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8 months on not much happening for my 54 year old

User
Posted 20 April 2017 08:36:33(UTC)
My OH had RP 8 months ago age 53. (I'm 49) One nerve spared. Initial PSA 4 (4.8 after 6 weeks) Gleason 6 T2c. Great results with continence and recovered well. Was prescribed Cialis 20mg after a month and took it til February. Had some bothersome but manageable back pain and general aches with it but also had partial erections in the shower from just a few weeks out. Was delighted with himself! Also flaccid orgasms.

However he started to have pain as he got a little more successful (never much for me to work with as he prefers to "practice" alone because it takes so long....)
The one time we got to the point of trying insertion (more for my pleasure than his I fear) he suffered pain. He has been suffering pain for the last 4 months when he "practises" and has stopped taking the Cialis for last 2 months...and stopped practising as now nothing happens.
His surgeon did a scope to see if there was debris or even a tiny clip left inside but all he found was inflammation in parts of the urethra.
He was prescribed antibiotics but they had no effect.

We had quite a passionate tryst one night when we escaped the kids but I discovered afterwards he felt absolutely nothing in his bits. This is because of not taking the Cialis 20mg and it really bothered him. It also really bothered me, as after a few drinks and no sexual attention in 3 months I got into this big time. Howrver as realisation, sobriety (I'd only had three!!) and ensuing guilt dawned, I gave up trying to orgasm and felt even worse next day when he told me he was upset that without Cialis there was nothing even with me. However he was still hopeful that the investigations would turn something up at that stage.

Onwards and upwards. His PSA is 0.1 and he did have a small reaction when he practises with the Cialis so today he said he's going to start taking it again.....Fly in the ointment is we have only 8 left and the Govt only allow 4 a month for 6 months on the drug payment scheme. So we have been paying €200 a month (DPS is €144 and I use it) and now we will be paying €250 if we keep buying Cialis @ €100 for 8 a month. They will give him Viagra or the likes on the DPS though.

We have had no ED therapy or advice beyond the surgeon prescribing Cialis. Our Irish Cancer services have no page like this. (I really appreciate the incredible help offered here and reading other people's stories!!)

I was advised when I posted elsewhere here about pumps. I'm still not sure if Cialis 5mg every day rather than the 20mg is better....my husband thinks the 20mg is just slow release so they are the same but I'm not getting that impression here. In reality my husband doesn't want to talk about it and wants to get on with it himself so I can't press him to get a pump, can't seduce him and not sure should I go out and just buy him an Ann Summers pump to try out himself...afraid to put him under pressure.

After the guilt (all self induced) mentioned above I've let him off for a bit but he's more interested in playing his guitar these days. He even got a new one so I know my place ha ha!!
It's still early days and I think we can get there but the setbacks and non communication from the medical profession aren't helping. OH never complains and is generally upbeat and as affectionate to me and the kids as ever. However it must be a gnawing thing inside for him....it sure is for me and I'm not the person most affected. (More guilt....!!)

Any advice on specifics of treatment, whether I should get him a pump myself, and what combinations of Meds to take for best results? I guess we will just have to pay the full whack as no amount of business plans will sway the HSE!!!
User
Posted 20 April 2017 16:55:50(UTC)

Originally Posted by: Online Community Member


However he started to have pain as he got a little more successful (never much for me to work with as he prefers to "practice" alone because it takes so long....)

................

We had quite a passionate tryst one night when we escaped the kids but I discovered afterwards he felt absolutely nothing in his bits. This is because of not taking the Cialis 20mg and it really bothered him. It also really bothered me, as after a few drinks and no sexual attention in 3 months I got into this big time. Howrver as realisation, sobriety (I'd only had three!!) and ensuing guilt dawned, I gave up trying to orgasm and felt even worse next day when he told me he was upset that without Cialis there was nothing even with me. 

.......................

Onwards and upwards. His PSA is 0.1 and he did have a small reaction when he practises with the Cialis so today he said he's going to start taking it again.....Fly in the ointment is we have only 8 left and the Govt only allow 4 a month for 6 months on the drug payment scheme. So we have been paying €200 a month (DPS is €144 and I use it) and now we will be paying €250 if we keep buying Cialis @ €100 for 8 a month. They will give him Viagra or the likes on the DPS though.

.......................

I was advised when I posted elsewhere here about pumps. I'm still not sure if Cialis 5mg every day rather than the 20mg is better....my husband thinks the 20mg is just slow release so they are the same but I'm not getting that impression here. In reality my husband doesn't want to talk about it and wants to get on with it himself so I can't press him to get a pump, can't seduce him and not sure should I go out and just buy him an Ann Summers pump to try out himself...afraid to put him under pressure.

 

 

Hi Misty, it must be very hard to get a clear understanding of how it all works when you live in a nation without ED support services. Hopefully some of the following bits & pieces will help:-

1. Cialis would not help him feel anything so if he felt nothing in his bits, it isn't because he didn't take the Cialis. 

