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Author Topic: Introduction - Made it here in the end  (Read 213 times)

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FlatteningTheCurve

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Introduction - Made it here in the end
« on: September 14, 2020, 10:23:59 AM »

Hi all,

Was diagnosed with Peyronies about 3 years ago following a trauma. Due to quite severe pain once the plaque emerged, the specialist urologist I was seeing told me to wait until the pain subsided and that the only option available was surgery. 

After 2 years, and after the angle of my curve had gotten considerably worse, I gave up and found another specialist. I am in my early thirties and was also realising that the condition was starting to considerably affect my life. This new doctor told me about other forms of treatments, traction devices etc. He also informed me that my condition could have been helped by early intervention/injections and so on. Unfortunately, Xiapex/Xiaflex was no longer available in Europe at that time. 

Alas, I have now managed to acquire a Restorex and started to use it (with great difficulty) and hope it will get better from here.

It was actually when I was searching for advice about the Restorex that I came across this community. I have already started to explore some of the content here, but would be happy to hear if you have any additional advice for me at this point.
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Early 30s, diagnosed with Peyronies after trauma during sex. Upward curvature, currently multiple plaques. Giving Restorex a go.

Tombone

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Re: Introduction - Made it here in the end
« Reply #1 on: September 14, 2020, 10:54:30 AM »

Hi there! Im sorry to hear about your condition? I also had a trauma/injury and might be in the acute phase or it might be healing from injury and scarring that makes the pain. Can I ask what kind of trauma you had and if it developed slowly or fast? I have had severe pain for 5-6 months and can for sure feel scarring or plaque forming. I find it strange that some get peyronies and some dont after trauma. I hope you get some help and answers here on this forum.
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Slight curvature to the left when erect (10-15) More curvature when flaccid. Severe pain. Anxious. Got diagnosed with Peyronies Disease chronic phase in 2016. New injury 5 months ago. Been seeing several urologists wich all say its not peyronies. 38 years old.

peter123

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Re: Introduction - Made it here in the end
« Reply #2 on: September 14, 2020, 11:01:53 AM »

good to see more europeans realize the f'~c<+d up situation that has been happening in the treatment of this disease. first there is no real expert and then they take the only drug that has some efficiency from the market. its truly ridiculous. xiaflex should have never been taken off, their analysis of it not giving and benefit to the patient over surgery is absolutely outrageous. criminal behavior, thats what it should be considered. now for many men the only option once again IS surgery.

as for injections I recently read a study from the major clinic and it was written by the creators of restorex. they suggested interferon injections are the best alternative to xiaflex and that its about 70% as good.

https://pubmed.ncbi.nlm.nih.gov/23688848/

also something you might find useful is this video from said doctor on peyronies disease and its also on the use of restorex and some advice

https://www.youtube.com/watch?v=82g7ViTj94U&t=2621s (30 minute mark is about interferon as said earlier there'll be a new paper, id watch the whole video)

interferon could be an alternative to xiaflex for patients in Europe as it is much more affordable.

it is also recommended to add PDE5i to this first line treatment.
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onset of symptoms in February 2020 initial pain when flaccid only which has since improved. 20deg left curvature, loss of girth indent
started oral treatment in march, currently on Potaba 12mg 1200mg Pentox, 2.5mg Taladafil and L-arginin
very depress

FlatteningTheCurve

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Re: Introduction - Made it here in the end
« Reply #3 on: September 14, 2020, 01:09:58 PM »

Hi again,

I realised I could clarify the situation by providing a timeline:

Some time in January 2017: Heard a loud cracking noise during sex (unusual angle) and felt some pain at the time, but nothing else so I did not bother with it;
May 2017: Started to feel some sort of lump (main plaque) at the mid and centre of the penis, went to see a GP who referred me to a urologist;
Aug 2017: Met with the first urologist, told me that nothing could be done as long as I felt a general pain. Once the pain would subside, they could consider Xiaflex and/or surgery;
Feb 2018: Hourglass-shape started to appear, pain remains;
Nov 2018: Slight curve begins to emerge;
Nov 2019: The urologist refers me to another clinic but also tells me Xiaflex is off the market due to lack of treatment effect. Also tells me a different story now, that he would never have used Xiaflex in my case as my penis was long enough for penetration to be possible after surgery;
Jan 2020: Additional plaque emerges that is separate from the original one, closer to the pelvis. Now one hourglass-shape surrounding the original plaque while erect, the plaque is roughly 1/2 cubic cm in size. Apart from this, two different semi-hourglass shapes have now emerged. Having more problems with erectile dysfunction at this point, not only upward curve but also a rotation to the left;
March 2020: Met with yet another specialist who referred me to a colleague of his;
June 2020: Met with another urologist who said nothing can be done about the pain or the different plaques but recommends trying Restorex before doing anything else (Btw, he also told me that Xiaflex was pulled off the market because the company (Sobi) did not make enough money off the product outside the US, seems like everyone has got a different story on the reasons);
Sep 2020: Started to use Restorex (took a while for me to get hold of it...)

