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One wife's story of ED

User
Posted 12 Sep 2018 at 00:39

Originally Posted by: Online Community Member
Wow Lyn and to think my poor OH started on 20mg every 4 days. He had very bad side effects. I really do feel we have had bad advice. Do you think it would be good for us to go to 5mg daily now and Viagra for an event? Seeing urologist next week so hopefully he will have tried out the pump then too! I will ask for prescription change based on your recommendation.

 

Misty, I missed this - did you get it resolved? 

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

User
Posted 12 Sep 2018 at 00:41

Originally Posted by: Online Community Member

Lyn an any others,

Thank you for your valuable information in this email thread :-)

Just a question, when can/should one start using the pump?

Paulo

 

Paulo, how are you getting on with the pump? 

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

User
Posted 12 Sep 2018 at 00:50

Originally Posted by: Online Community Member

Thank you to everyone on this post, I'm nearly 10 months post op and I've just read this with my wife. 

I'm on daily Cialis and have been using a pump for the last 4 months, although the pump is only good for keeping the penile tissue healthy.  Going to try larger doses of Cialis and if that doesn't work then we're onto Muse, (Alprostadil pellets).

Your post has really given us hope.

 

If you are taking daily dose Cialis, try 2 or 3 extra tablets (but only for that one day) next time you think you are likely to be 'in the mood' later that day. If large dose Cialis isn't working, try Levitra or Viagra before you move on to Muse, Vitaros cream or one of the injections. John found a combination of Cialis 5mg and Levitra or Cialis 5mg and Viagra successful. 

The trick is understanding how and when to take it, although tablets don't work for everyone. Viagra must be taken on an empty stomach and in our house, it works a few hours later. Levitra can be taken without an empty stomach and works slightly quicker but neither are immediate. 

Is there any particular reason why you see the pump as only for penile rehab? Which pump do you have? 

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

User
Posted 12 Sep 2018 at 19:46

I have a SOMACorrect Xtra pump recommended by the ED nurse and was lucky enough to get it on prescription from my GP.  I was originally very keen to try the pump, but after following all the instructions, i.e. 7 to 10 days of daily use to get familiar and used to the various combinations of constriction rings, when it actually came to trying it out for real it proved to be a real passion killer in the bedroom.  Tried 3 or 4 times but it just resulted in frustration for both of us.  So, it's now purely used as a medical aid to help with recovery.

Will see how the tablets go and try the combinations you've suggested, thanks Lyn.

User
Posted 12 Sep 2018 at 20:08

I’m using mine to suck up spiders and bugs and safely deposit them outside. I think that’s all it’s useful for. I have a Soma Touch II which is electric so it’s quick to trap the creepy buggers.

Fresh

Edited by member 12 Sep 2018 at 20:09  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 13 Sep 2018 at 11:49

More or less one month after surgery I started using the pump. I must say it has more rehabilitation purposes than anything else. Either I did not get a proper one or I can't use it at its best or last it is not the ideal toy for me (us).

Well, it really does its purpose to make me get it harder but I can't keep it hard after I take it out. It was good at first as I was experiencing the improvements - Now I am keeping using it but needed to stop for a few weeks in August because I had a bacteria infection in my hand joints and I culdn't really make my hands helping using the pump.

I am noticing good improvements though on the erection from cialis (5 mg daily dose) plus 20 mgs once a week. I don't have any side effects, no headaches and it works well after I take the bigger dose. I am trusting this to heal me here along with the nerve healing by its own. Getting happier with this part too.

Now I am just hoping PSA stays low. 

 

User
Posted 13 Sep 2018 at 14:42
Paulo I mostly used my pump for rehab and still do although I am now functioning ok with cialis 3 1/2 yrs on. It sounds like your ring size isn’t right and you need a tighter one. Worth researching. Yes it’s a passion killer , but with the right ring on it can be fun and you can use it for up to 30 mins at a time if you both like

If life gives you lemons , then make lemonade

User
Posted 13 Sep 2018 at 15:02

Chris, thanks,

I will follow your advise and search for a tighter ring. We don't have a problem with the pump :-) so I will continue giving it a try.

