I Don't know where to start

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Sarah

Hello everyone,
I guess you may have noticed I am a woman (sarah),I am here to seek guidance and help for my husband. He knows I am doing so and is encouraging. About 18 months ago he noticed a lump in his penis and was having alot of pain when erect, and especially during sex, he didnt tell me about it until 7 months later, 4 months(April) later he had started to get a curve,  we went to the  doctor, doctor said its peyronies- vit e 300mg per day come back in 3 months, around this time I had started to read about peyronies and was really gung-ho to get a traction device and jump right into all that, but he wanted to see what doc would say. Now it is november and still nothing is being done, I don't know whats been said at these doc appts and my husband seemed o.k so I never pryed. I decided that I could live with this and if he was ok then I was not bothered. Did I mention we had our second baby 3 days after my husband was diagnosed, this kind of distracted us for a good couple of months. My love has never read anything about this disease although I have encouraged him to and he says he will. we had a good discussion this morning where I realized that he didn't even know that the lump was scar tissue, I told him it was and he said he felt better knowing this. He doesnt know theres no cure, He thinks the uro can cure him. He has an appt. with the uro on the 21st and I hope this guy helps but I feel that he won't. I'm starting to freak out because I told my husband I had joined your forum and he said this was good and he will do whatever I think he needs to do. I would like him to be here but I cannot force him.I've been reading about it alot in all my spare time because of this upcoming appt. and am confused  How do I tell him I don't know what to do- I feel like we've wasted a huge amount of time. I feel guilty because I stopped learning about this and decided to go along and see what the doc would say, meanwhile time has been ticking. My husband is not yet 40, he has an upward curve near the head of his penis, he has lost some girth after the curve, and it seems slightly pinched there, He reckons he has lost more than an inch in length.curve is probably 30-40 degrees and has not affected qualty of sex from my perspective though he says its not the same for him. the pain and psychological pain have affected us at different times however. Does anyone out there have any recommendations for what to say at this uro appt. as well as a possible course of treatment we can start immediately? What is the most reputable brand of VED? If my husband still has mild pain occasionally during sex does this mean its getting worse? If left untreated would it just continue to progress until we can't have intercourse? Can we stop it from getting any worse?Is this going to keep happening for the rest of our lives or is it possible that this could be an isolated instance. Does anyone know anything for sure. It seems like there are no sure things and this makes it especially hard.
Please any help would be appreciated. I feel like my dear is crystallised with fear and need me to get us on track to healing. My husband is the most loving and truly joyful and shining person I have ever known. I feel like this disease could take his joy and self worth away, even the thought of him losing a little peice  breaks my heart soo.. :'(
Sorry to go on like this I hope I make some sense  

Hawk

Sarah, I can feel your emotion and concern.  It also seems the two of you have a caring relationship.  You covered a lot of ground so I will tr to briefly address point after point.

You made it clear that your husband has remained uninformed in spite of your urging, and that he has turned his care over you with complete confidence.  While that is much better than some responses, continue to encourage him to get on the forum.  Consider registering him and telling him "here is your name and password.  I logged you on.  Here is an interesting post.  Sit down and read this. If that doesn't work then you have to go with what you have.

Next, if he is going to act like this is your problem when it comes to the forum, he can hardly act like it is his problem when he goes to the doctor.  In reality it a couples issue.  He should be on the forum with you and you need to be in with him at doctors appointments. Two people always cover more material and recall more information than one.  At this point you are the best to determine if his urologist is expert with Peyronies Disease or clueless or somewhere in between. Go in with a specific written list of questions.  While there, jot down very brief notes to remind yourself of what the Dr says and any new questions that come to mind.  Rehearse the pre-appointment questions with your husband so he can talk while you gently guide the conversation. (This is good advice for any illness).

Go to our Resource Library and read the 4 studies/reports on Pentox.  Print them and take them with you.  Do NOT harp on the forum but just the studies.  The PAV cocktail as it is referred to in restricted circles, is his best starting point.  Also go to our Oral Treatments area and learn a little (And ask questions) about COQ10, ALC, Arginine.  These are things he can start ASAP.  He might try some ibuprofen for pain and inflammation until he is on pentox.

You mentioned traction and the VED.  Both are good and a good urologist will support the use of one or the other.  Many urologists will laugh them off, or worse yet, just tune you out when you try to communicate.  Single cylinder VED's go from cheap junk to expensive medical grade.  The difference is largely how they hold up and ease of us.  All of them place a vacuum around the penis and there is no such thing as an expensive/inexpensive or quality/worthless vacuum.  A vacuum is a vacuum.  There is only one triple cylinder VED sold as a unit on the market and I view it as outrageously over-priced.  I think it is good and that someone with no financial considerations should buy it but at $600 I would improvise with ordered cylinders etc.  Traction is a couple hundred but it takes motivation and commitment to wear 4 hours or more a day. As with all of our boards, you will learn the most in the least amount of time if you read the "Highlights" at the Top of each board.

As far as guilt is concerned, Peyronies Disease can distort a penis but far more damaging is if you let it distort your mind. Hindsight is always more clear.  You did the best with the understanding you had and the circumstances as they existed at that time.  Pat yourself on the back for not attacking your husband for his inaction, not talking him into surgery at the hands of a quack or some of the other bad moves you could have made.

Take some time to read the highlights of Psychological Aspects of Peyronies Disease"  It will give you some wisdom for going forward.  As said by a wise member, "This is a marathon, not a sprint."  It can move you closer to each other or destroy your relationship.  That is the part about Peyronies Disease that the two of you decide and control.

Best wishes

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