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Author Topic: I made a promise and sticking to it, hoping I can give hope to others  (Read 337 times)

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AskinForAFriend

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Anybody battling this disease knows that the road can be long and depressing. I started showing signs of the disease in early 2019. The symptoms didn't start off too bad and I was able to maintain good erections for nearly a year. Curvature steadily got worse through that first year but it didn't hamper sex and probably made it better. By December 2019, it all took a worse turn. The curvature got worse, doctors called it a 60 degree curvature, upwards and I began suffering Erectile Dysfunction. Sex became nearly impossible since then.

I have a "hinge" or "buckling" not far from my circumcision scar on the top and no matter how hard I got my penis would always bend back in half at this hinge. Not painfully, but not at all good for sex. I also lost inches. Prior to Peyronie's, while erect, I clocked in around 7.5" to 8" depending on the situation and it got to where when I sit down, my penis would get lost in my skin folds....

I began seeing a doctor that specializes in Peyronie's in February 2020. Soon after, Covid started, which pushed out treatment by a few months and I started Xiaflex with this doctor in the summer of 2020. I went through the full 8 shots through the next year and never really saw any improvement at all. I bought a RestoreX to try to use with the last round of Xiaflex, even though my doctor didn't recommend it but only said "it couldn't hurt". That seemed to help get some rigidity back but still not nearly enough for sex.

After the 8 rounds of Xiaflex, the doctor did an ultrasound after artificially "inflating" the penis in the summer of 2021. This showed that my blood flow was, actually, still good and my issue with Erectile Dysfunction was related to Peyronie's. I felt that would be the case since I could still get erections, just not good ones. The doctor said we would get more rounds of Xiaflex approved through the insurance but I heard nothing else for months.

About a month after the ultrasound, I started thinking about my interactions with the doctor. The visits always seemed rushed and my after visit summaries always said the same thing, even though untrue. This made me feel that perhaps he wasn't really as invested in my issue as I was. He was a nice guy and all but I made a promise to my wife I would do whatever it took to make this right in our marriage, no matter what it meant and the anxiety/depression I felt.

So, I asked Google about other doctors specializing Peyronie's in my area. I am very thankful that I have excellent insurance and can jump around wherever at no cost (low out-of-pocket max) and found another doctor in the area. I booked an appointment and immediately he seemed invested in my goals as well. I'm not looking for perfect or how it was....just functional. He wanted to try a round of Xiaflex to see if he could make a difference. He actually uses a numbing agent and then administers the shot so he can move the needle around as he feels necessary where the other doctor seemed to just poke and hope. I agreed and we did that round in January 2022. I used the RestoreX again and this doctor recommended I get a Phallosan for traction to use since it is to be worn longer periods and he felt the RestoreX was probably too aggressive. So, I used both after getting the second shot.

Unfortunately, when I met with him again in February 2022 I knew that nothing had changed and I told him that I had lost faith in Xiaflex helping. He understood how I felt and that we needed to move on and talk about surgery. We both agreed I was not a good candidate for plication because of my "hinge" and we moved on to discussing penile excision and grafting. I was all in....I felt that was the next logical step and, if done correctly and everything went well, I could put this behind me. He asked then if I was interested in an implant and I said "probably not" since blood flow seemed fine....I do kinda wish I just had gotten that done as well but.....hindsight...at least I can get it done if necessary down the road. But, he explained the process and how he uses cadaver heart tissue with great results for the graft.

April 22, 2022, I was in surgery. It took the good doctor 3.5 hours and I was on my way...loving the anesthesia and forgetting most of the day. The one thing I do remember was waking in the night with severe pain....nocturnal erections were no fun. That is correct....I was having nocturnal erections immediately after surgery, which I took as a good sign, though painful, as did the good doctor. I truly didn't know what to expect....I'm sure the doctor told me but it was all forgotten and the discharge instructions in writing that I had were for any general surgery. My penis was wrapped tightly and what I did remember was I was to remove the bandages after 2 days.

April 24, 2022, I was excited to take the bandages off and have a look. Carefully, I took them off with excitement, then...AHHHHHHH!!! Blood!!!! Not just speckles on the bandaging but dripping down my hand!!!! My wife, a CNA that needs to work on her bedside manner was helping and said, "That's not good" so I freaked out!! I hadn't read about this!!! I quickly through gauze over it, gripped it to try to get the blood to stop, and wrapped it up again....decided I would ask the doctor about this when I follow-up with him and I should have waited 3 days....

April 25, 2022, I dared take the bandages off again and the bleeding had stopped. It looked pitiful....black and blue all over (scrotum looked the worse....like a punching bag), swollen...just terrible.