 

User
Posted 13 Sep 2018 at 16:38
I could only crack pump "erections" with 2 rings 😂 Also make sure you have a porn star trim, the hairs ruin the seal and make it tricky to get the rings off!

User
Posted 13 Sep 2018 at 21:35
Tips for eff3ctive pump use:

- trim the public hair close to the skin

- use lube on the inside of the tube and where the tube will meet your pubic area

- go a size smaller on the rings than you believed possible

- try different combinations of rings - we ended up with rings from a different manufacturer which was fiddly but more effective

When the pump is successful for engorgement but doesn’t stay erect when the rings are used, it is down to technique - a little hesitation or a shaky hand can break the seal and the vacuum is lost.

There are some men who cannot get engorged with a pump; this is usually down to atrophy which is irreversible.

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

User
Posted 13 Sep 2018 at 21:36
Paulo, what make and model of pump are you using?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2018 at 15:53

Hi Lyn and all,

Sorry about late reply. I need to change my alert signs...

I don't know what type of pump I use. It is a manual vacum pump. Not a very expensive one I am afraid. We don't get any money for pumps here and I didn't buy the most expensive "toy" because I was not sure if it would work.

Well, the pump is doing its job I guess. It seems I wasn't doing the right thing with the ring. I was using the pump and just removing it :-) I bought new rings as the older ones didn't do the job well. I am trying. I need though some more time.

The thing is anyway when I am getting enough stimulation the penis gets hard and I am happy. Of course with the pump, I remove, it gets lost and I need the stimulation. I am trying to use the rings now. Keep you posted.

Thank you for your support,

Paulo

 

User
Posted 21 Dec 2018 at 01:06

My husband is distraught over his prostate cancer.  No sexual feelings at all.  

He was diagnosed with Advanced Prostate Cancer just over 2 years ago, PSA 478, inoperable.  Has had chemo and RT and HT.  It has been awful to say the least.  He has tried viagra - really bad headaches and blood pressure, bloodshot eyes.   Cialis - severe leg pains and has now been given a pump which to cut a long story short, he is distraught with.  We have no sex life at all.  He is 64, I am 57.  Sex isn't the thing for me but I can't do without love and affection which is so upsetting. 

Each time the subject is mentioned he breaks down.  There is no support in this area for discussion, councelling or of other experiences.  

 

User
Posted 21 Dec 2018 at 16:37
Bee,

You and your husband have to adjust to a new "normal" in which there is plenty of room for love and affection, but sex is over. I assume he is still on HT. Viagra can't compete with that! I'm guessing that he is angry with the world and that has squeezed out his loving impulses. He needs to adjust and think of you rather than himself. HT often brings out the softer side in men, it has in me, but men have to make room for it. Easier said than done, but do you have any friends who could help?

AC

User
Posted 21 Dec 2018 at 20:58

I have just read this thread from start to finish and as a newbie to to this club found it both informative and amusing in some parts.

The one thing that stands out is that nearly all of the posts are from men or the wives of those that have had RP and not much from those that have gone down the HT RT road as I am. Is it that ther is less chance of having ED after RT?? I know that it is a side effect as I read it on the main site.

Although I never had any symptoms of PCa before I was diagnosed I did occasionally suffer from problems getting an erection and I now wonder if that may have been an early indication of what was to come.

I am not overly worried about ED as after nearly 40 years marriage we have had a good sex life and we are both happy to just have the closeness of each other at night now and I am happy just to give my wife pleasure by caressing her body which I believe is enough for her (we very rarely talk about sex)

I would be interested to hear some feed back from anyone that has had HT/RT.

Edited by member 21 Dec 2018 at 21:11  | Reason: Not specified

User
Posted 21 Dec 2018 at 21:34
A lovely post. !! As long as love and communication are key , where can you go wrong ?? Congrats foremost on 40 yrs and enjoy each cuddle - they mean way more !!

