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Author Topic: Testosterone levels and Peyronies Disease  (Read 6346 times)

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Kevin_J

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Testosterone levels and Peyronies Disease
« on: November 15, 2016, 11:42:22 AM »

Hello all, this is my first post, but I wanted to let you guys know of something that has helped me significantly and might offer some promise to many of you. Here's my story...

I went to two different urologists (one was even at the vaunted Johns Hopkins School of Medicine). They both basically said, "Yup, that's Peyronie's. Good luck." Finally I went to a third urologist who actually seemed like he might care. We talked about my total health history, and then he said something along the lines of, "You don't seem like a candidate to have low Testosterone levels" (relatively young and fit 41 year old) "but it's such a basic thing that I want to check it to make sure I'm not letting anything slip through the cracks."

My first thought was "I'm not here to check my T levels. I've got Peyronie's dammit! Fix it!" But OK, I got a blood test done. I went back for the follow-up and learned that my T levels were in fact low. I couldn't believe it at first - I think it wounded my manly pride (lol). Anyway, he explained that they are still only in the beginning stages of exploring this angle on Peyronie's. He told me that in his practice, he started testing his Peyronies Disease patients, and "almost all of them have low T. We don't exactly know what the connection is there, but it's got to be something."

Then he explained the basic hypothesis (I am going to just put this in my own words instead of trying to remember his exact wording).  He explained that the rest of your body is pretty stingy with sharing nutrients and oxygenated blood with the penis. Most of the time the penis gets barely a life support drip of blood and nourishment. The only way your penis really gets nourished is through erections. Fortunately our bodies have a pretty good way to make up for the lack of nutrients at night. The idea is that men with normal/healthy T levels pretty reliably have about 5 erections per night while sleeping. They usually last about 20 to 30 minutes. The penis is repeatedly flooded with blood, oxygen, and nutrients to keep the tissues strong and healthy.

If, however, someone has low T levels, maybe they are only having 1 or 2 erections per night, and they're sort of half erections and maybe only last 5 minutes. That does two things: 1. it possibly predisposes someone to a penile injury due to weakened/compromised tissues in the first place, and 2. if they do get  a penile injury, their penis won't get sufficient blood/nutrients to repair the damage.

The blood tests indicated that I had low T levels. In hindsight, I could think back to when I was pretty sure my T levels must have started to drop. It was about 2 years earlier when my workouts just started to seem inexplicably harder. It was more difficult to motivate myself. I was tired. I realized I couldn't remember the last time I had woken up with "morning wood" (sleep erection). Honestly, I had been sort of half conscious of these things happening, and just chalked it up to being a busy, over-stressed middle aged dad. And by the way, if you do some Googling, you can find that low T levels are correlated with a number of chronic health conditions (that have nothing to do with sexuality in general or your penis in particular). So there are other health reasons to make sure your T levels are good.

So... I learned I had low T. Now what? There are numerous testosterone therapies - I'm not a doctor, so I won't get into the various alternatives. What my doc suggested with me was to take clomid to increase T levels. Clomid was originally developed as an estrogen therapy for women, but they have since learned that it works just as well to spur a man's natural T production as well. Technically, it is an "off-label" use for clomid. (There are rumors that one drug company is testing a "male clomid" where they had to change the formula just slightly to reissue a patent on it.) Anyway, quite a few doctors have been using clomid for years with almost no side effects in cases where the man can still generate his own testosterone. If a man can't generate his own, he needs testosterone replacement therapy. Again, I'll let you talk to a doctor about it.

The result? I have now been on clomid for a year, getting my T levels checked via blood test every three months. They have been back into the healthy range for a year now. I'm feeling much better, have more energy, and - crucially for Peyronie's - I'm back to getting a lot more erections. I'm waking up in the middle of the night or in the morning with "morning wood" again. My Peyronie's has not gone away entirely, but it has improved significantly. I had taken a picture of my erection for my first visit with my doctor to show him. I had not really been conscious of much improvement, until I took another picture after about 7 or 8 months of having good T levels again. When I compared the pictures, I was shocked. Definitely a huge improvement - I went from approximately a 30 degree bend to around a 10 or 15 degree bend. The only other therapy I tried is using a VED several times. After I hurt myself one time, I never touched it again.

I don't think my Peyronie's will ever go away entirely, but it is drastically improved now. I firmly (ha!) believe it is because my T levels have been fixed. A lot of other aspects of my health and quality of life have improved as well.

Anyway,  I know how awful Peyronies Disease is. I literally cried quite a few times thinking that any sort of sex life I might have was just going away... for good. My wife and I have always had a fun and satisfying sex life. It broke my heart that it might be going away, and I felt terribly guilty that I would be depriving her of that satisfaction. But things have been going great!

I hope that sharing my story might prove helpful to a few of you. I urge you to try going to a urologist, endocrinologist, or hell, even a general practitioner and asking to have your T levels checked. It can't hurt and it just might help! Your insurance should cover it. And maybe, just maybe, if you do have low T, it will help put you on the road to recovering at least partway from your Peyronies Disease (along with all the other health benefits of having healthy T levels).

