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Too late?

User
Posted 04 Nov 2018 at 22:38

I have been on HT for two years and finished 37 fractions of radiotherapy at the end of February 2017. Having seen my oncologist in September he felt it was time to stop the Zoladex. Looking back during all this time (and having been through the hands of two urologists and four oncologists) I realise that I should have asked for more support with erectile dysfunction. I find myself in the position of recently attending an ED clinic (I was eventually referred by a psychosexual therapist) where I was told that I might be "a little late". Having said that I tried a one off injection of Caverject in the clinic with some effect and was then prescribed Invicorp 2. Since then I have been injecting this twice weekly with varying effects but never better than minimal tumescence - occasionally enough to masturbate. My follow up is in a fortnight. So, in effect, I am flying solo with this as my partner has no interest in sexual activity of any kind (this predates my diagnosis). I persevere as I feel part of who I am is missing and I also miss the feel of an orgasm. 

In case you are wondering I received no help, advice or signposting from the staff at my treatment centre in terms of ED (or continence - but that's another story). During the past two years I feel I have been under a tremendous amount of stress - I'm not making excuses for not seeking advice but I feel some guidance would have been appropriate. The psychosexual therapist and ED clinic appointments were eventually sought by me, so i feel i have done my best given the the circumstances. If it was not for the fact I could access professional psychological support via my work i don't think I would have even got this far.

So my questions are: am I too late and is there anyone else out there who has been through this without partner support or as a single man? 

User
Posted 06 Nov 2018 at 20:34
You mean you are no longer a teenage virgin or you are no longer desperate????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Nov 2018 at 04:10

Originally Posted by: Online Community Member
try humping into a folded pillow if your penis is very shrunken and hard to get hold of

Lyn, you have such a way with words, spat my coffee out laughing at that! 

!

 

 

 

 

 

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User
Posted 05 Nov 2018 at 13:52
From my experience not too late. Besides RT 47 months of HT ended Aug 2008. In 2016 decided to try 20mg Cialis. Results good most times but less so of late probably down to age and other health issues.

Keep trying

Ray

User
Posted 05 Nov 2018 at 19:29

Thank you

User
Posted 05 Nov 2018 at 21:29
Hi Fabio,

was the Caverject (given by the ED practitioner) more effective than the Invicorp that you have been self-injecting?

I don't think you should give up hope as there are combinations that you haven't tried yet. But while sorting out what might or might not work in terms of getting an erection, I think you need to learn how to give yourself an orgasm with a non-erect penis. It isn't easy to begin with but practice makes perfect! If not already done so:

- buy a good lube like Durex feel or KY jelly

- plaster the lube on your penis and hand

- concentrate your fingers on the frenulum underneath your penis (either where the foreskin is attached or if you are circumcised, the small lump of skin where the foreskin used to be attached)

- try humping into a folded pillow if your penis is very shrunken and hard to get hold of

You are quite right; it is scandalous that men going onto HT are not advised of how to maintain penile health and are not automatically offered ED appointments. There again, there are large areas of the country where men aren't offered that support post surgery either, and only find out about it by joining this forum. There are also a number of CCGs that no longer offer an ED or andrology service, who refuse to fund vacuum pumps or Cialis one-a-day or limit men to 4 erections a month. The whole system is a postcode lottery.

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

User
Posted 06 Nov 2018 at 20:07

Hi, Lyn, thanks for the constructive suggestions! I'm doing all of the above already and know where my sensitive spots are and this helps. The Durex lube is the best. I get semi-erect and do attain orgasm but I find it's very strongly related to my state of mind - but I do my best! The lack of spontaneity is a killer and, I must admit, I don't get there every time. Also, my libido is still low (last Zoladex was in July) - I find I am only able to achieve semi-erections and successfully orgasm about once a fortnight (from four attempts). Pillow humping? Not since I was a desperate teenage virgin!

