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ED Clinic Consultation

User
Posted 13 Aug 2019 at 20:02

I have an ED clinic consultation tomorrow, my partner is coming too.  Can anyone let me know what to expect? Tests/examination or what? I obviously know where the problem lies so will they just say oh yes hormones, chemo is the problem so this will help?

User
Posted 14 Aug 2019 at 01:32
It varies quite a lot according to where you live. In some areas, the 'clinic' is actually a meeting with a salesperson from a pump company who will discuss whether a pump is appropriate and if so, show you how to use it and then organise a prescription for you. In other areas, it is led by a clinical nurse specialist who will talk to you about different treatment options and then help you decide which are worth trying / available. A CNS can sometimes issue prescriptions, or will write to your GP asking him/her to prescribe whatever has been agreed with you.

There are also areas where the clinic is run by a doctor; I don't know how successful that is nationally as it has just changed in our area from a brilliant ED nurse for the city to ED appointments being at the incontinence clinic with the most dismissive specialist imaginable :-(

I guess in your situation, your wishlist might be

- a pump to keep your penis healthy and prevent atrophy while you are on HT

- if you still have a libido, tablets like Viagra or Levitra to help you get and maintain an erection

- if you have no libido but would like to have penetrative sex with your partner, asking whether injections like Caverject might be available to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2019 at 06:49

Thanks for the prompt reply. The letter says a consultant appointment, before hormones and chemo I had no ED problems, I still have a libido (be it diminished) with regards desiring my partner who I love to bits but have lost all interest regards porn, masterbation, I get no erections at all unless I really focus on the job in hand (excuse the pun). I'm hoping the clinic will help as my GP just disregarded my problems out of hand and only referred me to ED clinic after I asked.

User
Posted 14 Aug 2019 at 07:54

S

The clinic at our hospital is led by an associate specialist in urology ( whatever that means). At our first meeting about five years ago he recommended using a pump and having injections, I declined the injections and opted for muse. We then went into the next room and saw the rep from a pump company who sorted the prescription for the pump any Mr X sorted the prescription for the muse.

Muse has not been a brilliant success and a few weeks ago I went back to the ED clinic to talk about injections. Mr X was running late and I was seen by the nurse specialist, she talked about the injection procedure and what to do in the event of an erection lasting too long etc. She showed me  the caverject syringe and how it worked and then said "do you want to give a try". So I dropped my underwear and following her instructions gave myself my first injection. I then went and sat in the waiting room for ten minutes, came back into the room and we both had a look at the result, as she pointed out sitting in a waiting room watching a discussion about Brexit was never going to achieve anything magnificent but there was tumescence so it was effective. She was totally professional and having had probes and all sorts of insertions over the last six years my modesty and embarrassment levels are very low.   Two weeks later I got my prescription through and the first attempt at home was a total success. Thanks Chris

Edited by member 14 Aug 2019 at 07:55  | Reason: Not specified

User
Posted 14 Aug 2019 at 08:56

Thanks Chris for the insight,

OMG the thought of injections in my little fella is not appealing! I'm hoping for tablets and if lucky a pump. If injections are involved I may consider becoming a monk!

Edited by member 14 Aug 2019 at 08:57  | Reason: Not specified

User
Posted 14 Aug 2019 at 11:49

That was exactly me five years ago, now I wonder why I didn't do it sooner.

Thanks Chris

User
Posted 14 Aug 2019 at 13:44

Hi Stalwart9, I am still on HT till October. 2 years of HT , Brachy & RT. I first tried the pump but don’t get in with it . Tried Viagra which worked a treat but it’s for occasions only. So I then tried Ciallis 5mg daily after testing it with the 20mg first. The 5mg works for me and I have started getting the old morning glory again. 

So give the pills a try , you might get lucky - excuse the pun 😆.

I cant wait to come off the HT and get all my libido back along with ditching the pills.

Best of luck and don’t give up.

Phil

User
Posted 14 Aug 2019 at 14:53

Just got back from the consultation. The Consultant was really matter of fact and didn't promise the world but came across really well. He asked me what my concerns were, ( wanted penetrative sex, because long term problem wanted to keep penis healthy for when hormone's stop etc ) he then examined me whilst telling me my penis would get smaller in front of my partner 😠. ( I'm sure I saw a tear in her eye ) He's trying me on Cialis 5mg daily and use an extra one if needed for an event, said if that isn't enough to ring the specialist urology nurse to get a pump fitted which I can use with the Cialis. He mentioned injections as last resort.

One thing though, he said that recovery of testosterone takes 18 months to 2 yrs to get back to normal after hormones!! Is this right? Overall I have come away happy, the NHS have been really supportive through out all of my treatment.   

 

User
Posted 14 Aug 2019 at 16:04
Yes, that is true for many men. Some find that their testosterone never recovers while others find it comes back quicker, but 18 months to 2 years would be average
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2019 at 16:16

I wonder if it’s sensible to try to get the Testosterone back quickly after HT finishes by diet and exercise ? Not advocating testosterone pills but natural ways to get it back ...

I know I will be desperate to get it back after my HT finishes but my hospital doesn’t measure mine , only the PSA...

Phil

User
Posted 14 Aug 2019 at 16:33

I did challenge him on the length of time because I was sure I saw on here that some guys started getting their mojo back a lot sooner. I know I'm getting life saving treatment  3 years hormones maybe and then 2 yrs recovery seems like a lifetime! I'm having radiotherapy after chemo so just as testosterone comes back my delayed radiotherapy ED problems will probably kibosh any recovery 😞. Best start getting used to the Cialis 😏

 

User
Posted 14 Aug 2019 at 16:45

I’d rather not think on the delayed RT ED 😳.

I am of the opinion it won’t happen to me 😆😆

How funny that so many people say if you’re gonna get cancer get this one. Oh yeah , well let them try it .......Someone said it to my missus - they won’t say that again 😳

 
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