Advice Needed

[jorbie77 (imported)]

Remember, you are just a number to your doctor, and especially the pharmaceutical companies; not to disparage your GF . . . I'd be amiss to think she did not know, or did not discount the 'margins' of side-effects reported. That's what a physician does. 1-in-a few thousand deaths, etc., = go-ahead with the FDA, and "OK" with any physician. Your girlfriend may have discounted any known reporting due to the hushed-up documentation left off U.S. labeling. To sell drugs to physicians, the drug reps NEED the literature. It's all about sales and numbers.

Bing search (http://www.bing.com/search?q=Propecia+L ... FORM=R5FD6) = 585,000 results for Propecia side-effects, lawsuits, advice . . .

Schering-Plough was purchased by Merck Pharma (http://www.msppharma.com/msp_jv/mspphar ... /index.jsp) - Merck had to deal witrh a huge mess of lawsuits over Vytorin and Zetia (http://www.pharmaceutical-business-revi ... esolve_law suits_090805), that Schering-Plough left behind. Testement to their 'honesty'. In 2004, Schering-Plough was accused of marketing gimmicks and payoffs to doctors (http://www.nytimes.com/2004/06/27/busin ... r=USERLAND) for prescribing the company's pharmaceutical products.

Yes - NOW when you do a Google search a lot of information comes up. However, in February 2010 - a Google search done by just typing in "Propecia" would not have revealed anything about the side effects until the 5th page. I needed to have typed in "Propecia side effects" and I would have been warned...and don't think I don't cry myself to sleep sometimes wondering WHY I didn't do more due diligence. I just trusted the FDA and Merck - that a drug that had been on the market since 1992 would have been "tested" enough so all the side effects were known - little did I know how active Merck was in covering up the side effects, and how complicit the FDA was in letting them go over three years with separate labels in US v Europe.

Anyways - like I said - I am optimistic - better days are ahead....but it may take a few years to get there. Thanks again for your help Artistic - I just ordered a bunch of the stuff you recommended. I will keep everyone abreast of my progress.

[artisticlicense (imported)]

Something I just thought of, and there are several members who can attest; at your age, your brain is educated toward sex. It is the largest sex organ in your body.

The same stimuli that once 'turned you on', will still be recognized by your brain. However, you may not 'feel-up-to-it' - THAT would be the broken testosterone bio-signaling; or a typical eunuch response. Add that to your frustration focused on the numbness in your penis, and you feel 'lost'.

You know what your penis is, what it does, how it should react and feel. You need to find a way to reconnect the broken link between it and your brain.

As stated in earlier posts, try a slow massage, and 'think' about it while you are working it. 'Remember' what you already know. Concentrate on release.

This is the same advice women get for reconstructive Clitoridectomy surgeries, where they substitute a different body part, skin and nerves.

This is the same advice burn victims get. A whole bunch of those people recover nerve damages. Nerves can regenerate, and the brain can learn a new pathway to them.

Stimulant creams like the Ginseng, and stimulant supplements like L-arginine will increase blood-flow; and should help in the nerve signal healing.

From what little info there is on PFS, your nerves are not physically 'damaged', but your brain is (not recognizing them).

The nerves going to your penis are closely associated with your tailbone spinal junction (in simplest terms). Try massage between your anus and scrotum, and between your anus and tailbone (where the nerve bulb of your penis root begins). Men who break their tailbone from sports and kick injuries loose penile function and feeling. One of the support/recovery techniques for this is inversion therapy. Ever seen a Teeter-table (http://www.teeter-inversion.com/)? Inversion releases tension on the spine, especially the lower spine. Relaxing the spine does rejuvenate the lower extremity nerves. It is a new therapy that is gaining wide attention from specialists.

Maybe try the massage techniques while inverted . . . something new to bring to your relationship? She may think it's fun or kinky.

Try hanging a weighted cord or ornament on your penis, and walk around, allowing it to swing or bounce around. Perhaps do it in front of a mirror. Watch what it does. Eyes-to-penis, feel the ornament moving = feel the penis. Brain-homework.

[jorbie77 (imported)]

Thanks for the advice. Its get to know that someone with severe nerve damage can overcome it. I have been on the pregnalone for about 2 weeks and have noticed my sleep seems to have improved. Nothing has improved with penile sensation, but I am going for a message this weekend. I am trying to reconnect my brain-penis pathway per your recommendation. I will keep you posted - thanks for offering your advice.

[transward (imported)]

I would like to second Kristoff on seeing a therapist. What I am going to say is not meant as any criticism nor I am not implying any mental illness or deception. But in talking to hundreds of trans people and being one, I have learned about denial and self deception. Most of us human beings lie to ourself more than to others. If we didn't we probably couldn't live with ourselves.

