Loops Member Story

[loops]

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)?
USA

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

What is your current age, height, weight?
**28, 5’10", 164lbs **

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Oral Finasteride, 1mg

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg daily, missed doses

What condition was being treated with the drug?
hair loss, smh

For how long did you take the drug (weeks/months/years)?
about 2 weeks

How old were you, and WHEN (date) did you start the drug?
28

How old were you when you quit, and WHEN (date) did you quit?
28

How did you quit (cold turkey or taper off)?
cold turkey after missing a few doses, so I guess inadvertently tapered

How long into your usage did you notice the onset of side effects?
about two weeks, noticed symptoms after a few missed doses

What side effects did you experience that have yet to resolve since discontinuation?
pelvic floor, perennial, flank pain. Then AFTER discontinuation: loss of nocturnal/morning erections, difficulty getting an erection, weak pelvic floor muscles, lowered libido

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.

Sexual
[x ] Loss of Libido / Sex Drive
[x ] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x] Penis curvature / rotation on axis
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[ ] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes

Misc
[x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] 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?
Initially I used Advil to reduce pain. Primary Doc put me on 10 days of antibiotics (Bactrim DS 1 tablet twice a day times 10 days). Kind of helped actually. Since then things have worsened, starting Cialis 5mg daily soon.

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)?
No pre-drug blood tests so idk. Everything in normal range in post-drug tests. Will post in blood tests section.

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.

Took Finasteride Sept 6-17ish (missed some days here and there, but I think about 10 days total). First noticed right-sided groin/scrotal pain around 9/21 (had already missed a couple doses so I just never went back on). Saw testicular pain was mentioned as a side effect so discontinued.

Dull ache, came on slowly not suddenly. No sharp pains or swelling. Improved over the next week. There was mild right testicular tenderness accompanied by pelvic pain (i.e. perennial pain, pain behind and in inner thighs). Had an ultrasound. Only thing that came up was mild bilateral varicocele which my urologist said is not concerning. Have no idea if it was there previously.

Pain has been intermittent from Oct 1 to now. Though it has shifted. Where it had been mainly scrotal/flank, is now almost exclusively perennial/penile pain. I’ve had weeks where the pain is barely noticeable (0-2) and weeks where the pain flares up badly (8-9). Stress/anxiety which contributes to tension plays some role here.

Initially, erection quality was not impacted. Morning/nocturnal erections and daily erections were normal for a while, like for a month. However, erection quality has declined, time/stimulation required to achieve an erection has lengthened, and refractory period ebbs and flows, and erections are lost more easily. Anxiety/stress are factors, as I feel I am frequently “testing” myself and analyzing symptoms.

Like 2.5 months post cessation everything was steadily improving. Morning erections were mostly normal, they went away for a bit and then came back for the first 2 weeks of December. Around Christmas I had a couple days where I felt like I could not get an erection at all and my libido took a sharp dive, I guess maybe this was my crash. I was able to achieve daily erections for the first 3 months post cessation, but for the last month there have been days with no erection at all which is obviously extremely abnormal for me.

When de-stressed I’m able to have sex, but it takes a lot of stimulation and my libido ebbs and flows a lot. Visual/thought libido has largely deteriorated. I have barely masturbated in the last 3 months. I used to 1-3 times a day and still have sex.

Morning erections since the new year (2022) have returned some but are way weaker than normal (ranging from ~30% usual hardness to ~90% but rarely 100% w/o stimulation). I noticed seriously low ejaculate volume and watery sperm the week I quit, but now seems to have stabilized tho occasionally less forceful and mildly lower volume. Penile sensitivity seems to have been only mildly impacted, but I’ve noticed less pleasurable orgasms the last week.

I’ve had the ‘hourglass’ affect when flaccid. Which I’d describe more as a narrowing of the base of the penis. Seems to correlate with the pain and stress, but not exclusively. Also, sometimes it seems like it is engorged and actually larger than normal when flaccid. I guess this is like hard flaccid, but I’m not really sure. Seems to correlate with days when I am able to have sex multiple times (on these days my penis feels a lot better).

