Journey With UK NHS So Far- Others may contribute

The final frontier. Deciding when, if and how.
jasainuk
Posts: 19
Joined: Thu Sep 22, 2022 12:44 pm

Journey With UK NHS So Far- Others may contribute

Postby jasainuk » Sat Jan 28, 2023 5:17 pm

Hi Gents.

I thought I would post on my journey so far with applying to have the implant done via the NHS in the UK and the process I have been going through.

When I first tried to find info and asked on FT about other guys that had the implant done via the NHS I had to wade through a lot of posts to get to the meat of what I was trying to find out. Often enough, the guys have many posts, and it's hard to find one related to anything about the NHS process easily.

A couple of guys PM'd me, and I got some great info that has helped me on my journey so far that have had the implant via the NHS.

I'm going to post my journey so far and update this thread when possible, but I welcome anyone else to share their experience as it all could be valuable for others going down the NHS route.

My Journey

Not the whole ED journey but what led me to the NHS and onwards to now.

About 4 years ago - I first went to a Urologist in Bangkok Thailand trying to find a solution to the ED (started 20 + years previous).
And he suggested a doppler test, and low and behold, my problem was found - venous leakage.

By this time all pills etc, were having minimal effect. Well before, actually.

I spent 1000's on various treatments over in Thailand.

After coming back from Thailand I went to my doctor with my results, and I was referred by my GP to the Urologist in North East Lincs. About a month later I had the referral date and got to show the Urologist doctor the doppler test results and asked if I could be operated on to fix the venous leakage, and I was told the NHS will not do the operation, and it is very unlikely to be successful (I was pretty gutted about this).

The Urologist referred me to a specialist nurse in ED to look at injections and pumps.

About a month or so later and not too long of a wait I went to see the ED nurse and was offered a vacuum pump and Caverject injections. The injections gave me a 70% erection for 5 minutes after waiting 5 minutes, and the pump was great, but the whole process of only having 30 minutes and the lack of sensation made the pump, not a great option.

Meanwhile, I spoke to a friend about implants, and he had a friend with one who was happy, but I hadn't given it a thought. I looked more into it and it seemed like a good option, although I like the idea of hoping that a miracle was going to happen, and suddenly my dick would work again (reality check came along - 25 years and only getting worse - a miracle? when?).

My research led me here to franktalk and what a blessing ---seriously helpful.

About 9 months ago --I knew the implant in my heart is my only real way. So I asked my nurse to refer to the urologist or consultants that do the implants if possible and I was told to go back through the triage and a referral from my GP. This time and about a month or so later I went to go to see another urologist in a different hospital.

This doctor was okay but he did try to convince me to use the pump in a another way which was daft advice as he knows nothing about using these pumps, then agreed to refer me to a urologist/andrology in Leeds or Sheffield that would see if I was right for the implant.

I posted here asking about anyone in the UK having a NHS implant -- viewtopic.php?f=6&t=20525

5 Weeks Ago -- I went to Sheffield hospital and had to see the special ED nurse. She was nice and helpful despite trying to convince me that I should now try 60 MG of Caverject injections. She sees patients before the next state of seeing the doc that does the operation to make sure it is right so far for the patient She showed me the implants etc., and told me the horror stories.
She also said there was a long waiting list to see the implant doctor even for an appointment and I asked to be referred to London (Dr Ralph), but she convinced me it would be done there and to wait about a year or it could be quicker if someone cancels their operation.

I got some sound advice on FT months ago about getting referred to Dr Ralph (UCLH London Hospitals) previously which got me thinking again.I phoned this Sheffield nurse back up and asked if she would refer me but she could not but agreed I should try Dr Ralph as the waiting times was very long there at Sheffield now. She said I had to go back to my GP.

About 2 weeks ago - I spoke with the GP and he agreed to refer me and said it is within out right to be referred anywhere we wish to on the NHS.

My referral is in place and I am awaiting contact from Urology/Andrology at UCLH or contact from my own GP surgery. The referral is still in at Sheffield also, but if I get on the list at UCLH then I will go with that and cancel the Sheffield list.