To me, the reasons you propose for pursuing castration sound more like the rationalization people go through to justify something they already want to do. The straight (and most of the gay) men I know have a horror of the very topic of castration. Finding themselves in your situation I can't visualize them considering solving the problem by finishing the process and getting rid of the balls and the rest of the testosterone.

This is not to say that you should not pursue castration or that your reasons are invalid (sometimes an Alexandrian solution works), but I think some time spent in the Socratic search to "know thyself," with the assistance of a therapist, to understand your own motivation and desires could help avoid a huge mistake. The situation is not exactly the same, but I have known trans folk who did not sufficiently do this, who went all the way through SRS, before realizing that that was not what they really wanted. Believe me, afterwards is not the time to come to that realization.

Transward

[transward (imported)]

Regarding the penile numbness, are you by any chance an avid bicyclist? Numbness caused by compression of the penile nerve is a well known side effect of long periods on a bicycle saddle, particularly narrow racing style saddles. Failing that, any history of back problems, or diabetes, both of which can cause numbness?

Transward

[~Tiamat~ (imported)]

Given propecia knocks out the conversion route from T to DHT, and that DHT is the active hormone for most of the effects of T and not T itself besides basically just skeletal muscle, have you asked about any of the other routes of getting DHT in your system? I think they do a cream or gel, or DHT derivative esters? Or even just getting your DHT levels checked, although of course a lot of it would be converted in tissue anyway so it might not be an accurate measure of the damage. Sorry if I'm stating the obvious but maybe the problem with "processing" T is just the thing propecia was designed to do in the first place?

[artisticlicense (imported)]

Thanks for the advice. Its get to know that someone with severe nerve damage can overcome it. I have been on the pregnalone for about 2 weeks and have noticed my sleep seems to have improved. Nothing has improved with penile sensation, but I am going for a message this weekend. I am trying to reconnect my brain-penis pathway per your recommendation. I will keep you posted - thanks for offering your advice.

Glad your sleep has improved. That's something at least. I hope you stick with it a while.

While a professional massage can be good for 're-setting' your clock for the week; self-massage to the penis and groin was recommended. I don't know of any professional who will do that .

These massages should be a daily activity, for prolonged time-span - 30 minutes or so.

This is not deep tissue massage. Deep tissue massaging can hurt nerves.

It should be light; like feather-touch. Teasing yourself. Rubbing the surface - like some masturbation techniques.

Remember what tickling did to you as a kid? Just like that, it took very little touch to send you over the edge when you 'played' with your penis.

These are the thoughts behind those recommendations. You are trying to 'force' your brain to reconnect, and 'reinvent' the feelings in your penis.

Wish you well. Keep us informed.

[jorbie77 (imported)]

Regarding the penile numbness, are you by any chance an avid bicyclist? Numbness caused by compression of the penile nerve is a well known side effect of long periods on a bicycle saddle, particularly narrow racing style saddles. Failing that, any history of back problems, or diabetes, both of which can cause numbness?

Transward

No....I am not a bicyclist, and have no back problems or diabetes. I just had the misfortune of taking Propecia - and the penile numbness is one of the side effects.

[jorbie77 (imported)]

Given propecia knocks out the conversion route from T to DHT, and that DHT is the active hormone for most of the effects of T and not T itself besides basically just skeletal muscle, have you asked about any of the other routes of getting DHT in your system? I think they do a cream or gel, or DHT derivative esters? Or even just getting your DHT levels checked, although of course a lot of it would be converted in tissue anyway so it might not be an accurate measure of the damage. Sorry if I'm stating the obvious but maybe the problem with "processing" T is just the thing propecia was designed to do in the first place?

I agree with the science you explained - but I haven't taken Propecia in over two years and am still suffering with penile numbness. I don't think Propecia was meant to shut down DHT production permanently.

[~Tiamat~ (imported)]

I agree with the science you explained - but I haven't taken Propecia in over two years and am still suffering with penile numbness. I don't think Propecia was meant to shut down DHT production permanently.

No of course - and I really wish it was because I'd be set

Just wanted to suggest it because it seemed like a good starting point and nobody seems to have considered it? I know propecia seriously damages male foetuses (foetii?) too so if it really does knock out the conversion permanently in some cases then replacing THAT might be a plan, rather than putting T in just to have it not convert. If you're still worried about your hair there are a ton of topicals you can use! And if it is just your penis which is the problem you could ask your doc about topical DHT gels or creams - I think some FTMs use one or another but I forget which it is!

