frustrated wife

[flowa79]

my hubby started suffering back in 2012 with pyronies and we sought medical help. after several urology visits and his condition worsening considerably he was told the only option left to him was surgery and we would hear from the surgical team no later than jan 2014, well nope we didn't. our relationship has suffered, i dont care that we e no longer intimate but he feels he is no longer a man and it kills me seeing him like this he refuses to even hug me or kiss me and wont even sleep in the same bed which is so sad. i love the git dearly, which is why im still with him (where a lesser woman would of taken off long ago with the attitude) and i suppose why im typing this now looking for support. not just for myself but which i can also relay back to him, to let him know he isnt alone and the way he is feeling is ok. well back on point, today i phoned hospital ( cant believe i listened to him and left it this long) to find out when the appointment would b forth coming, only to b told he had been discharged  !!! yes i can say i cried i was so devastated as what has helped both of us get thro this past year is the thought of the surgery and building a new road forward. we now just dont know what to do. have contacted the docs sec have also made a complaint as well as gp to b re referred but this as really set him back and knocked him for 6   so yes im frustrated, at the lack of intimacy, at the doctors, at the wall he has built, at my inability to help my man to take his pain away, for not acting sooner, god the list is endless   sorry for rambling and thanx 4 taking the time to read this,

hope everyone has a good day xx

[Jonbinspain]

I feel for you both. This is a dreadful disease and strikes at a the heart of our manhood. I imagine that somehow your husband feels less of a man - it's all too common, I'm afraid.

Firstly, it is vital you maintain your support of him. I would suggest that you make an appointment to go and see your GP alone, without your husband. Tell him how this is affecting you both and your marriage. If he has any compassion, he will hopefully use whatever influence he has to get your husband treated ASAP.

You haven't provided much information as to the severity of his condition. Presumably, he suffers from ED? Either brought on by Peyronies, or by his mental condition?  What treatments have the doctors suggested or prescribed for him?  It may be that surgery is required, but here it is considered the very last option, if all else - and I mean all else, has failed. But without knowing how severe his condition is, it's not easy to suggest a course of action.

You have found the right place. There is more information on this site re Peyronies than is possessed by 99% of Urologists. Read all you can. Better still, get your husband to read - arm yourself with as much knowledge as possible.  When you, hopefully, next see a urologist, don't be afraid to ask questions.

If you have any questions, please ask. Somebody here will almost surely have an answer. If you feel the need to communicate with other women in the same situation, send a P.M. ( personal message ) To L. Willis Jnr. You can find him here on the site. He will grant you access to the women only discussion group.

[flowa79]

hi sorry i didnt think, i got a lil excited that i found a place where ppl would understand. he has complete ED with pain, massive plaque build up and severe curvature.  the only help the docs give was to take vitamin b. no medical, physical or emotional support or help has been offered to either of us.

im not familiar with navigation of this site as yet but will try and find the person u mentioned as it would b wonderful to talk to other women who understand how i feel after iv been strong for him.

[Jonbinspain]

Vitamin B?  Do you mean Vitamin E?  If so, it's treatment from the dark ages. It won't do him any harm, but equally will do little to arrest his condition.

Sorry to sound so blunt, but it sounds as though your Urologist either doesn't care, or is a dinosaur - neither of which is good. I assume you're dealing with the good old NHS?  If possible, go and see your doctor and ask for a referral to another Urologist, preferably one who specialises in the treatment of peyronies. He really needs an ultrascan to determine the extent of the plaque. Again, I would suggest that you impress on your G.P. just how this is affecting you both - mentally and physically.

You can find more information here, but more up to date treatment includes Pentoxifylline, low dose Cialis, ALC, l- arginine, etc. The Pentox is a prescription drug, but can be bought if they won't prescribe it. It will help with the pain and to arrest the advance of the plaque.

[flowa79]

yep, we been dealing with the good old NHS   and we have been told of none of these medications that could help him physically let alone scans to check on the advancement of the plaque!!

least of all were we warned of how this would this affect him mentally   i feel for all u men who suffer as it is awful watching the man i love disappear before my eyes. he fees less of a man, unworthy unlovable i could go on, but he is none of those things...

he is strong, caring and still the man id do time 4   also the most handsomest bloke iv ever seen and after 18yrs together i still get butterflies when i c him, just wish he believed me arghhhhh

[Jonbinspain]

I would try to get him to join the site himself. We all know from bitter experience just how psychologically damaging this disease can be. Here he will find support - others, all in the same boat to one degree or another. And, hopefully, some hope for the future.

None of us will pretend that there is a magic guaranteed cure for this. However, in most cases, it is manageable. But, you both need to be proactive. This won't go away on its own. Camp on your GP's doorstep, if you have to!.

Again, arm yourself with information from the site. It makes it far less easy for "couldn't care less" doctors (yes they do exist)  to just fob you off, if they understand that you know what you're talking about.

[LWillisjr]

Flowa79 I have granted you access to the Ladies Only forum. But I don't think there is much activity there.

[MisterBee]

Ditto on getting him hear on site himself. Even if he doesn't post about his situation at all, at least to read of others experiences and know he's not the only one dealing with this.