The abstract from Dr Irwigs article says:
“The mean duration of finasteride use was 28 months and the mean duration of persistent sexual side effects was 40 months from the time of finasteride cessation to the interview date.”
I.e. it just says that at the time of the interview the persons have in average had persistent side effects for 40 months since discontinuing Propecia usage. All (or most) of them still likely have persistent side effects.
Well i know it has been a while since i have posted anything partly because i had been seeing a psychologist with no progress on my problem. The psychologist was helpful with the deppression i had concerning the problem i feel alot better about the situation.
Anyway i ended up seeing a neurologist kind of the last of the doctors i have not seen. He tested my motor nerves and they checked out all right but when we did sensory nerves they were damaged around the penis, He used a safety pen to test the sensory nerves and also used a heat test to see if i could feel heat, and i had difficulty on my gentials feeling the heat on one side of the penis i felt the sensation of cold instead of warm. He diagnosed me with pudendal neuralgia and the first treatment is taking 300mg of gabapentin three times a day and i cant lift anything over 20lbs for months. This will give the nerves a chance to heal, if that doesnt work than there are injections or surgery that can be done he says it is definately treatable and is the source to my orgasm problems. I also have prostatitis which i told every doctor to check me for that and they wouldnt. The neurologist said it was common for doctors not to check the prostate fluid and just end up checking the prostate.
this is alot of work but this is the first doctor who has found a physical problem with me and is willing to treat me
wish me luck.
So your main issue is weak orgasms, I assume due to lack of sensitivity? do you feel any pleasure at all?
Also, how are you going to approach the prostatis issue?
i have antibotics for my prostatits, for my orgasms i feel the sensation of peeing but sensation of orgasm, and my penis always felt a little numb. I dont know about you guys but i have a hard time remebering what it was like before this shit happened. i have been telling doctors for years that it feels like i am having a orgasm but it doesnt go anywhere like my brain and penis or disconnected. I am not trying to get my hopes up because i have had several let downs. Its been 4.5 years and i mainly want to know what is wrong, most people would not be excited about having a nerological problem but i just want to know that there is a problem and that i am not crazy.
Also the doctor was saying that this problem probally does not relate to propecia and that it is brought on my heavy lifting playing sports in my youth and genetics. When i got this problem i was working 70 to 80 hour weeks all manual labor.
I must say i was pretty skeptical when the doctor first told me of these problems, but he is rated high and he checked out ok online i am just always skeptical with doctors.
wish me luck, and i may not be cured but i hope i at least get an answer.
This is pretty simple - Finasteride damages hormonal pathways, damages neurotransmitters. Sports, exercise, manuel labor, do not. Likely the only genetic predisposition you had was one for adverse reaction to treatment with 5AR blocking medications. What your saying seems a bit off the wall.
i had a friend who damaged her nerves from playing violin, crazy things happen. Although i still think propecia still had something to do with it, the varried side effects are proof for that. It seems like theres not a single thing propecia wont effect.
I can tell you with out a doubt that this is not in are heads i have seen a psychologist for a year now this problem is physical.
Hi voice,
besides many other problems I also have very weak orgasms. I hardly feel my orgasms. One of the worst side effects is the genital numbness. I went to a urologist who pinched a needle into my glans in order to check for sensitivity. It turned out that I don’t feel anything (this is a confirmation that is physical)! However, the doc didn’t have a cure.
You said that you have been to a neurologist. How exactly has he found out that you have pudendal neuralgia? (I also went to a neurologist but he was incompetent) Have you already started taking gabapentin 300mg? I have bought it two weeks ago. However, the leaflet says that side effects may include ED, breast enlargement etc. so I am afraid of taking it. Nevertheless, I think that something with my nerves is not all right and that I should take gabapentin. Is there any other medication for pudendal neuralgia?