Have noticed suspected vein changes to penis, as well as possible mild curvature but cannot 100% confirm if this was present to begin with, but it is consistent with other members’ stories. This, like others have mentioned, seems more like a blood flow issue than peyronies.

I’m starting pelvic floor PT per my urologists recommendation. Stretching improved things for a while, but idk if it’s helping anymore. Maybe slightly with the pain but not much with erections. Also helps with PE and orgasms I guess, but I haven’t experienced too much of that yet.

Also, I definitely relate to the not “feeling” erections like usual. Like they’re kinda hollow feeling and they don’t “throb” I guess like they used to.

I would say generally speaking, no cognitive issues per se. But definitely a lot of stress, anxiety, depression, fog due to the sexual symptoms. Like I’m just down about it all and feeling so stupid for the lack of research I did when I tried fin. I wasn’t even that stressed about my hair. I’m getting married next year and I thought “my hair’s getting kinda thin maybe I should try this Keeps stuff.” All I googled was “is Finasteride safe”, read two things that said yes. And barely read the info on Keeps. Suicide has crossed my mind, but I don’t think I could ever act on it for the sake of the people around me.

Idk if anyone has any advice. But I figured I’d just do this after months of lurking. Can’t believe this is where I’m at now. Donated to PFS Network. I hope this either resolves itself, or research moves quickly.

[M_C]

Hello @loops, and welcome to the forum! I’m really sorry all this is happening to you. These symptoms are bad enough, but the shock and confusion on top really makes it extra bad.

Thank you for donating to the research study, and keep us posted on how you’re doing!

[Exsexgod]

So I say hello from ideot to Ideot! My Urologist gave me the pills after I denied because of a sexual active gf and he said than better not just to try. Like you I only checked the leaflet if the proscar package online, like keeps and hims full of missleading information. No clear advice for long lasting ED or other lifelong effects. Made no checkup for finasteride side effects. And I took the pills for three months. I crashed and developed severe PFS.

But for you every thing still functions. You can calm down and wait for a full recovery of your symptoms. As more as you not distressed, as bigger the chance for natural healing by the time.

[loops]

I’m now about 7 months post-fin and I figured I’d update mostly for myself and the public record.

Things began for me at the end of Sept. 2021. December and January were my worst months so far. February saw some improvement and stabilization, and March was a solid improvement for me — tho obviously far from normal.

Current Symptoms:

Sexual:

• Moderate ED — I haven’t encountered a day where I couldn’t achieve an erection since about January. Daily cialis improves outcomes in this department, including spontaneous erections. Morning/nocturnal erections occur but are still vastly different from pre-fin, both in sensation and timing if that makes sense to anyone.

• Pelvic Floor — this is one of the changes I’ve been able to measure definitively. I went to a PFD physical therapist and he used biofeedback to measure the tension in my pelvic floor. It was off the charts. Idk what units the measurements were in, but normal resting was supposed to be about a 3 and I was a 20. Will be going back to monitor and try to treat with different stretching techniques and possibly medication (cialis helps, low dose Gabapentin is sometimes prescribed).

This might be my worst symptom, and some days the pain is unbearable. It has significantly impacted quality of life, including exercise, sleep, driving (anything where I’m sitting for long periods of time), and sex of course.

• Sensitivity — skin sensitivity down there is certainly reduced, as most patients report. But what’s more noticeable for me is the “feeling” of having an erection. That is still significantly reduced. On occasion (in one instance during a pretty bad hangover and for a few days after) this improves — I think for me correlates with erection strength but idrk.

• misc.: Scrotum less “full,” penile curvature (less pronounced from onset), hourglass when flaccid (occurring a lot less, cialis helps, for me this is pretty obviously correlated with my pelvic floor muscles - which are tight). Cold genitals periodically. Muted orgasms. Ejaculate force and volume fluctuate and are tied to pelvic floor. No more testicular pain, which was my first symptom. Libido is better.

Physical:

• dry skin — went from very oily to very not. This has not changed.

