Hello there, hope I’m posting this right as a new member, would appreciate any helpful advice you can send my way, thanks.
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Where are you from (country)? Britain (UK)
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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?) Not sure think it was ‘propecia help’
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What is your current age, height, weight? 38, 5,10’, 13stone
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Do you excercise regularly? If so, what type of excercise? My work is physcially active, plus I run quite often. I’m in good shape.
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What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Allbran for breakfast for iron, pasta, meat, cheese, eggs, spinach, dark green veg.
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Why did you take Finasteride (hair loss, BPH, other)? For hairloss
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For how long did you take Finasteride (weeks/months/years)? About 4 years on and off. Each time the symptoms got bad I’d stop for a while, mostly irritable bladder.
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How old were you, and WHEN (date) did you start Finasteride? Around 28 years old.
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How old were you when you quit, and WHEN (date) did you quit? 32 in the spring of 2009.
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How did you quit (cold turkey or taper off)? Cold turkey.
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What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? PROPECIA 1mg
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What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1Mg per day
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How long into your use of Finasteride did you notice the onset of side effects? About 2 weeks. When I combined propecia with regaine I had constant bladder problems almost immediately, so stopped taking regaine after about a week.
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What side effects did you experience while on the drug that have yet to resolve since discontinuation? Irritable bladder when sleeping at night. Generally seems fine in the day. I also get frequent uncomfortable nocturnal erections, that coincide with my need to go to pass urine. Once I have however small the amount the erection goes down.
Put an X beside all that apply:
Sexual
[x] Loss of Libido / Sex Drive - (only when taking propecia)
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / 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
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] 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
[X] Frequent urination (This is my nightmare)
[ ] Lowered body temperature
[x] Other (please explain)
I have many nocturnal erections that are extremely uncomfortable - not remotely exciting I can assure you. Coupled with this is an overwhelming need to pass urine, which at times is very small amounts but it seems to trigger blood flow away from the penis and back to limp mode. If I sleep on my sides this triggers the condition almost immediately i.e. irritable bladder/erection. I take sleeping pills but they won’t stop me being woken up by this condition. I tend to sleep 4 hours sometimes five if lucky, before this problem really takes hold. I sometimes get erections/irritable bladder every 10 mins, it’s impossible to sleep and I have to get up countless times.
- What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Drugs/treatment taken:
Tolterodine, Solifenacin – did help a bit for a while but then after a few months began to irritate bladder.
Imipramine – slows down urine production, plus has been used as a mild anit-depressant. It spaced me out, so quickly discontinued.
Full blood count – came back normal. It’s called a ‘Full blood count’ not sure how extensive that is. I will post them.
Urodynamic Study (cystometrogram) – came back normal although I would prefer a similar test throughout the night. My condition seems to start after the first 3-4 hours of sleep.
Ultrasound – came back normal.
Cystoscopy (bladder expanded with fluid under general anaesthetic) Helped for a few weeks.
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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)? I only have post- Finasteride test - please see attached file.
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Anything not listed in the above questions you’d like to share about your experience with Finasteride? While taking I experienced reduced sex drive and numbness, which seemed to return to normal after discontinuing.
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Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I have suffered from persistent Propecia side-effects, while takng the drugs, that stopped initially when I discontinued use. However, denial and concern over my hairloss ensured I would end up taking it again after a few months. Things would usually be ok for a month or two, until side-effects returned. I did this on and off for the last few years until one day the symtoms stayed indefinitely. Over the first couple of years I was prescribed Tolterodine and Solifenacin by my doctor, which proved helpful in as much as alleviating some of the systoms when lying on my back. From what I can remember, innitially the problem was more down to a overactive bladder at night. The erections were less frequent at this time.
After a couple of years of constant discomfort and interrupted sleep I had a Cystoscopy, (bladder expanded with fluid under general anaesthetic) which proved helpful only for a few weeks.
I have since seen urologists and endocrinologists who haven’t uncovered anything out of the ordinary, plus I have had a prostrate check and sexual health check – all showed up ok.
I suffer from an irritable bladder at night when lying down, I am fine in the day. Together with this I have many nocturnal erections that are extremely uncomfortable - not remotely exciting I might add. Coupled with this is an overwhelming need to pass urine, which at times is very small amounts but seems to trigger the blood flow moving away from the penis. If I sleep on my sides this triggers the condition almost immediately. I am reliant on sleeping pills to sleep but they will not stop me being woken up by this condition. I tend to sleep 4 hours before this problem really takes hold. Sometimes I can be getting erections every 10-20 mins, which makes it impossible to sleep due to having to get up and pass urine.
Because of this condition I can no longer hold down a normal job between 9-6pm. One bad night after the other turns me into a zombie in the workplace, and the constant pressure to appear normal and force myself to be awake is a huge stress to carry. Basically, my energy levels are greatly affected, I miss out on so many things, due to exhaustion. Obviously, with this comes the mental battle which has been at times disturbing and deeply depressing. I have now learnt to be alert to my thought patterns around this and try and stay clam and determined to find a breakthrough. I have had a cystometrogram and my bladder had a machine take readings across my stomach, which I think was ultrasound.I saw an Endocrinologist too who did a testosterone and kidney check that came out fine, I was prescribed Imipramine 10mg but had bad side-effects and the drug didn’t help. Here’s what they said:
From the endocrine point of view, there are no potential treatment options. Professor _____ suggests exploring other urological options. Other urological options (such as botox which has been used in some cases for overactive bladder) are specialist urological treatments and their potential for any benefit, indications, contraindications and risks need to be considered and decided upon by a Urologist.
With the Urologist he said the symptoms make no sense. Doctors tend to say Propecia was used to treat men with large prostrates and overactive bladders, in others used to treat irritable bladders. However, we all know a common side-effect when taking is an increased need to urinate. The erection problem again is the opposite of erectile disfunction so often associated with propecia. As for why the bladder and blood flow to penis are more responsive when lying on my side no one can explain. I’m guessing it’s some irritation or irregularity in the bladder.
It’s a life-changing condition that nobody in the medical profession has been able to diagnose or make and sense out of. Someone suggests it might be psychological, which clearly it’s not. I appreciate stress and esecially diet might contribute to things, but I’ve never been more self-assured despite this nightmare condition. Without this condition I would be embracing a full and active life, which makes it all the more frustrating. If anyone can shed any light on this and offer advice I would be eternally grateful.
