New to Peyronies Disease - Feeling Lost

[MJDexter]

Hello all. I joined this group after searching for support groups. I am feeling sooooo lost, and a bit scared. I am sure all of you have felt this way, but I am angry and sad: all the feelings that I ever had about inadequacy have now consumed my daily thoughts - I feel robbed of what makes me a man. Ok, let me take a deep breath.....

I am 54 and never had a problem in this area -- felt like a teenager every day. Wife would say that "I get aroused if the wind blows." LOL. Well about 4 years ago I noticed erections were slowly getting softer – middle-age ED I thought. Then one day, they were gone completely -- great, now I am impotent.  And libido was non-existent – this was shocking just by itself as I consider myself to be hyper-sexual.

I was also developing joint pain, severe lethargy and heart arrythmias – so the the inability for erection was not on my mind. I lived with that for over 4 years without any diagnosis or treatment. Heart ablation to reduce the arrythmias.  HOWEVER, this past January, I found an endocrinologist who determined that my Testosterone was only 75 and Prolactin was 158 caused by a rare non-tumorous pituitary problem called empty sella syndrome. So for the past 9 months or so, I've been receiving meds to reduce prolactin, along with weekly T shots. Energy levels increasing and I can use my hands again. BUT WAIT...... the most exciting part of all...... oh yeah, ranging libido is back. I was cured!!!!  So I thought.

Noticed my 1st full erection in 4 years and it had a slight curve and a "soft spot" on the left side, right before the curve. And if that didn't suck, let's just take away an inch or more in length and who knows how much in girth. I was 6 - 6 1/2 inches depending on the mood and now 5 at best. NOW this week I have now noticed a hard flat "thing" growing right where the "soft spot" used to be, that I appears to be 1 inch in length and 1/2 in width.... and it hurts.... all the time, but only when not erect. So now I just sit here aching all the time!

Spent a week reviewing Dr Google and that freaked me out.  1st Appointment with Urologist last week. Fear is true.  I have Peyronies Disease.  Curve is 20-25 degrees to the left.  Fricken great!!! Now what?!? After struggling with feeling like a failure for not being able to be physical with my wife for 4+ years, I get this?!?!   This is crushing me, particularly the lost size.  I am struggling real, real bad.... Feel as whatever manhood I had is now gone.  I think reality is setting in. After a few hours of tears, I found the strength to post here. If nothing more, thank you for allowing me to vent.

By the way, my wife of 25 years is amazing and supportive. However, I know she is tired of hearing me. I am too embarrassed to show the "new me" to her and I really feel it will not bring her the pleasure she was used to having.   With that said, I would say I am struggling with the psychological affects.

I have started with RestoreX for the past 4 days and began taking several antioxidant along with E supplements and daily Cialis.  Urologist has treated 100s of Peyronies Disease patients and told me I was in the Acute phase and at this point, it was "not bad".  He would not prescribe Pentox or Diclofenac until I researched the risks.  He stated he has had around 75% success with Xiaflex, but I am some time from that decision.

Sorry for rambling.......  I am just afraid this will get worse
 

[Stabler]

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Stabler

[Mikel7]

Welcome MJDexter to the forum and thank you for filling our your signature line! Also please study our survival guide -->Survival Guide .

Your case sounds similar to mine as about 20 years ago I also experienced low libido and loss or erections and quality of life. Long story short my testicles stopped producing testosterone and was placed on full TRT replacement. I also just had an ablation in 2017 that was successful. I am assuming that you were placed on either cabergoline or bromocriptine as these counter act the tumors secretion. Hormone replacement will have you feeling pretty good but you need to be sure and watch you hematocrit levels closely as over time they can rise.

Devastation and worrying are paramount with all of us when this disease hits home. Our identification as a man is greatly connected to our penises. When this is attacked it affects every other part of our being ...you are not alone! You need to keep educating yourself on peyronies and realize that with a plan of action and a good Dr that will work with you will get through this. This forum will give you some hope and you can vent all you like! I had a very difficult time when my deformity showed up and I lost a bout an inch and a 1/2 of length which I have gained almost all of it back.

