Guys, some of you may remember that I was on the old yahoo group. I stopped posting because, frankly (I had ed total libido loss etc.) the whole thing was too much to deal with. I do check in here and I wanted to mention that your determination is impressive. I wanted to post just, in general to say thank you, and to urge you to keep going. You’ve made some serious strides in the face of an evicerating scepticism on the part of the medical community.
I’ll give you a brief recap although I believe we all suffer from the same specific/mechanical effect/defect. Started propecia in late 2001 began suffering ed and libido loss after two months, old ardour has never returned. (I will mention that I did take ecstacy that new years(while on propecia) and felt a real occurence in my brain while having sex with then GF.(overload of pleasure followed by a strange feeling of something changing in the brain)
Part of the reason that I have not posted here is the daunting complexity of our problem. I am not scientifically minded, and have no endurance for extensive research. I think the main stumbling block im my case has been a sort of denial and wishful thinking that I might just return to my old self. I have never been quite sure that Finesteride was the cause despite the obvious correlation. I think we were all trained early on the trust professionals, police men, doctors, etc. It is very hard to argue in the face of insitutional dogma.
I’ve used alot of the suggenstions on the forum. I’ve been to Dr. Braverman. (I’m a New Yorker). Extensive day long testing to wind up with paxil and valium. (clonazepam, actually). I told him all about propecia an our ongoing issues, did not seem to fit in with his criteria (pre concluded diagnosis). (this was at the end of '06) (by the way forgive me for not writing in to relate story, I didn’t want to dash any hopes) (just anecdotaly I don’t think any of these avenues are dead ends. I think that this is how things get solved frankly, and what I’m really writing to say is that I appreciate what you guys have done not just for yourselves (although it is a big concern!) but for everyone who is dealing with this now, and hopefully won’t have to in the future.
I have also been to Dr. Shippen. He is a good guy, you can tell, but I think they are all in the mode of treating the symptom. I think the effect of the medication on us has been marked and specific. (shippen gave me HCG and Testosterone.(I can run 7 miles like that but no increase in libido)) and I think that we (you guys) have to keep pushing for a cure. I think mentally it is better to think that way. I know for instance when I look at myself, that I do not have that spark that made my life worth living. without determination to get it back entirely (a cure) we kind of drift into a mode of accepting the unacceptable. I know this is all big talk from someone who rarely posts. I just wanted to say thank you and keep going and that your efforts are appreciated.
To end on an up note, I see this whole circumstance as a Pandora’s box situation, i.e., it’s ugly and frightening and your basic wish is that you could change it’s having ever happened, but hopefully out of the suffering can come a higher understanding of things on a fundamental level.
I know this is all airy bull shit, and isn’t worth a practical dime, but I felt I should at least speak up and let you know that you are helping. thanks.
Welcome back and thanks for the kind words.
I agree, without finding out the root cause of our syndrome via in-depth medical testing, we will only be treating symptoms which may or may not make a difference.
Are you saying you are now on TRT and hCG for life? If so, since when and how are you finding the experience?
Have you noticed ANY improvements in ED, genital shrinkage, muscle mass etc (I don’t recall your symptoms)?
If TRT has not improved anything related to the sexual domain/ED/libido, it would seem that perhaps the Androgen Receptor is not harnessing the effects of T properly post-Fin. Have you tried adding DHT to the TRT to see if it makes a difference?
thanks for the welcome Mew, though naturally wish I didn’t have to be back. I have tried the DHT with the TRT, and HCG. I’m not on them presently, they were merely the last thing I tried (went to a wholistic Dr. recently who gave me all kind’s of supplements hormone precursors. My main problem has been a lack of, or rather a diminished libido coupled with periodic ed (weak erections, etc.) without any drugs I would say that I am anywhere from 60 to 75 percent of my old self. The real issue I feel is the lack of horniness. Since this began I have never gotten back to my former desire for sex (thougts, dreams etc.) I really think that this is a main issue for a lot of us. In this area I have never really had even periods of absolute recovery. I’ve dated since this and have been able to perform pretty well situation and cirumstance depending, but I still feel as though the old spark is not there. anyway, like I said I don’t have anything to add that hasn’t been said before. But I figure there has to be a ryhme and reason to all this, and I really think that if it can be done it can be undone, and if there’s any justice , renumeration for our time and pains.