Thanks for any info and news.
thats weird that your pamplet said that mine has no sexual side effects written on it.
ya it sounds like your in the same boat as me except for your numbness sounds a lot worse than mine. As for his diagnosis on pudendal neuralgia he did a serious of test, first was using a pin and poking me on nerve on my leg and then a nerve on my genitals witch i felt a stronger poke on the nerve on my genitals. He then checked my my lower back and said my skin was quite pale there and my pores were larger than normal which meant some nerve damage (sorry for the way i am describing this there was a reason to everything he did, i am just explaning it badly), he then did a test using heat to see if i could feel heat, on side of my penis i felt a cold sensation the other side i could not feel it. This doctor checked out from what i looked up online there were a couple bad reviews on him, but most were positive. I feel like you could look up almost anything online and someone will give it a bad review saying it ruined there life.
Maybe you would like to speak to this doctor are you could wait and see if he can cure me first. His practice is in minnesota i dont know if you live close, but you should give him a try.
His name is stanley j. antolak and he is actually a urological surgeon who specializes in pelvic pain.
Hi voice,
thanks for the details. Unfortunately, I live in Germany and comming to Minesota is an effort. I have to find one in Germany or in Europe.
It would be great if you could keep me up to date of your treatment. What dose of gabapentin are you taking exactly again. 300mg three times a day. I have heared that you can take dose up to 3600mg a day. However, I am afraid of only taking 300mg due to the leaflet information (especially ED and gynocomastia - it’s a leflet written in German)
Good luck on your journey.
300 mg of gabapentin won’t even touch you.
i hope it wont touch me i finally found the sexual side effects for gabapentin i was in there rare side effects section. It was orgasm and ejuculation problems, but no ED. It said it was 1 out of 1000 might experience these side effects.
What?
I was wondering if you guys had any theories on my condition, i have been diagnosed with pudendal neuralgia so basically a problem with my nerves thats what is effecting my orgasms the doctor says it is caused by to much exercise in my youth and from climbing cell phone towers about 80 hours a week for 3 years, and not caused by propecia. I don’t by that part it is to much of a coincidence. Propecia is involved i know it, i was wondering if you guys had any idea of how propecia effected my pudendal nerve.
Read this paper, it should provide some answers:
Also, we know Finasteride can damage the prostate by involuting and atrophying its tissues. The prostate and associated nerve bundles help nourish the penis – when you reduce vascularity, you get reduced bloodflow to those tissues and potentially, nerve damage:
viewtopic.php?f=26&t=1015
viewtopic.php?f=26&t=2209
viewtopic.php?f=26&t=2081
viewtopic.php?f=26&t=1007
viewtopic.php?f=26&t=993
Your doctor’s explanation is a joke.
I recommend you provide printouts of the above, plus Dr. Irwig’s and Traish’s recent papers, and that should set him straight:
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02255.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.02157.x/abstract
Better yet, set this doctor straight and then get a different doctor to actually treat you.
i did’nt mean that he would’nt listen to me about propecia. He probably did not think it was the cause because like most doctors they have never heard of the persistent side effects. He listened to a lot of my concerns and actually wants to treat me, and said he even came out of retirement because of how bad the medical field is. He said to many doctors diagnose something as being in your head when really the doctors just have know idea.
and i dont know about you guys but it is rare to find a doctor like that, that thinks it is a physical problem
Sorry it has been a while since i have written partly because this site is great, but can be depressing. To hear of people killing themselves over this stupid drug is hard to hear sometimes. I have been seeing doctor Antolak he has been giving me injections of a numbing agent and methylprednisolone a steroid in hopes to calm the inflamed nerves, but i have had no change. He says 70% percent respond to the injections and the other 30% percent respond to surgery. I don’t trust him a 100% because i don’t trust any doctor, but he did impress me the other day he looked at my lower back and said that the goose bumps on my back move towards the right which in all his patients that have this symptom they all have weak erections. I did not tell him i had weak erections but he knew just by looking at my back so maybe there is something to this pudendal nerve problem. I must say that the weirdest part of this problem is that i have never felt anything different. All the different hormone treatments i had i did not feel anything negative or positive. Same with these injections nothing negative or positive. The surgery always has risks and it looks like that is my last resort. I mean lets face it by the time they come out with a cure for this i am gonna be 80 years old, and i do have to say with all the expeirmental things i have tried i have not had any side effects.
