There was a guy here who posted about getting a procedure which involved having fat implanted. Apparently it took ages for the swelling to go down and the surgeon had never seen anything like it, but I believe after that it was successful.
1 Like
Yeah it’d probably be safer to wait and see how your body responds once this condition is effectively treated and if nothing changes the future is bright and i wouldn’t have a doubt in my mind there will be ways to restore subcutaneous fat to it’s former self with a non surgical approach, especially since it effects a lot of aids suffers, it’d be a topic of interest for people to study.
Also Scotsman I’m delighted to hear about your improvement, it’s always nice to read about a long term sufferer of this condition see sudden improvements, it gives everyone else hope and shows that no matter how long you have this condition, it’s not impossible to see some sort of recovery in areas naturally. When a treatment is brought out I can’t wait to see how everyone responds. We’ll all be like new men/women.
5 Likes
Hi there Will. Years ago I spent hours and hours trawling the web for possible treatments. Although I’m not actively looking into anything just now, I’ve still sort of shelved them at the back of my mind. I am aware of the guy that @Greek mentioned re: fat transfer. It would be interesting to know if my fat loss is as significant as that reported by the member in question. He said that his surgeon had seen nothing like it. This appeals in that it appears a longer lasting treatment and utilises your own fat, although like all interventions there can be complications. A lot of the fat can be reabsorbed, or you can get an infection. You may also end up with fatty lumps under your skin. I think the best approach is to seek out someone skilled who takes a moderate approach, but I’d never say never. A member here and on solvepfs (@Patrik82) has reported success with Sculptra which is another option. To be honest, what upsets me more is my prematurely aged skin, although the subcutaneous fat loss has meant that through the loss of underlying support the damage can appear more evident. My cheeks fall if I tilt my head to the left or right, or look down. Another member on both this and solvepfs, mcibofh, has reported his subcutaneous fat returning whilst pursuing a treatment plan supported by the member Justquitdut. He attributes this to the peptides he was taking. I am actively considering a course of peptides, particularly as many have reported that peptides have an anti-ageing effect with regards to skin. If I am able to overcome my natural reluctance when it comes to jabbing myself, I would like to give this long enough to see if there is any discernible difference to my skin, and then I will consider my options beyond this.
1 Like
I think what you describe is a pretty common reaction most people have when they suffer something like PFS (or perhaps indeed any major medical or life issue). The first reaction is to google the hell out of it and find solutions which usually just increases frustration and anxiety. As time goes by, you sort of realise that stepping back a bit and giving yourself some distance is what is best for your (mental) health and the issue (hopefully) takes on a small proportion and doesn’t quite seems so daunting. I certainly hope I am in this stage at the moment and things will seem more manageable with time.
I think one of the nice things you have at least is there does appear to be options. You can consult doctors about the skin and fat loss. You may decide not too and I completely see your point about risks and uncertainties. Sometimes just having these possibilities though in the back of your mind (as a sort of safety net) allows you to get on with life a bit and you may decide you never want to use them and you can life a relatively good life without needing the treatment.
I actually saw a pretty good dermatologist a few years ago in Oxford who was very much up to date with lasers and things - Dr Neil Walker. Are you actually based in Scotland? If you ever felt you wanted to you could always look him up and see what his opinion on the fat loss and skin would be. I know he has a lot of success doing both fillers and laser rejuvenation.
1 Like
In the mean time, definitely check out the peptides. Just think very carefully about risk and be careful so as not to make the situation worse. I feel I am a bit paranoid now about doing anything to my body which could make all this worse!
I couldn’t agree more with your assessment - absolutely bang on - I think that it comes down to natural in-built self-preservation. You need to adapt or you will remain in the heightened anxiety mind set. I don’t think it’s a case of rolling over on your back and accepting things, but being kind to yourself by allowing that space and time to re-adjust whilst still slowly chipping away at these barriers to your longer term health and happiness, whether that be donating to the foundation, or moderating your life style, or trying a particular treatment (of course with a full awareness of any potential further risks that could cause further harm). It’s trying to traverse that path whilst dealing with the psychological impact of dealing with it.
