New member -- feeling depressed

[oblw]

Hi. I was diagnosed with a minor (and I think unusual) form of Peyronie's about 4 months ago. In my case, I do not have a severe bend to my penis. It is curved, but not much more than regular congenital curvature for average penises. The problem for me is that even though I don't have a problematic curve, the subdermal tissue pain is quite severe any time I attempt penetrative forms of sex.

Oral sex and masturbation still feel normal, but any sort of penetrative sex creates either a mild tightness and discomfort along the shaft of my penis or else (more often) a truly painful feeling.

I have had problems with abnormally low sex drive and discomfort during penetrative intercourse for about 5 years, but because I did not have an unusual curve in my penis, I never thought to even ask a doctor about it. I figured it was just my own anxiety combined with life stresses. While I'm sure that stress contributed to making it worse, now I also know that there has been a physical cause, and that I haven't been doing anything wrong during sex to make it painful, but instead it's just this biological problem I have.

My urologist has not given me much hope for being optimistic. He has suggested for me to take high doses of vitamin E and to avoid having penetrative sex until my next appointment with him (in a few months). I am fairly young for this disease; I'm 29 years old. I've never had any significant trauma or harm to my genitals, so the urologist thinks that it is actually something I've had since birth, but that the tissue damage to the tunica albuginea is just becoming worse over time and that's why it only started causing intercourse problems over the past 5 years or so.

He says that since I am young and very healthy aside from the Peyronie's problem, that things like surgery or injections that have some risks with them are not a good idea and he doesn't recommend it for me. Basically he said if the vitamin E doesn't help (which statistically it looks like it doesn't work in a majority of cases) then the only thing to do is basically avoid penetrative sex and hope that the degree of damage lessens naturally over time, with no guarantee that it would.

I've also consulted my regular doctor about this during a physical exam, and her opinion was basically the same as the urologist's opinion. She said I could seek a second urologist opinion if I wanted to, but that likely I was not a candidate for any kind of surgery or injection-based treatment.

It leaves me feeling incredibly depressed. The prospect of never being able to have penetrative sex again is very saddening and bleak. And even if I could personally be satisfied with other types of sexual contact, I now have all kinds of extra anxiety and depression about how I would ever meet a new girlfriend and come to the point where I could trust her to talk about it.

In modern dating, sex is definitely an expectation made by both men and women. If you seem to be clicking with someone and you don't have sex within the first few weeks, the other person takes it as a sign that either something is wrong with you or else you're not interested. But at the same time, revealing a detail that is so medically personal as having Peyronie's is not something I could ever do with someone I've only known for a few weeks. I have barely even told any of my closest friends or family. I can't imagine telling someone I don't trust, and how can you possibly have that kind of trust with someone you've been dating for only a few weeks or even a few months?

It just seems like a Catch-22. You can't tell someone about Peyronie's if you don't really, really, really trust them. But you can't make it to the point of a dating relationship where you really, really, really trust someone unless you establish a sexual relationship with them and talk about sexuality and sexual compatibility.

And to make matters worse, a lot of women would not want to give up penetrative sex (very rightfully for their own personal preference). So what would it mean for a relationship? Either they eventually harbor resentment towards you for your physical inadequacy (even if they start out as the most devoted, caring, loving partner, the resentment and desire to find sex elsewhere will always grow -- this is what happened with my girlfriend in my most recent break up). Or else you have to have some type of open relationship where the female partner can go and seek other males who are capable of providing the penetrative sex experiences she wants?

The few friends I have spoken to have not been helpful at all. They basically act like this is not a real problem and that I am not entitled to feel bad about this. They say things like, "Well maybe you'll just have to become really good at using sex toys.." and then they have no clue why it upsets me and why I see that as a horribly depressing future for myself.

