I found out a few months ago that my partner had gone off sex for the past year because of a pain in his balls. He has completed two rounds of antibiotics after I persuaded him to see the doctor and now has a referal for the hospital.
In the last two months the pain has been getting worse (hence the refferal) but he has also been getting pain in his penis when errect and it has been curving to one side. He has seen the doctor yesterday who has said it is Peyronie's disease and unrelated to the pain in his testicles so he now has a second referral to the hospital.
I've just read a bit online because I didn't know what it was as his doctor didn't explain it, basicly it looks like it may go away, stay the same or become much much worse to the point he will be unable to have sex again. I also read most treatments are useless.
I was just wondering if any men on here had direct experience of this that they could share with me or any additional information. Also interested in information from any women whos partner has had/has it.
Don't usually bump things up if there are no replies but there doesn't seem to be any forums etc online with support for this disease so hoping someone may see this who missed this post previously.
Sorry I don't know much about this but it has been on embarrassing bodies, this seems to be a fairly good link http://www.peyronies-disease.co.uk/2011/03/embarrassing-bodies-video.html
Thank you Lilac, I watched the vids (yuk) I can only pray it doesn't get that bad for my boyfriend..... apparently some cases never get any worse but I can't seem to find anything on the chances of it getting that bad it needs surgery.
I've just read up on this and it seems that it affects up tp 10% of males which is quite a big number considering I've never heard of it before.
It's a shame that there doesn't appear to be many treatments for it that are especially effective. =(
I wonder if some sort of numbing agent may help to deal with the pain down there? It seems like a really horrible thing to go through- physically as well as potentially psychologically.
Never thought about numbing gels. Might be worth a try though though it will probably mean we have to use condoms over the top to stop it numbing me too but tbh I'm more concerned with losing the intimacy than the pleasure if that makes sense. I will support him however I can though and hopefully we can work through it.
I really very new to this site, and somehow managed to get to this forum on PD - I would love to have mega chat with you - I too am the wife, my husband noticed something adrift about 12 years ago, and has just got increasingly worse over the years, He's lost at least half the length when erect although only a small bend and sometime pain after ejaculating. Its also lost its hardness and when on the slack theres no kind of stuffing to it just skin. and when erect its a bit like holding those kids toy ballons the hand size with water in all squodgey with slight hardness to certain places. The toy balloon is twice the size of my husband! After watching the video link (which I never seen before) very informative, brave men. I think this will have helped us approach our GP again and demand further help. This is a mega Huge secret which only myself & hubby share, we have never spoken to anyone else (god knows I need to cry on another wife's shoulders - for only she will understand the hell we / I are going thru. Needless to say we're no further in treating this than we were 12 years ago, Wheres all this help, our GP is totally and utterly useless, uninterested and doesn't have any knowledge on this condition other than what he's read, where as I on the other hand - barr sitting any exams - could preach this to the world and become a specialist I've read every single piece of info I can get my hands on. To cut a long story short - Basically there is NO CURE - and the NHS say tough! Live with it. The lucky or fortunate men with good GP;s may get further help. I also blame government health cut backs and GP training too. My marriage is held together by a tiny thread & memories - I really think it may be beyond repair 21 years down the line. . And yes INTIMACY is a major MISSING factor to our relationship and has been for years, I just realised its because of his condition, and size, its emasculating. According to my husband theory, the size of the penis measures the size of a Man, which he no longer feels, which inturn affects his ability to perform as he used to, leaving me unloved, unattractive, unsatisfied, and all alone.
THE PENIS IS THE MAN, ITS HIS PRIDE AND JOY, according to him and nothing I say can change his way of thinking. So if he avoids getting close to me, he knows he safe and doesn't have to 'perform' and fail (so he thinks) thus, I don't even get a good nights kiss or cuddle - theres no closeness whatsoever, leaving me, well so bewildered, I could go on about my feelings - but I'll leave that for another thread/comment/chat
How are you and your husband coping, and how much help have you needed or got. I would dearly love to hear from you, or any other wives going through this PD problem .... Thanks for listening, x
Stocking filler, I feel really bad for you and your husband. 12 years is one hell of a long time to cope all alone with this. To be honest I don't know much about this at all apart from what I have read online, my boyfriend has only just been diagnoised and we are still awaiting a hospital appointment to find out what is what.
What I have read has scared me a bit though so basicly I'm trying to prepare for the worst but hope for the best. I don't know where this road is heading :(
Has your husband only seen his GP? I think it is worth seeing another doctor (or several) or pestering his usual one for a refferal to see a specialist. I don't think the "theres nothing that can be done" attitude is very helpful at all as not only does it cause physical pain, theres the emotional and psychological impact to deal with too....
I wish you and your husband all the best and if you ever need a chat then feel free to send me a friend request or make further posts on here.
Just thought I would update. We had the hospital appointment yesterday, we have to wait a whole year before they are willing to do anything about either problem as it is necessary to let the disease finish developing.
We will have to pay for any operation done to correct the pain in his testicles, god only knows where we would get that sort of money from as its expensive. Its also looking likely that he will need an operation to fix the damage the peyronies disease has done to his penis to enable him to have sex again as the bend is now so severe its impossible........
You have to pay ?? What the hell do we pay taxes for ?? This is a medical complaint not a boob job or teeth whitening, I cant believe this so called health system. I for one would go back to the GP and then if nothing else go to your local MP.... Heaven forbid if I ever get ill
Its because the vasectomy was his choice, even tho they told him it was simple, reversable at any time on the nhs (but now theyve changed those rules and wont reverse them) with no risk of complications apart from the obvious infections from the wound. He and many other men wouldnt have had it done if they had known complications can arise years and years afterwards. There wasn't as much warning with having it done as there is these days :( The pain in his balls is only going to get worse from the research I've done too- its disgusting, its not like we want it reversing simply because he changed his mind. Its because he is in pain and that pain is getting worse for him and the probability is it is going to continue getting worse. We can barely pay out rent, we certainly cannot afford to go private and we are both working our backsides off at that.
I've been in tears all day, I have no idea what we are going to do.
Hi morefun, I really feel for you and I can't believe you have to pay - I'd definitely contact your MP or even write to the PM and maybe start a petition on the government website.
Is there an organisation that you can both go to for support?
No idea the urologist yesterday was as much use as a chocolate fireguard being evasive about stuff we asked tbh. I've googled to see if chronic pain would be a reason to get the vasectomy reversed on the nhs but cant find anything. The op helps 85% of men who have it done for that reason, I dont see how they can deny him the op given that its them who carried it out without warning him of the long term effects :(