My Recovery - by Reason

Apologies in advance as this is a bit of a long read, but it has been over 3½ years now and I didn’t want to miss any major points out in case it can benefit others. I had been meaning to write this for some time now – so thanks to ‘Boston’ for giving me that ‘kick up the @#$+’

I started on Propecia mid May 2005, and quit 6 months later after experiencing a very sudden loss of libido – literally overnight.
My libido had increased while on the drug and then stabilised (had always thought it was pretty high anyway), but then experiencing ED for the first time in my life and a complete drop in drive and libido was a sudden shock. As the only medication I was on (and have ever been on apart from a couple of short courses of antibiotics, the last of which was at least 5 years prior to taking Propecia) I immediately stopped taking the pills. For background information I had previously avoided any drugs (recreational or pharmaceutical) wherever possible (I maybe take one aspirin a year, if I have a really bad headache)

I felt a bit better 2 days later and cautiously tried a half tablet. Next day felt bad again and I never had the second half….

In addition to this I found that I was becoming very emotional with unusual mood swings (a fact I later put down to high estradiol or certainly a higher than normal E to T ratio).

After a few weeks I found I was able to have sex again, but erections were not as strong and libido was practically non-existent – even attractive females didn’t register (didn’t catch my eye or turn my head…) and everything felt ‘dead’. ED was less common, but this may be because when I felt things were really ‘low’ I would avoid sex altogether.

Over the next few months there was no real change. I had started doing some research online, although initially found it difficult to focus and put my thoughts together, and early on found and got involved with the old Propecia forum, which was a great help (and also a worry!)

At month 5 off the drug I took my first real action and tried Chinese medicine – I was recommended a herbal product (which since seems to have been withdrawn, but I remember it contained ginseng, semen coicis and semen cuscutae). Just a few hours after taking the first pill I felt a surge of energy and my first spontaneous erection since quitting (completely unexpected and while sitting in a meeting). For the next 48 hours life was back to normal, almost exactly as I had been before taking Fin. When the effects wore off I took another, but this time they only lasted for 24 hours…
A friend of mine is a doctor with a practice in the US and when I told him about the Chinese herbs a few months later he warned me to be very careful as he heard that many of these ‘cures’ also contain steroids which can explain the ‘miracle’ effects. This may be supported by the fact that I tried to duplicate the effects by buying each of the ingredients and combining in the mix stated on the packaging – with absolutely no effect whatsoever, despite varying the concentrations as well.
My friend also told me that when he was practising general medicine (he has since specialised) he took a course in acupuncture and applied this in combination with ‘western’ medicine to treat a number of his patients. He claims that in every case it boosted their recovery (although cannot explain exactly how the mechanism works).
I did try this route in London but I must confess that I probably should have gone to a more professional practitioner than the one I found (I gave up after one ‘treatment’).
Over the next 6 months I still took the herb capsules occasionally, but found I needed to take them infrequently or the effects were minimal. I also discovered that I could reduce the dose and they still took effect – half, even a quarter of a capsule – though this was normally limited to 24 hours max.
After another visit to a doctor (had been a few already) I was also prescribed Viagra which I tried a couple of times – the results of this were mixed. It helped a little with bloodflow but did nothing for libido. I did notice however that I would have nocturnal erections any night after taking it (something that was now extremely rare) and that it was easier the following day. I also experimented with one tablet, breaking it into quite small pieces and taking a piece just before bed, which resulted in nocturnal erections again (I cant remember exactly but I think the smallest piece that worked was about 1/10th of a tablet) – I am sure there was a report about this as well somewhere, about how it could improve bloodflow etc.

Now, 1 year since quitting, I had stopped both of these. I was taking occasional supplements – 15mg of zinc regularly, and flaxseed oil. And my diet had become healthier over the last year – more vegetables, particularly spinach, cabbage, broccoli and more fresh fruit (including bluberries).
I was feeling better overall – I had more energy levels (these had been very low when I quit and had gradually built up) and my mind was getting sharper. I was starting to perform much better at work and got my career back on track (it had stalled and the year before I had taken a step back - in hindsight this was probably no bad thing as it took some stress load away).
The only remaining issues were the sexual sides, notably that libido was still low. I visited a clinical hypnotherapist for a couple of months who thought that I was still stressed by events and who taught me how to go into deep relaxation. This helped a little, but not sure it was a major factor – I have always held that these are not psychological problems, but getting solid rest is essential in any recovery.

