Dating with ED and Peyronie’s disease?

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Zeckelbaum

Hi guys

Just wondering if any of you who have tried dating who have this disease have any tips. When do you tell the girl? Are many of them accepting of it or is it a huge turn off? Do you have to lower your standards?

I'm 28. Was in a LTR from 22 until recently. My penis broke when me and my gf were having sex aged 23 so I've been dealing with it 5 years. She stayed with me because she loved me. I am afraid to try dating again in the future as sex and attraction are key to falling in love.

I am unable to get more than a semi erect penis even with all the cialis in the world. I can have sex but due to the poor EQ it's not exactly
Enjoyable and makes me feel emascualted.


Any tips greatly appreciated :(
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

TDix

Have you gone to a specialist?  If not you should.  I will say that even though I have been happily married over 20 years, if I was single with this condition I would do all I could to correct the issue, as I have even being married for so long.  If a woman is attracted to you and you show her your true self, damaged or not, if she isn't accepting then she isn't the "one" if you get my drift.  As you get older you will understand this more.  We are all damaged in various ways, and it's those who accept that in you that you should stay close to
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

NeoV

Attraction has very little to do with your actual penis and how you have sex.

The hottest and greatest women I've ever slept with and been with have all been after Peyronie's. Tell them and don't make it a big deal, simply smile and say "I have to be careful, I injured my dick."

Your energy, mood, and point of awareness is what keeps women with you. I tell random girls I have Peyronie's and it doesn't stop me from bringing them home or having wonderful relationships with them. Women can adapt to you, and will take on your emotions and even sexual preferences to a large degree.

As weird as this sounds, sex and attraction are not actually the same thing.

I have a few girls who would stay with me even without sex (they tell me this). They like the vibe, mood, and energy I provide them. Even doing limited sexual things is fine if you understand how to go about this.

Zeckelbaum

Quote from: TDix on July 09, 2019, 05:10:46 AM
Have you gone to a specialist?  If not you should.  I will say that even though I have been happily married over 20 years, if I was single with this condition I would do all I could to correct the issue, as I have even being married for so long.  If a woman is attracted to you and you show her your true self, damaged or not, if she isn't accepting then she isn't the "one" if you get my drift.  As you get older you will understand this more.  We are all damaged in various ways, and it's those who accept that in you that you should stay close to

I went to a "specialist" who didn't even know what Pentox was. I knew far more about the condition than he did. Was a huge waste of money.

Then I tried another specialist but he didn't believe pentox worked so wouldn't prescribe it. I haven't been back since given there seems to be no way to cure this. I mean I could go back again and probably will now I'm single but what has any specialist ever done for anyone on this forum? Aside from prescribing you with the meds you are after they seem not much help.  
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Zeckelbaum

Quote from: NeoV on July 09, 2019, 05:30:03 AM
Attraction has very little to do with your actual penis and how you have sex.

The hottest and greatest women I've ever slept with and been with have all been after Peyronie's. Tell them and don't make it a big deal, simply smile and say "I have to be careful, I injured my dick."

Your energy, mood, and point of awareness is what keeps women with you. I tell random girls I have Peyronie's and it doesn't stop me from bringing them home or having wonderful relationships with them. Women can adapt to you, and will take on your emotions and even sexual preferences to a large degree.

As weird as this sounds, sex and attraction are not actually the same thing.

I have a few girls who would stay with me even without sex (they tell me this). They like the vibe, mood, and energy I provide them. Even doing limited sexual things is fine if you understand how to go about this.

Interesting and refreshing perspective, gives me some hope at least. How bad is your Peyronies are you able to achieve a proper erection? I can't imagine being so casual about it as to say go easy etc because it would be abundantly clear it was broken almost immediately


The way I used to date was quite sexually based. I would always act very confident and try have sec with the woman as soon as possible. If not the first date then the second or third. That style seemed to work but guess I need to adapt away from that now


I really do admire your ability to be so confident in yourself man. I hope I can learn to be like that. I was before but truth is now I'm scared to try to date like this.
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Hawk

Quote from: Zeckelbaum on July 09, 2019, 05:50:40 AM
I went to a "specialist" who didn't even know what Pentox was. I knew far more about the condition than he did. Was a huge waste of money.