Side note re skin: I saw a user mention recently to be careful about looking for skin issues. I too thought I’d identified new wrinkles, but my partner showed me pictures with the same ones haha. So just be careful with looking for signs/symptoms.

• body hair — growing much much slower, and less

• head hair — growing slower, but shedding a lot less than pre fin.

• dark eye circles — still an obvious problem for me. Started a skincare routine but this is also sleep related for me as I’ve had days where I’m well rested and see significant improvement.

• weight loss — Not experiencing anymore weight loss. At peak, I lost over 10 lbs rapidly (about a week). I’m stable at 170 lbs now.

• muscle strength — has stabilized and I’m ready to try light exercise again (will report on how that goes).

• hand pads/callouses — as weird as it is, this is one that fluctuates for me. Had a couple weeks where holding the steering wheel hurt. Marked improvement on this lately. Thankfully as guitar is a stress outlet for me. Finger callouses are coming back the last couple weeks.

• Gum recession — my dentist recently noted some minor recession, with some minor bone loss. I can’t 100% say this is PFS related, I have a family history of such issues and haven’t been to the dentist in some time. I also used to frequently (pre-PFS) brush until I bled (yikes - I know). That said, too many patients have mentioned this to omit.

• vision — this is weird. Never had vision problems in my life. 20/20. At the onset of my symptoms I noticed some blurry vision, but seemed correlated with my insomnia. Last week I noticed blurriness in my left eye. I FREAKED out. Mostly because I’ve been taking daily cialis and read about NAION.

SIDE NOTE: those considering cialis/PED5 inhibitors — a simple way to check for a predisposing factor for NAION is to get an eye exam (optometrist or ophthalmologist) with imaging and check to see if you have what’s known as a “disc at risk.”

Anyway, it’s not NAION. Blood flow and optic nerve is perfectly healthy. I have astigmatism in both eyes and 15/20 vision in the left eye. Never, ever had problems with eyesight in the past. Perfect vision. So this is bizarre to say the least. Glasses have completely corrected blurriness, which further confirms it is not a vascular problem related to cialis. Imaging showed no vascular problems, nor a predisposing “disc at risk”, so I will return to cialis - EOD for now.

Other issues:

• sleep — It has improved tremendously since February where I was getting terrible, and typical PFS interrupted sleep with a lot of vivid dreaming. This has normalized a lot in March. Getting pretty good sleep, my usual sleep/wake patterns are stabilizing. Although I’m not nearly as rested after a night’s sleep, and I get far more easily fatigued.

• appetite — for a bit I wasn’t feeling hunger/satiety the same. That seems to have resolved mostly.

I think that’s pretty much everything. Depression is circumstantial for me, so I didn’t include that. Therapy has helped me shift my perspective. I’m immensely grateful I don’t deal with anhedonia or brain fog — and truly sympathetic to those who do.

There are still days that really really suck, but I’m learning to cope more. I’ve taken more time off work in the last 6 months than ever before. Fortunately the suicidal thoughts are gone. The emptiness I felt during my crash was surreal and terrifying.

Lastly, I’m extremely grateful to the PFS Network for their hard work. I’m regularly contributing to their efforts, and plan on approaching my personal network (friends/family/coworkers) for contributions as well. Also trying to volunteer where I can.

Research is the best and only path toward treatment and we should all continue rallying around these efforts.

Sorry for the long post, thanks to whoever reads.

[loops]

I can’t believe it has been over a year now since I took finasteride and began experiencing side effects. As some other people on here have also shared, time sometimes feels vastly different than it used to. And my life has changed dramatically.

Here is my 1 year post-fin update for myself and the public record:

Things aren’t wildly different from my update in April. Many things have now completely resolved for me, such as sleep, body & facial hair growth, and even hair loss (I’m shedding at my normal rate the last few months).

However, sexual symptoms and tinnitus remain present. Sexually, things improved from my crash in January to April and then basically plateaued. I’ve had fluctuations where things have improved significantly for up to several weeks.