I am in Scotland. When I first became aware of the fat loss I consulted a cosmetic surgeon privately. He only assessed my face from looking at me from across his desk so it is fair to say that I felt that he didn’t perform a proper examination. He did however recommend laser resurfacing. I am a bit wary of something so invasive, but at the same time I have considered an ablative treatment for my skin, whether that be C02 laser, or a phenol peel. This of course would carry the most amount of risk, but at my lowest point the idea of such a aggressive treatment appealed - almost wiping the slate clean or waving a magic wand to get back to a skin that didn’t wrinkle. I kind of know however that a judicious approach is much more sensible. My previous G.P.referred me to plastic surgery but unfortunately they turned me down due to it being cosmetic, despite the psychological harm it has caused. I know of others who have had treatment, including a friend who has had laser treatment for a minor scar above one of his eyebrows. I don’t know why he was approved for this. My mum also had a blepharoplasty on the NHS, but this was because of swollen eyelids which resulted in excess skin. I have thought in the past of seeing her plastic surgeon as he like most of them also does some private work.
Thanks a lot for the recommendation Will. I will look him up if I ever consider going down this road. It’s always good to get a name, especially when you’re dealing with something as important as your face.
Regarding the peptides, I may regret it if something were to go wrong, but it is something I want to try before considering any cosmetic intervention. I have been stuck for many years and I have kind of plotted out a road which involves giving this a shot.
3 Likes
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)? Scotland, U.K.
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?) It’s so long ago that I can’t quite remember but I assume that it was Google.
What is your current age, height, weight? 49; 5’10"; 12 stone 5 pounds, although I was 37 when I first joined propeciahelp whilst still taking finasteride due to concerns about side effects and 39 when I eventually stopped & became active on the forum.
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1 mg/day, although there were times when I hadn’t gotten around to arranging for a new prescription by the time my current script ran out so there were some stop/start gaps.
What condition was being treated with the drug? Male pattern baldness
For how long did you take the drug (weeks/months/years)? Approximately 12 years
Date when you started the drug? Late 90s/2000
Date when you quit the drug? Late 2011
Age when you quit? 38
How did you quit (cold turkey or taper off)? Cold turkey
How long into your usage did you notice the onset of side effects? 7 years approximately
What side effects did you experience that have yet to resolve since discontinuation?
Thinned, wrinkled skin; subcutaneous fat loss; dental bone loss; numb, wrinkled finger tips; some toe nail degradation?; cold extremities; weak urinary flow; frequent urination; penile tissue loss; low libido; erectile dysfunction (difficulty achieving and sustaining full erection); difficulty reaching orgasm; impaired orgasm; weak ejaculatory force and reduced ejaculate; hair loss to lower legs and thinning eye brows; some cognitive/memory issues; anxiety.
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
[ ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X ] Reduced Ejaculate - this has improved somewhat
[X ] Inability or Difficulty to Ejaculate / Orgasm - this improves somewhat with time since previous orgasm. Generally it feels like a two day refractory period although my libido is usually low.
[? ] Reduced Sperm Count / Motility
Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ X] Memory Loss / Forgetfulness
[X ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks - my issues with anxiety don’t feel as acute
[ ] Severe Depression / Melancholy - this has eased
[ ] Suicidal Thoughts - I initially felt suicidal on observing the additional side effects several months after stopping finasteride although this is thankfully no longer the case.
Physical
[X ] 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
[X ] Joint Pain - I can experience some pain in my hands
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[X ] Frequent urination
[X ] Lowered body temperature
[X ] Other (please explain)
As detailed above, thinned, wrinkled skin; subcutaneous fat loss; dental bone loss; numb, wrinkled finger tips, some toe nail degradation (I’m not quite sure how to word this. My big toes, one in particular, have become crinkled, so much so in one that a chunk was torn off); weak urinary flow
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Nothing of note. I currently take vitamin D3 (4000iu) and vitamin C (1000mg) daily and I have not long started to take biotin (1000ug) daily. I have taken supplements in the past with no discernible difference. It could be that I don’t give them enough time, but I can’t escape the feeling that it is merely a psychological crutch that will have exceedingly limited if any impact and that the action of swallowing a vitamin at least feels like you are doing something.
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)?
https://forum.propeciahelp.com/t/scotsmans-bloods/5629/9
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.
Firstly, apologies that despite being a member of the forum for over a decade I have never posted a formal member’s story. I feel that I have spoken about my experiences for so long that the cows are now bedded for the night so probably for my own sake I will try and be as expedient as possible here with the proviso that I may expand it a bit in future. I have previously written a summary that can be accessed if you click on my avatar and on the top right click to expand. It’s one of these things whereby I have spoken a lot about my experiences historically and it can be difficult to tread over old ground.
WORK IN PROGRESS
Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY
-
Name of the therapy/substance: Vitamin D3
- Dosage: 4000iu
- How often you took it: daily
-
Status
- Still using [ X]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
-
Duration of use: Days [ ] Months [ ] Years [ X] - I have been taking vitamin D3 for years although I can’t remember how long. I have taken 4000iu for at least a year and a higher dosage before that.