Keeping your spouse educated also is important and will be helpful emotionally.  I've included my wife in every step of the way with this. The Restorex and Cialis is a positive move in the right direction. Keep your game plan and you will see positive changes happen. Remember though that this is a marathon and not a sprint. Adopt this mindset as changes to your penis can be very slow and gradual. Also keep sex gentle with a lot of lubrication. There are also may other forms to be intimate with your wife. Just sit down and have an honest heart felt discussion.  You may be surprised as this disease may open up a new area of your life with her in regards to this. As far as the Xiaflex is concerned if I were having the procedure done I would only have Dr Trost perform it. He is in Utah and one of our posting Dr's here on the forum. He has developed his own protocol with the drug and has great success with it's outcomes.

Just remember and comfort yourself with these words..YOU ARE NOT ALONE!  

Mikel7

[MJDexter]

Thank you Mikel7!!

your words are very encouraging and do help soften the blow.  Today was a rough day for me.  I let those dark feelings of inadequacy creep deep into my mind.  I know it will become easier as time goes by.  Sites such as this really are a blessing.

I have been on/off cabergoline since February of this year.  Panel from 2 weeks ago has Prolactin back down to 37.  The highest has been 158 with averages just below 100.  T is now 768 and Free T 15.  This is the highest they have been in 3 years.  Actually the Free T was below 3 until August of this year.  My cardiac ablation was in February of 2022 and not 100% successful, however much improved compared to prior.  I still have almost daily PVCs and have had a couple VTAC episodes; but still much better than before.  I was not able to function at all, felt as though life was reduced to laying in bed and taking very high doses of Amiodarone (which is a risky med to be on long-term). Also, joint pain has subsided tremendously.  According Cardiologist and Ortho, all of those symptoms were caused by the low T and not the high Prolactin.  However, the high Prolactin is what caused the Low T so continued treatment for hyperprolactinemia is certainly a new part of life.  I haven't heard of hematocrit, so I will certainly be discussing with Endocrinologist at next visit.

My wife goes with me to every appointment, she is my rock.  I know that may sound cheesy, but it is the truth -- she is, afterall, my life partner.  Sadly, she had her own medical issues that destroyed her libido, which began about 9 years ago.  First was ovarian fibroids which made intercourse very painful.  Then she ended up having very early menopause and a partial hysterectomy in her early 40s.  Doctors did not keep an eye on her hormones, which resulting a major shift from where were, physically, during that time.  I had no idea it had to do with hormones so I took it very personally at that time and really felt rejected and inadequate.  Fast forward 4 years and I developed the hyperprolactinemia -- we both had NO LIBIDO.  Now that I do, it feels great.  I just want her, all the time - but we are not on the same page.  She has her appointments in a couple weeks to possibly begin HRT/TRT.

Again, thank you for commenting -- it feels good to converse with others who understand.

Michael

[Mikel7]

Your testosterone numbers look great as does your prolactin level. Pvc's can be a pain in the butt. I ended up getting my ablation in Phoenix AZ from a Dr Swarup. He prescribed me flecainide for pill in pocket and works like a charm. I highly recommend him to anyone with electrical issues of the heart. My heart is about 100 cured and rarely ever need medication.

My wife also went through similar hormone issues and eventually was placed on hrt through using a hormone cream daily. It has eliminated all of her symptoms and brought her back to normal again.

The dread and worrying are quite normal with this disease. We men have a connection to our masculinity through our penises. It may sound funny but it is the truth. I went through a period of complete devastation when my peyronies began in March 2020. I went to see 2 urologists who were not any help. I then went to see Dr Levine in Chicago who
gave me a correct diagnosis and a treatment plan. It was then in July of 2020 I had sudden hearing loss with hyperacusis and I had to retire from my teaching job. I almost committed suicide if it wasn't for my 4 children and loving wife who kept me together.

Fast forward today I am at a much better place with a better outlook and with continued traction and occasional VED things a way better. Just remember that this is a marathn and not a sprint. We guys like to get things done now and quick which for peyronies doesn't work that way.  

Mikel7