When it comes to the Restorex, I've started to go through the different threads here for some advice. My main problem is that either tip slips out of the clamp or I end up having to close the clamp so tightly that the tip goes numb, which I am not sure is a good thing.

Tombone: Thanks for your comment, hope that answers your questions.

peter123: Thanks. Do you know if Interferon is available at European clinics? It would certainly help if I did not have to travel to the US for injections, if it even helps at this stage and I can afford it. I haven't heard of it before.
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Early 30s, diagnosed with Peyronies after trauma during sex. Upward curvature, currently multiple plaques. Giving Restorex a go.

Tombone

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Re: Introduction - Made it here in the end
« Reply #4 on: September 14, 2020, 02:58:29 PM »

 Thanks for sharing your story. Hope restorex will give you good results and wish you all the best!
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Slight curvature to the left when erect (10-15) More curvature when flaccid. Severe pain. Anxious. Got diagnosed with Peyronies Disease chronic phase in 2016. New injury 5 months ago. Been seeing several urologists wich all say its not peyronies. 38 years old.

BrettC

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Re: Introduction - Made it here in the end
« Reply #5 on: September 14, 2020, 04:10:05 PM »

You have the Restorex which is a good tool to start with. 

Patience is going to be key.   I notice I too slip out, sometimes multiple times during a session.  Other times the whole thing stays put.  I asked my doctor if this is common, and he said absolutely!  So no worries there.  But work with it, and see it you can get as much tension and opposite curve as you can. 

My tip does go numb also.  I don't think it ultimately hurts anything... just a minor annoyance until the blood gets back up in there...

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49 years old
Diagnosed just under 1 year
Xiaflex treatment pending... trying supplements, traction, and anything I hear about

TonySa

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Re: Introduction - Made it here in the end
« Reply #6 on: September 14, 2020, 05:10:10 PM »

Welcome, be sure to read the survival guide here.  I’d consider adding low dose generic cialis nightly (2.5-5mg) and if you can get it-pentox.  Both help to remodel plaque to healthy tissue.  Daily VED may also help w the hourglassing. 
https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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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.

jan.schaller1958

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Re: Introduction - Made it here in the end
« Reply #7 on: September 14, 2020, 10:45:49 PM »

It is unfortunate that Xiaflex was taken off the market in Europe. It‘s just the greedy pharmaceutical company that manufactures it wanting to make a ton of money is the only reason. In the US, if you have good insurance, they’ll pay for it. The pharmaceutical company can’t justify the cost. They always say, „Well, we have to recoup our development costs.“ Yeah, sure. For like 20 years before it goes generic? I told my ex-Boss that the pharmaceutical companies were just rip off artists with their costs, and just getting rich on all of us. He said, „Well, if you feel that way, go buy some of their stock.“ Interesting perspective. Guess he has a point, but it still sounds like a rip off to me.
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peter123

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Re: Introduction - Made it here in the end
« Reply #8 on: September 15, 2020, 08:05:23 AM »

Yes interferon is available, it's a compound used for many other issues. But it's not cheap either but an alternative to xiaflex. Verapamil is ver, cheap but with even less benefit
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onset of symptoms in February 2020 initial pain when flaccid only which has since improved. 20deg left curvature, loss of girth indent
started oral treatment in march, currently on Potaba 12mg 1200mg Pentox, 2.5mg Taladafil and L-arginin
very depress

FlatteningTheCurve

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Re: Introduction - Made it here in the end
« Reply #9 on: September 17, 2020, 01:41:45 AM »

Thank you all for your support and advice. Glad to hear I am not the only one experiencing this issue with Restorex.

I will check with my doctor about prescribing cialis and pentox.
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Early 30s, diagnosed with Peyronies after trauma during sex. Upward curvature, currently multiple plaques. Giving Restorex a go.
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