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[JamieKer56]

Hi All,

Here’s my story and questions; I hope you can help.

I was first diagnosed with Peyronies in October 2020.

I eventually (!) got referred to a urology consultant, who I saw in April 2021.

Following that I was advised to use a VED, and I also bought a Penimaster Pro (with usual advice to use 6 hours a day!)

As maybe many people understand, life gets in the way of doing what we need to for our health (usually ends up at the bottom of the pile).

I couldn't manage 6 hours a day using a Penimaster Pro and VED device. At the start (April 21) I did my best using both the VED (adhoc days) and the PMP (2-3 hours on adhoc days), but the frequency became less due to life and many responsibilities.

My current situation is I have a 45 degree curve to the right, which also dips downward. I have scarring at the base of my penis (on the right side) and also scarring on my shaft, which causes hour-glass pinching on both sides of my shaft. My consultant feels the penis curvature has probably stabilised now (I’m not so sure).

I've had a meeting with the consultant again last week.

He's recommended surgery to help straighten the penis; but he said there are risks. I've not been told what procedure they recommend (maybe the consultants follow-up letter will advise this), but reading general information provided it may be Plication (?)

One issue is the hour glass pinching on the shaft of my penis. If I have surgery, due to the pinching apparently there's a risk the penis could become less stable after undertaking the procedure on the left side of my penis, which may accentuate the hour glass pinching and could make erectile dysfunction worse. There are some other general risks associated with these procedures.

The question is, should I live with a 45 degree bend and maybe give RestoreX a go (it’s not as time consuming as PMP, so maybe I’ll have time to use this device more regularly)…?

Has anyone used RestoreX some time after their Peyronies started (nearly two years) and achieved some positive results?

Has anyone experienced more scarring that they feel may be due to using RestoreX?

I’m trying to ascertain whether living with a 45 degree curve is better than surgery, and maybe making a concerted effort to reduce the curve using a device that might be less time consuming.

Any other suggestions regarding my current circumstances?

Your thoughts would be appreciated.

Thanks

[Muttley]

I eventually (!) got referred to a urology consultant, who I saw in April 2021.

What was the name of the Uro you saw?

Has anyone experienced more scarring that they feel may be due to using RestoreX?

I haven't

I’m trying to ascertain whether living with a 45 degree curve is better than surgery, and maybe making a concerted effort to reduce the curve using a device that might be less time consuming.

The general consensus of opinion I see here is that if you can still perform  sexual intercourse to an acceptable level of satisfaction (you and your partner) then do not have surgery. It is of course entirely your decision.
I have used  the Rx device for 16 weeks and used it religiously; I do two sessions per day and each session is about a half an hour long. I haven't seen any significant improvement to-date; I started using it about six or seven months after I realised I had Peyronies Disease.
I also used the VED for three months, adhering to the daily practice i.e. twice a day for about a half an hour at a time.

It would be useful to know what type of surgery you have been recommended and the reasons for that recommendation.

[JamieKer56]

Hi There,

My consultant was Mr Modgil (based at the Urology Dept at Manchester Royal Infirmary).

I’m not exactly sure what procedure my consultant has in mind at the moment. I think it may be Plication; I think details will be sent in the follow up letter (to be sent after our meeting last week).

I have to decide whether to live with a penis with a 45 degree bend (and downward dip), or risk a surgical procedure. If I have surgery and things are made worse, that may not be good for my mental health (!).

I've been asked to read a datasheet compiled by the British Association of Urological Surgeons (BAUS) which explains the procedures and the risks involved:

https://www.baus.org.uk/_userfiles/pages/files/Patients/Leaflets/Penile%20straightening.pdf

My consultant advised that as I had an hour glass pinching on the shaft of my penis, having surgery could accentuate the indentation and make things less stable when fully erect. There was also a higher risk of erectile dysfunction after the op due to the same reason.
 
My meeting with the consultant last week was over 12 months following my first meeting with him.

My consultant was obviously waiting for the Peyronies Disease to stabilise before assessing things and suggesting the possible next steps.

Due to a very busy life (many responsibilities during the past few years) I’ve not been able to commit the time to using a VED nor PMP (consistently). Probably many people with our condition are the same (?).

One question I asked the consultant was if I give the PMP and VED another go over the next 12 months, could that help reduce the curve? He said probably not.

I think he felt it probably wasn’t realistic for many people to use devices like PMP for as long as advised (6 hrs per day for PMP).

I have some questions if that’s OK?

How come you stopped using the VED?

How did you buy Rx considering the manufacture does supply direct to the UK?

How long will you continue to use Rx considering no tangible results so far?

Do you take any additional medications, supplements etc? My consultant just advised me to use a VED. It seems consultants in the US often suggest other things could be tried (medication, supplements etc)

Look forward to hearing from you.