Most recently, I had 3 weeks where I was able to stop taking cialis and things seemed to have turned a significant corner before reverting to baseline.

I continue to take cialis regularly, though not every day. Skipping some days seems to do me well.

My pelvic floor continues to be extremely tense at times, but the pain is less frequent and I’ve learned to control that more as time has passed.

I should also note that after initial acute weight loss during my crash (over 10 lbs in less than a month), I’ve gained 30 lbs in less than a year. I haven’t exercised as consistently as before PFS, and I’m obviously, inevitably getting older, but even so this is very abnormal for me.

Anyway, here’s a summary of my status.

Symptoms I Still Suffer From (ranked in order of my perceived impact on quality of life):

1. Moderate ED - with fewer spontaneous and morning erections than pre-fin.

2. Lower libido - this fluctuates as well and has never been as bad as peak crash. But generally I have a much lower sex drive than pre-fin.

3. Physical changes - while there might be fluctuations in things such as scrotum fullness, and flaccid appearance, generally there have been physical changes that have not yet reverted. I have been diagnosed with mild bilateral varicocele (immediately after cessation) but no further diagnoses (may pursue some additional testing such as doppler at a follow up in November).

4. Tinnitus - constant if I “tune in” but fluctuates in volume.

5. Ejaculate strength and volume fluctuates.

6. Skin remains less oily, but not as bad as when I first crashed.

7. I’ve noticed facial changes, but attribute this largely to weight gain — although that in itself seems likely to be PFS-related. I put this 7th but it’s actually very distressing.

My depression/anxiety are definitely circumstantial and to date I have not suffered extreme cognitive symptoms.

Also, I’m almost certain the gum recession I had previously noted is not PFS related and seems to have halted with better dental hygiene practices.

My goal for the next few months is to try a stricter diet and exercise routine to get a hold on the weight gain.

I have setup monthly recurring donations to help support PFSN. And have joined the mod teams here and on the subreddit. There are many very kind people I’ve met through this community and I am grateful for their comradery.

Stay well everyone.

[loops]

need to do a formal update to my member story but right now I just need to vent and I figured I’d just post here.

right before I took my first pill of finasteride, I hesitated for a second. I decided, just to be safe, to google “is finasteride safe.”

the excerpt that appeared at the top of my search was from Harvard Medical and it said something along the lines of, “Finasteride is generally well tolerated and can be taken for long periods of time.”

today I googled the same thing. just out of curiosity. while the first excerpt (from the NHS) now says, “Finasteride is generally safe to take for a long time.” the second now reads, “Although commonly prescribed, finasteride is a drug with side effects far more serious than the diseases it treats.”

now, I know you can’t go back and change the past. but I can’t help but think if I had just waited til now to think about trying Keeps, and I had googled that, and had seen that second quote, I never would have taken that stupid fucking pill.

[silenceispink]

I think I speak for us all when I say that I know exactly how you feel. I too mostly saw sources stating that finasteride is perfectly safe. Had I done just a bit more research, I probably wouldn’t be in this situation.

However, we have to keep in mind that this isn’t our fault. What has happened to us is criminal.

[Scotsman]

I’m really pleased that you found that @loops. Despite the personal pain caused, I’m really pleased that line is out there. It very well sums up the situation. If the NHS are recognising this it could be a powerful sentence to present to regulatory bodies.

[infinite]

That NHS page is the only reason I took it in the first place. Makes it sound like paracetamol

[infinite]

The second quote isn’t from the NHS, it’s from another website. Although I’ve been informed by the MHRA that they’ve asked the NHS to change that page somewhat.

[Recovery18]

I did research, but still ended up taking it. It just didn’t seem possible that people would have persistent side effects. I’m a big proponent of empirical data, and that data said it was safe. Anecdotal evidence never cut it for me… hard lessened learned!

[Erik]

For what it’s worth I completely trusted my doctor. I thought about googling it but I had been guaranteed by a medical professional that this drug was completely safe with no serious side effects and that I could give it a try without anything to lose. It never occurred to me that a prescription drug could cause a devastating persistent syndrome.