Right now I am OK with being single and focusing on myself. But I know that the loneliness will eventually become unbearable and I will feel desperate for intimate companionship. I'm terrified about missing out on having a fulfilling sex life, about having all sorts of regrets and resentments, and about never being able to meet a well-matched woman and find a way to explain this. I just can't do it through the regular dating scene because that kind of dating doesn't give you any real trust or understanding about the true character of the person. You can only get that through time, and you can't get that time unless you're both happy with the sex you are having. I don't have very many female friends and all of the hobbies I enjoy (playing squash, playing chess, playing complicated board games, and computer programming) are heavily male dominated, so the chances of meeting a female friend and getting to know her over years of time before anything romantic developed is very, very low.

How do I cope with such a bleak outlook?  

[Stabler]

Hello Oblw,

First and foremost, welcome to the forum.

We have a great deal of helpful information here that I will provide links for.

New Forum Rules: (Please go over these)
Forum Rules and Member Rights - ALL MUST READ AND FOLLOW - Peyronies Society Forums

Survival Guide:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

Urologist List:
https://www.peyroniesforum.net/index.php/topic,4063.0.html

The Survival Guide is a great place to look and see how to live with and go forward with Peyronies. It is my opinion that you need to seek a new urologist, one that specializes in Peyronies (they all don't do this) this is a MSUT for proper treatment. The urologists list I have provided is broken down by states or regions so look and see which one may be close to you and set an appointment.

Now, as for the "relationship" aspect that you are dealing with. I am sorry that your girlfriend could not stay and support you however that being said, she was not the right girl for you. I understand your concern or fear of trying to explain this to a new partner as will many of the members here however...... if it is the right girl it wont be as difficult as you think. Now I am here because my guy has Peyronies, he told me right away, he wanted me to know what it was and be able to learn about it, and I am, that is how I became part of this great group. What I can say to you is, this will make you choose a better quality of woman, because you will be looking for someone that wants to have a relationship with you and not just sex. I agree that sex is important to a relationship but it is not everything. As you stated there are other forms of intimacy that can be done, actual intercourse is not the only way to satisfy your woman, and finding other ways will help bring you closer.

With that, if you find a urologist that specializes in peyronies and start proper treatment, your pain could be resolved or at the very least controlled. I cant stress enough the importance of the urologist that you see. (USE THE LIST) the fact that your current urologist doesn't give you hope, and tells you to take Vitamin E and avoid sex as being your answer to this is absurd and not proper information (to his credit he doesn't specialize in peyronies) but none the less you need someone new.

Please look around the forum boards and read our members posts, ask questions, everyone here is very willing to help, all the men here know exactly how you feel and what you are going through. Do not let this control you, take the proper steps to learn about this disease from the forum.

We are here for you, use us!!!

Hugs,
Mamma

[kuaka]

Oblw,

Any friend who says you are not entitled to feel the way you do is not a real friend.  Feelings are what they are.  Nobody needs any entitlement to feel a certain way.  You definitely have a physical problem.

I would recommend that you read up here on various non invasive treatments.  Anything you can do to help soften the tissue which is impairing your function would be a candidate.  Many of the things a lot of men find useful are supplements you can get at any GNC or fitness supplement store.  

While you are "fortunate" that the bend is not excessive (yet), pain preventing function is very real and I recommend you find a Peyronie's aware urologist.

My personal mixture of treatments at this time seems to be helping...but I have currently around a 40 degree bend with which to deal.

I am using Pentox/Cialis (out of Cialis until I get $$), Ubiquinol, B6, D3, L-Arginine, L-Carnatine traction and VED.

kuaka

[oblw]

Mamma -- Thank you for the reply and for being so encouraging.

I will certainly give some consideration to seeing another urologist with a specialization in this topic. However, I do think from both my regular PCP and my urologist, they gave fairly comprehensive reasons for why my case will not be amenable to some of the riskier treatment options. And frankly, I agreed with their assessments. Some of the treatments they talked with me about carried risks of incontinence, urinary infections, and other issues. And I think as much as a lack of sex is depressing, I don't want to do any treatment that could make things worse. I'm so risk averse when it comes to that sort of thing that I won't even have LASIK surgery to replace my glasses.