The 1st thing you should have read is the Peyronies Disease Survival Guide  Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
It encourages you to take studies on the PAV cocktail with you on a doctors visit and provides links.  You should be prepared to discuss and offer the studies without being overbearing.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Stabler

I agree with NeoV.

I have been with a man that has Peyronies, that is what brought me to this forum, he told me from the beginning and I had no issues with it. He also had ED,  this also was not an issue. we worked around it and had a very good time together and still see each other now and then. Your attitude is everything in my opinion.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

TonySa

It seems you have both peyronies and ED?  If you've failed all treatments for ED (from a specialist), you could consider an implant. Which will reverse both conditions.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Zeckelbaum

Quote from: Hawk on July 09, 2019, 09:10:20 AM
The 1st thing you should have read is the Peyronies Disease Survival Guide  Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
It encourages you to take studies on the PAV cocktail with you on a doctors visit and provides links.  You should be prepared to discuss and offer the studies without being overbearing.

Printed a study for the first specialist but he was old an arrogant and I was only 23 and he's like "don't believe everything you read on google I've studied for years I know what I'm talking about". Nasty person all round tbh. Second guy was more understanding and says he's read counter studies that says it doesn't work and therefore his position is he doesn't prescribe it.  I could try someone else but would need to travel - my country only has a population of 4million so not an abundance of specialists

I take a lot of coq10 and arginine etc in an effort to make
Up for no pentox
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Zeckelbaum

Quote from: TonySa on July 09, 2019, 02:42:40 PM
It seems you have both peyronies and Erectile Dysfunction?  If you've failed all treatments for Erectile Dysfunction (from a specialist), you could consider an implant. Which will reverse both conditions.

I don't have peyronies in the traditional sense. I don't have a bend that progresses. I have a half pea sized plaque, hour glassing and hard flaccid etc. my shaft can get hard (despite being structurally weaker due to indentation on the top that's a few inches long and about a milimrtre deep and the scar tissue lump on the bottom.

My main issue is my glans are completely limp no matter what unless in a ved. I understand that an implant has no impact on glans is that correct? So I haven't considered it as it won't fix that issue
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Hawk

Quote from: Zeckelbaum on July 09, 2019, 04:44:54 PM
My main issue is my glans are completely limp no matter what unless in a VED. I understand that an implant has no impact on glans is that correct? So I haven't considered it as it won't fix that issue

That is correct.  It will give you a rock hard durable erection but not inflate your glans.  Dr. Eid does do collagen injections into glans to plump them out BUT The first series of injections gradually dissipates after about a year.  The second series lasts a little longer if I remember correctly.   it is NOT covered by insurance.  He has a section on his website about it.  The improvement is significant but not amazing.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Zeckelbaum

Thanks. I'm also worried about the mileage of an implant given I'm 28 and they only last about 10-15 years. Needing possibly 4-5 implants over my life my dick would be so beat up it's not funny from all the surgery  
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

NeoV

The glans not filling out is something that must have an answer. I know I have read about it before. When you remove the VED, the glans deflates?  

Zeckelbaum

Yep! Inside ved is the only time they will ever get hard. Been trying to find an answer for years :(
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

NeoV

Does it not fill out at all, or does it fill but remain slightly squishy?

My glans got softer after a kind of priaprism six years ago and due to VED itself. It still gets hard but is a bit different.
I have heard of cases in which it simply does not inflate at all though, and I assume that's what you're referring to.

I would still get out there and meet women and simply do my best to own the issue. Maybe even tell her you talk to other guys with similar issues trying to figure it out and it's now your latest hobby, etc. As men we are very quick to think our body and penis matter to a woman, but what make a woman aroused and wet is actually you emotions and energy. Some women talk about how they are attracted to a man's body or penis, but that is only assuming his energy is there.

In general terms, a woman's sexual value is explicit, while a man's is implicit. Furthermore, a woman's sexual value is inherent, a man's is acquired--via his own will. Every time you try deny this, women will punish you.


Hawk

If the glans is getting fully engorged inside the VED then the answer is there is not enough constriction by the bands to hold the blood.   As I stated before there are two approaches.
1. Tighter band
2. Two bands, one slightly in front of the other.
3. OR maybe even two tighter bands


You should only be using bands for sex however other than trying them for a few practice sessions.

