FrankTalk.org

Hi all,

This is my first post after discovering this site a week or so ago. Bit of background about me:

- 26 years old and from the UK
- I have a pretty complex medical history which I won't go into in too much detail, being diagnosed with an autoimmune disorder similar to lupus when I was 9 years old for which I still receive c.6 monthly infusions of rituximab (a monoclonal antibody often used in cancer but also rheumatological disorders). I have also throughout my life been on azathioprine and methotrexate, two relatively powerful cytotoxic agents which I believe may have impacted my sexual ability. Condition completely under control though and doesn't impact my day-to-day life
- started having erection problems around the age of 19, so c.7 years ago which co-incided with my first girlfriend and hence initially led me to believe they were psychological issues
- I am able to get what most men would refer to as a semi and can masturbate to orgasm/ejaculate. I don't wake up with morning erections and probably haven't had in any shape or form a full erection in the L5Y
- I do have varicocele on the LHS of my scrotum which a urologist pointed out. Not sure if this is of any importance?
- have tried both sildenafil (up to 100mg) and cialis (20mg) as well as caverject (20mcg) with minimal effect. All improve blood flow slightly but not to an extent where sex or maintaining an erection is possible
- a few years back I had some psychosexual counselling which had no effect or improvement on my erectile capacity
- have been on TRT at 16 for delayed onset of puberty as well as more c.2 years ago when my physician believed my low testosterone levels may have been the cause of my ED. I am no longer on TRT and a blood test from two weeks back showed testosterone to be within normal levels: 12.3nmol/L (normal range: 8.4-28.7nmol/L) and SHBG of 31nmol/L (normal range 17-66nmol/L)
- booked in for a doppler ultrasound in a few weeks which hopefully can point towards the aetiology of condition and assure me it hasn't solely been psychological. I'm of the opinion I probably have severe VL

I now feel as though I am at a cross-roads. The idea of an implant at 26 isn't particularly appealing, both from the replacement cycle standpoint as well as my perception that girls in the 18-30 bracket may think it is odd. However I keep telling myself, any erection, manual or not is better than no erection?

Apologies for the long post, however wanted to make sure I didn't exclude any info on my journey over the last 7 years. I welcome any advice!

Tell tale signs of severe venous leak. I believe that will be your diagnosis. There are only a couple options if you are diagnosed. Ligation surgery is experimental and I've never heard of a patient being cured permanently. You could either use a pump with a ring or get implanted. I was in your shoes and got an implant. I'm happy. If and when you are ready for an implant, I strongly recommend going with a top surgeon.

It's hard to imagine what it must be like to be as young as you are and struggling with severe ED. I am 4 days post implant and excited about my future. At my age it is quite possible that one implant will get me out. My concerns for you :

At 26 if you got 12 years out of each implant you would still need perhaps 4 replacement over your life. My procedure went nearly perfect, but this is not a walk in the park. You will have a tough week each time followed by several more weeks of discomfort. I would guess if I were you I would go ahead, but even more important that you get a very high volume surgeon and discuss everything with him upfront.

Hey star_of_pramen,

I am also a 26 y/0 with ED. I was in a car accident 3.5 years ago that left me with scarring in my left corporal cylinder (the thing that inflates). Urologists who have seen my MRI scans believe that the scarring is causing venous leak. Basically, the base of my left side doesn't inflate all the way, and the erection is nothing what it should be.

Since about the 2 year mark of my injury I have been contemplating an implant. After 1.5 years of research I have decided that if my alternative methods have not restored my function to an acceptable level then I will be implanted by either Eid or Kramer with a Titan.

You mentioned that you feel uneasy about younger female's perception of an implant at our age. I use to contemplate that. And now, after thinking about it for so long, I don't actually think its something they would really care about, or that you should worry about. I basically went from a nightclub casual lifestyle to a non-existent sex life. Reflecting back on my sexual partners I am guessing that they would not care. And, with a high probability of not recovering my penis to its present state, I dont care about some chicks perception of my bionic dick. I also thinking having a confident and not-giving-a-shit personality with an implant will make girls also not give a shit. And thats how I plan to act with it.

