My life is a hell and I don't know how to cope with this

[Thisismyusername]

I really am in a bad place emotionally.  I'm 28 years old.  I met my current girlfriend when we were 27.  We lost our virginity to each other and shortly after I developed peyronie's disease.  Two months ago I had to move for graduate school.  My girlfriend and I met shortly after I had applied to graduate school.  I wanted a relationship my whole life and could never find someone.  I'm emotionally scarred by the rejection that I had when I was younger trying to pursue women.  I couldn't believe when I met my currently girlfriend that I had finally met someone who I could develoe the relationship that I had already wanted with.  Things were wonderful at first.  We fell in love.  But then I had to deal with the thought of moving for graduate school.  She is also in graduate school and this would keep us apart for up to 5 years.  I couldn't stand the thought of moving.  Now was the worst time to move.  I tried to come up with other plans for my life that involved us being together.  But my girlfriend didn't want me to change my plans for her.  She is the more practical one I guess.  

So I ended up moving and we are in a long distance relationship.  Meanwhile I have had constant pain while flaccid and a deforming penis for the past 6 months.  I am going through an emotional nightmare.  Our relationship has been under immense stress.  Sometimes it's hard to believe that things will work out when I developed this condition so shortly after we started having sex.  Relationships are a lot more emotionally intense than I thought that would be.  When I met my girlfriend I feel like I had my life together and just desperately wanted someone to share it with.  Now I feel like my life is in shambles.  I try to get through each day and I am still managing to function, but I am not happy.  In fact I'm not just depressed or anxious, I am deeply deeply traumatized by my recent experiences.  All my life I wanted a relationship and when I found one with a wonderful person it basically ruined my life and caused me immense pain and suffering that will last the rest of my life.  

I can't see how I will deal with 5 years of a long distance relationship.  I knew that I am not the type to have a long distance relationship because I want my girlfriend to be a part of my life and to spend all my time with her.  She is really the only thing I care about anymore.  Even if we can get through 5 years long distance, I will probably be miserable the whole time, and then what will happen?  The future seems very unsure.  

On the other hand I can't stand the idea of breaking up.  It's bad enough knowing that life circumstances pulled us apart shortly after we fell in love.  But it's even worse knowing that my penis is permanently ruined and it will be very very very difficult for me to meet someone else at this point.  I already have an extremely hard time meeting people who I am interested in, and an even harder time meeting someone with whom the interest is mutual.  Now I realize that relationships are even harder than I thought.  I am miserable.  I can't stop thinking about my two "options" which are 5 years of long distance, or breaking up with the woman that I love and trying to "move on" with a dysfunctional penis.  Both of these thoughts are unbearable.  I really don't know what to do.

I am deeply disturbed by what has happened to me over the past year.  I think about killing myself at least once per day, usually multiple times.  I feel like I don't want to live in this f'^+'ed up world where things like this happen to people.  And then I think about all the people who have it worse than me and that just makes me feel even more awful.  In many ways certain things in my life are good and I'm still absolutely miserable.  

If I break up with my girlfriend I'm afraid that I will have a coping with what happened to my penis during our relationship.  I know intellectually that it isn't her fault but I also know that if I hadn't met her or she hadn't been into rough sex I probably wouldn't have hurt myself.  I don't know how to cope with these thoughts sometimes, and they are obviously very distressing to her too.  She is a good person and I want to work through this all and be together.  To be honest, I will feel like a failure if our relationship doesn't work.  But other times I just think that I am a stubborn masochist for wanting to continue given the long distance.  

My girlfriend seems very defensive about her life plans.  It seems like she really has her plans for life together and I don't see how I fit in and I feel like she has a hard time changing them for me.  On the other hand I am basically willing to throw my life away to be together.  I guess this is also a problem.  But there are so many reasons why I want to be with her that I don't want to let things like this get in the way.  I don't want to be one of those people who just declares that it wont work and walks away.  Most people move from relationship to relationship.  That is not what I want.  I want to find someone and be with them forever.  The idea that that might never happen is disturbing to me.  