I'm happy to wait on the NHS but anything more than a year then I'm going to have to think about getting it done outside and paying for it.
I kind of think it might get done in this time frame, but at the moment there is only negative news about the NHS being understaffed, overworked, not paid enough, and the rest of the issues.

I'm strong with all this, and I am not bashing the NHS at all, and Im even grateful they are doing something at the moment. It's my dick that is weak and not my brain!

I will update this post with any progress and news.

I've only written this to try and help others going down the NHS route, and hopefully, others can contribute by us sharing the
experiences on a specific NHS thread.

Let's see how the story goes from here :) :)

Pau1pau1
Posts: 144
Joined: Sun Dec 20, 2020 10:05 am

Re: Journey With UK NHS So Far- Others may contribute

Postby Pau1pau1 » Sun Jan 29, 2023 4:36 am

Well done , once you have seen Ralph , it only took me a few months to get the op.
He will give you a choice of which implant you want.
I was looked after very well and follow up is execelent .
They can do phone or video calls if you don't want to travel back down to london , suited me as I had no problems , only issue I had was urinal infection from the catheter, prescribed antibiotic and cleared up no problem .
Good luck and I hope you don't have to wait to long

jasainuk
Posts: 19
Joined: Thu Sep 22, 2022 12:44 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasainuk » Sun Jan 29, 2023 9:26 am

Pau1pau1 wrote:Well done , once you have seen Ralph , it only took me a few months to get the op.
He will give you a choice of which implant you want.
I was looked after very well and follow up is execelent .
They can do phone or video calls if you don't want to travel back down to london , suited me as I had no problems , only issue I had was urinal infection from the catheter, prescribed antibiotic and cleared up no problem .
Good luck and I hope you don't have to wait to long


Thank you, much appreciated.

Can I ask which implant did you choose?

Pau1pau1
Posts: 144
Joined: Sun Dec 20, 2020 10:05 am

Re: Journey With UK NHS So Far- Others may contribute

Postby Pau1pau1 » Sun Jan 29, 2023 11:01 am

Hi I got titan because I wanted as much girth as possible, Was really stiff for few months but now has softened up nicely . Looks very normal when soft just bigger than before .
Wished I had done it 2 years sooner instead of muse injections etc.

jasainuk
Posts: 19
Joined: Thu Sep 22, 2022 12:44 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasainuk » Sun Jan 29, 2023 2:13 pm

Pau1pau1 wrote:Hi I got titan because I wanted as much girth as possible, Was really stiff for few months but now has softened up nicely . Looks very normal when soft just bigger than before .
Wished I had done it 2 years sooner instead of muse injections etc.


Excellent. Read similar about the Titan.

jasejuk
Posts: 98
Joined: Thu Oct 20, 2022 1:45 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasejuk » Sat Mar 25, 2023 5:56 pm

Hi Gents.

I am going to add a few guys that have had implants done on the NHS reported in this forum (I hope they don't mind!).

It is quite hard to wade through all the posts, but at least a link to each person's posts can lead to some information.

UkSteve
search.php?author_id=78897&sr=posts

Rebz89
search.php?author_id=86053&sr=posts

Pau1pau1
search.php?author_id=82044&sr=posts

TriHardDave (had his in 2023)
search.php?author_id=84443&sr=posts

I will add to this page when I can and have other useful info.

Thanks
Age 50. ED since 25 yrs old. Used pills etc. Last 10 years, everything, including injections --did not work. Doppler test diagnosed VL. Implanted Coloplast Titan 22cm UK NHS ( --13/02/2024 Coloplast with Dr Win Gan Lee -- UCLH London UK)

jasejuk
Posts: 98
Joined: Thu Oct 20, 2022 1:45 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasejuk » Sat Mar 25, 2023 6:09 pm

A quick update to keep my NHS process updated.

I had an appointment at UCHL in London arranged for 14/03/2023. I emailed and requested a telephone or video consultation because I have been to these initial urology/andrology appts before, and it is just an initial phase before a referral to the urologist.

I was trying to avoid the travel and overnight costs to London for the initial appt. If it was with the urologist I would have been up there like a shot.

Anyway. They sent a telephone appointment for 18/04/2023.

