Resurfacing symptoms

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mkat16

Hello,

I posted a topic a while back in the women's forum, but to be honest that forum is very quiet and I think it is good to get a man's perspective. My partner has had peyronies for about 2 1/2 years now, and about 6 months ago was no longer experiencing pain and we went back to having a regular sex life which has always been probably the best either of us have had with anyone else. He had told me when we went back to regular sex that he wanted to but that I should initiate sex more as he was still nervous despite wanting to. This was hard for me as I can be quite insecure and I also did not want to be pressuring him in to doing something he did not want to do. Recently I had been trying to initiate things but he didn't seem interested and I let my insecurities sink in since I thought he was back to feeling no pain and that instead he just didn't want to with me(even childish things like facebook friend adds got to me, I know this is ridiculous but I felt really rejected). He was still loving and engaged in every other way but I always seem to focus on the bad points. Yesterday he told me he thought he needed to go back to the doctor as he had been experiencing pain again for a while. I felt a lot better finally knowing this(I was upset he was in pain again but knowing it was not that he just didn't want to), and wish he had told me sooner as I had begun to think the problem was us not the peyronies. I want to tell him that I always want to be intimate with him but I will be supportive and there always even if we go back to not being able to have sex, and that I wish he would tell me these things sooner because I start to worry there are more problems I don't know about and that makes me insecure. But I don't know if this would make a bigger issue out of something he has trouble saying already. I was also wondering if anyone had an idea on why he would hold off on telling me? Thanks.

Jonbinspain

Mkat16;

Sorry to hear of your problems. However, what you describe is not unusual for a man with Peyronies. You must try to understand that this vile condition strikes at the very heart of our manhood. It's every bit as damaging mentally, as it is physically.

Reading between the lines, it sounds as if your man has lost his sexual confidence. Again not unusual. He probably asked you to initiate things to be sure that you still wanted him. He almost certainly still wants you, but lacks the confidence to try sexual contact in case he can't perform, or fails to satisfy you. The pain, of course, may make it a just plain uncomfortable for him.

You don't say anything of the severity of your partner's condition. How bad is the curve to his penis?  Does he suffer from ED - in which case there may be venous leakage. Is he taking any steps to treat the disease? If so, what is he taking, doing, etc.

He Must be proactive against Peyronies. It is highly unlikely to resolve itself spontaneously. It can, however, deteriorate if he does nothing. It is possible, in most cases, to conduct a sexual relationship if the disease is being treated and there is mutual support.  

mkat16

Hi Jobinspain,

He hasn't suffered from ED and the curve is about a 30 degree angle( I could be estimating very badly), and yesterday he said it was a throbbing pain recently and very bad. He had been on vitamin E tablets and another tablet I can't recall, but when he started feeling better he stopped doing anything. The doctor he had been seeing had released him as he had been monitored for about a year and to be honest the doctor was never much help, he basically saw him for checkups and my partner went back to feeling better without doing anything. The only thing the doctor seemed to suggest was surgery(seemed to be the only option he knew) but this seemed severe as his case was definitely not as severe and he had started to feel better already.

Jonbinspain

O.k. You need to get him to be proactive. 30 degrees and no ED is far from a disaster - just read what some of the other guys here are suffering!  

He needs to see a Urologist. Not just any urologist, one who specialises in Peyronie's disease and knows how to treat it. Vitamin E will not harm him, but will do very little to help his Peyronies. His doctor clearly knows next to nothing about Peyronies ( not at all unusual, unfortunately! ) Pentox will help with the pain, and can help reduce plaque load. It also improves blood flow to the penis, as does low dose  ( 5mg ) Cilais. I would also recommend that he tries ALC, CoQ10, or Ubiquinol, if he's over 50. Also Arginine or Citrulline Malate.

Most importantly, you must try to encourage him to act!  From what you describe, his condition is currently not too bad. It can, however, easily deteriorate if he continues to do nothing. There is a list of well regarded Urologists here on the site.

For the curve, he can try traction and/or VED.  You, or preferably he, can read about all the various treatments on the site. It is many times a matter of trial and error. What works for one guy, does not for another, etc.  

Jonbinspain


O.k. You need to get him to be proactive. 30 degrees and no ED is far from a disaster - just read what some of the other guys here are suffering!  

He needs to see a Urologist. Not just any urologist, one who specialises in Peyronie's disease and knows how to treat it. Vitamin E will not harm him, but will do very little to help his Peyronies. His doctor clearly knows next to nothing about Peyronies ( not at all unusual, unfortunately! ) Pentox will help with the pain, and can help reduce plaque load. It also improves blood flow to the penis, as does low dose  ( 5mg ) Cilais. I would also recommend that he tries ALC, CoQ10, or Ubiquinol, if he's over 50. Also Arginine or Citrulline Malate.