I really don't know what to do.  I have been crying violently all night.  I wanted to bother her and talk to her but it's the middle of the night so I'm venting on here to spare her.  But I really don't know what to do.  I don't know how I got into this mess.  I just wanted to find someone to love and be loved by.  I didn't intend to end up in a 5 year long distance relationship with a ruined penis.  I don't see a solution to this situation.  

[IhatePD]

Thisismyusername,

I have some thoughts for you but first, I think you need to get some counseling/see a therapist. You will be surprised how talking with someone about your challenges can help. You need to prioritize and set time aside when you will deal with the different issues you are facing. Kind of like putting each of them in a mental box and opening and dealing with one box at a time.

First, are you doing everything you can to fight your Peyronies Disease? Do you have a urologist that is up to date with Peyronies Disease? Are you taking Pentox, Cialis, L-Argainine, Acetyl L-Carnatine and CoQ-10? Are you using a VED and traction? If you aren't, do so ASAP so that you are fighting Peyronies Disease with everything you can. It's a battle. Make sure you start your fight now.

Second, long distance relationships are very difficult and five years is a long time. I speak from experience as I had one for three years while in college. The good part was that not chasing other women gave me time to focus on my studies. The bad part was that I missed out on meeting a lot of great women. The relationship eventually ended and I moved on. It is very difficult for you to see that right now as you are emotionally involved with your girlfriend.

Here is my logical reasoning. If you can take the emotions out of it, there are more women out there that could be a "perfect" match for you than you could possibly have the time to meet in your lifetime. There are more than 300 million people in the U.S. so that gives you about 150 million women. Lets say 20% are in your targeted age group, that gives you 30 million possible matches in the U.S. alone. If you met 1,000 women, do you think you could find 1 out of 1,000 that could be a possible match? With 30 million possible matches, 1 out of 1,000 would give you 30,000 possible matches. Is she really the 1 out of 30,000,000? There are many out there that can be your perfect match. This applies to everyone on this planet. I am not suggesting that you give up on her. I am merely pointing out that there are many more possibilities than you realize.

You appear to be overwhelmed. I understand that as this year, for the first time in my life, I became overwhelmed with all the different challenges I had to face. I needed to set my priorities and deal with them in the order that made the most sense. My Peyronies Disease was only one of them and what I did was put myself on the routine and supplements I suggested above so that while I fought my other battles, I was still fighting Peyronies Disease at the same time. I am now focused on my Peyronies Disease and I will win this battle because I demand it for myself. I accept no other outcome.

Everyone, there is a book written by Viktor Frankl called Man's Search for Meaning. He was a PHD, MD psychiatrist in the Nazi death camps and wrote of what he learned from his experiences and those of others.

EVERYONE -- READ THIS BOOK!

I will give you two quotes from it that have helped me (there are many more - you may want to use a highlighter when reading this book and write some down for yourself).

"When we are no longer able to change a situation, we are challenged to change ourselves."

"Everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given circumstances, to choose one's own way."

[Thisismyusername]

I saw a therapist once and it made me feel awful.  To some extent I have accepted the horrible things that have happened to me in life by now and having to tell someone else and see their reactions reminded me how f'~c<+d up and abnormal this situation is.  I don't possibly see talking to a stranger for an hour per week could possibly make me feel better.  One hour is nothing.  The stranger doesn't know me or truly understand the complexity of the situation.  It helps to talk to my girlfriend or my mom but not a stranger.  Besides, I am poor and a therapist is very expensive.  I have enough medical bills that I can't afford as it is just from peyronie's disease.  

