Hi all,
Thought it might be worth posting my story on here in the hope of finding some support and fresh ideas. More than anything, it would be nice to just feel a part of a community of people that know what I’m feeling. I’ve followed the posts on here for quite a while and thought I should add my story to the growing list.
In 2003, at the age of 14, I was diagnosed with type 1 diabetes. Around 1-2 years later, suffering from sudden hair thinning after previously having a full head of hair, I went privately to a local dermatologist where I was prescribed Propecia. Crucially, I was told that if I experienced any apparently unlikely side effects, they would subside if I quit.
Due to the cost of Propecia, the aforementioned dermatologist suggested I cycle the tablets for 6 months on and 6 months off. Memory of my life from this time is extremely sketchy and it’s very hard to provide a perfect account chronologically, but when on a family holiday in Gozo for one week in 2005, waiting for my GCSE results, I suddenly experienced burning in my left testicle like nothing I had ever experienced before. It became extremely swollen and felt dead. I was also, interestingly, hospitalised with gastroenteritis on this same holiday for three days.
This, as I later found out was the first problem I experienced as a result of finasteride. At the time, I genuinely thought that I had testicular cancer and this was something I spent the next year in serious fear of. My left testicle changed shape and size on a regular basis and I had to resort to wearing tight boxer shorts to restrict movement, which had become extremely uncomfortable. I was far too afraid to visit my GP and did not for a moment think that it was a result of finasteride usage.
I found myself becoming increasingly depressed and anxious for the remainder of my school life and sixth form. I became known in my year for being the person at parties that would always be blind drunk - I started using alcohol to switch off from my problems on a regular basis.
My finasteride usage was on and off for a couple of years, but it was my girlfriend at the time who told me that she had googled the drug and found it wasn’t necessarily safe. Around this time, the same dermatologist warned me that another local man had been diagnosed with breast cancer after using this drug. Around the age of 18, I came off Propecia once and for all, around the time I started university.
The effects of finasteride withdrawal were catastrophic. Over the next few months I suffered a number of problems:
Firstly, I gained a massive amount of weight (increasing by around 3 stone), which largely felt like water weight, around my chest and abdomen.
I also underwent changes to my facial structure to the point where I was unrecognisable. People have at times admitted to me that my face can look disfigured.
I developed severe erectile dysfunction (previously mild, which I had attributed to my diabetes).
I developed horrendous muscular problems. I had previously played football, tennis and rugby competitively on a regular basis. To this day, running a few hundred yards leaves me feeling like my legs are going to explode with pressure buildup.
I developed a number of food intolerances. I didn’t realise this for a few years unfortunately and suffered horrendous mouth ulcers, face and stomach swelling and general fatigue.
I suffered changes to my skin pigmentation/quality. It became dry and flakey. I also suffered on a holiday in the sun when my skin, instead of tanning, became extremely burned in patches and was untouched in others, creating a bizarre overall appearance.
The next problem was one of the two biggest as far as I’m concerned and it’s something that pretty much everyone in this situation seems to report: brain fog. I started sitting/standing for long periods of time just staring aimlessly and then suddenly snapping out of it and wondering what I was doing. Listening to other people talk became very difficult. I started regularly switching off mid sentence and when speaking myself would often struggle to find basic descriptive words. Reading philosophy texts (which I had previously really enjoyed) at university became almost an impossibility. I would read a couple of lines and find my mind just empty. I couldn’t retain information.
The biggest problem for me has without doubt been sleeping. Many report a lack of sleep on here and my problem is that I’m regularly awake until 3, 4, 5, 6am and then sleep until I HAVE to be up for work. I feel like I sleep through what should be most of the best hours of my life.
Finally, anxiety. I had never suffered from anxiety problems in my life before, but all of a sudden I found myself unable to attend seminars at university. I had to drop out and attend again the following year, where there was no difference to the anxiety.
I refused to believe for a long term that these issues were a result of Propecia. That it was all in my head, or, as my doctors tried to make me believe, as a result of my diabetes.
In the last eight or so years, I’ve had more medical appointments than I could possibly ever recall. My GP, neurologists, physiotherapists, holistic healers, dieticians, massage therapists, vascular surgeons… I’ve had muscle biopsies, nerve conduction studies, countless blood tests, a fascia release in my anterior tibialis compartment in my left leg, an endoscopy. Other than diagnosis of a hiatus hernia, nothing of note has been found.
The most important and noteworthy changes I have made to my life include:
Firstly, the cessation of all forms of exercise that involve my legs (far too painful).
Secondly, the inclusion of testosterone supplements daily (which really helped the erectile dysfunction tremendously, although there is still a slight loss of sensitivity at times, especially with prolonged sexual activity and without regular weightlifting).
Thirdly, the complete eradication of gluten, lactose and soya from my diet. This helped me to lose weight rapidly and, in conjunction with extremely low carbohydrate consumption, allows me to keep it at bay.
Fourthly, a substantial decrease in alcohol consumption. This has helped a lot of my problems quite a bit, without really revolutionising one particular aspect.
Finally, regular massage for the muscular problems. Every therapist I’ve been to for this comments on just how tense I am and how tight my muscles are, which I assume is due to being in a state of chronic anxiety. My leg problems never improve, but my upper body/back feels much better for it.
Things that I know make a difference and that I need to be 100% with, as opposed to attempting sporadically are weightlifting, drinking more water, eating less carb, avoiding stressful situations, removing alcohol. This year I’m going to really push ahead in these regards. I’m tired of watching my life pass me by. This started 13 years ago and the way I am I cannot possibly ever think of having a family, which pre finasteride I think I viewed as something of a given.
What I would love advice on, if anyone can help me, is how to improve the sleep, anxiety and brain fog problems. What are everyone’s top tips? I can cope with the muscular problems by avoiding leg exercise and getting regular massage therapy, I can cope with the swelling and weight gain with a good, clean diet and I can control the ED with testosterone supplements and weightlifting. What I can’t seem to get rid of is the other three and I feel like I need some fresh ideas. Is there a particular supplement or activity? Notably, when I take diazepam I sleep like a baby and I wake up feeling renewed; every day tasks don’t seem akin to climbing Everest. I’m aware that this is not a long term solution, however.
I’m genuinely horrified at times when I think back to the darkness my life has been shrouded in for nearly half of my life. Diabetes comes with the challenge of being a smokescreen/excuse for doctors, when I know that it’s the least of my worries (although I take good care of myself in this sense). However, I’ve reached a point where I need to just finalise a system and try to stick to it for life. I feel like I’ve come a long way but still have a long way to go. A big part of becoming an active member of this forum for me is to speak to people who know what I’ve gone through. My parents, until very recently, were in complete denial about PFS. Now they are starting to accept it and it feels like another weight has been lifted from the mental stress of this horrible situation.
My memory is poor, so I may have omitted some extra little details about my story, but this is definitely the overwhelming majority of my experience.