[considering (imported)]

As to being a number to your doctor, probably correct. I have no idea how large my general physicians case load is but enormous. Oddly some of the best advice vis a vis patients and the medical field came from Fran Drescher. I believe she had some form of Uterine Cancer and beat it. What she said is, "You learn to be your own advocate." Nothing could be truer. Do not allow yourself to be dismissed, with the enormous volume of information on practically anything available on line, you can and should make yourself an informed patient. Submit your doctors to a Google search, one never knows what's there. Here's a trick I've learned to make myself memorable without doing something outlandish: I ask each doctor how much he's charging for the services he's rendering. How much for the X-ray he's ordered. What will the cost of the medicine be he wants me to take. Realistically, some of these they cannot answer but even if he's part of a large group practice not to know what his basic fee is should make him think. Also, these are legitimate questions that a medical professional should be prepared to answer or at least refer you to someone there who will know.

So let's hear it for Fran Dresher and take her advice, Be Your Own Medical Advocate.

[Observation (imported)]

this seems like it may be a very dead post but still non the less I will say simply this. if you are still experianceing the simptoms you have mentioned and have yet to find any decent treatment for them then castration may be the way to go. my reason for this is that the fact is fighting something that has little chance of being won can be quite painful. while that may not be the truth in all respects I believe in this one it may be. if you have been trying various things or the symptoms you mentioned have now gone away then obviously holding off on castration may be a valid answer. anywho yeah goodluck

[dickbulova (imported)]

For six years, I participated in a NCS/NIH sponsored Prostate Cancer Prevention Trial. At the trial's conclusion (~2004) ,I was informed that i had indeed been taking propecia and not a placebo. shortly after starting the trial, I began to notice the onset of sexual problems. Basically, I had a harder time getting it up, and vaginal orgasm became almost out of the question. Fortunately, I had an understanding partner, and after she had her orgasm, she kindly masturbated me. For years following, manual was the only way I could get off, even oral didn't work. Today, even masturbation no longer works, I'm unable to achieve even a small erection much less an orgasm. Two years ago, I caught a TV "Bad Drug" ad which said that some users of finasteride/proscar/propecia were encountering permanent and irreversible impotence. You can Google that. Now I recognize that correlation does not always mean causation, but it looks very suspicious. Lawyers, looking just for the low-hanging fruit, refuse to take my case as I had to sign all sorts of waivers at the start, unlike someone who was just prescribed it for benign prostate enlargement. Today, I feel as if I'd like to have an orchiectomy, since the boys no longer do their job and I'm completely impotent. So finasteride is one way of attaining chemical castration, but the great majority of those on the trial apparently resumed normal libido. So I wouldn't recommend this approach. There are other, more certain and effective means, such as taking an anti-androgen like Androcur or Siterone.

[paring (imported)]

Few months ago a young man posted a message here, saying that he became permanently impotent after using Propecia (finasteride 1%) for (I believe) 6 months. My own experience was with Saw Palmetto, a natural product that acts just like finasteride, I also became permanently impotent too. I'm now on TRT since 2004. All chem castration medications are said to be reversible but all physicians know that, it is not, after a long period of time. I can understand that when these medications are prescribe for BPH or prostate cancer, perhaps it's better for the patient not to be aware of the side effects. Physicians should warn their patients when Propecia is prescribe to stop hair lost, this is not a life threatening situation, so theirs patient should have to choose between saving theirs hair or theirs sex drives. There is no time frame to make sure those drug to be reversible or not, I guess it all depends of each individuals, theirs capacity to produce testosterone, theirs T level to start with, theirs ages. When you stop your T production with the help of anti androgen, it's just a matter of time to make it permanent. In our situations there is only Testosterone Replacement Therapy (TRT) that could help.

[nvrgag44 (imported)]

Few months ago a young man posted a message here, saying that he became permanently impotent after using Propecia (finasteride 1%) for (I believe) 6 months. My own experience was with Saw Palmetto, a natural product that acts just like finasteride, I also became permanently impotent too. I'm now on TRT since 2004. All chem castration medications are said to be reversible but all physicians know that, it is not, after a long period of time. I can understand that when these medications are prescribe for BPH or prostate cancer, perhaps it's better for the patient not to be aware of the side effects. Physicians should warn their patients when Propecia is prescribe to stop hair lost, this is not a life threatening situation, so theirs patient should have to choose between saving theirs hair or theirs sex drives. There is no time frame to make sure those drug to be reversible or not, I guess it all depends of each individuals, theirs capacity to produce testosterone, theirs T level to start with, theirs ages. When you stop your T production with the help of anti androgen, it's just a matter of time to make it permanent. In our situations there is only Testosterone Replacement Therapy (TRT) that could help.

I couldn't disagree more. A patient should always have any and all information about any medication and/or treatment made available to them. There was so much I wasn't told about my prostate cancer treatment, especially being prescribed that poison, Lupron, that it still angers me every time I think about it. I've posted frequently about it in the past so there's no need to repeat it. The treatment cured the cancer but I was unaware of so much that went on. And I was clueless about side effects that didn't appear for years after and shocked no one but me. I've learned my lesson and now ask lots of questions about side effects.