-
Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Name of the therapy/substance: Vitamin C
- Dosage: 1000mg
- How often you took it: daily
-
Status
- Still using [ X]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
-
Duration of use: Days [ ] Months [X ] Years [] - I can’t remember how many months.
-
Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Name of the therapy/substance: Biotin
- Dosage: 1000ug
- How often you took it: daily
-
Status
- Still using [ X]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
-
Duration of use: Days [X ] Months [ ] Years [] - I’ve not long started this although I can’t remember how many days.
-
Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
-
Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
I may try and be more specific with how long I have been on the treatments above by looking to see when I purchased them.
3 Likes
I thought that I’d update things, not so much a general update but a specific twist in my own effed up tale.
What has always complicated my own story is that alongside my fin use I have a long history of taking anti-depressants, reaching right back to my teenage years. If I could embue a wee bitta Cher and Turn Back Time then I would have had the foresight and resolve to avoid all medications. I fear that they have all made their insidious mark. Anyway, I have previously written about going cold turkey with Paroxetine not that long after coming off Finasteride for good due to not getting to the pharmacy to pick up my most recent script due to my low mood at the time. That and my experience of the new side effects on fin’s cessation had me suicidal and in a state of emotional lability. Yet again, I feel that I was foolish to go with my doctor’s recommendation of Venlafaxine. Fast forward ten plus years to round about now. For a long time I have wanted to get off medication all together, partly because I have learned the hard way of their harms, but also I wanted to see if my sexual side effects would improve: low libido, some ED, impaired orgasm, low semen and force. I tapered in collaboration with my current GP, lowering my dose monthly until I reached the lowest possible dose. My GP recommended tapering this every other day for a month, which I did. Again, in hindsight I should have done a lot more research and seen if there was a more precision tooled approach, rather than what could be seen as turning a light switch off and on for a month. Despite being previously burned I am always amazed at how I still leave myself wide open to further harms. Doctors will lead you blindly to worse places as they don’t know any better. And they can seduce you with their reassurances. The same as wishing I had never taken anything since my teens, or wishing that I hadn’t stopped finasteride as it could have held off the explosion of the PFS time bomb it had planted, I now wonder if I would have been better off just sticking with 37.5mg of Venlafaxine indefinitely, rather than rolling the dice for a better outcome and a clean future.
Anyway, that is a huge preamble to discuss a new side. My semen volume has taken a huge hit. From being low it is now a mocking end of the hand wash squirt of shite. A clean up which barely dampens my at hand tissues, rather than that desired multi-tissue bleach fest. Not great for a gay man where men like everything in plenty (I should add that after many years of not being with a guy due to huge confidence issues, in the last few years I have managed to get back on that particular horse and engage with guys again, despite my low libido etc impacting all of that. This is just another factor which makes things even more difficult, especially casual encounters.) Less than a month ago it was low but not this. Abstaining also helped. The semen volume decrease happened in that final month of tapering and has remained at this new baseline. I’ll hold off a month then see my GP. I honestly don’t know what they can do, but at least I can air what happened and share these risks. I’m hoping that time helps, but I’m not exactly hopeful.
Just another data point.
4 Likes
Forgive me if it’s too personal, but as a fellow Scot, have you found any doctors local to you (or near enough) that will treat this disease seriously? I’m struggling to find anywhere to go
Hi there @nothing
No worries. It’s not too personal at all. I’m afraid that I don’t have any names of doctors that have really taken this on board. I’ve had a range of responses over the years, from full on gaslighting courtesy of psychologists, to passive sympathy, to a Dr who claimed that those who took their own lives could only be from reacting to sexual dysfunction as their gospel was the official side effects profile at the time. And finally Drs who make the right noises with that uncertainty as to whether they’re just humouring you.
I’m sorry that I can’t be of any real help. All I can advise is to keep on discussing it with medical professionals as at least you are providing a service in getting the word out. Hopefully that will help others down the line as they will remember that appointment where that guy once mentioned PFS.
Wishing you the best of luck in all of this.
2 Likes
Thank you very much for your response, and don’t worry it was still definitely helpful.
I suppose an issue I find is that even if a doctor doesn’t understand the condition, I’d at least like for them to let me try things when it comes to treatment. A lot of guys talk about hormones, steroids, HCG, test etc, but no doctor will even allow me to try these options.
Have you found that this is something they’ll soften to at all?
It’s good to hear from a fellow Scotsman!