If life gives you lemons , then make lemonade

User
Posted 22 Dec 2018 at 01:09
There is no easy way of checking as this forum lacks a 'Poll' facility but I believe the majority of men have a Prostatectomy rather than RT as older guys like me had. This might go some way to explain why there is more comment about ED by men /partners who had surgery. Also, ED is more likely to be experienced soon after surgery whereas it can be delayed for quite some months or even a year or more with RT.
Barry
User
Posted 24 Dec 2018 at 00:09
Bobk, I think I made the point in one of the earliest posts that there is a lack of understanding or emphasis from medical professionals regarding the effect of ED and loss of libido on men with RT / HT, and the over-focus on it from men having (or considering) RP can be very hurtful or frustrating for this group.

Very few men have RT alone. While HT doesn't necessarily cause ED it almost always results in a total loss of libido which has the same effect on a relationship but perhaps without so much angst from the man (but a lot more hurt and sadness from the partner as demonstrated by Bee's post). I suspect that the reason posts on here are mostly from men that have had surgery is that many of the men on HT aren't stressing about it so much because either they a) have no libido so can't remember how they used to feel or b) are too ill for sexual intercourse.

Men who have ED as a result of the RT tend to develop this some years later, by which time it may be too late for the penile rehab approach. The size / girth / ability has often already been decimated by the HT, Cialis & Viagra may work but can't put right the damage done and some CCGs will not approve a pump or caverject for men that haven't had surgery.

IMO, it is an absolute scandal that 1) not all CCGs provide an ED / andrology clinic 2) in some areas, men have to ask about a referral when it should be offered automatically to all men diagnosed with PCa and 3) in too many areas, ED services are only available to men that have had RP and medics don't even think to discuss penile health and erectile function with men who are embarking on HT

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

User
Posted 18 Feb 2019 at 15:22

Dear all

I read this thread for the first time today - it's brilliant and very useful.  I really admire the frank talking and kindnesses in the posts and replies. @Lyn: I know you have been thanked many times already - but thanks, and thanks and ever thanks.

This post is to ask for suggestions and advice re my / our situation.  It's also partly a response to BobK's nice post as we seem to be in a similarish situation.  Here goes ... (deep breath)

It's almost 40 years since our first date and sex has been, up and down [so to speak] over the years.  Inexperienced to begin with and with all the normal worries and fumblings.  Once we worked out how "what went where" we had an active and happy sex life in our youth.   Parenthood was probably the first big change and then various things in life had effects. But generally we have been lucky in having had a fair amount of sex without any insurmountable issues.   But we have never stopped until now.

The diagnosis / treatment btw is Stage 4 PCa (T4N0M0, Gleason 9, PSA 141) being treated by RT and HT (so no RP).  HT started last June and is ongoing, RT finished in Nov last year, PSA now <0.5.

So, the awareness of the cancer hits last June and at that point sex is off the menu by mutual consent.  At the same time HT begins, and the HT - I think it's the HT - has removed the "Phwoar" factor from my brain.  The level of advice and support at hospital has been pretty low regarding keeping sex going.  This issue has been mentioned by us at consultations / Nurse Specialist meetings but I'm struggling to recall any response other than "use it or lose it".  Certainly I'm not aware of what changes the different treatments might and might not be making to my willy / balls / etc. And generally I feel that I might be missing a trick.

We're lucky in that it still works.  Libido might not be there but I can get an erection: very occasional nocturnal ones, otherwise a lot of hand work before.  We started to get back to it in autumn and are managing once or twice a month at the moment and it's sort of OK (post-diagnosis we might have had 5 or 6 occasions in all).  Its not particularly comfortable on the willy side of things (it feels smaller, less strong, and sore after a bit, if there is an orgasm it is dry and achy).  But we get across the line, which reduces my guilt a bit and I hope is nice for my partner.  We cuddle, we do foot massages on each other etc. etc. but sex aint something we want to give up just yet.