In my case the treatment centre does run ED clinics but it has never been offered to me. I don't think its always a post code lottery I think that sometimes (possibly in my case) departments and specialities just don't communicate well with each other let alone their patients. Go figure.

Between the injections I would say the effect is the same.

User
Posted 06 Nov 2018 at 20:34
You mean you are no longer a teenage virgin or you are no longer desperate????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2018 at 20:37
If the caverject didn't do massively better than the Invicorp, they may try a higher dose at the next appointment. my dad has to use 100mg in the single chamber version because the usual 20mg dual chamber was simply not enough.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2018 at 22:42

I'll keep you posted on my next appointment. I have no idea whats next but I guess that will depend on what feedback I can give to the doctor. I will have to ask what the plan is. Just to clarify, I am injecting with Invicorp 2 as the Caverject seems to have been rejected (in the clinic) as ineffective. I know they both work differently and I've been told that Invicorp does not require testosterone to work. 

Edited by member 06 Nov 2018 at 22:43  | Reason: Not specified

User
Posted 07 Nov 2018 at 04:10

Originally Posted by: Online Community Member
try humping into a folded pillow if your penis is very shrunken and hard to get hold of

Lyn, you have such a way with words, spat my coffee out laughing at that! 

!

 

 

 

 

 

User
Posted 14 Nov 2018 at 22:54

Ok I've had my appointment. The current plan is carry on with the Invicorp injections, use a 'restriction ring' (aka a cock ring) and a new prescription for Tadalafil. Plus a referral to the 'Vacuum Nurse'. Well, I'm certainly getting my moneys worth this time!

To be honest, It's very stressful for me to get on with this on my own. On the other hand, my urologist seems to be very kind and knowledgable. My issues are taken seriously and concerns listened to.

It's been an eye opener to peruse the Love Honey website (to order a ring) - there's a first time for everything! Nice to see it all taken so seriously and with such a mature perspective.

User
Posted 15 Nov 2018 at 06:03
Fabio, the Durex ring is the best for maintaing and improving semis. I tried a selection of the LH ones and while they were "interesting" they were ineffective compared to the Durex ring.

The LH rings are not suitable as constriction rings for pumps either as those are really aggressive.

You can get Durex rings in your local coop they are obviously a big seller!

User
Posted 15 Nov 2018 at 06:16
Francij1

Durex do several rings.Some vibrate etc.. Do you mean the durex pleasure ring, (5.99 on amazon)?

Cheers Bill

User
Posted 15 Nov 2018 at 18:44

Hi, guys. Thanks for the replies. I am an amateur at this so bear with me. In terms of how long you leave things after HT cessation - my consultant already thinks I'm a bit late. My understanding is that to promote erections is part of penile rehabilitation - not just for penetrative (or other) sex. Durex rings? Well, I'll let you know on that one after I've tried the one that will arrive soon. Keep the replies coming (excuse the pun!).

User
Posted 23 Nov 2018 at 10:34

Ok. Last Sunday the new method had a degree of success! Successful erection and orgasm. Can't say fairer than that but it is a bit of a faff on your own. Shortly after, I had a muzzy head, headache, pelvic and lower back ache which I think might be related to the Tadalafil. This responded to a couple of days of paracetamol as required. So I've laid off until this morning - repeat of the procedure was fairly successful: reasonable erection but no orgasm, plus i struggled to get all of my anatomy inside the restrictor ring due to a cold bedroom! Nevertheless, it's better than Invicorp alone. Using plenty of lube definitely helps too. I'll have to wait and see if they were side effects of Tadalafil or a bout of man flu.

User
Posted 23 Nov 2018 at 18:25
Muzzy head, muscle "pain" and blurry eyes are what I get from Viagra and ciallis.

I find orgasms are more elusive too but my partner doesn't mind that aspect!

User
Posted 24 Nov 2018 at 00:06

I think its great you've got a partner that (presumably) you have a physical relationship with. Sadly, I don't - this caused me to reflect the other day that if these are side effects and if they carry on I might have to refuse to have sex with myself because I've got a headache! 