The only other treatment I had tried was the broccoli treatment, and I genuinely had some success with this. After 2 days in I had spontaneous erections, but again the effects seemed to dissipate and if I started the treatment again too soon the results were much less. I am so certain that this helped, that to this day I still include broccoli in my diet and try to eat some at least once a week.

18 months after quitting I was starting to feel more human. Libido was still (very slowly) increasing and I had more motivation – I started going to the gym again for the first time since quitting (I had previously gone 2 or 3 times a month). With regard to the sexual sides I felt about 80% recovered – erections were ok, they were just slow to get started and libido was still low, but there!
And the medical reports and examinations that said my testosterone levels and fertility were ok were at least backed up as my partner was pregnant (and practically from a ‘first hit’ while on holiday in the States).
By this time I was starting to believe that full recovery would take 3 to 5 years (as some people have already suggested).

By year 2, things were still improving (although the pace of improvement seemed even slower). I had by now tried months on what I considered an extremely healthy diet (no caffeine, alcohol or sugary snacks), but found this made little difference – I still eat far more healthily than I did before but realise that the odd cup of coffee, chocolate bar or a few glasses of wine during the week make no difference, so why live like a Spartan??
My partner had by now given birth to a very healthy (and now almost 2 years old) little girl.
Libido was still lower than I wanted it to be and I felt about 85% recovered. By now I really believed that the only way to progress was to take a more ‘holistic’ approach and that there wasn’t going to be a ‘magic bullet’ that would cure us all. From what I had read on various sites, especially the data and thoughts collected on the old and new forums I saw 3 areas that I had to work on:

  1. Mental state – staying positive, minimising stress and getting quality time to relax and decent sleep.
  2. Shifting the T:E ration in favour of more T!
  3. Improving my overall blood circulation.

The first point I consider essential. Our problems are not psychological, but excess stress and lack of quality sleep will inhibit healing and put extra work on the adrenal glands (but not in the way we want). Due to the fact that for me the effects of Fin were immediate I think that adrenal fatigue was a factor in my case. Tests I had done at one point also supported this, backed up with a conversation with one of the lab analysts.14 months after quitting my cortisol levels were low and dropped to almost zero late evening, while DHEA levels were well above maximum range.

With regards to the T:E ratio, my thoughts here were that I needed to boost total testosterone as high as I could. At the 6 month mark I had found some small, yet alarming, fatty deposits around my pecs. I have always been within the ideal weight range for my height and this was the first time I had ever felt this – they have now gone completely. If I could get T levels higher I figured I would get more blood flowing, get nocturnals started again and improve the condition of the organ I used to use as a brain!!

To further support this, for the 3rd point I wanted to get my circulatory system into the best shape possible. I figured if I could get blood flowing better where it was needed it would reinforce T production and vice versa.
This follows an early hypothesis I had that if raising the levels of free testosterone improves blood flow and libido, then maybe the reverse (improving blood flow) would work.

I guessed that a combination of small improvements in these areas would make a significant change overall – like cleaning the fuel injectors, spark plugs and air filter…

My regime included:

  1. Making sure that I got quality time for sleep – ideally 8 hours a night, but a minimum of 6, and taking time out to relax (ie. not working all through the weekend)
  2. To try and boost testosterone naturally – zinc supplements, weight training at least once a week with heavy weights, bagwork (and the trick here is not just the exercise but in building up and releasing aggression (think ‘manly’!!)
  3. For bloodflow – diet and supplements. Natural garlic and ginger, flaxseed oil for the omega, occasional doses of vitamin C (and with fruit) as I read that this helps elasticity of the blood vessels, but also that the body can get used to higher doses, purple grape juice or a glass of red wine (from the ‘sunnier’ climates recommended, e.g. rioja) several times a week for the resveratrol (also for blood vessels). In addition I tried to have one or two cold showers a week (for just a few minutes) – again alleged to help the circulation. If I wasn’t really in the mood (brave enough) some days then I would just shower the lower half of my body. The final one here I call ‘Use it or Lose it’ – you have to find ways to stimulate blood flow and have several erections a week (through sex or other), especially if you are not getting nocturnals. Kegel exercises may also help but I could never remember to do them…

One thing I found that was particularly effective for me was coldwater swimming. On a week’s visit to some friends in Eastern Europe last summer I had a swim almost every day in either a river or the Baltic Sea – by the end of the week I felt fantastic and my libido was sky high.

