Topic
How propecia (temporarily) destroyed my sexuality
Hi,
I suffer from long-term adverse effects of propecia and would like to share my experiences. A note in advance: I am not a doctor, I never received any medical training, all that I’m writing is a combination of my experiences and speculation what this condition is all about.
I took the medication for more than 5 years starting when I was 18. I quit about 10 months ago. During those 5 years, my erections and libido were successively getting weaker. I took propecia before I started having a “regular” sex life so I never really understood some of the adverse side effects. When I experienced testicle pain and a complete loss of libido and morning/nocturnal erections, I decided to stop. I never suffered from anything other than sexual side effects, but it seems that many suffer from depression, brain fog, gynecomastia and other serious side effects. I did not have a girlfriend at the time and did not realize how severe my erectile dysfunction, loss of penile sensitivity and loss of libido were. When I tried to sleep with a girl three months later, I did not have any libido at all, it took my ages to get a somewhat passable erection, I hardly felt anything after penetration and so I went soft after one minute. This condition was fluctuating for the next months. I was one cured for a whole month, before the sympomes came back with a vengeance.
I went to see Dr. Goldstein in San Diego and he detected
“mild-moderate dorsal sensory neuropathy, dorsal neurovascular bundle thickening of the peniel shaft consistent with mild Peyroneis disease, mild bilateral corporal fibrosis, unilateral cavernosal artery insufficiency in the right”
My opinion is that Propecia might have entailed CPPS with strong sexual side effects. My chronically tense pelvic floor entrapped nerves which sometimes leads to penile numbness or insensitivity with strong fluctuations occurring.
One month after the visit:
I feel way better although not cured. I tried most of the medication Dr. Goldstein recommended:
– Naltrexone: I switched to LDN which seems to work better for most people. I’ve been taking it for 3 days and I can’t really pass a proper judgment yet. Might help, don’t know yet.
– Flomax: did not help at all and made me feel dreadful. stopped taking it. I will carefully try Prozasin in Germany as another sufferer found that alpha-1-blockers help him a lot in contrast to flomax for instance
-Buproprione: did not seemed to work and I also did not feel it was necessary vis-à-vis the improvements I made.
Clomid and Anastrozole: Seem to help to a limited extent. They might be the reason – in combination with triggerpoint massage – that my orgasms are much more intense and my sperm count is much higher now. Anastrozole is very expensive in my home-country, I don’t know what to do about it yet.
Experiences:
I think that most of my symptomes are pelvic floor / prostate related. My symptoms are very similar to those of guys suffering from hard flaccid.
For instance maintaining an erection is much harder for me when I’m standing, which has been the case for years now. Except for these brief periods of recovery. If I was still in California I could visit David Wise and Rodney Anderson whose protocall might help PFS sufferers.
I do some meditation, pelvic floor relaxation, triggerpoint massage and stretching every day and I feel much better now, although still far from cured. I have had another very brief random recovery with strong libido two days after I saw Dr. Goldstein and therefore before I took any medication. However, masturbation seems to exacerbate my symptoms. The intense contraction during ejaculation seems to be too much for my prostate and pelvic floor. I also observed that I tend to clench the muscles of my pelvic floor during stress and I’m currently trying to end this bad habit. I will see an expert on pelvic pain in my home-country in a couple of weeks and update my status.
I also changed my diet since the wrong diet might cause chronic inflammation in the pelvic floor and exacerbate smyptoms. I don’t feel that is the root of the problem, but a good diet cannot hurt and there are some inspiring reflections on this homepage anyway:
http://coolinginflammation.blogspot.com/
I am not an expert on this, but the fact that the majority of testosterone is produced in the testicles and the low blood flow due to chronically tense muscles (= CPPS) seems to be fundamental for PFS. But that’s just my two cents. It’s interesting that one PFS sufferer was completely cured of brain-fog, low libido, eyesight-problems etc. for a short period after working his pelvic floor and his prostate. Vice versa, sufferers of “hard flaccid” and pelvic floor problems sometimes seem to have similar problems as PFS sufferers.
This is all speculation by somebody with very limited knowledge about medicine, but anyways: pelvic therapy seems to help me a lot.
My Status Quo:
Blood Flow: way better. Testicles and feet are rarely cold. I still have a very prominent vein which appeared a couple of months ago and seems to be very common.
Back / Abdomen pain: Not as often anymore, but still present. Avoiding long periods of sitting helps.
Testicle / Thigh pain and numbness: Completely gone. Very rarely slightly weird feeling after orgasm.
Libido: Still fairly low. No changes after taking, but as mentioned above, brief recovery a couple of weeks ago. Might be related to all the suffering and the fact that I associate sexual matters with a lot of emotional suffering and orgasms with the pain following them. I will meet my girlfriend in two weeks which might change the situation since I don’t need to fear rejection with her and might be able to establish a new positive relationship towards sex. Just speculating…
Erectile Dysfunction: Much better. Spontaneous erections (although not connected to libido or sexual thoughts). Cialis works again which it did not for some time.
Penile Sensitivity: Seems to be higher but might be a placebo. It is way easier to get orgasms at the moment when masturbating. Chronically tense muscles affecting the pudendal or other nerves seems to be very common for fellow sufferers and seem to go away with treatment. At least that is what I hope.
Urinary Frequency: Cured since exercise in accordance to Heal Pelvic Pain by Amy Stein and A Headache in the Pelvis (very interesting read).
Orgasms: Way more intense. The last one was so intense I felt dizzy afterwards. It feels very absurd that this is the case, considering that my libido is still very low.
The next months: I will try to focus on locating and fighting trigger points inside my pelvic floor and seek help by pelvic therapists in Germany. If my orgasms and sperm improvements subside after stopping clomid and anastrozole I will continue them.
Conclusion: Some of what I said might be wrong, I’m just sharing my experiences. If you suffer from adverse side effects of propecia, go see Dr. Goldstein or another doctor familiar with the topic. Also: check you prostate region and your whole pelvic floor by consulting an expert like Amy Stein or Wise/Anderson. My feeling is that chronically tense muscles in the region might be central to recovery. But in any case: you will probably need to experiment carefully and find your own route to recovery. I am sure it’s possible. Don’t give up even though there seems to be no light at the end of the tunnel. I have read about a case of complete erectile dysfunction (due to chronically tense muscles in the pelvic floor, with hindsight) who was close to suicide one month before he got completely cured.
I wish everybody all the best for their recovery.