New Member Here - How you doing?

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Seeking
Posts: 78
Joined: Sun Mar 15, 2015 12:03 pm

New Member Here - How you doing?

Postby Seeking » Thu Jul 16, 2015 4:45 pm

Hi there,

28 year old from London here - problems started happening overnight four years back, it used to be a chore just tryna keep my little guy soft for more than an hour and now its completely flipped around: sub-par morning erections (if any), instant deflation if not stimulated etc. All the stuff I'm sure you know too well.

I'm undergoing a relatively novel treatment in August/September of this year which closes off some of the penile veins in an effort to treat venous leakage, so will be posting like a madman tryna keep you all updated and let you know whether I think this is worthwhile - if you're a venous leak sufferer and you reside in Europe (and even if you don't), be sure to keep an eye out and lemme know if you have any questions.

The worst thing for me is knowing that, even if you feel like a king whilst on pills or using whatever treatment works for you, one day - yes, one day - you're gonna need an implant. Might be a decade away. Might be a few decades away. But your member in some shape or form is damaged and all you're doing now is just buying time (save for some miracle cure).

It's great to have the privilege to talk to you all on here - I hope you're all doing well.

Catch you soon.

Cheers.
38 Years Old. HF symptoms since age 23 (tight pelvic floor).
Tried pills, sclerotherapy.
At about 40% function currently but reluctant to wait much longer for an implant.

wolfpacker
Posts: 1127
Joined: Thu Dec 12, 2013 10:16 pm

Re: New Member Here - How you doing?

Postby wolfpacker » Thu Jul 16, 2015 11:24 pm

Please do keep us updated about your procedure! Also, I know what you mean about the implant. My biggest fear is their longevity: their main users are 60-70+ year old men who only have a decade or two left to live. If a 28 year old got an implant now, he would need it to work for the next 60 years. Of course no one has ever had an implant for that long, so who knows what could happen. As you said, buy yourself time for as long as you can!
Early 30s with ED for years from penis enlargement stretching and jelqing. Implant by Dr Eid on 24 June 2021 with a Titan 24cm with +1cm RTE on one side and -1cm cut off on the other side

My journal: viewtopic.php?t=17202

RugbyDave
Posts: 128
Joined: Tue Dec 27, 2011 2:15 am
Location: Dorset, United Kingdom
Contact:

Re: New Member Here - How you doing?

Postby RugbyDave » Sun Jul 19, 2015 3:38 am

Welcome - keep us posted on how you are getting on.

UK based as well - had my implant surgery at UCLH. With some fantastic UK Hospitals where are you getting your treatment.

Dave
Diagnosed at 49 with PC - Biopsy Gleason 3+4=7
Radical Prostatectomy 14/07/08 - PSA now undetectable
ED since op
Implanted with AMS 700LGX - 26/07/13 @ UCLH London
http://rugbydave.blogspot.co.uk

Cal2014
Posts: 10
Joined: Sat Nov 22, 2014 6:36 pm

Re: New Member Here - How you doing?

Postby Cal2014 » Sun Jul 19, 2015 6:21 pm

Seeking,

Sorry to have to welcome you here.

Is this vein occlusion surgery something new? The reason I ask is because I've read about an old type that seems to work for about 3 months before the patient begins suffering from ED again. Sorry to rain on your parade with that news, but I'm just wondering if what you're having done is something different?

Have you tried other options leading up to this decision and what were their results?

Cal

Seeking
Posts: 78
Joined: Sun Mar 15, 2015 12:03 pm

Re: New Member Here - How you doing?

Postby Seeking » Mon Jul 20, 2015 2:17 pm

Cal - no need for apologies, this forum is called FrankTalk after all ;)

It's a good point - I know that venous ligation surgery has a very short timespan of efficacy, like you mention it's about 3 months. The main research paper I looked at which outlines the Sclerotherapy (Herwig 2015) I think (but I haven't re-checked) demonstrated efficacy for over a year possibly more. The urologist at London Andrology specifically constrasted venous ligation and sclerotherapy stating that venous ligation is generally not respected in the medical world any more but that progress has been made with the new sclerotherapy treatment. It might sound a bit crazy but even after paying £3500, this is such a horrific condition that if I contribute positively at all to people on here (and the world in general) finding more about what works and doesn't in the ED treatment world, I don't care. If it works it'll be life changing, if it doesn't well unfortunately sometimes making progress is as much about knowing which roads lead to dead ends as well as which ones bring you onto the straight and narrow.

