I've had Peyronie's for basically my entire life

[user-b348fc61]

NOTE: this is a very rough draft. I just really wanted to get something out here to hold myself to making this post.

Hey everyone!

This is basically the first time I've ever discussed Peyronie's in a semi-public manner. And honestly, while the physical aspect has been quite tough, the mental health effects have been the part of the disease with which I've most struggled. I suffer from both a bit of curvature and, more impactfully, severe venogenic erectile dysfunction due to Peyronie's. I have a lot to say here, and you will likely find that not all of it is particularly productive. This post is a long time coming and, as such, much of it is simply things that I need to get off my chest. To that end as well, I want to say thank you to all the members that make up the forum and are providing one of the few support groups for people with Peyronie's.

I think one of the toughest effects is the feeling of difference and isolation that this has caused in my life: 1) knowing that I will likely never meet another person in the flesh who has gone through even roughly the same experiences that I have and 2) knowing that most of the life paths I see my friends following and pursuing are so fundamentally, phenomenologically different from my own. People don't even know what Peyronie's is or recognize the life-ruining effects that it can provoke, especially in young men. And, because of this, we almost all have to suffer in silence. It's acceptable to complain about psoriasis or cancer and, because of their visibility in the public eye, one almost doesn't even have to complain to elicit sympathy. I would never wish to have either disease or minimize the horrendous impacts they can have on people's lives up to and including death. I simply want to point out a difference between diseases that are relatively talked about and accepted publicly and Peyronie's. The isolation is compounded by the fact that most men suffering from Peyronie's don't even want to talk about it themselves because they feel like it makes them "less of men."

In our society in general, so much of our identity is tied to sexuality that it becomes almost impossible to talk about sexual diseases seriously. Every time an erectile dysfunction commercial came on as a kid, my siblings would all kind of giggle about it and make jokes because somehow sexual dysfunction is the one thing that is too serious of an issue for us to talk about seriously. We simply don't know how to do it. Or, at least, it feels that way.

So, with that being one of the longest preambles of all time, let me tell you a little bit about myself and my experience with the disease.

Disease History
I am currently 27 years old, but have lived with Peyronie's for my entire pubescent life. I was raised by a single mother with no other men in the household until I was about ten when my mother remarried. As a kid, I used to "crack" my penis to relieve erections and obviously never talked to anyone about the habit (for more info see: https://melmagazine.com/en-us/story/penile-fracture-surgery-iran). As it turns out, this was actually causing scar tissue to form and ruining my penis from an early age. By the time I was probably 12 or 13, I could no longer get and maintain erections. This absolutely ruined my self-confidence in high school. I avoided relationships and, more than anything, just started to feel completely alone. I wanted to be like everyone else. I wanted to have sex. I wanted a girlfriend. It just wasn't in the cards for me.

I kept up a strong face through high school and really almost half of college. I wasn't the most popular kid in school, but I also wasn't the least. I played sports and, not to be vain, I am a pretty good looking guy. So, I did receive some attention from girls. I'd say that I'm pretty "normal" in that I'm a pretty extroverted guy that likes a lot of things most guys like. I had some awful, pretty traumatizing, and sometimes heartbreaking first experiences with sex (even though I knew my dick didn't work, it didn't stop me from trying because I wanted it so badly).

It was my sophomore year of college that I remember I just had a mental breakdown one day. I felt like all my friends (and I myself) cared mostly about sex, the one thing I literally, physically could not do. I felt like I wasn't even human: like I was missing this one all important aspect of my life. I might have been drinking, I don't really remember. I called my mom and just kind of broke down and told her that I couldn't get erections, that I was miserable, and how I needed help. A few days later, I got black out drunk and ended up crying on one of the dorm lawns at my school. I guess I called my mom and asked her to fly out. That started a long journey with doctors not knowing much about Peyronie's and trying to force diagnoses on me that literally made no sense.

At this point, I almost dropped out of school for a semester, but managed to hold it together by dropping to three classes.

Psychological Distress
Over the last decade, I went through hell with this disease. I am an extremely impatient and a fairly prideful person. It is so much harder to accept help than it is to give it. That's something we rarely talk about, especially as men. I remember being offended by the first doctor who wanted to tell me I might have low testosterone (which I do not). I remember traveling to different states to see specialists while I was still in school. I remember doing an experimental stem cell treatment before doing a summer internship. I couldn't work out afterwards for about a month and I lost almost 20 pounds. I remember how the first person to see my fully erect penis other than myself was a doctor doing a Doppler ultrasound and not my non-existent, first girlfriend.