2. The pain isn't associated to not taking the Cialis either - some men do find dry orgasms extremely painful although it tends to improve as they get used to it. The other possibility is that some nerve damage has been done so the nerves are feeling pain in an exaggerated way while at other times they are not feeling enough - if this is the case the nerves will still be healing and this might sort itself out over the next few weeks & months - the nerve bundles can still be repairing themselves up to 2 years post op

3. Don't confuse ED with loss of libido - when he says he didn't feel anything, does he mean that his penis and general area were numb or does he mean that he didn't feel sexy or excited? Cialis and other treatments can't do anything for loss of libido, unfortunately. 

4. 20mg Cialis is not slow release :-( The 2 things must not be confused. 2.5mg or 5mg Cialis is a daily dose prescribed in some English authorities to aid nerve repair by drawing blood and therefore oxygen to the pelvic area around the damaged nerve bundles. Some men are lucky enough to discover that taking the daily dose over an extended period actually enables them to have erections on demand - it is a cumulative effect. The 10mg or 20mg Cialis is taken as a single dose when a man is hoping to have intercourse in a few hours' time and has no cumulative properties 

5. If he is only getting a small reaction with Cialis 20mg I would stop wasting your money and ask to try Viagra instead. If Viagra doesn't work, ask whether he can try Levitra on the DPS. Cialis and the other tablets will only work if he has a libido & feels aroused. 

6. If none of the tablets work, he might be able to get Muse pellets on the DPS? Worth asking ... Muse, Vitaros cream and the injections don't need a libido to work although even they don't work for everyone 

7. You know your man best but personally, I wouldn't buy an Ann Summers pump at this point ... 1) they are not as efficient or strong for a man with total ED and b) if his problems are emotional, this could drive him away completely. How do you think he would cope with you introducing a vibrator - if you haven't already done so, is that worth a try first? I used to hold it against J's perineum 'accidentally' and he discovered that it felt nice AND produced some reaction :-/ 

8. It does seem very expensive to buy meds on your DPS system. If you were sure he would take them, you might be better buying Viagra or daily Cialis from an online pharmacy like Lloyds or Dr Fox, both of whom ship to Ireland. Best to try a few Viagra from the DPS before you go and order 120 of them online though, just in case he doesn't get on with them and to help you determine which dosage is needed.  

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


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User
Posted 25 June 2017 08:37:22(UTC)
Dear Lyneyre

I can't believe I didn't see this reply until today!! It's very helpful and i really appreciate the advice which i will work on. Why prescribe Cialis 20mg to somebody straight after surgery? I am baffled. I really do feel we haven't had good advice from the surgeon though he did a good job on the removal to be fair, as 3 psa tests now less than zero.

My hubby does have some libido in spite of all he's been through but when nothing happens down below its demoralizing so since that night we 've been fairly inactive. His testosterone is very low too but he doesn't have all the usual symptoms...Endocrinologist can't get over how hairy he is and the year of passion we had before the surgery!!(Testosterone was through the floor tbis time last year when we were having most fun!!).
However surgeon doesnt want it treated till we are sure he is cancer free as it might activate any cells that got left behind.

He was always very positive going into this and believed totally that he would recover well. Continence is great and results are where we want them so I feel really guilty even being upset about what we have lost. I can't get over the bravery and positivity of the people who have answered my posts.

Anyway 10 months on and about to try your pump, what would you recommend we do medication wise e.g. you have suggested trying viagra or levitra. Are they the same and how should they be taken? Should he keep taking Cialis 20mg or cut it up like Chris suggests? (or buy generic 5mg online) And does one then take Viagra before we plan to have a bit of fun? OH had the inflammation investigated...it seems to be in the urethra....didnt respond to antibiotics but has improved. I think repeated failure is the main problem now....the constant reminder that you aren't what you once were and basically having your nose rubbed in it each time you try. He was always an all or nothing kind of guy 🙄🙄🙄 I just hope we aren't starting all this therapy too late!
User
Posted 25 June 2017 12:06:13(UTC)

I would honestly give the 5mg daily Cialis a go for a few months. Nothing to lose at all. It builds up in your system. And as I said a little ring if you can get one works a treat for me. I think your greatest stumbling block at the moment is anxiety and him being alone practicing. You need to be together. Lots of stimulation. Men love visual stuff. As Lyn says get a small dildo or vibe and talk him round. Whisper in his ear. Try and get those nights alone. You need to get through this as a couple and to be fair there are a hundred ways he could be pleasuring you and making you orgasm. It's a struggle but actually made us better in the bedroom tbh. Wishing you luck x




If life gives you lemons , then make lemonade
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User
Posted 31 October 2017 09:02:05(UTC)

It took me 2 years of trying everything, ultimately what fixed it was the little durex ring and changing my mental state! The healing process and time probably played a part too!

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