Will update with new happenings.
Age 50. ED since 25 yrs old. Used pills etc. Last 10 years, everything, including injections --did not work. Doppler test diagnosed VL. Implanted Coloplast Titan 22cm UK NHS ( --13/02/2024 Coloplast with Dr Win Gan Lee -- UCLH London UK)

Jonarr
Posts: 48
Joined: Sat Aug 14, 2021 2:06 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby Jonarr » Mon Mar 27, 2023 6:41 pm

Hi I had my implant fitted by the NHS in September 2021. It was during Covid but I have to say the hospital stay was quite traumatic and follow up care minimal. I ended up paying privately the NHS consult for extra sessions just so I could get the time for proper aftercare. I was also discharged 100 percent inflated and left for so long I ended with scar tissue around the reservoir and to this day cannot fully deflate. I was not offered a choice of model but given a Zephyr which is cheapest product on the market. My consultant was not a high volume implanter and I regret not seeking out Dr Ralph who I hear good things about. If I need a revision I will somehow pay the money to go private in future
Implant 10 August 2021
Age 56
North Yorkshire UK
NHS patient
Zephyr implant

jasejuk
Posts: 98
Joined: Thu Oct 20, 2022 1:45 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasejuk » Fri Jun 23, 2023 12:34 pm

Jonarr wrote:Hi I had my implant fitted by the NHS in September 2021. It was during Covid but I have to say the hospital stay was quite traumatic and follow up care minimal. I ended up paying privately the NHS consult for extra sessions just so I could get the time for proper aftercare. I was also discharged 100 percent inflated and left for so long I ended with scar tissue around the reservoir and to this day cannot fully deflate. I was not offered a choice of model but given a Zephyr which is cheapest product on the market. My consultant was not a high volume implanter and I regret not seeking out Dr Ralph who I hear good things about. If I need a revision I will somehow pay the money to go private in future



Oops. Sorry, I missed your post.

Sounds like you had a rough time, but are you all functioning well now?
Age 50. ED since 25 yrs old. Used pills etc. Last 10 years, everything, including injections --did not work. Doppler test diagnosed VL. Implanted Coloplast Titan 22cm UK NHS ( --13/02/2024 Coloplast with Dr Win Gan Lee -- UCLH London UK)

jasejuk
Posts: 98
Joined: Thu Oct 20, 2022 1:45 pm

Re: Journey With UK NHS So Far- Others may contribute

Postby jasejuk » Fri Jun 23, 2023 12:39 pm

Update after 18th April Appointment (telephone)

I had a telephone appointment with the Consultant Urological Surgeon and Andrologist (Dr W G Lee), whos part of Dr Ralph's team. The appt went well, and he stated he would recommend the operation to his team and report back.

Before he went to the team I had to have bloods sent to show I don't have diabetes and confirmation that my waist size was below 100cm and my BMI, below 30.

He stated if, on the day of the operation any of these fail (glucose, waist above 100cm, or BMI above 30, the operation would be automatically canceled.

My tests were all positive.......wasn't that far off a 100 cm though.

I heard nothing back from UCLH for over 2 months and emailed them - June 17th.

Today I have been given another appointment (02/11/2023) to visit UCLH Westmoreland Street to see the clinical nurse. This appointment consists again of assessing if I am right for an implant (this is my third one of these, but one was with another hospital).

In the message for the 02/11/2023 appt it states:

If surgery is recommended for you during your appointment, you may be asked to attend the triage clinic where you will be assessed to see if you are fit and well for surgery. Please allow extra time at the end of your appointment in case this is needed.

I'm not sure what the triage thing is apart from it is to prioritise serious patients or something like that.

It seems a peculiar process as the last surgeon even recommended a coloplast titan implant, and now I am going to see a nurse again. I already have 2 ED clinical nurses at two other UK hospitals, so I guess a hat trick of ED nurses is an achievement.

I shall update this in the next episode. Probably November.
Age 50. ED since 25 yrs old. Used pills etc. Last 10 years, everything, including injections --did not work. Doppler test diagnosed VL. Implanted Coloplast Titan 22cm UK NHS ( --13/02/2024 Coloplast with Dr Win Gan Lee -- UCLH London UK)


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