In terms of treating peyronie's disease, I tried pentox for 6 weeks and it gave me horrible anxiety and exhaustion so i had to stop.  I noticed no beneficial effect.  I have been taking CoQ10 and L-arginine for months.  I haven't noticed any beneficial effect.  I am in pain all day long and it is driving me crazy.  I stopped having sex because sex made the pain worse.  I can't masturbate either.  I can barely touch my penis without irritating it, especially when erect.  Erections hurt too and irritate my penis.  Lots of people have told me to do VED but this will probably increase my pain, which is my biggest problem.  Lots of people have said don't stop having sex, but after sex my penis is irritated for days to weeks.  It's not helping my relationship to have a moment of pleasure with my girlfriend followed by 3 weeks of pain and isolation while she is in a different state far away.  It doesn't exactly foster pleasant feelings about her.  

I haven't had sex for months and fortunately the pain is improving, but it isn't gone yet.  I hope at some point it will go away and that I will be able to have sex again.  That day is a long way a way.  Perhaps in months.  Perhaps in a year.  Perhaps never.  

I am very attached to my girlfriend and feel upset that things turned out this way for us.  It seems wrong.  I know that life doesn't care, but this is just beyond anything I am able to cope with.  I want to be with her so badly but it seems impossible.  I don't have an outside perspective because i have no friends.  I only have my girlfriend and my mom to talk to.  

I am extremely scared of trying to move on and find someone else.  If I hadn't damaged my penis I would have a very very hard time doing it, but I think eventually I would move on and be ok.  But now I know that I am permanently damaged from my first relationship.  And not just physically, but mentally traumatized.  If I try to move on, I certainly can't do it while I can't even have sex.  And if things improve I will still have no confidence.  Despite all the rejection I faced with women before, at least I know that my sexual functioning was impeccable and once I found someone who wanted me they would be satisfied by me.  Now I feel pathetic.  With my current girlfriend at least I know she will accept me and she saw the way I was before this happened.  She fell in love with the me before peyronie's disease.  Other women will never know that me.  

[james1947]

 Thisismyusername

I would like just to add that 6 weeks on Pentox is not enough for most of us to see any results. Some are reacting fast, for some it takes some 6 months or more.
In my opinion you should see a top Peyronies expert as soon as you can.

James

[Litani]

I had pain for 6 months. At the time I did not think it was going to go away.  I really know what you are feeling. At some point the pain will stop.  You have to hang in there. I know it is not easy.

[Thisismyusername]

James, with the side effects I had, I cannot stay on Pentox for that long or not only will be sex life and happiness be ruined, but also my ability to function and get through each day.  At least right now I am still succeeding in school.  

I have done my best to find doctors who can help me.  I've seen 4 different urologists.  The first 2 were useless.  The second had experience with peyronies and he prescribed me pentox.  But he was worthless for the pain.  Then I moved and found a new one who is up to date with all the current treatments.  However there was basically nothing  he could do to help.  He doesn't have any treatments for the pain, and he thinks that treatments besides oral meds for peyronie's will likely worsen the pain.  I agree with him.  

I have been waiting to see a pain management clinic for 2 months now.  At first they said in 5 weeks I might be able to get an appointment.  I called back 5 weeks later and they said maybe in 6 weeks I would be able to get an appointment.  We'll see if I ever get one.

Doctors in general are more or less useless.  I feel like despite all my attempts to get help I have basically just received a bunch of bills and side effects with no useful beneficial treatments.  I don't think anyone knows how to treat pain.  I am so frustrated with the treatment I have received.  I feel like nobody cares.  I am basically left to suffer on my own.  I used to think that medicine was very advanced when I was younger.  Now I realize that there are a few conditions with very very effective treatments, but besides that, basically nobody can do anything.  Doctors do not give anyone individual attention.  

Tonight the pain got a lot worse for some reason and I feel like I am going to f'^+'ing lose it.  At the very least I want the pain to stop.  Please, let it stop.  I can't live like this.  