I just wanted to write before more or less to encourage you guys to keep at it. thanks again.
oh, as for shrinkage, I have noticed some overall improvment since my HCG bout, and hope that maybe my body is producing T again, pre HCG was something like 250, went as high as 825 with meds, but started feeling a little unbalanced, so tapered off.
Yes, that seems to be the overwhelming issue for many here, self included (coupled with ED< shrinkage, genital numbness etc).
I found this article to be quite interesting as it relates to the loss of sexual potency after long term androgen deprivation (albeit not by Finasteride):
Mew,
Thanks. I think the shrinking of the prostate has a clear correlation with our issues. The odd thing in my mind is that we were all healthy, prior to our exposure to Propecia, and that none of us (still here) have recovered. there must be some common link. from a personal standpoint i will say that i have had flashes (few and far between) during sex when i have been pounding away not really feeling much, that i have had a dreamlike return to potent images that have made me ejaculate like that, which makes me believe that we haven’t out and out negated ourselves in terms of being reproductively viable. What gets me is that no one here has returned to that point where libido is ubiqutous and almost a pain in the ass.
Part of the reason that i haven’t posted in so long is that the problem is so gd circular and seemingly solutionless (at least not by anyone without a genetics lab), and DR’s even sympathetic ones seem not to truly appreciate the effect on us, even when they agree they only do to the extent of current science meaning, only within their current understanding. I do think that at some point we have a case to be made against Merk. The marketing of this thing was almost irresistible to any man whose ever worried he was going bald (i.e. all of us.). Even if it is only the 2% they claim, the bit about symptoms clearing up in two weeks is probably fodder enough.
I think all of us go through the same thing of really wanting a solution, looking at the options trying things, not ahceiving the results we want, trying to focus on other things in our lives, waiting for science to catch up, thinking that perhaps it’s psychological, etc. etc. etc.
for my own part I’ve seen a shrink on and of since it began, and find that, though it some help to discuss these things in full, a freudian interpretation doesn’t really hold any water. i think if we are going to get any concrete results we’ll have to keep going about it in the miniscule and shunted manner we have been. I mean it is almost comical (once in a blue moon) that the very nature of these problems is so personal embarassing and directly tied to a man’s sense of self worth, that even seeking help from the very medical…screw it I think you get the point and the irony. I just am convinced that there has got to be a way to resolve this, embarassment be damned! again I’[m only retracing what we all already know, mostly to get some perspective on the thing for my own clarity.
I will add that perhaps the lifting of the ban on stem cell research might provide some clues.
Wdderbell2 -
I read your most recent posting (e.g., April 11, 2009). I am almost afraid that when I post one of these message that it will be boring and not offer much information. However, I think it is worth saying that your message helped me. You said alot of things that I wanted to say - mostly, you expressed the hope that this problem might get resolved but also pointed out how FRUSTRATING our situation is. I want to thank you for expressing yourself, because it made me realize that I am not alone.
REGARDING A CAUSE/CORRELATION, you stated that you thought the shrinking of the prostate has a clear correlation with our issues. At one time, I also thought that as well. However, I don’t know if I agree with that statement any more.
We know that the drug shrinks the prostate due to reduced testosterone levels. In my case, I think that when I stopped taking the drug, my testoterone levels elevated, which should have meant that my prostate - which is sensitive to testosterone - should have grown.
With respect to my situtation, I haven’t been waking up with erections in the morning. It is my understanding that in addition to testosterone, the male “sexual system” is under the influence of not only androgens but also neurotransmittors. I wonder if the drug has damages receptor sites that receive or produce neurotransmittors that cause us to achieve erections, experience libido, etc. Ahedonia also seems to suggest that it is a neurological problem via neurotransmittors. Any way, that is my thought.
