first post-trying to help boyfriend

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meg

Hi, this is kind of on behalf of my boyfriend, but obviously trying to find a way forward for both of us...
 It seems we had an accident during sex which damaged his penis-at the time it just seemed a bit bruised, and we pretty much forgot about it until a few months later he noticed a peas sized lump towards the middle of the shaft. By the time he plucked up courage to go to the docs, it had started to curve.
     We had many months of waiting to see various specialists, (we are in Britain so get free healthcare but the waiting times for 'non urgent' stuff can be long sometimes) and he was prescribed cialis, which he didn't get on with. The doctor suggested surgery as a possibility, also the idea of an air pump inserted to manually get an erection.  They also said it may calm down and improve on its own. All this has just scared the hell out of him.
     A year and a half on, he has a penis half the size it was, which has obviously devastated him, he has been so down. He can only get an erection up to halfway, the end stays flaccid. It hurts to ejaculate, and when he does there is a very small amount. He no longer wants sex, but this loss of sex drive I think must be psychological from all that's happened. The other problem is that before this, we were trying for a child, I just can't see how its going to happen.
  I guess I just want a way to go forward, and the prospect of some hope, which he seems to of lost at the moment. Anyway I'm going to have a good search of the forums now thanks for reading.  

Hawk

Quote from: meg on March 09, 2013, 03:51:40 AM
He no longer wants sex, but this loss of sex drive I think must be psychological from all that's happened. The other problem is that before this, we were trying for a child, I just can't see how its going to happen.

I am sure ou observation about his lack of desire is largely correct.  Please be sure to read this MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

Also ou have access to the private Women's Forum.  If you have any questions just ask.

HAwk
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

Skjaldborg

Meg,

On the issue of having children: I got my wife pregnant while taking a drug to treat peyronies disease, called Pentox. The drug not only helped reduce pain and correct some deformity, but it also increases sperm motility (a side effect). I suggest you work with your boyfriend to get a prescription for it.

Skjald

Hawk

I might add to Skjaldborg's post a personal opinion: If your relationship is stable and you are fairly likely to mount this challenge and survive.  That is entirely up to the two of you and not up to Peyronies Disease.
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

meg

Thanks, I will seriously look into it-this forum is the first time I have heard of pentox, we were only ever offered cialis. I'm just back from work now so am going to have a real good look around the threads, thanks again for your help.

newguy

I just want to chime in and say that I appreciate you taking this step, and commenting here. Your boyfriend is clearly going through a very difficult time and so are you. I commend you for sticking by him and for being proactive at such a troubling time.

restore

Meg, would you mind telling what sort of accident you two had?  Also, does he have his foreskin?  I'm curious only because I've been told that circumcised men are generally more at risk for injury due to being more aggressive in their lovemaking to make up for loss of sensitivity.  (Not trying to turn this into a circumcision debate).  Low dose daily Cialis and daily Pentox have objective evidence that they help slow and even reverse some of the damage from Peyronies.  Xiaflex will soon be available also, which will likely be the closest thing to a cure.  There are other therapies on the horizon.  

Hawk

Restore,

I don't see that any of that is relevant to helping this couple find a solution to the major problems they face.  We try to use the introduction thread to give brand new members a chance to lay out their questions and for us to focus in on helping them with the issues that will they need answers to.  It is enough to know there was an injury and like 99% of injuries during sex it is likely to have been a female on top injury, but that is irrelevant to their needs at this point.

Hawk
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

restore

Agree, I was curious.  I did give some points though in what has helped.  

Jonbinspain

Meg;
First off, at least one of you is being pro- active about this. Your boyfriend's mental attitude will not help his condition. He must decide that he's going to fight this. He may well need all your support and encouragement.

Blood supply to the penis is crucial. As has been mentioned, first line of defence, by common consent here, is Pentox, Cialis will also help, as will L-Arginine. Also recommended here are CoQ10, ALC. if you can get him started in his fight, hopefully he will start to see that at least his condition is not worsening, and is hopefully even improving slightly.

Fighting this disease is not easy and is an ongoing process. But, he must start somewhere, doing nothing is not really an option.

meg

Thanks, I can't tell you how much I appreciate your replies and suggestions. First stop doctors tomorrow, I'll go too. You are correct that the defeatist attitude isn't going to help. On reading some of your answers out however he has started to look a little more (cautiously)hopeful.
  And yes it was female on top, nothing rough just got our timing out, and no not circumsised.
 Is that why the Cialis was prescribed then, blood supply? The doctor at the time didn't really explain, and the boyfriend just thought it was a type of Viagra which put him off, tho' he did take them for a while but complained of constant erections?
 I have ordered the coQ10, it turns out he is already taking L-arginine in some weight gain shakes he's drinking, and not sure on the ALC as he is quite underweight and presently trying to put on some pounds-a symptom of him being quite depressed has been loss of appetite.  

Jonbinspain

Meg;
Here briefly is why your boyfriend should consider ALC:

Acetyl-L-carnitine vs tamoxifen in the oral therapy ... [BJU Int. 2001] - PubMed - NCBI

Yes, Cialis would have been prescribed to help blood flow, or to help him get an erection. It is what is known as a PDE5 inhibitor. Briefly, it blocks that chemical which reverses an erection, thus allowing the arteries to open wider for longer. Normal dose for ED problems is 20mg. However, for everyday use 5mg is recommended. If you have 20mg pills, these can be cut into 4 pieces.