[james1947]

My opinion about doctors is not different than yours and it based on my own experience in many subjects, not just Peyronies.
Regarding Pentox, you have tried to take just one during breakfast for a while? I had also very bad side effects, for this reason I reduced to just one 400 mg pill in the morning. After some two weeks the side effect have gone (almost so I increased to two and after a while to 3. Right now I am back to 2 and I think I will reduce to one because the Pentox is weakening the immune system and I have flue every two three months. The flue is not passing just if I stop Pentox for some 10 days.
I hope someone on the forum will jump in regarding pain treatment as myself don't understand in that too much.
Just keep hang on, in almost all the cases the pain is just going away from itself.

James

[Thisismyusername]

I may try starting with 1 pill and increasing the dose slowly.  Do you feel like pentox has really helped you?  I am not that optimistic about it.  

Also, I don't know who is in charge of this forum, but I would strongly suggest putting a section for Questions and discussion about pain related to peyronie's disease.  It seems that there are a good number of people on this website dealing with chronic pain while flaccid.  For some of us, like me, pain is by far the worst symptom.  Right now my deformity is relatively mild, but the pain is basically ruining my life and has ended my sex life.  

[james1947]

I had no pain, but many on the forum witnessed reduction or stop of the pain using Pentox.
Regarding pain, check out the bellow links:
Dealing with pain from trauma - Peyronies Society Forums
Also the board bellow have a few pain related topics:
Open Questions or General Comments (that won't fit under any other topics) - PDS - Peyronies Society Forums

Regarding a board dedicated to pain, the subject will be discussed by the Administrator and moderators.

James

[LWillisjr]

There are a couple us 'admins' that I suppose are the closest thing to having someone in charge  

And I would be open to starting a board devoted to pain relating to Peyronies disease. The problem I have is that there are several people posting lately about pain while flaccid or hard flaccid symptoms which I believe has little to do with Peyronies Disease. Pain from Peyronies is generally caused when you have an erection and the tightness of your erection is trying to pull or stretch the scar tissue. I know for me personally when my Peyronies was at its worse, the harder me erection was the more pain it caused. The pain did subside after a few months which is farily typical of the acute stage of Peyronies Disease.

Les

[james1947]

Very much depends on how you define Peyronies.
Different people have different symptoms.
Is occurrence of plaque is a must to define that is Peyronies?
Or must to have deformity? (I had deformity before can feel any plaque)
Or must to have pain? (The only pain I had is an uncomfortable feeling for three days after I injured myself, forced bend while very strong erection).
Maybe all this issue of "hard flaccid" is a Peyronies symptom? (I had hard flaccid for almost 8 months then disappeared. Sometimes I have it back for a few days)
Is ED a "must" with Peyronies if it is not treated and after a certain period of time?

James

[Thisismyusername]

LWillisjr,

I understand that you don't consider these symptoms to be peyronie's symptoms, but from my personal experience, I developed peyronie's disease shortly before I began to have chronic pain while flaccid, urinary pressure, hard flaccid, and other pelvic pain.  I know that these symptoms are not "classic" peyronie's symptoms, but there is just no way that they all developed simultaneously without being related.  Before I got peyronie's disease I never had hard flaccid or pelvic pain.  Personally, my flaccid penis hurts the most in the area where my plaque is developing, so I know it is at least related to the plaque.  There are a significant number of others on this forum who have had similar experiences.  It seems cruel to me to deny those of us suffering from these problems a place to talk about our issues just because they are not "classic" symptoms.  

One thing I've learned about peyronie's by viewing this forum is that the reality is not at as simple as the "classic" description, which is a curve, pain on erection, palpable plaque, stabalization after 6 to 18 months, and possible development of ED.  For those of us suffering from chronic pain it is very debilitating.  Personally, of all the possible outcomes of peyronie's disease, to me, chronic pain is the worst possible outcome, followed by ED, followed by deformity.  At least a deformed penis can still give you pleasure.  At least ED doesn't hurt.  I can't even have sex because the pain is so bad, so not only am I effectively impotent, but I am suffering every single second of every single day.  A section for "pain related to peyronie's disease" would be useful for people with classic symptoms such as pain on erection as well as the less common chronic pain.  

