8 month waiting list

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NinetyDegrees

Hello...
this really feels like the last straw for me..
I'm 49 years old
HIV+ for 30 years (undetectable for 20)
This January 1st 2018 I suddenly developed multiple symptoms of Peyronie's
-sudden and dramatic 90 degree bend (which became less of an angle over the past month)
-dent on one side that looks like a bite was taken out of it (which spontaneously disappeared after a week)
-pain while erect
-pain after erections
-hour glass shape is forming
-erectile/orgasm dysfunction
-std checks all negative and no urethritis
-penetrative sex and achieving orgasm that way is almost impossible
-No physical injury (treat my fella like fine china)

In all of what I've read so far, early diagnosis and treatment is crucial but the waiting period to see the regional guru is up to 7-8 months. I immediately stopped taking a statin drug which I was taking only as a statistical preventative. I did that because I found numerous anecdotal posts about the relation of statin drugs and the onset of Peyronie's disease. I also immediately started taking vitamin E and CoQ10 because the statin drug causes a deficiency in CoQ10 which I was not informed of. All of my self worth is not tied into my wang but I really feel as though I cannot face this one down. I'm a gay man and have made a lot of difficult sacrifices for the pursuit of love.. Gay men are extremely superficial and I feel as though my chances are absolutely nil after this. I'm sick and tired of being told how tough and resilient a person I am. .. it seems to make me feel worse.. I went on this site to try and find a support group locally. I think I will call back the urologists's office and inquire about a support group since I have to wait 7-8 months just to see him.. I'm really glad to find this forum.. especially after reading all of the rules and precautions taken to ensure our privacy. Thank you for being there.


Paolo

Welcome to the forum, thanks for registering.
Is the reduction from 90 degrees a result of abstinence in the last Month??
What are you taking for pain management?, pain for me was the most debilitating thing, this disease has or appears to have multiple phases.
Yes, gay men are superficial, but a lot of women are also!

Don't rush into treatments, take your time on reading up the forum, try not to obsess (difficult), treatments are being developed, and check out member NeoV's you tube channel https://www.youtube.com/channel/UCjX1naIryWc6pennKOHWbgg

Don't start bad habits, alcohol or over-eating for example as a coping mechanism. Make your sleeping environment as peaceful as can be, sleep is very important indeed.
Consider adding milk thistle (silymarin) to boost liver function.

I hope other members chip in as here you are amongst friends, no one will judge you, I am bi-sexual by the way  :)
Paul (paolo)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Monty

just hold things together, time will heal, no quick fix for this, so many option for you to take, read up in this forum, seek medical advice as much as possible'
i'm 66 yo married for 45 years, had peyronies for just over 3 years now, things are getting better for me, always here if you need a chat.
71 UK, ED from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 20mg of Tadalafil twice a week, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

TonySa

Wow, 7-8 months is a long time. I'd consider calling in each morning after they receive phone messages to inquire about any appointment cancellations.
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.

NinetyDegrees

dang time limit erased my response.. Thank you for the responses and I will try again after getting some sleep.. yeah I was up all night being upset about it.. I will be back for sure I need the support no doubt

betterbend

Since your symptoms just started, you are most likely at the beginning of the disease, hopefully not going to progress further.  Stats show that 50% of men symptoms progress, 40% stay where they are and 10% improve.  Early is important, but its not like if you don't start this week, you blew it.  C0q10 is a good start, you can look at other orals, VitE, Pentox, Cialis, opinions vary on all of them, you have to do what you feel is best.  I am not sure if traction started this early is a good idea, maybe others can chime in on that.  When you get to see your doctor, there are some injections that might be helpful, Xiaflex, for example, but you shouldnt start that until stable for six months anyway.  Verapamil might be more helpful if you are still in active phase, again that is a call between you and your doctor.  Track your progress would be the best thing to do while waiting, picture and some notes.  That will help your doctor a lot in determining where you go when you get there.  

This isnt a sprint, its more of a marathon, hopefully a mini marathon... 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