Hawk

Meg,

If you read the the link I put in my post then you and your mate have prepared for this doctors visit so there is more chance it will be a successful trip.  I hope you had a chance to print the link on Pentox that are in that post.

Let us know how it goes.
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

ashtown

Hi Meg,
I know there has always been a tendency to hero worship the NHS in Britain but when it comes to Peyronies I've found them pretty useless. They tend to take a do nothing approach and make you wait months in the process. I'm actually surprised your GP even prescribed Cialis.

To get treating this faster and more proactively I suggest seeing a private urologist with a good name for Peyronies who can then write a letter to your GP, who should then prescribe Pentox and anything else via the NHS. This will probably cost around £200 and I know that's not cheap but it will at least get you both moving in the right direction and your boyfriend may well feel less depressed once he knows he is doing something positive.

On a side note I think it's fantastic that you are supporting your boyfriend in this way and that you have come on this forum to get more information.

Ashtown
PS My comments about the NHS are not aimed at starting a political argument. I just think you need to do what is best for you.  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

meg

No I completely agree, they have been wonderful with other stuff, including my dads heart problems, but I guess this sort of thing ranks quite low in terms of what they see as an urgent problem. And yes the waiting around for months, and lack of communication from them was pretty tortuous!
 I see from the section regarding doctors and urologists there is a recommendation for a clinic in Bristol, which is very close, so will consider trying them.
As regards the doctor visit we have had to put it on hold for a little while as my poor boyfriend has been admitted to hospital with stomach problems! But I guess that gives me more time to research this.

MtnSurf

Hi Meg. I had a very similar injury happen to me in Nov 2011. I sent you a personal message with some details that may help you & your boyfriend. It actually sounds like my injury was worse and I have seen some improvement over time. You'll probably need to rule out a tear which is very possible when the penis is bent during sex. A tear will greatly interfere with normal function. He may see improvement with some time.  Trying to keep his head up will greatly help him also, but it's not easy, and takes a great deal of determination.

Feel free to message me back if I can offer any more info or help.  

0x5555

Hey Meg,

If there was bruising then it sounds like he had a fracture.

You say "but this loss of sex drive I think must be psychological from all that's happened" but that may not be completely accurate.  If he has pain during sex then that is going to be a major reason why he's become so distant.  Chronic pain has it's own host of issues.

If there is pain then he has some major issues to deal with.  How much do you guys talk about this stuff together?  It's really important that you guys have a very FT and that you let him know how much you love him and that you're there for him.

In my case I was dating a woman who was very supportive but the pain really drove me out of my mind and I ended up leaving her.  I jut could not take the guilt and sadness of being so disabled and not able to see a future together where we would be happy.  I was young so I was really regretting that I was losing my sexuality at an early age and it was just very very devastating.  My gf was incredibly supportive but it actually added to my guilt and sadness.  I was in so much pain and so depressed - not really geting out of the house, not really able to support myself - that it really affected how I felt overall.  If you guys think you need it maybe couple's counseling and ideally from someone who deals with relationships where a partner has chronic pain.

I found social workers at hospitals to be VERY helpful.  I have found psychologists to be less helpful.  Does he still go to work and is he still fairly social or is he becoming withdrawn and isolated?

Just an FYI I think you two are in a medical crisis and you will really need to rely on each other.  He is likely disabled and he needs your support - in the same way you wouldn't ask a person on crutches to go for a run you will have to adjust the things you ask of him.  Also, I think he needs to take a long view of his recovery - I know in my personal case I started off with the view that I could find a pill or surgery that would 'fix' things (like most medicine seems to be) but realistically it will be many years before I think really fully recover from this.  I spent a long time in denial that this was permanent.  I needed to get to a point where I accepted 'this is how it is' and take stock of my life.  It's hard because I live in Canada and likewise we have long wait times for specialists (2 months sometimes).  So I was waiting to hear what they had to say - and often their advice was pretty lackluster.  

I'm very impressed with you for coming on here and trying to find more info and very impressed that you are being so supportive and caring.  I'm sure it's VERY hard on you too and I just want to let you know that you are a great person for being there for your bf.  

Just to reiterate - for me the change in shape and size was not the crushing part.  At the end of the day a penis is a penis and there's always other ways to make love.  In my personal case it was the PAIN - which I felt every day and affected my sleep and made me very anxious.  You say he has pain on ejaculation so that's a clue that maybe he's got pain in general.  I can personally attest that pain in that area is a real mindfuck, and pain during sex really really sucks.  If he has pain I suggest you also get the ball rolling towards seeing pain specialists and pain clinics who deal with patients that have chronic pain.  Like I say there are a host of issues that come with chronic pain that are separate from the 'sexual' issues associated with pain in a sensitive area.

I am happy to talk to your bf in private if he feels he needs to talk to someone who has gone through something similar.  I'm happy to let him get whatever he has in his head off his chest and maybe I can give some advice on things he might want to look into to try to help him through this.

All my best to you to - stick together and make sure you support each other in this.