I do think things are more complicated on the relationship side though. First, I should say a few things. Number one, I don't think there is anything wrong with a girl who is looking for sex, as long as she is clear about her priorities. There's no shame or immorality in that -- sex is a healthy fun thing and women enjoy just having sex (sometimes totally outside of the bonds of a relationship) as much as anyone else. I would never personally believe that "just wanting sex" means that a girl is someone "not good enough" or doesn't have a "high enough quality" for me. Lots of amazing, caring, loving, high-quality women also happen to sometimes just want sex, and that is incredibly normal.

So I don't think I share the same opinion about trying to look at Peyronie's as though it will cause me to seek out "better quality" women. A woman's choice to compassionately endure Peyronie's does not raise or lower her quality in my eyes: it's just a particular preference or willingness that she may or may not have.

I also want to say that even for myself the idea of "just having sex" sounds enjoyable. It's definitely something I want and it's a set of experiences that I think are fun, healthy, and enjoyable. Unfortunately I do think that Peyronie's effectively means that nothing like that will ever happen for me again, and that too is depressing.

I don't believe that there are "right people" for me (or for anyone). There are just people. Life is hard. Things are complicated. I don't like to try to sugar coat anything with kitschy notions of romance, or put a Norman Rockwell wallpaper over top of my problems.

By way of example, my most recent girlfriend was an amazing person. She survived through extreme hardship in her childhood and lost both of her parents within a single year in her early 20s. Despite emotional and financial setbacks, she went on to graduate school and she has a very caring and positive outlook. In fact, I can't think of anyone else I know of in my extended network of friends and family who is more earnestly understanding and caring. And yet, *even for her* the process of enduring my abnormally low libido was too much for her. No matter how much I explained that it was not due to a lack of attraction to her, she internalized it that way, and ultimately she felt that being in a relationship with me was inherently painful for her.

Now, I agree with you that this means she and I weren't "right" for each other. But I do not agree that finding the "right" person will make this disease any easier to explain. Especially as I get older, I just have certain rules for myself. And one of them definitely centers on how to develop trust with a relationship partner -- it's just not something that can possibly happen on the timetable that modern sexual relationships naturally develop. It's not an issue of the girl being "right" for me -- it's an issue that for any girl, even the most "right" girl of all time, I would not be capable of trusting her to the necessary degree unless I knew her a long time first.

Again, that is a *no matter what* sort of thing. Even if conversations feel easy and it just seems like we were made for each other, my personal belief is that such a feeling could just be infatuation, or it could be fleeting and totally change just a few months down the road. No one ever knows how it will work out. And as a result you have to be outrageously careful about explaining these kinds of things to someone you barely know -- and you certainly *should not* let your fleeting feeling of "rightness" be the reason why you open up prematurely about such personal details.

Anyway, I don't know if I am doing a good job of explaining it, but I think the problem is so so much harder than just finding the "right" person.

[Stabler]

Oblw,

I understand that you are in a bad place right now because of this, Please visit the boards and talk to the members. I understand (because I have talked with the other members) your  feeling of being consumed by the thought of how peyronies is going to affect your sex life, I cannot personally tell you understand this from your point, because I am a woman but, The men here will help you, please listen to them and ask their advice. I'm here to support the men of this forum, to learn, to help in any way possible so please feel free to ask me anything you like should you want/need a womans perspective, if you need to you can private msg me or send me an email, a lot of the men here do  

Hugs,
Mamma

[Jonbinspain]

My friend;

Trust me on this...find another Urologist!!  One who truly understands this disease. Vitamin E is treatment from the dark ages. It won't harm you, but it will do absolutely nothing for Peyronies!!  As for surgery, it is considered, by virtually all here, as the very last resort - and only if all else has fails.

You need to address the low testosterone problem. And you need a Uro who understands this disease. Look up Pentox, Cialis, ALC, l- argiine, etc. in basic terms, read here all you can. There is more accumulated knowledge about this diseease on this site than is possessed by 99% of Urologists!  

[wonderbread1662]

Hey oblw,

From reading these posts I can say that you have been given very good advice. You should see a specialist as soon as you can. I just want to recommend you take pentox as it got rid of almost all of my penile pain. It took the pain away for me in about three weeks but it can take upwards as 6 months to work. Not the cure you're looking for but I highly recommend you try it.