Re: other options, funnily enough when I first developed this condition I tried a kegel routine which almost brought me back to 100%, but I found after exercising the muscles for around 1-2 weeks it became very hard to locate the right muscles and the 'feel' of the exercises just felt a bit off...it's especially difficult to kegel if you need to take a dump so it just made the whole routine of doing them a bit of a chore. In terms of effectiveness though they worked very well. I've got some time off from work at the end of August and so I'm going to try a kegel routine coupled with using a vacuum device for 5 minutes after each kegel set (just to engorge the penis for a while - night erections aren't what they once were) and I'll post my progress on that as well. At the moment I'm just using Levitra as and when I need it - I try to keep pill use to an absolute minimum as I'm worried about tolerance building up (which is probably unfounded but oh well).

RugbyDave – as so many reviews I’ve read re: implants were from people operated on in the US, I’ve actually developed a bizarre sort of mental aversion to getting any implant surgery (were it to happen) in the UK, simply because it’s a bit of a black hole information-wise and my experience with my NHS urologist in the diagnosis stage has been very dispiriting. I would love to know what your story is, how you got on with the NHS (or was it privately done?) and what your overall experience was like – UCLH is a fantastic hospital though. I’ll get in touch now buddy, thanks so much for mentioning that.
38 Years Old. HF symptoms since age 23 (tight pelvic floor).
Tried pills, sclerotherapy.
At about 40% function currently but reluctant to wait much longer for an implant.

Cal2014
Posts: 10
Joined: Sat Nov 22, 2014 6:36 pm

Re: New Member Here - How you doing?

Postby Cal2014 » Mon Jul 20, 2015 11:48 pm

Seeking,

I like your attitude and your spirit. I particularly like how you're not just thinking about yourself, but you're considering others as well.

It sounds like kegels and levitra were working for you?

Cal

Seeking
Posts: 78
Joined: Sun Mar 15, 2015 12:03 pm

Re: New Member Here - How you doing?

Postby Seeking » Tue Jul 21, 2015 4:09 pm

Kegels and levitra at first were working well, yes. Then I just found the kegels impossible to maintain, I never really found a routine that was right for me. I need to give them another go because their efficacy was kind of astounding.
38 Years Old. HF symptoms since age 23 (tight pelvic floor).
Tried pills, sclerotherapy.
At about 40% function currently but reluctant to wait much longer for an implant.

Cal2014
Posts: 10
Joined: Sat Nov 22, 2014 6:36 pm

Re: New Member Here - How you doing?

Postby Cal2014 » Thu Jul 23, 2015 11:51 pm

Would like to hear more about the routine that worked for you when you get a chance.

Cal

gerryspyros
Posts: 3
Joined: Thu Jul 23, 2015 7:29 am

Re: New Member Here - How you doing?

Postby gerryspyros » Tue Aug 11, 2015 8:59 am

Cal2014 wrote:Would like to hear more about the routine that worked for you when you get a chance.

Cal


hi all
New here too..I look forward to your advice and experience guys on treatments and surgeries...I feel that I have a lot to learn...

gerryspyros
Posts: 3
Joined: Thu Jul 23, 2015 7:29 am

Re: New Member Here - How you doing?

Postby gerryspyros » Wed Aug 12, 2015 8:43 am

gerryspyros wrote:
Cal2014 wrote:Would like to hear more about the routine that worked for you when you get a chance.

Cal


hi all
New here too..I look forward to your advice and experience guys on treatments and surgeries...I feel that I have a lot to learn...


I feel that first of all i need to consult a doctor guys, who will judge whether oral medication is appropriate, which is the best drug for me, the dosage and for how long I need to take it...and so on. I currently live in London..any suggestions?


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