I think I have heard that penis atrophy is a potential issue (so perhaps "use it or lose it" is spot on): if the willy doesn't get regular (how regular is "regular") erections then the willy gets smaller / less strong ????  And we probably have many other similar technical questions about PCa and sex.

So, it feels like time to take things in hand (funny how any metaphor on this topic feels like I'm in a Carry-On movie) and get doing something about it before it may be too late.  So, I'm thinking some level of external support from someone with knowledge of PCa and its different treatments - and where might be the best place to get this support.    So any suggestions for this or any other suggestions and comments are gratefully received.

[Our support group had a sex speaker last month but this was a missed opportunity for us - perhaps because they didn't to know anything about PCa.  This person was a psycho-sexual counsellor, partly at support group at a nearby hospital and partly at another voluntary sector organisation - so we were a bit disappointed and a bit put-off ("how was if for you?" ..."mmm, felt like my first boyfriend - lots of footling about but getting nowhere").   But in any case that might not be the right route for us.]

 

User
Posted 18 Mar 2019 at 16:56
I think the point I'm getting here is it's important to talk. I separated from my wife of 20 years about 15 months ago although we remain on great terms and she's being very supportive as my "best friend" I recently started a new relationship with a friend I've known for many years (in the purely platonic sense) which has developed into something amazing and which I hope(d) has potential for the future and may well do.

She's been great through my recent diagnosis and we've talked a bit about the potential follow on issues after treatment in particular as the medical team are tending towards a RP. We do skirt around the point a bit sometimes though and she's very much lets cure then deal with the future later. I kind of agree with this but that's easy to say now but I am conscious she's a good deal younger than me and life can be long if you have something missing. Certainly it was an issue in my marriage and definitely not talking about things and dealing with them contributed to the issues in my marriage.

I'm hoping I've learned enough to have the brave conversations and do what's necessary to make things good once things are sorted out for my treatment.

Hearing other peoples points and brilliantly open and truthful experiences is proving an invaluable resource here. It's the emotional stuff which is going to be difficult for me/us I think.

User
Posted 22 Mar 2019 at 09:30
I hope things work our for you Ezza.

In my few years on the site I have gone on and on about the importance of talking so that misunderstandings don't happen.

If we care about each other then we want the best for our other half, and that won't happen unless we, as partners, know exactly what fears and hopes we both have.

Keep going, keep talking.

Good luck for your future together

We can't control the winds - but we can adjust our sails
User
Posted 22 Mar 2019 at 10:22

I do not want cuddle

I do not want emotional support 

I do not want holding each other's hands

I do not want nice cheesy words 

All I want is ...........

 

S.E.X.!!! KAMA -SUTRA!!!!!

User
Posted 23 Mar 2019 at 00:55
Darkrainbow I think we had worked that one out!! Get yourself some Caverject you will be able to go all night!!!
User
Posted 24 Mar 2019 at 11:20
I don’t suggest the Brazilian Wandering Spider bite alternative 😱👹😂
User
Posted 24 Mar 2019 at 13:08

Franchj1

Thanks for your kind recommendation but Lynn had mentioned that (or somebody )

After the injection they had to go to A&E? 4 am in the morning. 

Is it risky and injection sound painful?

Thanks 

D.R

User
Posted 24 Mar 2019 at 13:10

Lol I never fancy Brazilian flat chested girls never mind the spider's:)

User
Posted 21 Jun 2019 at 18:56
The lovely Zoe has apparently left her post as ED nurse so J was referred to the new ED doctor at the hospital. Waited a while for his name to be called and eventually got into the consulting room.

Doctor - “why are you here?”

John explains history - RP, RT, HT - after good recovery, it is getting more difficult to maintain erections for more than a few minutes.

Doctor - “so what do you want?”

John - “Caverject didn’t work very well after the priapism, was hoping to try Muse”

Doctor - “won’t work”

John - “erm, what about the cream?”

Doctor - “won’t work”

John - “I thought it worked for some men?”

Doctor - “No. You can try Caverject again but you probably need to accept the situation.”