Eventually, I got prescribed Cialis (first 5mg and later 20mg after the 5mg failed to do much of anything). I take this to this day and will have to take it to the day I die (barring some miracle treatment being discovered). Not many people talk about the unpleasant side effects (such as pretty much constant indigestion and the inability to eat food without water to help swallow), but I am more or less unbelievably happy with the results and wouldn't ever give up the drug. It's allowed me to have sex. It's allowed me to have one night stands. It allowed me to get my first girlfriend at the age of 21. We've now been together for 6 years.

All of this really f'~c<+d me up though. And, I'm just going to detail that a bit here.

• I have never really loved myself. I think I still harbor a lot of self-hatred and that's something I have to work on every day of my life.
• In college, I developed a pretty bad relationship with drugs that continues to this day. I couldn't have sex. I felt like I wasn't "man enough." So, I turned to drugs to fill that space, give me the dopamine that sex would, and give me a better social standing with my peers (I was replacing one edgy, prohibited thing with another). Around this time too, I started reconnecting with my biological father who is a poor drug addict and an alcoholic who basically just lives at the beach and values sex over mostly everything. I always thought about what I would give to be him. Drugs became a coping mechanism for me.
• I have a pretty unhealthy relationship with sex. I would almost say that it borders on an addiction. It's made things with my girlfriend tough to say the least. I've never cheated and would absolutely never, but have often felt like I want to sleep with every girl I see. I derive a lot of my self worth from sex as well, probably in large part because I couldn't have it for the first half of my adult life.
• I frequently struggle with the feeling that I'm just behind in life. I feel like I'm running a race and I didn't even get to start until everyone else had run their 12th lap. I have two step brothers and a full sister. The step-brothers are engaged and married. My sister is in a stable relationship, has known what she's wanted to do career-wise since she was about 5 years old, and definitely isn't as much of a shithead as I am. I feel this pressure to have my career sorted, know whether I want kids, know what I want out of life when I've spent the first half of the last decade just trying to integrate sex into my life as a human being. I've never told them anything and the last thing I want is for them to think I'm an immature, self-centered and privileged younger sibling who just doesn't have his crap together.
• I'm terrified and I don't totally know what to do with my current girlfriend who is older than I am, has been in multiple relationships before, and wants to get married and have a family. I, on the other hand, feel like a teenager in his first highschool or college relationship but with all the pressures of an adult (i.e. career, marriage, the rest of my life).

Where am I now
I think that feeling of being behind in life is really hitting me hard now again. I left my job about a year ago, tried to create a small business that failed, and am now taking a break for a few weeks while moving cross country for my girlfriend before looking for a new job. I've been so angry about all of this for so long and I feel like I've been looking for excuses or other things that are socially acceptable to complain about to my friends and family instead of my Peyronie's (e.g. my relationship with my father). Every time I get really drunk now, I end up just breaking down and losing it. I feel like I don't have the time to just take and explore life and sex and relationships and myself even. I feel like I've been a crappy  partner and that kills me because I do love my girlfriend. I just know that something needs to change. So, this post is a first step in that direction: confronting all of these feelings and finally saying why I'm so upset. I'm sure there's a lot of therapy to follow and a lot of bad habits to unlearn. I'm trying to stay sober and focus on myself for a bit. But, Rome wasn't built in a day...Hopefully, I can start to reclaim a little bit of control over my life from this disease.

P.S. I realize I didn't talk much about the physical effects of the disease and its progression/treatment. I have used traction (RestoreX), VED, PRP, stem cell infusion, medicines/supplements (l-carnitine, vitamin E, diclofenac gel, cialis, etc.) all with varying success. The disease has stopped progressing and the curvature may even be slightly better than before the traction + supplements. But, I still have to take Cialis. I'm happy to discuss any and all treatment information that other people might find useful. I just wanted to vent here and am happy to be a listener to anyone that needs to vent as well

[Pfract]

Hey man.... Welcome to the forum! Quite the life journey you describe there! Surprised that you did that to your erections when you were younger!? Sad...but... It sounds like you should seek a sex therapist to address some of The underlying emotional issues you are having on top of Ed. Something like betterhelp comes to mind, but there are others. (www.betterhelp.com)

As for the ED... if the medication is working great and the disease is not progressing.... Then that's very good. Keep in mind that there are treatments out there, when pills, no longer work!

Please stick with us



 

[Mikel7]

I agree with Pfract that possibly you need some emotional help/assistance. I would also add that alcohol is a great depressant and the drugs should stop as it wont contribute to your overall health.

We all go through times in our life when we need to do an assessment of where we are - then make the necessary changes . You are at that crossroad now. Take the steps needed to improve yourself and your life. Be encouraged as the longest journey begins with the first step.

[user-b348fc61]

Thank you both for the replies! I just signed up for betterhelp per Pfract's recommendation. I'm looking forward to the long journey ahead

[Mikel7]

You are going to make it through this!!