[rellisacct]

Actually I have to completely agree with "Thisismyusername" on this particular subject. I never once had hard flaccid until after injury and scarring began to occur. For me, there was a perfect correlation between development of scarring (Peyronies Disease) and hard flaccid, so in my opinion, these can go hand in hand but not in everybody's case. Although I don't have any pain while erect, I would definitely lean towards there being a correlation between scarring (Peyronies Disease) and pain if the two began occurring together. The odds of random pain or random hard flaccid occurring at the same time as symptoms of Peyronies Disease developing, without there being a correlation, would be astronomical.  

[MattFoley]

I may try starting with 1 pill and increasing the dose slowly.  Do you feel like pentox has really helped you?  I am not that optimistic about it.

Dude, I don't want to read that. You need to be taking it 3 times a day MINIMUM!! With your doctor's permission, you can take up to 2,400 mg. per day. Unless you have some type of contradiction issue with Pentox, you need to be on it unless of course you want your penis to keep hurting and/or you think Peyronie's is a fun disease.

Bro, this sucks but you have to get up every day with a battle plan and fight back. The inofrmation you need is in these forums. Consider these and research them:

(1) VED every day
(2) Traction every day
(3) Pentox every day
(4) Raise your testosterone beyond what is normal for your age.
(4) NO SMOKING EVER!!
(5) PRP treatment
(6) Stem cell treatment

Get on it, bro!!

[james1947]

Matt

Thisismyusername have very bad side effects while taking Pentox. This is the reason that he will do it slowly.
Myself reduce it to 2 per day because I can't sleep at night and I may reduce to 1 because from the time I am on 3 per day I have flue 3, 4 time a year. Remember that Pentox, even is the best med I know for Peyronies weakening the immune system.
I am with you on all the other advice's

James  

[Thisismyusername]

Matt,

I appreciate your advice, but I really think that VED and traction will worsen my chronic pain, and I had side effects from taking Pentox that weren't tolerable.  I'm going to try to work up to 2 pills per day but start with 1 per day for a while.  In one of the major Pentox studies, 2 pills per day was the amount taken.  I may try to do something to raise my testosterone levels though.  My urologist had my testosterone checked and found it was within "normal" but from checking on the web it seems low.  Two different labs checked my total and they found it was 316 and 376 (I'm not sure why the difference) and my free was 11 (only checked by 1 lab).  I wonder if my testosterone is so low because I can't have sex or masturbate anymore due to the pain.  I had an extremely high sex drive before peyronie's and now it is very very low.  Since I can't have sex and I already sleep over 8 hours a night, the only things I can do to increase my testosterone are diet and exercise.  

[MattFoley]

My apologies on that. I missed the part where you said you are struggling with Pentox.

As for your testosterone, my level was around 395 & they tried to tell me that was "normal". I told them where they could stick that "normal" range and insisted on testosterone shots. Now, my libido is sky-high. Not only do I want to have sex with every pretty girl I see, but I also want to impregnate them. Obviously, not a reasonable outcome but hey, there it is. It's also done wonders for my energy level and my physique.  

[LWillisjr]

There are a significant number of others on this forum who have had similar experiences.  It seems cruel to me to deny those of us suffering from these problems a place to talk about our issues just because they are not "classic" symptoms.  

We actually are considering adding a board devoted to pain on the forum. I didn't mean to come across as cruel and have much sympathy for those dealing with chronic pain. It is true I don't consider this classic Peyronies, I just know there are other forums on the internet devoted to only hard flaccid issues. I understand we need to acknowledge any pain associated with Peyronies disease.

Les

[Noway]

Thisismyusername

 there is always someone worst off then you crying about the situation will do nothing ive been there. Go see a peyronies disease specialist and work it out best you can thats all you can do. Find what works out for you.