I think that you are correct that our efforts, even if they are performed in a miniscule or shunted manner, may lead to concrete results. Bringing this website to the attention of doctors and the medical community may prove valuable. Individually, we may be marginalized.
If our problem is as complicated as I believe it is, then our remedy is probably not going to be “conventional.” I think that others have tried Clomid and HCG but didn’t experience much success.
I too have wanted solutions, waited for my system to recover on its own, tried to take my mind of the problem, saw doctors and was dismissed by them. It is a nightmare to have these difficulties. You search for help from medical doctors and hope for empathy but you don’t necessarily receive it.
When I took the drug, I believed the information that I received, which was that when I stopped taking the drug, my system would likely recover. I thought that medical science would be able to offer me help even if my system didn’t recover. I was wrong about medical science being available. It is truly almost a hopeless situation. I guess that if we are going to go on living, we have to give ourselves hope.
Some interesting stuff you raised there, Bud. I think this is a common question people on this site ask themselves: is the problem hormonal or is it a problem with neurotransmitters?
The first step, in my view, is to get your hormones checked, and in detail. If there is an abnormality in testosterone, free testosterone, estradiol, prolactin, or even perhaps DHT, then there’s likely to be a problem in sexual functioning. And an ‘abnormality’ need not be off the reference scale, which is why many of us have such trouble with doctors. It should be said, however, that people here have had abnormal hormonal readings before.
If this all comes back fine, then only then would I consider neurotransmitters to be the problem. The brain is of course involved in libido and sex drive, and a problem there can manifest in sexual symptoms. If this is the problem, though, I believe recovery is still very much possible. With good nutrition (possibly supplements), sleep, and lifestyle, neurotransmitters should “normalize”, which should relieve symptoms. Some people have used medication such as GHB to “kickstart” this process, which is why I think they’ve seen a relief in symptoms.
Finally, the hormones do affect neurotransmitters to some degree as well. This is one reason why, if you are low on testosterone, you’re much more likely to lose motivation and feel depressed.
So it’s a complex issue, but one that I think can be resolved in either possibility. The only two others lines of inquiry people seem to have looked into here are prostate problems and some kind of acquired androgen resistance. With the prostate, I can’t see how a problem there can on its own dramatically kill sex drive - it makes no sense to me. And acquiring androgen resistance seems to off the wall to me, since I don’t believe finasteride could alter gene expression in some way to do this.
Correction – Finasteride atrophies the prostate due to reduced DHT levels. Testosterone levels get upregulated in the prostate and serum.
hey bud and all,
I was in my last post or two trying (for my own sense of perspective just to reiterate my situation, and how it relates to everyone else’s). I think one negative aspect is that we all are suffering this individually and since our numbers are small it’s easier to write them off, and to kind of say you feel all right when you really don’t. I am as I believe i said a total wash when it comes to technical bio-chemistry, but I do know myself, and how I was prior to fin. I think it is a very hard to play the middle ground here because none of us are “sick” and yet our quality of life is diminished to the point where depression is ubiquitous (actually I think that anyone who has been through this and not become depressed is truly f–d up). Part of what has happened personaly to me has been a large disilusionment with institutions that i grew up respecting. When I started the fin I was 23 (and from my perspective now still a kid) and I never thought a) not to trust a Doctor, b) that the sides would apply to me (in other words I was in the 98% for sure, not the 2%) and perhaps most of all, it never occured to me that medical since could not catch up to any glitches present in their product. So to basically go to the docs and find that there is very little they can do for you is hugely disheartening. That being said, I really feel that the effect is unfiform in all of us and specific in result , meaning that a “switch,” as it were was flipped in our brains (that effected our bodies and has left us all in our various states of partial recovery)
On the plus side it seems that we have some well educated and capable men on this site with the know how and pererverence to figure this thing out. I just wish that the medical community was not so damned sluggish unimaginitive, and sometimes cynical that we wouldn’t have to fight tooth and nail to prove something which may not constitute emprical data in a lab but certainly passes the gut insticnt test i.e.: sexually healthy men (without complaint or prior instance as far as i can tell) took a pill with a recorded negative effect on sexual health, and that some of them did not recover.