I was wondering if anybody could describe there genital numbness. Because my penis is not numb i would say it is less sensitive i also have this soft tissue around my penis so when it gets erect it still has the soft tissue. I am able to have intercourse with my erections but they are definately weaker, and the head of penis is where i am laking the most sensitivity. I know propecia caused this problem but i do remember back to when i was 17 years old and i was getting my first blow job, and i remember thinking that it should feel better than this, I remember having a lack of sensation even before i took the drug, but i didn’t care because my orgasms were kick-ass.
I am not sure how sensitive the penis is supposed be i guess, should it be the most sensitive area?
Not sure if i filled this out yet.
Where are you from (country)? U.S.A.
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? 26, 6’3, 205lbs
Do you excercise regularly? If so, what type of excercise? No, i have a weight and exercise restriction.
What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? healthy most the time
Why did you take Finasteride (hair loss, BPH, other)? supposed hair loss, but i am not going bald now
For how long did you take Finasteride (weeks/months/years)? 2.5 months
How old were you, and WHEN (date) did you start Finasteride? 21 years old
How old were you when you quit, and WHEN (date) did you quit? 21 years old, 11/16/06 exact day
How did you quit (cold turkey or taper off)? cold turkey
What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? propecia
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1 mg/day
How long into your use of Finasteride did you notice the onset of side effects? 2 months and one week
What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[X ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[X ] Watery Ejaculate
[X ] Reduced Ejaculate
[X ] Inability to Ejaculate / lower sensation of Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy
Physical
[ ] 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
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] 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? Numerous hormone treatments, organic treatments, and nerve injections for pudendal neuralgia.
If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)? My blood test are posted nothing out of the ordinary on my hormones
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
Its posted in the member story section
How exactly did he diagnose you for pudental nerve issues? Has he mentioned anything about Gabapentin, alpha1 blockers, or Trigger Point Therapy as possible treatments?
Have a look through the below thread…it is discussion on Pelvic Floor Tension, CPPS, and PNE (although the latter we have not touched on too much yet).
i am currently on gabapentin right now. When he he ran test on me he did a electrical stimulation test to test my motor nerves and they all checked out o.k. He then used a machine that tested how i felt hot and cold around the genital area, i did not do so well on this test on one side of the head of my penis i could barely feel it and the other side of the head of penis i felt the hot sensation as a cold sensation. He then took out a safety pin and did pin pricks on my thigh and then on my penis to see which i felt more intensely and i did not do so well on that test either, he also said the goose bumps on my back are a common sign with all his pudental nerve patients. All the signs together pointed to pudental nerve damage, he has since givin me two sets of injections a month a part. The injections are a numbing agent and a steroid to give relief and help repair the damage done, i also have a weight restriction of 20lbs as to not damage the nerve. I have had no success so far with the injections, surgery is the next step required. It is hard to trust doctors, but he does seem to be trustworthy and he actually listened to me for about 4 hours which is pretty crazy for a doctor, he came out of retirement because he hated how doctors were misdiagnosing people. He used to work at the mayo, and i can’t blame him for leaving. I went to the mayo and they checked out my prostate and said it was fine, when i saw doctor antolak he said i had a prostate infection, he found this by actually checkin my prostate fluid, he even let me look in the microscope to see the infection myself.
I am nervous about surgery, my hormone profile is posted online and it looks great i have no real obstructions, so it has to be nerve related, it sure as shit not psychological.
It’s interesting that you lack sensitivity on the head of the penis. I have the opposite - feeling on the head, but almost completely numb on the shaft. It’s strange that there doesn’t seem to be a common pattern in how this affects people. More confusing still is the fact that my doctor told me that one large nerve is responsible for penile sensation, which should indicate that the entire penis should be numb if there is nerve damage.
Or could it be possible that the nerve is partially damaged? Or is it about the tissue in the areas the nerve ends?