1 Like
I really can’t say unfortunately as I’ve not tried to see whether the NHS can provide specific individualised help along certain lines or whether that is possible. All I can suggest is to continue to try, or to ask them whether it is their clinical judgement which is making the call or NHS strictures, and if they know of a work around or even privately, as the quality of your life is continuing to be greatly affected and you are reliant on them to try certain things out and don’t want to go down the DIY route. I’m not even sure whether there are any private providers here that could help as I’d imagine that most will offer basic cookie cutter treatments, like TRT.
And definitely! Thanks to yourself I can now pluralise my username: The Scotsmen of Propeciahelp!
2 Likes
I thought that I should add this as another data point in my own story.
I had thankfully escaped the devastating insomnia inflicted by so many PFS sufferers. I have usually been able to sleep no problem, getting to sleep quickly and not waking until the alarm. In fact I could cheerfully sleep longer.
Several weeks ago I unfortunately had a not good late evening of rumination which contributed to feelings of anxiety, low mood and suicidal thoughts. Due to this I struggled with sleep that night.
Since then I believe that I have developed insomnia. Whereas before I would sleep until my alarm, I am now waking up every night after about five to six hours, wide awake and feeling anxious, and not able to get back to sleep due to my wakefulness. My anxiety feels low level throughout the day, with a nervousness in my chest and me regularly inadvertently holding my breath. It can feel like yet another deterioration in all of this. I suspect that anxiety is the driver.
4 Likes
This was two years ago and I ask if you still take both? Did you see a benefit from them?
As an added query, have you ever tried Pygeum? Your bud, Jim
Hi there Jim
I’m still taking vitamin D3 but I stopped the vitamin C a while back. To be honest I’m not sure if it makes a difference. One reason I take it is that I will invariably not get enough sun on my skin, especially where I stay, so hope that this supplement will nudge things in the right direction. As all of us know however, it can feel like a bit of a crap shoot as we have been stung so many times by approved meds. I’ve not tried Pygeum.
3 Likes
Thanks for the reply, friend, @Scotsman.
What started this inquiry? My wife and I have been taking 1000iu of D3 daily, cannot recall why! Our D3 pill is oil in a gel pill (gelcap?) about the size of a pea. On a lark, I pushed one into my urethra and stroked it down the shaft until I could no longer feel it (maybe near the prostate by then?).
Within 5 minutes I had a full erection! It didn’t last long but it had me curious. About 20 minutes later the tip of my cock was oily.
The boner may have been coincidence, or suggestive/wishful thinking, I’ll admit. I’m going to the store later today to find a bigger dose, maybe 5000iu, in a bigger gelcap. I need to try it to satisfy my curiosity!
I searched this forum, saw little against D3. On Google much is made about D3 improving sex capability!
BTW, if my comment above is too frank for your tastes, let me know and I’ll edit it. Jim
3 Likes
I cannot help but say: Wildman by name, wildman by nature.
3 Likes
I’m more than happy to have both yourself and your own particular carnal knowledge on my own wee corner of the forum. It’s a broad church here. The broader, the better. Although I may have inadvertently with that carried on Carry On Wildman Jim (not for the faint of heart!).
If you end up at the local emergency room with a distressed johnson I know nothing.
4 Likes
Your penile suppository (lack of better phrase here) must’ve burned a little, no? I guess not because the gel was oil-based. Hope you don’t get a UTI from that. Cranberry juice, the real mccoy, not the sugar water with a splash of cranberry that masquerades on most the shelves, the real stuff has been effective for UTIs in my experience. The real mccoy is tart/sour, not bitter, and certainly not sweet. Never had a UTI from vaginal or oral, butt (but) the backdoor entrance tends to give me them.
Reminds me of when I was a toddler, doctors wanted a urine sample. Why, I don’t know. Suddenly, nurses surrounded me and started pressing on my bladder. It hurt, I resisted, kicked a nurse across the room. They surrendered and waited, got it eventually.
Vitamin D3 or parathyroid hormone are needed for calcium absorption, else bones and teeth weaken. Don’t need both, so when 1 goes up, down goes the other. Only a certain amount of calcium is needed in the blood. The rest needs to go to the bones and teeth. Without vitamin k2, this cannot occur. Too much D3 without enough K2 to shuttle it where it needs to can result in hypercalcemia (high calcium in blood), organ and artery calcification, kidney stones. Too much K2 could result in hypocalcemia (low blood calcium) and excessive clotting. The body can make up to 20,000 and 30,000 iu of D3 naturally via the sun per day, depending on factors, factors, factors.
2 Likes