The majority of blood drain happens through veins in the top of the penis.  Those veins are much closer to the surface than the arteries.  some rings/bands are not round but rather shaped to put more pressure on the top than on the bottom where the urethra runs.  You might have to experiment.  With different systems, Over the course of almost 15 years, I have tried nooses, bands, rings, and did so in combination with Arginine, Citrulline, Viagra, Arginine plus Viagra.  

If you could have any hope of getting an erection with oral meds and supplements a good "cockring is a pliable mental cockring shaped like a U with a bend /dent in the top.  It is some kind of soft metal that can be somewhat shaped and has a crossbar that attaches to the bottom.  I forget the brand.  It cannot, however, be used with a VED and must be used with oral drugs/supplements.  If you cannot get at least a borderline usable erection with oral meds it will not help.

Have you tried injections?  I am not an advocate but IF you cannot use your penis it is worth a try.  There comes a point for most men when they think:
Injections have some chance of causing or worsening y Peyronies Disease.
I do not want to chance of making my penis worse
But wait, I can't use it at all as it is
If I can use my penis a hundred or more times with injections isn't that better than saving a penis that I can never use.

I would also consult with a Doctor like Dr. Eid.  He is a caring doctor that will not BS you.  If he can't help he will tell you and he likely can.

PS: Do you actually live in New Zealand or is that bogus?
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Zeckelbaum

Hi all

To answer all your questions, yes I am actually from New Zealand so I don't have access to people like dr eid or the array of specialists a large population supports.  My glans stay completely soft even with all the cialis in the world. Prior to my injury I would sometimes take cialis for fun and my cock would be rock hard and I would wake up with erections so hard they could drill through concrete. Now my morning erections, if I can ever get one, are poor. If you think of your penis as a balloon and there's a spray gun spraying in liquid it would only spray in maybe 30%. So even the shaft will be very poor for a nocturnal erection and the glans get zero. On some occasions I can get the shaft reasonably hard myself, not as good as pre injury, but the glans absolutely nothing.

Anyone know more of the science behind it all - why is it that inside ved blood will be drawn into my glans but otherwise I get absolutely nothing. I can't use a coxk ring without a ved to get an efection unfortunately because the glans will be completely floppy.

Perhaps I don't have peyronies because I haven't got any worse curvature and while I have some pain after ejaculation or a long erection I don't have pain in general like some dudes get sitting down.

I will try two coxk rings if I can load two over my ved. Haven't tried a metal ring yet - hoping I can get a workable Solution without metal though as it's risky. I have not tried injections due to the risk but suppose I could give it a go.

Neo I get your overall point and watched your video on tokens but I think sex may be a bit different since it releases bonding chemicals I think it's key to a successful relationship.

Open to do anything to fix my issues, here is what I currently do and take but open to anything else:

Supplements I take are arginine coq10 l'carnitine horny goat weed and I have ordered some d3. I take cialis 20mg every couple days. Diet is Mediterranean based anti inflammatory but I haven't cut out carbs or tried to fast as I haven't seen anyone cure with those. I lift weights so need a decent calorie intake.

I use ved every day on old mans routine and have added an hour of heat therapy per day and ten minutes of manual traction

Next I plan to try a cycle of testosterone to see if high androgens can help healing. But any other ideas I'm Open, desperate for improvement been 6 years and I've got nothing :(

28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

NeoV

You don't need to sleep with a 10/10 girl to become attached, in love, and obsessed with her to the point of madness. A 10/10 man is the same. A girl can still bond and become deeply attached. Sex is more about validation than chemicals, yet it doesn't need to really take place or take place in any perfect way to achieve this. A 10/10 man to a woman is not related to his looks very much as you know.

Pfract

Zeckelbaum:

man.... it is very simple, yet complicated at the same time. Heres why: you say you broke your penis... as in penile fracture while having sex? if that is correct then....

once you damage your penis with a fracture, your condition wont improve. quite the contrary as time goes by. You should get an utlrasound evaluation, hopefully erect, to assess your blood flow, deformities, and to check for plaque or not. Then, you try pills, which you already do. Next you hop on the VED. You can combine pills + VED. If that doesn't work, then you can try injections next. Theres caverject, bimix, trimix and even quadmix. You may or may not want to do injections, as there are some risks to worsening your condition, but you do have that possibility.

