep us up to date.

You say your worried about the caverjet injection - how come? Have you had one before?