I seem to have written another three paragraphs that nicely sum up what we all already know. I’ll say this, I think the way that we’ve gone about seeking help for this is in the only way available to us, and it is fortunate that we have a means of pooling our collective experiences (imagine if someone had suffered a similar situation 20 or so years ago). I also think that the natural thing is to go out and continue to live one’s life, which we all do…but, being thinking animals there is going to be a part of us that needs an explination, and to hold those accountable. . .responsible.
Didn’t really part the red sea there: all I’m saying (i think) is that a lot of us are still suffering with this, and that it is a real problem no matter what hocus pocus they throw at you, and that while we aren’t yet getting the kind of help we’d like, I think we all have to keep at it and see it through to its conclusion, because if there’s one thing we deserve at this point it’s a resolution, and a clear cut answer to a problem we have expressed lucidly, and yet recieived so far only vague and unsatisfiying response.
Mew, Gimzim and Wdderbell2 -
Thanks for the replies. I agree with Gimzim that having values “within” range is one factor that doctor’s dismiss us so easily. Since erectile dysfunction may be psychological, our complaints may be dismissed as “psychogenic” - meaning, psycho-sexual impairment.
However, it has been pointed out that prior to taking the drug, we were young, physically healthy males and are now experiencing problems with our penis, erection, testicles/scrotum, prostate or ejaculate. These problems can’t all be psychological.
If this drug did damage our systems, how do we fix it? The solution to fixing our ejaculation problems may not fix our erectile or shrunken testicular problems.
Unfortunately, we don’t know what specifically has been altered. That is one of the frustrations. The fact that we can’t fix ourselves is another frustration.
I think that we are dealing with a very complex problem that we ourselves may be unable to resolve. Ultimately, we are going to need the assistance of the medical and scientific communities. It doesn’t seem that any one person or body wants to join our cause, though it does appear that there is one doctor - Irwig - who has expressed some interest. (God bless him.)
Mew, thanks for correcting me that Finasteride atrophies the prostate due to reduced DHT. The link that you posted startled me. If I understand correctly information contained in the link, inhibition of DHT may cause effects that are castration-like. (I’d like to crumble, but I have to stay strong.)
Hey bud, some interesting points. I’ve got a few thoughts on all of this which aren’t particularly well-connected to each other, so I’ll post them as they come.
-
Agree on the psychogenic point. In my opinion, morning erections are the litmus test here. If you don’t get them, or have reduced frequency, there has to be something physiological going on. Also, in my view, a marked decline in sex drive indicates a high likelihood of physiological causes. ED is very often psychological; a lack of sex drive isn’t so often.
-
If you haven’t yet had a full hormone panel, you should get one as soon as you can. The results might show you the root of your problem. If they’re below range, you have an answer there. If, on the other hand, they’re great across the board (not just “within range”, but strong values), then hormones may not be the problem. If nothing else, this gives you a starting point.
-
If your hormones are low but “within range”, it may still be possible to test to see if they’re the problem. There are essentially two ways to do this: 1) find an open-minded doctor willing to prescribe testosterone, or 2) try a natural product such as Sustain Alpha which can increase testosterone levels significantly. If you experience relief with products that increase testosterone, then low testosterone is likely to be the culprit.
-
If you have noticeable psychological symptoms like lack of energy, poor sleep, etc, these may be related to some kind of dopamine deficiency. Some users have found relief through GHB, and I know some dopamine agonist antidepressants (esp. wellbutrin) have been known to help with this. This area is complex, though, since testosterone actually increases dopamine in the brain.