Next, if all that doesn't work out for you... i am sorry but your next step is a implant. Wrap your head around that. It is not as bad as it seems, and you have plenty of success stories here that give you a glimpse of how it is.

Also... what exactly have you read on ED? how far are you willing to go on this?

Zeckelbaum

It wasn't a penile fracture in the sense there wasn't a sharp pain and excessive bruising etc. she was on me on a weird angle coming down on the side of my cock and it was slightly painful and uncomfortable but not that bad. I was about to nut so let it continue for 40 seconds or so until I finished and then straight away after it was hard flaccid and for a few months wouldn't get erect at all - like even with huge amounts of cialis. The shaft can now get erect - eq not amazing tho and glans completely and utterly useless.

Aside from the injections and implant I'm basically at the end of the road then :( happy to get an implant some day. For those of you who have one is it just as enjoyable as having a normal 100% working penis? Thing is who gets them young, I'm only 28 so it won't last

I've read these forums a lot but If you have anything you recommend I'll try it I am desperate  
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Hawk

Have you ever tried Cialis and then the VED with the band?

If you do that then start having sex the combination with arousal might work.

You mentioned a metal band.  Be very careful.  The one I mentioned is not a ring.  It is actually a "U" that is bendable.  The ends can be squeezed together or spread apart.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Zeckelbaum

I haven't taken cialis directly before but usually take it few times a week and sometimes
In up to 50mg doses. I plan to buy a bunch of rings over the coming weeks and will look into bands as well

Do I put the band on before it goes into ved?

I am also going to try pt-141 peptide. Anyone used that?


If cialis pt141 and ved with a ring/band doesn't work then nothing will I suppose. Even added kegels every day and will add testosterone injections soon too
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.

Hawk

Quote from: Zeckelbaum on July 10, 2019, 11:36:03 PM
I haven't taken Cialis directly before but usually take it few times a week and sometimes
In up to 50mg doses. I plan to buy a bunch of rings over the coming weeks and will look into bands as well

Do I put the band on before it goes into ved?

For therapy, you should follow Old Man's advice.

For sex, you will have to experiment.  I personally do NOT think that buying any band that cannot be worn while your penis is in the VED is going to help.  About the maximum, you can do without injections, is:
1: Take a maximum dose of some PDE5 inhibitor on an empty stomach. (I used to take a couple of L-arginine along with that)
2. Wait 30 minutes.  Some sexual stimulation (either mental or physical) will help
3. Slowly pump up to a maximum in the VED
4. Pop two bands off the VED and remove the VED (If you have a washer type ring that will work with your VED you can use those instead.)
5. Relax and slowly enjoy sex including all that l leads up to intercourse.  If you have a cooperative understanding partner that wants to help it is a huge plus at this stage.

If this works then you can try it without the rings loaded on the VED and try pumping up and putting a ring on immediately after using the VED.
If 1 - 5 do not work, no band designed to work without a VED is going to work.

If you are getting nothing out of your twice a week Cialis why waste it?  Either take a maximum dose only for sex or take Cialis daily.


Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Zeckelbaum

Thanks hawk. I will buy some of these special bands and try loading those onto the Augusta rather than using the rings it comes with. I get a liquid research chemical version of cialis so I don't need to worry about wasting it I've got plenty. I'll try taking some everyday before bed, just don't want it to lose effectiveness.

I think the real test is how it will feel when I stick it in the girl, if the pumped ved erection feels nice inside the woman just like when I had a rod of steel pre injury then I'll be happy. But if it's some Spongy semi I won't be.

I think as I need a very tight ring 30 mins is too long. I tried 20 minutes with a ring on and afterwards my penis seemed puffy and it took a day to go down and it seemed to be a set back in my progress. So it's not a very good long term solution if you want to have sex say 4-5 times a week or more than once a day then even multiple 10-20 minute sessions will appear to cause damage. Edema or at least a lot of
Red spots from burst vessels and a bit of spongyness. Has anyone here actually used ved erections as a long term proposition. Be good to talk to that person about any tips to then not damage the penis.  
28 years old
Had an injury with GF on top
Slight curve, dent, trouble keeping erections and Glans does not engorge.