Most importantly, you must try to encourage him to act!  From what you describe, his condition is currently not too bad. It can, however, easily deteriorate if he continues to do nothing. There is a list of well regarded Urologists here on the site.

For the curve, he can try traction and/or VED.  You, or preferably he, can read about all the various treatments on the site. It is many times a matter of trial and error. What works for one guy, does not for another, etc.  He must realise that this is a marathon he's in, not a sprint. Just because the pain goes, that doesn't mean the Peyronies has gone! Far from it!  
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mkat16

Thank you very much, I will look in to this. Not sure if it would seem good or bad to him that I am on a forum for this(don't want to seem pushy) but will try to find a good way to bring up the treatments you mentioned.

Jonbinspain

Good luck. Get him to a Urologist is the best bet. Hopefully, the Uro will prescribe Pentox for him. It is possible to buy it at an on-line pharmacy, but getting it into the UK may be a problem.  

welshwales

Being in the UK is definitely a problem, as there are so very few Peyronie's specialists. There are one or two in Harley Street, but unless you are mega rich it isn't an option that most of us can afford. What you need to do instead is ask your GP for a referral to a different urologist, you have the right to ask for a second opinion (GP can refuse, but is unlikely to do so without good reason) and hope that the uro you see is willing to try treatments your old uro wasn't willing to prescribe.
UK patient's rights: Do you need a second opinion?. Health Blog at Patient.co.uk | Patient.co.uk
Once a Peyronies Disease patient experiences ED urologists tend to take the disease more seriously, and will often refer you to an ED clinic to see another specialist. I have found them far more willing to prescribe useful meds. Your partner might not be experiencing physical ED, but if his confidence is such a huge problem then his Peyronies Disease is affecting his ability to perform. I found having access to Viagra and Cialis totally increased my sexual confidence. A uro can also refer him to a sex counsellor, which might prove helpful in his case.
NHS sex counselling: What does a sex therapist do? - Health questions - NHS Choices
Regarding the various meds suggested by Joninspain, it is very easy to get a private prescription from your GP for Cialis, and the price is usually about the same as overseas pharmacies. But you get to do it legally with a private prescription, which in my books is a bonus and a stress reliever. All your partner needs to do is go to his GP say he's experiencing mild ED and would like to see if a regular dose Cialis helps, and ask for the private script. Pentox can be harder to get a hold of as not all GPs are willing to give a private script for it, but some will, it's luck of the draw with that drug.
Getting a VED could really help your partner fight the disease, as regular moderate and responsible usage promotes penile health. All men could benefit from using them, particularly as they grow older.
Personally, I have been fighting Peyronies Disease with a combo of VED and Cialis for several months, and after nearly four years of horrible progression I am finally seeing results in reducing the size of the plaques I have. Healthy blood flow in the penis is incredibly important in fighting this disease, and daily low dose Cialis and regular VED therapy will enable your partner to achieve that. I think it is worth continuing to use the VED regularly, even after the pain symptoms have gone, same with the Cialis.

Caesar

Hi mkat16,

I think this forum would be richer if every sufferer's partner spoke out like you have.

Quote from: mkat16 on December 16, 2014, 07:43:47 AM
I want to tell him that I always want to be intimate with him but I will be supportive and there always even if we go back to not being able to have sex, and that I wish he would tell me these things sooner because I start to worry there are more problems I don't know about and that makes me insecure. But I don't know if this would make a bigger issue out of something he has trouble saying already.
I'm not a psychologist nor a counselor, but I would opt for telling him directly that.
I developed Peyronie's Disease short after I broke up with a 11 years old relationship (I'm 32 years old now). Many days I miss having a partner, a loving one who tells me that she loves me for so many other reasons other than sex that I will hardly be missing intimacy.
I don't really think he will feel worse after hearing what you feel. Furthermore, I think this disease can open up new paths to mutual understanding, thighten the bonds of your relationship and make an even better lover out of him (he's got hands and a mouth to explore your body, as far as I'm concerned).

I guess that, if you open up about your feelings and worries, he will eventually feel that his manhood is not only under his pants. And this is something I've had to realise alone and I'm still struggling to cope with.

Quote from: mkat16 on December 16, 2014, 07:43:47 AMI was also wondering if anyone had an idea on why he would hold off on telling me?
Honestly, I don't know. Maybe he's reluctant to accept this setback and needed some time. But as Jon points out, it's a good idea you get him to be proactive.

Personally, I find really effective Acetyl-L-Carnitine for pain (as little as 500 mg/day, does help me) and I also take Ubiquinol (Co Q10). They have no side effects, so why don't you start with that as soon as tomorrow?

Wish you two a very good luck! :)  
Age: 37
First onset: January 2014 (lasted 16 months) | Treatment: Q10 (ubiquinol) + Acetyl-L-Carnitine | Result: 15ยบ curvature to right and narrowing at the base.
Second onset: January 2020.