By March of this year, not quite 3 ½ years in, I would put my recovery at about 90 to 95%. My sex life is definitely ok (no ED in over 2 years), libido is still variable but I am getting older so I am probably closer to where it should be for my age (I had a good run before Fin!). Nocturnals are now very frequent (almost every night) which I take as a good sign.

In the last few months I have increased the intensity of weight training (really wanted to see if I could get back to peak condition) – I now go twice a week and vary my routine more (I even use 2 different gyms as the equipment is different). I have had no problem putting on extra muscle – 3 to 4 kg already, and I am actually the strongest I have ever been, so although not tested for some time I think I must be producing a fair amount of T.
The only thing I have noticed is that if I have a really heavy session then a day or so later I see a slight drop in libido, almost as if I have used up my testosterone reserves – I guess I am just pushing too hard sometimes.

The only supplements I have been taking are zinc (with copper) – 15mg per day, approx 5 days per week, but I try and vary it, occasional flaxseed oil capsules (3 or 4 a week) and additional protein under this training regime (in particular a lot of eggs).

I still have the occasional cold shower, or swim in a cold sea (there are plenty around Britain) and still eat reasonably healthily. I try to include the following in my diet each month, but I don’t stress about how much I eat each day or week – broccoli, spinach, tomatoes, walnuts, watermelon (the white part of the rind apparently contains citrulline which the body converts to arginine), blueberries, fresh garlic, brown rice, honey and fish. I figure the odd steak occasionally is ok as well!

That’s all really. The other healer I believe is time. My body was certainly put out of balance and I experienced some dramatic swings in mood and feelings, which through time have damped down to a more consistent level. I feel I am still getting stronger, but now at a slow rate.

The trouble I found was that the tests I had were inconclusive, sometimes contradictory, there was a lack of understanding from the medical professionals I came across and that the full extent of the immeasurable number of interactions between the numerous hormones in our bodies may never be fully understood – leading me to the conclusion that there was probably no simple cure in my case, hence why I eventually decided to focus on total body health. In fact as our bodies are all different it could be that we have all been affected in subtly different ways.
Although things have improved dramatically for me, there is still one missing factor that I am searching for that I believe will give me that last 5 to 10% back.
I believe this because there are days when I am absolutely at 100% as I was before Fin – libido, mental sharpness etc. but I haven’t been able to figure it out what makes the difference. I have had surges in libido sometimes after a night of heavy drinking, even at times when I have felt ill (stomach bugs/ viruses) but can’t logically equate these to an improvement.

I will keep searching, seeing if I can narrow it down, but to be honest I have reached a stage that I am happy with so I feel no real pressure.

Recovery is possible, but the road can be a long one. There are always setbacks along the way – every time I made a major leap forward I took almost as big a leap backwards, but you have to persevere because every tiny incremental improvement is another small step.

This forum and all the success stories it contained was a major source of support. Additionally you need people around you who can help – my partner was a solid support all the way through, and I took inspiration from many others along the way including among others, a fellow sufferer I met up with from Canada, ‘Hypo’ who gave some solid feedback and Mew who has put in more effort than anyone into understanding our issues and creating this forum.

I wish everybody well – have faith, you will continue to improve, though some faster than others, and you will come to realise as I have what the most important things in your life are.
And never, ever give up !

4 Likes

Hi Reason

Thanks so much for coming back to tell us your story. Certainly inspirational for everyone here.

I just have one question, which I hope is all right.

As you know, a few of us here believe that the post-Propecia syndrome is, at heart, some kind of change in the way we respond to androgens: that is, a kind of androgen insensitivity. Put short, it seems that our bodies do not respond to T and DHT in the way they should. We don’t know why that is, but it seems pretty clear that this is the case.

There is a chance that we might be able to pass on this androgen insensivity to our children. Very few people on this board or the old Yahoo group have had children, but whenever I read about a post-Propecia case having a child, the child has always been a girl.

This leads me to be concerned about the possibility that post-Propecia men are indeed passing on androgen insensitivity to their children, and that some of these girl babies are in fact, in genetic terms, boys who have been insensitive to androgens since conception and consequently not developed male characteristics. These genetically male babies are therefore born with female appearance and have been raised as such. This is what is seen in some cases of heriditary androgen insensitivity: the genetically male baby is born an apparent female and nothing is suspected until puberty or later.

So my question is: have you had any genetic tests or other tests that can confirm that your child is indeed female in genetic terms (i.e. has XX chromosomes)?

