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wishfull

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New to Forum
« on: July 21, 2011, 07:10:11 PM »

My husband of 7 years has been dealing with peyronies for almost two years.
The realization of Peyronies was when a dramatic curve & the pain suddenly appeared.
He is in chronic pain. He says his pain resonates in his scrotum and it shoots down his legs.
He is on Gabapentin & Tramadol and remains uncomfortable.
I have to always make sure he eats, he has lost over thirty pounds since he became sick and he was skinny to start with.
We were both small business owners, but now my one business has to support both of us.
We do not have health insurance or a abundance of additional income, so we have to use state care & have been selling belongings to pay for doctor bills.
All of the doctors think that his pain is due to nerve damage from a vasectomy of which he had over seven years ago.
His next step is a inguinal block, of which he is very very weary of, but he feels he has no other option, he has not been given any other options.
Over the past 3 urologist & at least 6 pain/general doctors, three holistic doctors, not one has mentioned Pentox?

The last time we visited the urologist, he said "You've received the worst scenario for a young healthy male", and shooed us out the door.

We are both very worried about our future. We feel hopeless and insecure. Any guidance would be appreciated.

Sarah


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nemo

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Re: New to Forum
« Reply #1 on: July 21, 2011, 10:17:57 PM »

Hi Sarah,

I'm sorry about the hand you've been dealt, but speaking from experience, I can tell you Peyronie's is not a "death sentence" for the sex life and can be dealt with.  The likelihood of success is infinitely higher with a supportive partner, so kudos for playing that role. 

I think the best thing you could possibly do is do whatever it takes to get in to see one of the two primary doctors in the country - experts on Peyronie's - Dr. Tom Lue in San Fran or Dr. Laurence Levine in Chicago.  Dr. Levine used to do phone consultations, you might want to check on that as an affordable start.  He can at least offer some guidance. 

This board has lots of interesting approaches including Pentox, supplements, vacuum erection therapy and traction.  Read about it and consider a course of attack.  While no one makes their Peyronie's "disappear" most everyone can improve their condition by using one or more of these techniques in combination.  Just remember, it's not a "death sentence" - it's a crappy card to be dealt, no question, but there is improvement to be made. 

Regards and best wishes,
Nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

LWillisjr

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Re: New to Forum
« Reply #2 on: July 21, 2011, 10:23:07 PM »

Sarah,
From what you are describing, it is aparent that the pain is the primary issue currently. So I assume you want to get the pain under control first. Many on the forum would suggest that Pentox has been successful for them in relieving pain. I don't know why your prior doctors did not prescribe this. But recognize as Nemo states that there are only a few doctors recognized that have truly specialized in the treatment of Peyronies.

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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
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wishfull

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Re: New to Forum
« Reply #3 on: July 22, 2011, 03:07:56 PM »

Thanks so much Nemo & Iwillis for your reply, I honestly didn't expect that!
It has surely felt like the weight of the world has been upon us, I appreciate your words.
I'm really trying to keep hope, but I would be lying if i said we weren't frustrated.
My support has continually been tagged as bitching & he responds with silence.
He tends to abuse his medication and gets sick & wont eat & wont do anything.
It really seems like he has just given up, and I'm not far behind.

We will definitely be looking into Pentox, a glimmer of hope!

Iwillis your right about controlling the pain & I'm also curious if the region that he is
experiencing the pain (his pain resonates in his scrotum and it shoots down his legs) is similar in others?
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Old Man

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Re: New to Forum
« Reply #4 on: July 22, 2011, 03:46:21 PM »

Wishful:

Don't let your man overlook the fact that the pain he is experiencing might not be coming from Peyronies Disease symptoms. I had lower back pain for many years accompanied with groin/scrotum and leg pain. An MRI revealed that I have spinal stenosis which is a narrowing of the covering of the lower spinal nerve.

This narrowing causes pain in many portions of ones lower body especially lower back and groin areas. Based on my symptoms over the years, I would say that you guys need to get an appointment with a neurologist to determine the cause of his intense pain in the groin and leg region. It may or may not be related to Peyronies Disease symptoms, but rather a nerve problem that could be treated otherwise.

Old Man
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Age 92. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction.
Many other surgeries in the last 10 years.

wishfull

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Re: New to Forum
« Reply #5 on: July 22, 2011, 04:36:02 PM »

Old Man,
It has been quite the opposite. We haven't considered the pain to be stemming from the Peyronies until now.
All of the doctors we have seen quickly dismiss & avoid the Peyronies all together, as did we.
The doctors all have seen his groin & leg pain as a possible result from his Vasectomy 7 yrs ago, but overall they are not sure.
The Pain & Peyronies did appear at the same time, no traumatic experience, they just appeared.
I will look into the possibility of seeing a Neurologist.
But I'm very curious to where exactly others experience pain with Peyronies? Is it Constant as well?
Thanks
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LWillisjr

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Re: New to Forum
« Reply #6 on: July 23, 2011, 08:56:52 AM »

I can tell you for me that the pain was actully in my erect penis. Not in my scrotum. And the pain would come on as my erection was getting really hard. Which would explain that region of scar tissue on the Tunica was under tension.

I believe others on the forum when they experience pain, that it is also in their penis/erection as well. But there are some as well who have said the pain extends from the base of the penis and downwards. The fact you say it shoots down his legs, I was agreeing with Old Man on the nerve issue. But sounds like you have been down tha route.

You say the pain and Peyronies appeared at the same time. Would you mind going into some details on what the Peyronies symptoms are? What changes have the two of you notice?
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
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Thisismyusername

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Re: New to Forum
« Reply #7 on: January 05, 2014, 02:42:51 PM »

I developed pain and peyronie's disease at the same time.  My pain was mostly in my penis, all over, as well as some in my perineum, testicles, or even rectum.  I still have it after 9 months. 

Your husband might want to look into the possibility of having pelvic floor muscle dysfunction.  This can cause pain in the penis, testicles, and shooting down the leg.  One of the treatments for this is to see a physical therapist. 

I saw a physical therapist a few weeks ago who found that I had painful and tight pelvic floor muscles that spasm when pushed on.  I am starting regular therapy soon. 

The condition is normally referred to as CPPS (Chronic pelvic pain syndrome).
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james1947

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Re: New to Forum
« Reply #8 on: January 06, 2014, 12:34:34 AM »

Thisismyusername

I have doubts that she will read your post. She was last active at August 10, 2011, 08:34:45 AM.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
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