Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.
Where are you from (country)?
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?)
What is your current age, height, weight? 27, 6’,
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride, which resulted in my crash, but sertraline on and off (3 or 4 times) for several years during college.
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
What condition was being treated with the drug?
Male pattern baldness
For how long did you take the drug (weeks/months/years)?
Date when you started the drug?
Date when you quit the drug?
Age when you quit?
How did you quit (cold turkey or taper off)?
How long into your usage did you notice the onset of side effects?
What side effects did you experience that have yet to resolve since discontinuation?
Testicular pain, prostate pain, pins and needles across body, limbs falling asleep quickly, muscle twitching, bloating, frequent urination, pain/numbness/coldness in penis, perineum discomfort. (I already had most of the mental sides beforehand, so I don’t feel confident including them here for that reason).
Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X] Reduced Ejaculate (improved)
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] 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
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] Testicular Pain (more or less resolved)
[?] Testicular Shrinkage / Loss of Fullness (difficult to say, but maybe).
[X] Genital numbness / sensitivity decrease (sometimes better)
[?] Weight Gain (have been trying to gain weight back after a bout of anorexia before fin, so confounding variable here)
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
[X] Prostate pain (more or less resolved)
[X] Persistent Fatigue / Exhaustion (worse)
[X] Stomach Pains / Digestion Problems (worse)
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[X] Frequent urination (ongoing)
[ ] Lowered body temperature
[X] Other (please explain)
Muscle twitching, and the symptom which sent me to the ER: a near full-body pins and needles like sensation.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
A few days of zinc and multivitamins after my crash, but I stopped after reading the forums and learning that this should generally be avoided.
If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
Didn’t test beforehand.
Anything not listed in the above questions you’d like to share about your experience?
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
As trite as is it to write this, in the sense of becoming yet another statistic, this is nonetheless my one and only concrete life, and since I can’t go back and fix mine, I can at least share a tale of caution to others. Please. Your hair is nothing compared to this. I look at men at Norwood 7s and envy them from the bottom of my heart now. Losing hair is incomparably more trivial than losing your health.
So, like many reading this, I noticed my hair thinning with time, and, wanting to hold onto it, I thought I would give finasteride a go, despite five solid years of knowing about how dangerous it was. I suppose that separates me from some here who didn’t know about this risks, as I opted into the game of russian roulette willingly. In my defense, I read the studies showing a strong link to a nocebo effect and side effect presentation, reviewed many sources saying that fin was generally extremely well tolerated, and took comfort in a possible genetic protective factor in that my brother has been taking fin for a year now with no issues. Moreover, as someone with anxiety and paranoid tendencies, I noticed how my mind drastically affects how I perceived my gentials and health, so I thought if anything happened, it would most likely all be in my head, and that if I did get sides, I would just stop fin then and there. Most arguments seemed to point to a worst case senario where, if I did get sides, they would just subside within two weeks. Eventually, there was a moment where my panic over my hair eclipsed the panic I felt over finasteride, and after weighing the pros and cons in March one last time, I decided to try a single half dosage of fin, confident to take matters into my own hands and stop living in fear of a medication that millions of men swear by.
To date, this has been the biggest self-directed mistake of my life, of which there have been many, and every day I wake up with an immediate reminder from my body that I messed up. Only time will tell where I end up now.
What happened? Well, within three hours of taking .5mg of finasteride, I experienced inexplicable testicular pain, and a vague, uncomfortable feeling in my lower abdomen. Immediately I thought it had to be the fin and stopped then and there. I read up on testicular pain, and after scouring the internet, I took solace in reading that the pain should go away in two weeks, or a few, tops. It’s now been seven weeks to the day. It didn’t. It hasn’t.
Instead, alongside the testicular pain, there was a gradual ramping up of new symptoms as the days progressed: I thought my glans felt more rubbery, the pain in my testicles spread to my perineum, which started to feel swollen, then there was a burning like feeling where my hamstrings connect to my glutes, then a feeling like I was wearing underwear made out of itchy wool (I wasn’t), my penis began to feel off, and my hands were falling asleep quicker than usual. Maybe due to desperation, I told myself that it’s maybe possible that somehow, through who knows what mechanism, this was all just nocebo and a terrible bout of paranoia.