In addition, can anyone else who has had a child come in here and state the gender? If anyone has had a boy, that will kill my concern and we can forget the whole thing.

I know this is an upsetting subject and I hesitated to post about it at all, but decided to go ahead in the spirit of openess that informs this forum. On balance, this problem is unlikely. But def worth investigation.

Thanks again.

WOW! You really are Scared Male!!! Damn…

I am also interested in this area. Great to hear that your baby has been healthy and happy.

If your child should ever undertake the testing ScaredMale is talking about, please keep us informed as to the results.

Thanks for your post and update, much appreciated.

Boston, who is ultimately is more scared? Me, who confronts the reality of this situation? Or you, who buries his head in the sand and pretends that the post-fin syndrome amounts to nothing more than “a little congestion down there”?

If you are 100% sure that we can’t pass this condition to our children, then I’m thrilled: please explain how you came by this knowledge. If you are not, then isn’t it better that we address the question? Or should we just refuse to even ask it, because we don’t want to know what we may discover? In short, I revert to the position on you that I have gradually developed over the last 10 months, which is that you are one of the most idiotic people I have ever encountered.

It is wonderful that Reason’s baby is happy and healthy, that’s for sure. A very simple blood test could confirm that she has XX chromosomes. As I said, the chances of any of this affecting our children seem slight; but worth investigating for peace of mind, and because it’s better to know sooner rather than later.

Reason, thank you for coming back to share your story. As ScaredMale30 mentioned, it is certainly inspirational, and will no doubt help many guys who are struggling to cope w/ the consequences of this God-awful drug. I myself would be thrilled if I could eventually get to the point where you seem to be today.

As far as the discussion about children, I’m not sure how to begin. Obviously this is a very upsetting thing to think about, particularly since Reason already has a child. For the sake of everyone involved, however, I think it’s important that we consider this possibility. Reason, if your child should ever have such a blood test, I would also urge you to keep us informed about the results.

My question to those better informed in these things, however, goes like this. If post-fin really is about “androgen insensetivity” (quite possible, or even likely), then wouldn’t cases like Reason’s demonstrate that these changes are in fact reversible? Reason states that he feels more than 90% recovered after some 3 1/2 years, and that he occasionally feels completely recovered. It stands to reason (no pun intended) that such improvements would continue over time. So if post-fin sufferers can eventually get back to normal (and we’ve seen this happen), then wouldn’t it follow that the damage (whatever it is exactly) has been reversed to a point where we shouldn’t have to worry about passing it on to our children?

Since I wrote my post above I’ve been thinking back to my high school science lessons on inheritance.

The simple facts governing genetic inheritance should, in fact, serve to reassure us that it is extremely unlikely, if not impossible, for us to pass on this condition to our children.

I’m sure we all remember that all humans have two chromosomes, XX if they are female, and XY if they are male.

When a male child is created, he obviously takes the Y chromosome from his father and the X chromosome from his mother.

The vast majority of our genetic information is carried on the X chromosome. That includes the gene for the androgen receptor.

That means that even if this condition has caused a genetic or epigenetic change to the androgen receptor, and even if - in the case of epigenetic change - that change was able to pass to subsequent generations, there is no way that we could pass that mutated androgen receptor gene on to our XY children, that is, our sons. Because when a father helps to create a son, he does that by passing his Y chromosome, not his X.

Say Let Xm stand for an X chromosome that is carrying a mutated androgen receptor gene. Then, if you accept that we are carrying a mutated androgen receptor gene (and that is a big jump) we look like this XmY. Our partners are like this XX. Any male child we have must look like this XY. We could pass our mutated gene to our daughters, who would look like this XmX. But that would not matter at all, because (i) women don’t need to be androgen responsive and (ii) the other X chromosome would override the faulty one, anyway.

These rules govern the inheritance of the known and acknowledged forms of androgen insensitivity. A male child can only inherit androgen insensitivity from his mother. If a mother looks like this: XmX and a father looks like this: XY, then you can get a male child like this: XmY, who suffers from androgen insensitivity, does not develop male characteristics, and is born appearing to be female.

Summarising the above, if our condition is indeed genetic or epigenetic in origin, it would almost certainly take the form of an X linked recessive condition, like other forms of androgen receptor dysfunction, which fathers cannot pass to sons.

Given all this, it seems unlikely in the extreme that we could give rise to any androgen insensitive male children, even if our condition is some kind of genetic or epigenetic change. The inheritance would have to take place in some way that is radically outside our current and pretty good understanding of how genetic inheritance works.