Too long/didn't read summary: there appears to be a growing amount of evidence (at least in one urology practice) of a correlation between low T and Peyronies Disease. Get your T levels checked. They might be low. If so, there are steps you can take to help correct your T levels... and hence your Peyronies Disease.

Regards,
Kevin




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Paolo

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Re: Testosterone levels and Peyronies Disease
« Reply #1 on: November 15, 2016, 03:38:42 PM »

Thanks Kevin for your message, I have just read an article here Clomiphene citrate effects on testosterone/estrogen ratio in male hypogonadism. - PubMed - NCBI on Clomiphene citrate

What do other members think?  :-\
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Paolo

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Re: Testosterone levels and Peyronies Disease
« Reply #2 on: November 15, 2016, 03:50:35 PM »

Seems Clomid has been discussed here before but did it help anyone lessen peyronie's curve?
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james1947

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Re: Testosterone levels and Peyronies Disease
« Reply #3 on: November 15, 2016, 11:33:49 PM »

Regarding T levels:
We all think that it should be in the high end but not for sure it will cure or avoid Peyronies.
My T levels are very high and always were, it didn't helped me not to get Peyronies

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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Kevin_J

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Re: Testosterone levels and Peyronies Disease
« Reply #4 on: November 16, 2016, 09:46:51 AM »

Those are all fair comments - I never stated that it will "cure" Peyronie's. Only that the urologist I went to said he and his partner had started noticing a high correlation between Peyronie's patients and their T levels in their practice (Yes, we all know that correlation is not causation, but it can still be helpful to investigate). He even told me that they don't really understand the link, there has not yet been any clinical studies of a possible link, but he did explain the basic working hypothesis they *believe* may explain it (in my original post).

Paolo - The only thing I've done to treat my Peyronies Disease has been clomid. My curve has improved quite a bit. I don't know for sure if getting my T levels back in order is what did the trick, but I don't have any other explanation. I don't think my Peyronie's will ever be "cured," but it has improved significantly.

I just thought I would share the information because I felt like I discovered a "secret" that has helped me a lot. I've combed through many Peyronie's forums and never saw a mention of possible links between low T and Peyronies Disease. I thought I should share it in case it can help someone.
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Freemason

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Re: Testosterone levels and Peyronies Disease
« Reply #5 on: November 16, 2016, 02:05:55 PM »

I think its feasible to jump to some conclusion that T levels can impact recovery of Peyronies Disease..I know when I got Peyronies Disease my T levels were very low..fast forward 5 years later after getting my T levels checked my Total T was like 130 and Free T was 19...that's 19 not 190.  70 year old women have more.  Needless to say im sure having that low of T didnt' help the healing or lessening of my Peyronies Disease.  If you think about it Test. Is the one single thing in our bodies that pretty much makes us a man.  I don't think it prevents Peyronies Disease but could certainly impact the level of severity...i can see that.
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NeoV

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Re: Testosterone levels and Peyronies Disease
« Reply #6 on: November 16, 2016, 07:04:51 PM »

It's certainly a factor, and nighttime erections are very important, particularly if they are bringing blood into the dented or harmed areas. I'm really glad you're doing better and are having improvement!!!

Lester7

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Re: Testosterone levels and Peyronies Disease
« Reply #7 on: November 18, 2016, 10:57:10 PM »

I had low t also. Also given clomid which has brought my t level back into the 500s. Trying to start to ween off of it actually. I think there is definitely a correlation between low t and Peyronies Disease. Only question is are we more prone to get Peyronie's if we have low t, or do we get low t because we have a damaged honker? (Pain there, anxiety, distress, etc.)
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mischa

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Re: Testosterone levels and Peyronies Disease
« Reply #8 on: November 19, 2016, 05:23:08 PM »

I have struggled with Low T for years. It took practically begging my Dr to get replacement therapy. I finally had 2 low tests in a row and he agreed to therapy. Bottom ine even with replacement I am on the lowest side of normal which he's happy with and I'm not. I also take many other supplements to help as well. From someone who has suffered with low T for more then 5+ years (I'm 57), I can tell you first hand of all the detrimental affects of that. And with my recent progression of the Peyronies Disease - hourglass shape - shortening - Erectile Dysfunction it has not been very pleasant. All I know is after replacement I have had "some" improvement, I just believe from all of my research that being on the higher side of normal would be more beneficial. Convincing a doctor is another matter all together.  :-\
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Jonbinspain

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Re: Testosterone levels and Peyronies Disease
« Reply #9 on: November 20, 2016, 12:48:33 PM »

Low T is almost certainly one of the suspect causes of Peyronies. However, it's far from the only one.

It is interesting that your Urologist had picked up in this and noted that virtually all of his Peyronies cases had low T. It's clearly something that needs to be investigated thoroughly.

To have low testosterone levels at early middle age is not good. It needs to be addressed.
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skunkworks

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Re: Testosterone levels and Peyronies Disease
« Reply #10 on: November 20, 2016, 08:01:58 PM »

Great thread.