That is how it was for the next week. Waking up multiple times in the night to have to pee and being in pain because of the accompanying erections, tenderness, the lump on top from the graft. By the following weekend, the bruising was subsiding and swelling was going down as well, thanks to nearly constant icing. But, I saw something else weird that I hadn't read about....my penis looked like a Super Mario mushroom...the area from my circumcision scar to my gland was all swollen. I could push it around and move it around so but I still freaked out a little that was how it would look, even though the main goal is to get back to satisfying my wife.

May 3, 2022, I had my post-op appointment and I had so many questions to be answered. He confirmed that bleeding could be normal and nothing to worry about since it did stop. The stitches were still in, since I was scared to put peroxide on them and have my penis fall apart, and the puffiness around the gland was edema. So, he prescribed me Cialis, baths for 30 minutes twice a day for 2 weeks, and gentle stretching and massaging after another week for a couple more weeks. I stuck to that plan to the tee and, thankfully, the puffiness went away with time...I recall having some puffiness after being done with the bath cycle.

The stretching and massaging was "interesting". It was easy for me to tell that it helped because massing the graft did seem to make it feel like it loosened up and was more pliable, but that wasn't why it was interesting. Just my massaging it got me "excited"...very excited. My erections had already seemed to be far, far better than before the surgery and my penis was straight! Not still quite as large as it was but it looked great!! After a couple weeks, I started using the Phallosan as directed. My wife's eyes got huge when I couldn't fit the medium bell any longer (which is what I used prior to surgery) and I barely fit in the large bell. Everything I saw was encouraging. I was getting or giving myself regular erections to just check on progress.

June 1, 2022, I noticed that the graft seem to be getting firmer. It wasn't as pliable and my penis seemed to be making a bend upward....this was very, very disheartening to me and I felt like I had wasted my time and went through all the pain for nothing....I kept on with the traction, taking rest as needed because it would get sore and need a day off here and there. But, my erections were still strong. Much stronger than before.

June 7, 2022, I had my follow-up and asked about the firmness of the graft area. He mentioned that there will probably always be a bump but it should not be as bad as the Peyronie's itself and that things looked as they should. He also mentioned that I still have a lot more healing to go and to not be discouraged and my erections are something to take as a good sign. I asked about the upward curve and he asked how my penis was prior to Peyronie's. It was difficult to recall....it has been so long....but I did have a slight upward curve prior to Peyronie's and the current curve does seem to take on more of that trajectory. Gradual, even, and the "hinge" is no longer there at all so it doesn't bend in half.

That did give me a lot of encouragement. Today, I am still in the same boat. Healing, hoping that this is it and feeling encouraged that I may be able to put this behind me. It looks like my normal penis now, size is definitely returning, pain subsiding, and erections still strong. I was released to try sexual activity with my wife at the last appointment but still have not attempted. It has been so long and, honestly, not even sure how to get that ball rolling again. I know she is in the same place as me. I know we will figure it out....we still love each other very much and came this far together and we will get there again. I have also cut back on my Lexapro medication and will be off that soon. I just wanted to make sure that I was seeing the full affect and taking anything out of the equation while healing. Let's face it....this disease is tough for many different reasons.

I do hope that some out there that were in the same boat as me, feeling lost and like there is no end in sight, willing to try anything to get something back that you lost....people can say "it's just your dick" and insurance companies will make you feel like it isn't important but....it is, folks....my wife could explain how important it is but not having that part of your relationship can be very taxing...it is important and don't give up. I don't know if this is the be all and end all for me....if it is, AWESOME!! If not....I will be on to the next thing...
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

Mikel7

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What an awesome encouraging post! This definitely will give encouragement to others! :)  Mikel7
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Stabler

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Thank you for sharing your story

Stabler
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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.

AskinForAFriend

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Well, I was able to have successful sex on Saturday. I talked with my wife and realized much of my problem is anxiety. We go through so much with this disease and my brain took things so far to shut down how I felt about the issue that I simply felt that I cannot have sex so I got to where I never thought about it. Of course, I kept pushing on for my wife and relationship but the mind does strange things.

Turns out, my anxiety was about the potential of failure. The very few times we tried to have sex over the last couple of years were absolute failures and no possible penetration. After going through a surgery it is very difficult to think anything other than it will not be successful. But, it was successful with penetration and completion.

I have definitely lost a lot of length since the start of Peyronies Disease, which I hope to gain some back as time goes on. The graft is very hard and there is a "hinge" at the bottom of the graft but my erections seem good enough for it not to buckle. It curves upward at this "hinge" spot a bit but, I am hopeful the graft will soften as time goes on and maybe release the curve some.

Traction tends to get painful after some time so I tend to take days off here and there even though I just want to keep doing it to help it out.
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

Mikel7

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Turns out, my anxiety was about the potential of failure. The very few times we tried to have sex over the last couple of years were absolute failures and no possible penetration.

This is so true for a lot of us here - me included.  Sounds like you are on the mend!!  Great post!!
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.
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