[NeoV]

Thisismyusername,

I understand your pain very well, since I just started graduate school and ended a relationship that failed sexually and emotionally completely. I'm almost 27. I had loved her and conceived her in my mind for years.  So much pain and so many tears I shed. She abused me emotionally and finally started to attack me. We started dating for the second time in January, and just just kicked me out of our apartment 2 weeks ago, right before grad school started here in Tokyo. I've been basically homeless until last Thursday.

I was left on the street in the rain with all my belongings scattered and a giant mirror shattered on the street that I had bought from IKEA. Food on the street too, just terrible. I've been living out of my suitcase at various hotels for the last 2 weeks, all the while in pain from peyronies. Finally now, I am in an apartment I just got here right next to my grad school department building.

I've gone through absolute hell since January. With the disease, with her, just everything. I lost so much that I finally stopped caring in a way. A week ago I remember crying so hard I couldn't breathe. I got dizzy and collapsed. I've never hated my own body and personality so hard.

I am still finding the fight difficult, but I somehow feel at peace right now. It also helps that I'm studying and researching sexual violence, since it puts me in perspective. Rape as a weapon of war has become more common since the 1990s, with worse things appearing now like the weaponization of HIV in conflicts. It's beyond one's emotional grasp. I read about it now and It breaks me. But at the same time it makes me realize how lucky we are.

Even a man without a penis can be sexually successful, and could easily be successful in life. Your girlfriend needs to understand your situation. And I'm sorry to say this but you have to try VED. I am in an inflammatory stage too, but the worsening of the disease depends on many factors. You need to try it, and your girlfriend needs to somehow understand. My girlfriend didn't understand and would not listen to a word I said. It finally hit me, that she simply didn't care one way or the other. People do not have preferences or judgement on your problems beyond your own responses to them. If you can accept your peyronies.. no scratch that, if you can commit to your peyronies then she will accept it (you ultimately). If she does not accept it after you have, then she is not right for you and there is simply nothing you could have done.

While sympathy is crucial in a successful relationship, you need to learn to accept your position somehow. It needs to be established that you have an injury and a real issue, and that you are now dedicated to fixing it. All the fighting, trying to beat it or be normal simply won't work for me anymore. But I can find some peace in 100% commitment. Remember that you are in the process of dealing with it.

I actually did meet a girl in my program here during this whole mess, a sweet girl  (also Japanese) who was willing to give me anything sexually. We tried a few things but in the end I decided I didn't want to do it. I was not interested in her that way but also didn't want to risk more injury. I then told her about my peyronies, and told her that I really can't be having sex now. I even told her I was getting a VED and all the insane details. She accepted it all and just agreed and smiled and at me, saying she'd always be there for me.

I've said it before, but in real love, or in real adoration (what most of us want), physical or functional deformities can be overlooked, and can even become endearing. If you have ever loved or burned for someone before, you will know this. You will forgive their anything. The same can and will be true for you. Accept and commit to it, even superficially, if anything, for her and for others rather than for yourself. We must do this in all relationships. We may not have confidence, but we fake it or at least display it at times for the well-being of our loved ones. Like a father to a child.

Do not give up on yourself. Improve other areas of your life and hit the gym. Take things slow.

You are not responsible for this, you are innocent. But more importantly, you are committed to yourself.

-V

[east side swiss]

I've said it before, but in real love, or in real adoration (what most of us want), physical or functional deformities can be overlooked, and can even become endearing. If you have ever loved or burned for someone before, you will know this. You will forgive their anything. The same can and will be true for you. Accept and commit to it, even superficially, if anything, for her and for others rather than for yourself. We must do this in all relationships. We may not have confidence, but we fake it or at least display it at times for the well-being of our loved ones. Like a father to a child.

Do not give up on yourself. Improve other areas of your life and hit the gym. Take things slow.

You are not responsible for this, you are innocent. But more importantly, you are committed to yourself.

-V

thank you for that..

..you just took my lonlyness away for a minute

[Cal30]

NeoV. Very awesome bit of writing there!