I think we can all take comfort in this.

I read that fin inserts in Europe state that the drug can be passed through sperm.

If this is the case, do we think there should be concern that fin’s effects could have been passed on to our partners (and in turn to subsequent pregnancies)? That is, if while taking the drug, we were having unprotected sex.

I guess the best way to put this to rest is to find out if anyone’s partner has also had any sort of side-effects (not sure how these would be manifested in females). Or maybe it’s feasible that androgen malfunction would not manifest itself in am adult female, but would in a child.

I just don’t want to close this line of thinking based on general genetics and the assumption we are the only ones affected. I understand this is very unlikely.

From what I’ve read, no one really knows whether when a man is taking finasteride that finasteride can be passed to female sexual partners in his semen. Clearly there is some risk of this. Given the further risk of birth defects, it is highly advisable to stop taking finasteride before you try to impregnate your partner.

The idea that any man on finasteride having unprotected sex with a woman could pass enough finasteride to that women to cause the woman to suffer from the post-finasteride condition is so unlikely as to be not worth considering. First, even if finasteride can pass in semem you’d be talking about microscopic amounts: dangerous to a developing baby perhaps, but not a grown woman. Second, the actions of androgen in the female body are so different to that in the male body that it just doesn’t really make sense to talk about women suffering from this condition in the way that we do.

I just find it unlikely beyond belief that a woman could experience genetic or epigenetic change duu to microscopic amounts of finasteride passed to her in the semen of her partner. We’ve all got plenty to worry about, but I don’t think we need to worry about that.

Congratulations that you recovered and God bless you.

I wish you and you family all the best, may you get as lucky as it is possible and get even more healthy. Love live.

God always at your side man. I will pray for your luck and the health of your baby.

Thank you very much for posting, REason. It’s encouraging. I am certain that I can beat this disastrous experiment’s repercussions (my FIN use) with time, diet, exercise, sleep, and good habits similar to what you have tried. Further medication seems a bad idea, but I am certainly willing to visit a Chinese Medicine practitioner when I’m able to see one where I know they are experienced and capable (I have been to a few who are very effective and I’ve been to ineffective CM ppl too).

Is reason still about?

yeah well you are a muther-fucker!! And a fucking paranoid loser!

And with that, boston, you will go on a much needed vacation.

Despite the original post you replied to, that type of language is uncalled for. Not to mention you are replying to a post literally a year old for some odd reason.

Anyway, you’ll have plenty of time to think about it, until the fall.

with regard to the comments about passing this on to our children. i think that we will pass on the gene problem that we may all share here. however it may be a situation where if our son never messes around with this hormones then he will have nothing to worry about…

Well that would be even before we messed around with this junk. Now we have possibly changed our genetic profiles permanently and could therefore pass it on. I think its highly unlikely with the varibility in genetics but mutated genes are the reason for the evolution of man. It would mean our children would not develop correctly if males I would think. It is well documented that male sperm count has gone down exponentially over the last century. This is because of all the mutations man has introduced to the environment. Pharmacueticals are probably a big variable in that as well. After all, chemistry is perhaps what made us and evolved us.

I have read the above recovery many times for inspiration. After reading though, there is no evidence here that he crashed or had severe sides. The evolution of his symptoms was very similar to mine. However, once I crashed, it has put me in a place where a recovery is very unlikely. Especially after crash number two.

I still have not seen one documented crash recovery. I think we need to do a poll to see how many people crashed and clearly define a crash for member stories.

I agree, it is extremely irksome when some guy complains of a ‘crash’ because he hasn’t had a good night’s sleep or missed a couple of morning erections. Because the proper ‘crash’ - hormonal collapse with accompanying severe side effects - has been identified as one of the key events in many stopping the drug in the last couple of years, and recently more highlighted on the site info as such, the term has become degraded by a few.

I doubt it’s possible to recover from the crash without some sort of TRT, which isn’t showing much success.

Very scary. I keep going back to that thought too. I pray over time we all can recover.

I’ve had twin babies 3 months ago. They are perfectly normal. A boy and a girl.
Pregnancy happened in vitro fertilization. We have tried once and luckily it returned positive. They were born 36 weeks and thats normal for twin babies.
I am suffering FPS for 6 years also. And unfortunately no improvements still…
But the same question concerns me that in the future will my boy suffer any kind of androgen abnormality…