Long time no update.
Many things have occurred in my personal life. My 10-year relationship ended abruptly (no PFS related) and my whole life project and aims in life changed from one day to another. The bad news greatly affected my symptoms and amplified my cognitive side effects, destroyed my sports routine, distorted the way I was taking my pills and gave me new concerning physical issues such as back pain, shoulder pain, and difficulties moving, particularly in my legs (all neurologically related).
Protocol over the last 12 months - Medically controlled
As a summary, you can find below the protocol I have been following (not consistently) over the last 3 months:
- Tadalafil 5mg (every second day)
- Vitamin D3 1000iu (daily)
- Acetyl L-Carnitine 1000mg (3 times per day)
- L-Arginine 2000mg (3 times per day)
- Taurine 1000mg (daily)
And for a three months period:
- Pregnenolone 50mg (first month)
- Pregnenolone 100mg (second and third month)
My endocrinologist gave me the Pregnenolone but I began to feel less and less concentrated. Brain fog was coming back and my energy levels decreased notoriously. I went even worse when I increased from 50mg to 100mg. I don’t know if it was the lack of sport or the break-up ongoing feeling, but I was feeling worse and worse each day. After quitting Pregnanolone, I began to feel slightly better in terms of energy despite I was left in a very low mood state.
Symptoms
Below is the evolution of the remaining symptoms since my last post:
- Lack of motivation / concentration / brain fog. NO IMPROVEMENT/WORSENING . While I had previously improved on this. The break-up had its toll on my mental health and I cannot concentrate for more than 2 minutes for the last 7-8 months. It reached a point that made lacing my shoes extremely difficult and it would just feel like a big struggle and would take me like 10 minutes to do so. Concentration on anything that requires attention (solving problems, working or studying) is a hopeful dream.
- Lack of energy. IMPROVEMENT . Little by little, coming back to normal levels. I would say I am at 80%. This clearly improves when I exercise regularly.
- Anxiety / Low tolerance to frustration. IMPROVEMENT . I do not have severe issues related to anxiety and sudden disproportionate anger anymore. I do have occasional anxiety by always due to external reasons.
- Gynecomastia. NO IMPROVEMENT . Everything remains equal. Considering surgery at some point.
- Disconnection feeling between brain and penis. IMPROVEMENT . Over time, this has mildly but steadily improved and I only notice it occasionally. I believe either the time is helping to heal it or I am forgetting how it was to feel “normal”. Sensitivity is sometimes intermittent during sexual activity but this may resolve if I had a full erection.
- Weak orgasm (Anorgasmia). NO IMPROVEMENT/WORSENING . My orgasms are much weaker than before and sometimes not pleasurable. Other days
- Watery semen. NO IMPROVEMENT . Semen volume and consistency is intermittent but it is still not normal.
- Erectile Dysfunction and lack of morning wood. NO IMPROVEMENT . I do not notice a great difference between taking Tadalafil 5mg daily or every two days. Erections are generally functional but weak and not complete. Sex becomes difficult in certain postures. Morning wood happens around 40% of the days but they are mostly weak. I would say I am on the same point as 1 year ago.
- Prominent darker veins on the penis and sensitivity on one of them. NO IMPROVEMENT . I am noticing more and more veins, the penis looks more vascular, particularly during the erections. It looks very different to pre-Finasteride status, changes in penile tissue have occurred for sure. The uncomfortable sensitivity in that vein is just intermittent and rarely occurs.
- Penis shrinkage. NO IMPROVEMENT . The penis has not worsened or improved. Girth (mostly) and length seem to have stabilized. It has curved slightly to the left, but it is minimal and not always noticeable.
- Sexual dysfunction. IMPROVEMENT . Little by little, I am finding it easier to get aroused by external stimuli. Despite having low libido, I do not feel totally disconnected like in the old days. I am not proactive but I can be reactive to the external touch. Now, this has improved considerably but I am still far from normal. I do not have a feeling of sexual urge anymore when I am aroused.
- Lack of libido. IMPROVEMENT . I would say my libido improved by 10%. Very little, but something. I have also noticed I have days of higher libido, particularly around days I could have sex. Overall, I continue experiencing little interest and physical attraction for the opposite sex. For instance, girls do not attract my sexual attention in public places.
- Urinary urgency. IMPROVEMENT . This has slightly improved with pelvic floor exercises but it greatly depends on the day and how much I drink.