-
There are good doctors out there, particularly if you’re in the US (which I’m not personally). You’ll quite often see Dr. Shippen and Dr. Crisler recommended. In my opinion, Dr. Mariano is even more impressive. Have a look at some of his posts on Meso-Rx and you’ll see what I mean. If I had the money to see him and was in the States, I would do so!
TRT should be considered as an absolute last resort as it surpresses your own endogenous T, LH and FSH production, eventually leaving you sterile while taking it.
A more logical progression would involve:
-
Try natural route first: weight training, diet, natural T boosting supplements like Tribulus, Tongkat Ali etc., or natural aromatase inhibitors (DIM, chrysin with piperine) if your E2 is elevated.
-
If you decide to try pharmaceuticals, try Clomid, hCG or Tamoxifen before resorting to TRT. These drugs can boost your endogeneous T production. If E2 is elevated, try Arimidex.
-
If those fail to work, then and only then consider TRT.
That is still entirely debateable… however, we do know the drug affects GABA-A receptor function, and Allopregnanolone and THDOC synthesis (neurosteroids).
Unfortunately without testing (unavailable in commercial labs) nobody has any real answers. It is interesting though that a number of men on this site have had symptoms of hypothyroidism (elevated TSH) after coming off, as well as increased Estradiol, Prolactin, Progesterone, Cortisol and SHBG. All of these may play a role in the mental/fatigue aspects.
Mew,
while going about your research have you ever spoken with someone who works in one of the labs that does the testing? I assume Merck itself would be the hub of the most copious and best data about finesteride and its effects. Do we even assume that our sides are being researched at all?
I forget who said it, but it seems like we could really use a professional of some kind on our team.
Thanks for the reply, Gimzim, Mew and Wdderbell2 -
I hestitate to use any more pharmaceuticals especially TRT. I understand that TRT is a theraphy that you have to stay on and it has the potential to also shrink your testicles.
I think someone pointed out on this website somewhere that Finasteride may be prescribed to male-to-female transsexuals. There have been cases where people who seek “sex changes” change their minds while still on anti-androgens and before they have surgery. If they have been on anti-androgens, they probably have experienced changes to their male bodies. I have looked for information to see how medicine has repaired their endrocrine and urologic systems. I was thinking that if I found information in medical literature related to those cases, then there would be help for us.
Unfortunately, I have only found information on the psychology of transsexuals, so it seems to me that medicine doesn’t have a cure or medical theraphy to repair an endocrine or urologic system that has been affected by anti-androgens.
On another topic, I thought that if we organized ourselves to meet physically at a convention and draw attention to our problems, then we might be able to get some help from the medical or scientific establishment. On the other hand, making ourselves public might open us to charlatans and people who might want to take advantage financially of our situation.
Guys,
I just thought I’d throw out an update, for my own sanity, because as per usual my situation is driving me insane. Like a lot of you I come and go from the forum because in my day in day out, I try my best to go along as though I’m all right, really because it is just too difficult dealing with this and finding such little resolution. end of bitch…
Here is the practical side, I got Arimidex (actually genereic from canadian on-line drugstore, real deal was not covered by insurance and was going to cost me 500 bucks. What I got is 1mg, made in India, but figured it was at least worth trying.) Just started taking it four days ago, nothing discernible yet. Off all other meds in meantime. Will say that I started Quercetin about a month ago, and did feel a slight improvement in terms of Horniness, and rigidity (thought volume of ejaculate increased too, but that might be wishful thinking.) As I say though, so far Arimidex has yet to wow me.
Going to get tested again after a month on, and will revisit dr. Am going to ask for: 3adiol G test, Pituitary Scan (if covered by insurance), and fertility test. (figured I’d like to know at this point wether kids are in the picture.) Any other suggestions?
Had thought about going back on Wellbutrin, but decided against as I don’t think it adresses core problem (although what has?)
Sorry if this is in wrong area for this post.
One more thing I thought of was have there been any cases of males babies born with genital defects as a result of Fin? I know the warning is on there, but do we know if there are actual documented instances? If so research conducted therein might be beneficial all around.