User
Posted 24 Nov 2018 at 11:25
Well with that sense of humour if you want a partner I am pretty sure you would not have trouble finding one!!
User
Posted 26 Nov 2018 at 16:41

Originally Posted by: Online Community Member
Well with that sense of humour if you want a partner I am pretty sure you would not have trouble finding one!!

 

There's a stand up (forgive the pun) routine in there somewhere! I think i had man flu last week so once more into the breech tonight. Sorry to put that image in your head.

User
Posted 28 Nov 2018 at 11:32

Tadalafil, Ring, Invicorp, Lube and Sainsburys hot water bottle (cold bedroom) did the trick! May have been a better erection too - in the absence of any objective measurement it certainly seemed that way. Similarly for the orgasm - seemed like a good one to me!

So far so good but its a struggle to incorporate this into my lifestyle. Don't get me wrong, its incredibly important to me and forms part of who I am, but the routine is hard to get into. Nevertheless, I will keep trying and have no plans to throw the towel in at this stage of my life. No news from the 'Vacuum' nurse yet.

User
Posted 28 Nov 2018 at 12:16
Great news!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2019 at 23:14

I still haven't heard from the 'vacuum' nurse despite leaving messages with the relevant secretary. They are, apparently, two months behind with with their letters - you never know I might still be in with a chance for a Christmas card from my consultant! I'll try again soon but it is wearing me down.

User
Posted 01 Feb 2019 at 06:15
Just get a cheap one off Lovehoney sent through the post discretely. Not the real deal but guaranteed to work and keep him healthy and start things off so to speak

If life gives you lemons , then make lemonade

User
Posted 01 Feb 2019 at 07:43
I have copied links below from amazon of what I use. I added the insert because it is softer and more comfortable. You may need to trim it. The pump comes with a squeezy ball type pump which soon becames ineficient so I got the scissor grip one. The pump also comes with a ring which is rubbish, so you will need to get others if you want.

I dont know how to make the links work properly so you will need to copy them to your browser.

https://www.amazon.co.uk/Pipedream-Pump-Worx-Potent-Black/dp/B005EILA1G/ref=gp_aw_ybh_a_1?_encoding=UTF8&psc=1&refRID=4X5D34XDQ8142FY27WMT

https://www.amazon.co.uk/You2Toys-Transparent-Replacement-Cuff-Pumps/dp/B004D755GU/ref=pd_aw_fbt_img_2/257-6491659-0966014?_encoding=UTF8&pd_rd_i=B004D755GU&pd_rd_r=0c552ce1-25f3-11e9-bc3f-c119fe0d879a&pd_rd_w=cBAC7&pd_rd_wg=HqZDk&pf_rd_p=829773a1-0532-4117-a22f-5a653a869422&pf_rd_r=EYNNR36078DTPBS0Q8WA&psc=1&refRID=EYNNR36078DTPBS0Q8WA

https://www.amazon.co.uk/gp/aw/d/B001LYZ5RC/ref=ppx_yo_mob_b_post_ship_o0_img?ie=UTF8&psc=1

Good luck

Cheers

Bill

User
Posted 27 Mar 2019 at 05:08

Well, I eventually got my vacuum device - it took a lot of chasing up and I am now in the position of DIY! There's been no ED clinic appointment just a letter asking me to give them a ring if I can't manage the pump on my own!!!!!

FFS!!! Anyway, I've had a go and it seems to be working. So, I'm following the instructions carefully - wouldn't want to break anything after all this effort!!!

After my latest oncology appointment - PSA nice and low laughing and testosterone still very lowundecided,I'm  not  sure where I go from here. One thing I become more certain of every day is how demoralising and humiliating I find this whole thing.

Wish me luck with my auto-blow jobs!!!!

Thanks to everyone who has posted here so far.

 
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