Overall, last year has been tremendously difficult in my personal life, I lost 6kg and recovered 10kg afterwards. All my hopes and expectations went down the toilet and I had to rebuild myself (I am still on it): went back to my mother’s home, lost a greatly meaningful relationship, my health went down the hill again, and I go to work but I am unable to perform, multiple expenses, etc
And while now my life is far from “ideal” at 33 and does not look promising, I keep burning stages on my medical options as I will explain below:
New Evoked Potentials of the Pudendal Nerve Test Results (and doctor’s suggestions)
Here is when more bad news comes up. Following my endocrinologist’s advice, I visited a neurophysiologist in order to test the status of my pudendal nerve signalling.
I took this 1-hour test with needles in my head and electric impulses running up to my legs, penis, etc. It sounds worse than it is. The result was mononeuropathy in the left side of my pudendal nerve with the right also affected to a lesser degree. More thin and thick fibres. In plain words: nerve damage prevents good signalling due to the loss of myelin in the nerve. Apparently, the right part is keeping function and compensating for it.
The doctor mentioned that this damage might have had a key role in vascular deterioration, venous leakage, penis shrinkage, urination issues and, of course, sensitivity and weak orgasms.
He did not doubt the Finasteride history and indeed said that Finasteride can be neurotoxic.
Potential surgery intervention (pulsed radiofrequency of the pudendal nerve)
Following the previous doctor’s recommendation, I went to another doctor whose speciality is the pudendal nerve. He examined the evoked potentials result and suggested intervening surgically (minimally invasive) to cover the nerve with PRP and hyaluronic acid to isolate it from any pressure and stimulate myelin recovery with pulsed radiofrequency at medium temperature (40 degrees Celsius). After that, he suggested going for shockwave therapy on the penis. Moreover, he did not discard that my pelvic floor would be affected so he suggested trying pelvic floor therapy first to see how I respond as it can help with innervation too.
The surgery costs around 2,000EUR which is a considerable amount for Spanish salaries, particularly for an intervention with no warranties to mitigate my symptoms. After seeing a couple of recent interventions to fellow PFS patients that showed no improvement/worsening, I have doubt about undergoing this intervention and I may keep my money and go straight to other alternatives such as a combination of HCG, shockwave and Andractim.
Pelvic Floor Therapy
In the meantime, I also went to a male pelvic floor clinic in Madrid on a weekly basis for pelvic floor rehabilitation. In the beginning, they did not believe in PFS but, as they apparently were the best in the country, I had to cope with their incredulity. Little by little, they started to believe and ask more, particularly the younger doctor, but the treatment seemed an “experiment” to which I did not respond well.
The diagnosis was not clear to me: pelvic floor muscles too tense in relaxation, tissue degeneration on the penis but no fibrosis according to them and … they did not explain it further.
Basically, the sessions consisted in pelvic floor exercises (to do at home and on-site), diathermia (radiofrequency on the penis to heat it inside for tissue stimulation), electrostimulation (to stimulate the pelvic floor nerves and recover sensitivity and orgasm feeling) and penis pump exercises.
After six or seven sessions, plenty of exercise at home and quite a decent amount of money spent on trips to Madrid, I did not see much improvement. Maybe urination urgency slightly improved but … difficult to really tell.
My current plan is to keep doing the electrostimulation on 2-3 times per week basis for a period of a couple of months as I bought the rehabilitation device and begin regular VED therapy for at least 1 year.
Next steps
Due to subclinical depression symptoms, I began to attend frequent sessions with a psychologist and I am making little progress. I am particularly concerned about the cognitive issues that prevent me from working normally. I cannot just focus on anything, read for 5 minutes, think clearly, etc.
Wake up, getting dressed and going to work takes me no less than 2h 30min and, during some time, I began to struggle to move my body due to stiffness. I even fell down the stairs one day.
After trying for several months, she believes I should go to cognitive rehabilitation sessions in a mental hospital to prevent further deterioration and see a psychiatrist in order to get some medication to push me out of the hole. At this point, I even consider it. I would like something to cope with my cognitive issues and, to be honest, I am quite curious about Buspirone as another doctor (experienced with PFS) told me that might help both libido and general mood.
In the last few weeks, I am beginning to be able to exercise again and I am feeling a bit better but still struggling.
I have rationalized and reduced the number of pills per day. So, now I am just taking the following:
- Tadalafil 5mg (every second day)
- Vitamin D3 2000iu (daily)
- Acetyl L-Carnitine 1000mg (2 times per day)
- L-Arginine 1500mg (3 times per day)
- Taurine 1000mg (daily)
My plan is to get in shape to promote an androgenic environment, lose some 4-5 extra kg and possibly attempt a combination of shockwave therapy for the penis plus HCG (low dose for an extended period) and Andractim. But, in order to do that, I need to get in shape first to ensure my estrogen does not go sky-high again.
Lastly, I am keen to participate as a donor for both Kiel study (Hamburg) and the new genetic study from PFS Network.