Deteriorating ED (UK Members?)

Sticking a needle Where? Courage, guidance and help.
rich2222
Posts: 20
Joined: Fri Oct 18, 2013 12:28 am
Location: Bristol, UK

Deteriorating ED (UK Members?)

Postby rich2222 » Mon Dec 04, 2017 1:09 pm

Here’s hoping there are some UK contributors with relevant experience!

Some background….
Overweight and in a high-stress sedentary job, I was previously diagnosed with Diabetes T2, high BP and high Cholesterol. I also experienced a  minor Heart attack. All of this was subsequently controlled through diet and meds (BMI, BP, Cholesterol and BGL are now in “Normal” ranges).
With low Testosterone and early signs of ED, initially I was prescribed with Testogel by my GP. As the ED symptoms worsened, I was referred to the  Urology department in Bristol, where I have been on their annual review list for the last 5 years. Initially I tried Levitra and on-demand Cialis (but responses and response times were too unpredictably table) as well as a VED (not really effective and we both hated the unnatural sensations).
Currently prescribed treatment is Nebido (every 10 weeks) and Tadalafil (3 x 20mg per week).
Up to 4 months ago, things were working quite well, but have now deteriorated significantly to the point of a total lack of confidence and (on occasion) capability.
I have asked for a Urology appointment (3 months ahead of the planned annual review) but would be interested in feedback on a number of issues beforehand. Most of the research I have done so far is USA based and I wanted get the NHS / UK angle.

   1. Any individual experience / views on the likely options at the next stage?
   2. I have tried Vitaros Alprostadil privately (no good) but haven’t tried Muse pellets. Any views on effectiveness of Urethral pellets? Also, I have read reports of associated pain afterwards. Any strong opinions out there?
   3. My feeling is that I may be heading towards injections. The actual injection doesn’t bother me, but I wanted some feedback on post-injection aches and pains.
   4. What types of inter-cavernosal injection (Caverject / Viridal / Others) are currently being prescribed in the UK and why?
   5. If it is a matter of choice, what are the Pros & Cons of the different injections?
   6. Based on previous history, an average of one treatment per week would not be enough for us. What experience do others have when requesting Private Prescriptions from their GP in addition to their NHS prescription?
   7. What is the sequence & timings of the injection process under the NHS?
       ○ How many visits to the ED Clinic
       ○ What happened at each visit
       ○ What interval between visits?
○ How many treatments were issued before your GP started to prescribe?
   8. Any do / don’t do recommendations for my upcoming Urology appointment?
   9. What else should I be thinking about?

I understand that there are many questions here, but if you could find the time to answer any of these, I would be grateful.
63 years old
2006 Hypergonadism (Nebido Injections since 2016)
2007 Minor heart attack
2012 T2 Diabetes
2013 Erectile Dysfunction (Initially Tadalafil, then Alprostadil from early 2018, but too much pain. Now using Invicorp very successfully)

Bluewhippet
Posts: 56
Joined: Wed Aug 22, 2012 7:19 am

Re: Deteriorating ED (UK Members?)

Postby Bluewhippet » Tue Dec 05, 2017 1:32 pm

Hi Rich2222
I have sent you a private message
Bluewhippet
74 yr Type 2 diabetic, long term ED, pills then injections (Caverject). After 4 years they became less effective. Implanted by Mr Summerton at Leicester General Hospital 20/3/2018. AMS 700 CX 15+3 cm with MS pump. Essentially pain free since operation.

rich2222
Posts: 20
Joined: Fri Oct 18, 2013 12:28 am
Location: Bristol, UK

Re: Deteriorating ED (UK Members?)

Postby rich2222 » Mon Feb 05, 2018 11:22 am

Update

Nearly at the end of the NHS process now
Much better informed (with excellent help from a couple of FT members)
If there are any UK members about to go on this journey, send me a PM, and I will share ny experiences with you
63 years old
2006 Hypergonadism (Nebido Injections since 2016)
2007 Minor heart attack
2012 T2 Diabetes
2013 Erectile Dysfunction (Initially Tadalafil, then Alprostadil from early 2018, but too much pain. Now using Invicorp very successfully)

guytalk2018
Posts: 5
Joined: Mon Jan 22, 2018 4:37 pm
Location: Nevada

Re: Deteriorating ED (UK Members?)

Postby guytalk2018 » Tue Feb 13, 2018 11:44 pm

here in USA MUSE is ridiculously expensive. I cant find insurance to cover it at all! It does work ok. But not worth $70 per pop!! Gel works
mid 60s generally healthy, da vinci RP in 2016, psa 0 8-)


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