That last shred of hope was shattered when, two weeks after taking and stopping fin, my entire body felt like it was burning, like pins and needles were being stabbed into my penis, pelvis, thighs, arms, hands, back, feet, and face, alongside this intense, absolutely beyond-urgent need to urinate every 20 minutes, like I had a full bladder, when only drops were coming out. I’ve had panic attacks before, and anxiety that kept me bed bound in the past. This was something different – something much worse. That same night, the doctor in the ER said that my blood and urine looked okay, aside from my bilirubin being a bit elevated. When I told him about fin, he said it couldn’t be that, so I countered with, “well, could it be PFS?” He then opened up his phone and in real time read an article and went “… it could be. Huh. Never know about that. Best of luck,” and that was that.
Again, it has now been seven weeks. I moved back in with my mom, will soon lose my job do to the intense disability I am now facing, and have been shattered in ways I never could have imagined before this. I have been suicidal before, and once even set out to do it with fairly serious intentions (a plan, a note, supplies, etc.), but this is different. No matter how much my mind shut down before, I always had my body, and I always knew that if I somehow hit rock bottom, I could physically pick myself up. Now, my body and mind have both been shattered by this medication, and for the first time in my life, I feel truly and completely broken, inside and out.
For the most part, most symptoms have died down in the sense that they don’t all hit at once, but they remain present, just in flux. The fully body pins and needles will dissappear for days or a week at a time. It’s been very quite for maybe a week now, and I want to say it’s over. The last several times I did that, however, it came back, and the despair I felt then has diminished my hopes and the scope with which I can conceptualize the future. I now only think in terms of hours and days; weeks, months, and years have lost their significance to me, as I can no longer reasonably predict that I will be up to the task of living in them without debilitating pain and discomfort. So for now, that form of pain is gone.
On a good day, only my testicles will feel dull pain, or I’ll have an odd amount of pressure in my lower abdomen, which I can now sometimes reinterpret as bloating instead of a need to urinate (until the mindtrick fails, which it does, and I’m off to find the nearest restroom). One thing which has not abated in any way, however, is that rubbery feeling in my glans that I thought was present in the beginning, which I know know is just near total numbness – it is always present when I check for it.
So far, I don’t have any erectile issues. The most annoying symptom is my frequent need to urinate, and honestly, I don’t really care at all about the numbness in my glans in comparison. I would trade full numbness in that area for the rest of my life if only I could stop feeling the need to pee in this manner ever again. It wakes me up every few hours and makes it so incredibly difficult to walk for long distances. Forget about going out to dance and listen to music. Tried it, had to leaves after 30 mins due to pain.
I’ve been on this forum nearly every day since day zero, and it’s a double edged sword. I find great solace here, but also indescribable despair at the prospect of permanent damage having taken place in my body, or persistent damage that can takes years to quiet down. I’m now familiar with the advice around here for where I’m at timeline wise: there is no cure (yet), there is no consistent treatment that will help (what works for some can ruin others), there are only guidelines and time. I don’t stay up late, I don’t drink, I workout since, so far, I don’t have muscle wasting, I (reluctantly) stay hydrated (sigh), I’m not on supplements, and I will never touch a 5ar drug ever again.
I know that some improve, some stay the same, and some get worse. It hasn’t been the full three months yet, granted, but my imagination is faltering, and the marginal holistic improvement im feeling 7 weeks now, if it’s even close to being roughly linear, probably puts me on the order of many, many more months of this torment, at least. It will be a miracle if I wake up being at 100% again before the three month mark, so I’m going to call it now at seven weeks and say that this is PFS.
To anyone reading this who is considering fin, I would drop to my hands and knees to beg you not too. I used to think the choice was “bald or not bald”. Now I know if you take fin its actually “bald or potentially disabled (and also bald when the medication cycles out of your body yet the sices remain).” This is not nocebo, this is a real syndrome, and if you get it, you will wish you were just bald.
To the PFS community, my eyes have been opened to this hell and I cannot turn back. I pray to get as close to 100% as I can, and if that happens in the next several months, I will not abandon you all. I will donate at least a thousand dollars of my savings to the cause, with proof. I promise you all. I’ll be back to update at the three month mark after the next 5 weeks, and then every month after for some time.
To anyone who has gone through this, for my own personal relief, could anyone, anyone at all, tell me if their urination issues improved? I know it hasn’t for many, but even just one person telling me it can get better will give me strength to carry on. Thank you in advance if so.