Husband diagnosed yesterday

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

scooterjen

My husband was diagnosed with peyronies disease at his urologist appointment yesterday.  Today I find my self navigating this site and learning on both our behalf.  I am a Registered Nurse which helps.  We have been married 13 years.  He is 60 and I am 48.  The urologist took a "wait and see if things improve in 4 weeks approach."  He has another appt. scheduled then.  Our first clue something was wrong was pain during erections and intercourse about a month ago and continue to present.  We noticed a slight curve to the left in his erect penis last night.  I'm just helping him understand this and researching to see what the best next steps would be.  I want to make sure we're doing everything we can.  Thanks in advance and nice to meet you all.

betterbend

Hello Jen,  I am amazed how many woman come here looking to help a partner.  They are lucky men.  In the category of  it couldnt hurt, might help, and will make his cardiologist smile, start using coq10 (Ubiquinol) 300-400 mg daily.  My preparation has 30 IU of vitamin e in it to boot.  Doctors used to use vitamin e for Peyronies, but it is considered not effective, but people still use it and some uro's still recommend it.  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Paolo

Hi, at the very least get him to visit this site and if he feels comfortable enough ask him to register, it's anonymous and all the members are caring and friendly, i.e. not judged on anything  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Stabler

Hello ScooterJen,

Welcome to the forum, you will be able to find a lot of help here in our group. I have sent you a "Welcome letter" with a lot of information that kind of guide you through to the important areas of the forum. If you have any questions please email or PM me through the forum.

I'm gald to see you found us!!

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

TonySa

Recommend seeing a peyronies specialist and starting pentox and low dose daily cialis or viagra at bedtime. Also, consider daily VED or traction.  All to halt worsening and hopefully reverse any damage.  At least. 40% of early cases worsen with no treatment.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

feremanuel_03

Welcome to the forum scooter jen

  I agreed with betterbend. You are very supportive to your husband. It will be very helpful because suffering from Peyronies Disease is very emotionally draining.


garrymart

Sorry to hear about that. Hope your husband will recover soon. All the best!

scooterjen

I hadn't seen the last 2 comments on my post.  Thanks!  Husband has follow up with the urologist Monday.  Trying to make notes of what to ask for.  Husband is still having pain with erections but not so bad to prevent completion of intercourse which happens once a week on average (carefully).  I want to ask for Pentox for sure.  Since onset this has been about 2.5 months.  No change in penis appearance.  Has anyone had experience with Dr. Milan in TN?  He is a couple hours north of where I live and was on the Peyronies forum list of docs that treat Peyronies.  I was impressed with his website.  If this Urologist doesn't offer treatment options other than "wait and see" then I will be making an appt. with Dr. Milan.  Husband saw this Uro initially without his (nurse) wife but I am going with him Monday!  I go to bat for my patients...especially when I'm married to him!  ;)  

Paolo

What a fantastically supportive wife  ;D
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

betterbend

Scooterjen,  all uro's have peyronies patients in their practice.  What you want to determine is how will approach your husbands case.  My regular urologist said  "rub vitamin e on it and let it runs its course, we can always operate if its bad." ....  red flag!!  And he is a uro surgeon with a good reputation.  He may very well want to wait for a bit, but should offer up what is waiting for.  He should be discussing an ultrasound test with an induced erection to determine the location and size of the plaque, calcification, hemodynamics, and some other diagnostic information.  

Have a conversation about traction, and more interventional approaches such as Xiaflex injections or verapamil injections.   You want to know how many has he done, what kind of success, etc.  These are not simple injections, they require a lot of skill and practice.   The better the skill, the better the outcome, and the lower the adverse effects.  Adverse effects can be very unpleasant, and possible worsen the condition.

Treating Peyronies is not standardized, so he might be a good Peyronies doctor, that doesnt believe in everything you read about here.  It become a judgement call on your part.  If you are well armed with information from here you should get a good sense of him and if you comfortable with him treating your husband.  Probably a good idea to get second opinion also before deciding.

That is what I think I needed to know before I had my first visit ...  good luck
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

QuackAttack

scooterjen,

The wait and see approach, in my opinion, is not the way to go. Attack the plaque before it becomes calcified. Xiaflex and Verapamil are both good options with VED (SOMA Correct) Traction (Penimaster Pro). I went through 8 cycles of Xiaflex and saw about 25-30 degrees of correction and now I have had two cycles of Verapamil with another 4 to go and have seen some more improvement. Look for a URO that specializes in Peyronies and Andrology. There are no quick fixes for this condition and everybody responds differently to the various treatments.

LWillisjr

Topic is locked as an introductory topic. Feel free to posts in other areas of the forum.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History