My remaining concern is, as you mentioned, having recurrent future surgeries. Ya the recovery each time will suck, and so will paying out of pocket since my field doesn't really over nice insurance. And at our age, we cannot get Medicare, which is kinda of funny. I talked to Kramer over the phone and discussed costs of inevitable corrective surgery. Its really quite affordable, especially with a little financial planning.

Anyways, I hope this post also shows you aren't alone. I will keep you up-to-date on what I do. Most likely I will schedule surgery by September 2017 or January 2018, depending on work.

Send me a PM if you ever want to skype or whatever.

I was 39 when my ED got bad (not yet in the red severe category). If it were me knowing what I know now and on my second implant, I would go for it. It is very very hard to make that decision. Having a had a crappy unusable implant for 13 months, then getting one that works and Sunday using it for the first time, solidifies that thought. If a 59 year old man and a 66 year old wife can get all excited doing the deed then certainly it will be a game changer for you. I would talk to a very good doctor though. No fly by night does 16 implants a year doctor. You are on some serious $#it with those meds. I do not know how they would affect healing but so that may be an issue to address with all your doctors. Immune issues will not prevent an implant. I have HIV and allergies to everything. Immunity hell but maybe not on the level you have had to deal with. I DO KNOW that getting your sexual parts back in order DOES help your overall well being. Improves your mood from every direction and good things follow from there. I tell you this from Experience. Go for it man. Good luck to you sir and many hugs.

Thanks all. To be honest, the replacement cycle is less of an issue for me. If I could at least have a penis that worked for 15 years that would be good ha. Luckily for me, being in the UK, the NHS will cover any replacements. With regards to my autoimmune disorder, I have had surgery before and although the drugs I am on make me immunocompromised and more susceptible to infection, it wouldn't prevent me having the procedure.

shooter_100 let me know whatever decision you make and how it goes. I like you have now come to the point where I probably wouldn't give a shit if a girl noticed or not........it's better to be able to have sex bionically than not at all haha.

I will keep you all updated with the results of my doppler.

Hi Star,

I also live in the UK and I'm awaiting my referral to Mr David Ralph at the UCHL.

Please keep me posted to how you get on.

Regards
Gollam121

gollam121 wrote:Hi Star,

I also live in the UK and I'm awaiting my referral to Mr David Ralph at the UCHL.

Please keep me posted to how you get on.

Regards
Gollam121

Hi Gollam,

I am seeing Dr Muneer at UCLH, although I don't know if he is the surgeon........I've heard from reading on this site that David Ralph has a very good reputation so if I go ahead with the procedure I am plannning on requesting for him......although knowing the NHS, i don't know how much flexibility I will be given

Will keep you updated and please do the same

star_of_pramen wrote:

gollam121 wrote:Hi Star,

I also live in the UK and I'm awaiting my referral to Mr David Ralph at the UCHL.

Please keep me posted to how you get on.

Regards
Gollam121

Hi Gollam,

I am seeing Dr Muneer at UCLH, although I don't know if he is the surgeon........I've heard from reading on this site that David Ralph has a very good reputation so if I go ahead with the procedure I am plannning on requesting for him......although knowing the NHS, i don't know how much flexibility I will be given

Will keep you updated and please do the same

I know Mr Muneer is also very good and who knows I may get him on the NHS lottery. Please PM me anytime. It would be good to have a UK implant buddy

Best of luck to you both. Glad the immunity issue has been no issue. Many doctors made it an issue for me but I too have had many surgeries, some when highly compromised and the immunity issue was no issue healing for me healing either. Actually my immunity level is the best it has been in 10 years and I am healing the slowest I ever have so I don't think that has much to do with healing but more with getting older.