Cheers

Jamie

[Muttley]

My consultant was Mr Modgil (based at the Urology Dept at Manchester Royal Infirmary).

Oh, I have not come across his name before.

How come you stopped using the VED?

I just thought that the Rx would be better and I could not commit to doing both at the same time with the time I had available. Having said that, recently I have started to add sporadic VED sessions as well but sometimes that means I do only one Rx session a day instead of two.

How did you buy Rx considering the manufacture does supply direct to the UK?

A chap in England had bought one and had decided it was not for him and offered for sale it on this site

How long will you continue to use Rx considering no tangible results so far?

Well, if I wait for the NHS operation, I have until the New Year before I will get called in. I work from home and can use it without it impeding my work. Consequently, I shall keep going all year until it either improves things or it becomes evident that it will never work.

Do you take any additional medications, supplements etc? My consultant just advised me to use a VED. It seems consultants in the US often suggest other things could be tried (medication, supplements etc)

I take the following on a daily basis:

• L-Citrulline
  Chelated Copper
  Pycnogenol

Hope that helps

[MrDoh]

I'm not an expert or a urologist, just a hopeful grasshopper, but I think that I'd give the RestoreX a shot before getting into risky surgery. I'm in the midst of using it, and am satisfied with how things are progressing. Light at the end of the tunnel sort of thing *smile*. I have a curve to the left and a kink upwards. Neither is very bad, but are slowly improving with the use of the RestoreX. I'm focusing on the kink upwards, that's the one that needs more treatment. It is expensive, and may be hard for you to get in the UK, I don't know, but that's what I would try first...lowest impact on you, and you can most likely manage two 30 minute sessions a day. If the RestoreX helps you, there you go...but as had been said, it's a process and those of us with less patience just have to wax philosophical about it.

Before I started, my thinking was doing one session in the morning and one just before I went to bed. Turns out I do one after my morning walk, and one before dinner (4 or 5PM). The sessions only need to be 30 minutes apart, which makes things quite flexible, timing-wise. I am retired, though, and the kids have left home, which leaves me with a lot of flexibility.

Anyways, like everyone else I looked at a lot of things, Xiaflex shots, Phoenix Pro, RestoreX, surgery, pumping, etc. Picked RestoreX as the lowest impact, least risky starting point. And, like I said, happy that I did.

[JamieKer56]

Thanks all for taking the time and trouble to respond.

Some good advice given.

A question for Muttley:

Did you get the idea of taking supplements from this forum or did your consultant recommend them?
My consultant didn’t advise anything other than VED.
I get a feeling he feels all these different initiatives to try to improve things won’t make a huge difference (?).

But we need hope and just a slight improvement is a benefit.

I’d never heard of Peyronies Disease until I got this at 56. You would expect something like this had far greater awareness, which would hopefully attract far more investment in research. This needs the same level of outward promotion and exposure (excuse the pun) as prostate cancer.

Thanks

[Muttley]

Hi Jamie,

I got the idea for the supplements I listed purely from this forum. I did a lot of searching through the archives and made notes about what seemed to be working for different people.

I should add that , using that approach, I also started having daily Ginger infusions using fresh ginger. I was also taking magnesium. I have not been taking either of these for a while now for no other reason than I just fell out of the habit.

If you do similar searches, you will find more information.

Regarding Rx and success: I am starting to suspect that Rx will have some positive effect but that it is much more effective the less severe the curve/bend. I have noticed that those with shallower bends have more success.

[MrDoh]

I'm not an expert or a urologist, just a hopeful grasshopper, but I think that I'd give the RestoreX a shot before getting into risky surgery. I'm in the midst of using it, and am satisfied with how things are progressing. Light at the end of the tunnel sort of thing *smile*. I have a curve to the left and a kink upwards. Neither is very bad, but are slowly improving with the use of the RestoreX. I'm focusing on the kink upwards, that's the one that needs more treatment. It is expensive, and may be hard for you to get in the UK, I don't know, but that's what I would try first...lowest impact on you, and you can most likely manage two 30 minute sessions a day. If the RestoreX helps you, there you go...but as had been said, it's a process and those of us with less patience just have to be philosophical about it.

Before I started, my thinking was doing one session in the morning and one just before I went to bed. Turns out I do one after my morning walk, and one before dinner (4 or 5PM). The sessions only need to be 30 minutes apart, which makes things quite flexible, timing-wise. I am retired, though, and the kids have left home, which leaves me with a lot of flexibility.

Anyways, like everyone else I looked at a lot of things, Xiaflex shots, Phoenix Pro, RestoreX, surgery, pumping, etc. Picked RestoreX as the lowest impact, least risky starting point. And, like I said, happy that I did.