Yeah I have come to think that T levels are involved, if only due to the simple fact that higher T means more frequent and stronger erections and that is very healthy for the penis. There may be much more to the T and Peyronie's link, but the simple fact of more frequent and stronger erections is more than enough for me to treat it as a serious component of fighting this condition.
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pizzaman

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Re: Testosterone levels and Peyronies Disease
« Reply #11 on: November 22, 2016, 10:57:04 AM »

My Peyronies symptoms first appeared shortly after my low T symptoms became apparent. There has never been a doubt in my mind that low testosterone was a significant contributor to my Peyronies.

Androgens are vital for the health of male sex organs. When rats are castrated, all their sex organs atrophy pretty quickly. Testosterone also plays a strong role as an anti-inflammatory in men. The way I see it, healthy testosterone/DHT levels would at least help prevent Peyronies in three ways:

1. Activation of androgen receptors on reproductive tissues, ensuring proper smooth muscle tone, prevention of atrophy, etc.
2. Ensuring proper blood flow and oxygenation through night/morning wood.
3. Proper regulation of inflammatory processes.
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mischa

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Re: Testosterone levels and Peyronies Disease
« Reply #12 on: November 23, 2016, 10:35:49 PM »

What everyone is saying is true. I am I nurse and have done my share of research. Getting doctors to believe and understand it is something entirely different!  Unless I suppose it happens to them. My GP wouldn't even examine me. Just refer based on my request. Of course he knew I was a nurse and not asking what it is I have. But to not even get an idea of what's going on is not acceptable.
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skunkworks

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Re: Testosterone levels and Peyronies Disease
« Reply #13 on: February 23, 2017, 07:39:30 AM »

Check this out - https://www.outsideonline.com/2125031/what-happens-your-body-thru-hike

The second last table of data, T and Free T before and after a 486 mile. high altitude hike.

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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

popopo

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Re: Testosterone levels and Peyronies Disease
« Reply #14 on: March 03, 2017, 02:37:06 AM »

Anyone heard of the drug "androxal"? It already exists, but the fda didnt see th need to approve it. It's basically clomiphene without the side effects and if only the FDA would make use of it there would barely be any need for TRT. The drug doesn't suppress natural sperm and hormone production like trt would do. It anybody knows how to get this stuff anyway or if anybody knows how long it will take to maybe still be approved, please tell me. And for all of you with low testosterone levels, look into this and another drug called aromasin. Both drugs combined will not only give you the same results as trt would, but it will also stimulate your own body to make the hormones instead of just replacing them.
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Age: 25
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Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Arabia

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Re: Testosterone levels and Peyronies Disease
« Reply #15 on: March 10, 2017, 11:49:26 PM »

CONCLUSIONS:
Men with sexual dysfunction characterized by either Peyronies Disease or Erectile Dysfunction had similarly low T levels, and low T did not correlate with Peyronies Disease severity or surgical correction rate. The comparable prevalence of low T in men with Peyronies Disease or Erectile Dysfunction suggests the high rate of low T in Peyronies Disease men may be related to a common process among men with abnormal erectile physiology and not specifically causative in plaque formation.

https://www.ncbi.nlm.nih.gov/pubmed/25580982
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PeetyPeet

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Re: Testosterone levels and Peyronies Disease
« Reply #16 on: March 11, 2017, 07:18:39 AM »

Is this study looking at Total testosterone or Free testosterone? I'm sure there has been a study which showed no correlation between T-T and peyronies severity but did show a correlation with Free T - Less Free-T = more severe peyronies.
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james1947

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Re: Testosterone levels and Peyronies Disease
« Reply #17 on: March 12, 2017, 07:03:37 PM »

Quote
Men with sexual dysfunction characterized by either Peyronies Disease or Erectile Dysfunction had similarly low T levels
They didn't include me in the study :(
I have T at 695 at the age of 69, but also bad Erectile Dysfunction and bad Peyronies
Modified:
Very high libido also


James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Realvinni2000

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Re: Testosterone levels and Peyronies Disease
« Reply #18 on: March 14, 2017, 07:51:33 PM »

Perhaps the low T is caused by the Erectile Dysfunction; because the recent return of the disease I have really a low libido .
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PeetyPeet

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Re: Testosterone levels and Peyronies Disease
« Reply #19 on: March 15, 2017, 07:01:39 AM »

My understanding is that low testosterone is just one of several potential causes of peyronies. Testosterone is considered crucial in maintaining the structural integrity of the penis. It can also cause Erectile Dysfunction. Erectile Dysfunction can also cause peyronies as sex with a less than great erection leaves a penis more susceptible to injury.


If, like James, your T levels are good, then perhaps the Erectile Dysfunction is secondary to peyronies. The theory is that fibrosis on the tunica albuginea and the resulting loss of flexibility prevents the tunica albuginea from expanding sufficiently during an erection to stop blood flowing out of the penis via the veins of the venous plexus. These veins would be completely compressed during an erection of a healthy penis.

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