John - “okay, I will try the Caverject again”

Doctor - “you will need a referral to the nurses to be shown how to do it.”

J said the doctor was disinterested and negative - what a waste of time 😡

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

User
Posted 21 Jun 2019 at 19:01

That's sad. They can be really good people. You have to wonder if there's any justification behind the "won't work" responses. I wonder what job satisfaction he gets from that?

Might be worth asking GP or a urology consultant if there's someone/somewhere else you can be referred.

User
Posted 21 Jun 2019 at 19:02
Stevie, I am so sorry I missed your post in February. How are things going? Did you find an ED service in your area?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2019 at 21:12
My ED nurse was crap. To be honest I learnt more off this forum and self healed. If J is at the stage where he is needing Caverject then I guess you could sample some Invicorp privately. And the instructions for injection are better read than being shown sometimes. Contact me if you need details

If life gives you lemons , then make lemonade

User
Posted 21 Jun 2019 at 22:52
No, I am quite sure he doesn’t need injections yet - we would spend half our life at A&E!!! And anyway, as he pointed out to the doctor, he doesn’t need to be shown how to do it because he had plenty of practice already. It’s procedure to have to see the nurse after you have been referred to the doctor, apparently ... just a way of delaying him, in my opinion.

Doctor gave an example of dosage for comparison. Say Caverject delivers 20mg dose to the cavernosa. Muse is a 1000mg dose but less than 10mg actually reaches the cavernosa .... that might have been just right for the extra boost needed. But no, we will not be getting the chance to try :-/

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

User
Posted 22 Jun 2019 at 08:36
Why don’t you use the Online Clinic that I do and fill out the online consultation where you can explain the circumstances and that you are not getting satisfactory results from the NHS. There is no ED medicine I’m not allowed to buy from this UK certified clinic. Not cheap but neither overly expensive. At least you could try MUSE privately and if it works go to the GP and give it the full Lyn Eyre hair-dryer Alex Ferguson style. I’d be scared ....

If life gives you lemons , then make lemonade

User
Posted 22 Jun 2019 at 08:39
It says MUSE is currently unavailable due to manufacturers

If life gives you lemons , then make lemonade

User
Posted 25 Oct 2019 at 14:11
So after the appointment with Dr Doom in June, we finally saw the new ED nurse today to be shown how to use Viridal - OMG!!! The list of dos and don'ts and potential side effects would make anyone consider giving up sex :-/ She and I did not hit it off, partly because she spoke to us like we were idiots and when I asked about possible national shortages she nearly bit my head off.

The ED nurse was adamant that J must not take any Viagra or Levitra in the next 12 weeks and that it is not permitted under NICE guidelines to have prescriptions for more than one ED treatment (yeah, right). She also said that once you have had a priapism, you are not normally allowed to have any kind of alprostadil, etc, ever again so I suggested she read John's notes which clearly show Mr P's risk assessment & rationale for allowing him to continue. I don't think she knew there was an antidote either.

Anyway, first dose implanted and 12 doses collected from the hospital pharmacy - John could feel some reaction although it took us 90 minutes to get home so not much usable erection.

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

User
Posted 25 Oct 2019 at 20:19
I’m afraid Alprostadil never did it for me in either the Caverject or Viridal injection. Maybe I just wasn’t recovered enough but was only ever a part useable erection and shocking after-pain. The Invicorp was a totally different animal. Rock hard and zero effects other than an initial hot flush. Luckily all I need now is my daily Tadalafil which it seems lucky I’m still being prescribed reading others stories.

I really hope it works for you both x

If life gives you lemons , then make lemonade

User
Posted 25 Oct 2019 at 20:29
Caverject was always rock hard for me, it was the 2 hours waiting to make sure it went away that was the problem. Convinced to this day that it helps "clear out the cavities" though.

I found I had to get up and walk around as the only way to get rid of it,

User
Posted 25 Oct 2019 at 20:51
No pain, no itching, no problem so far :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2019 at 09:08

 Thank you Lyn and other contributors for this thread, useful background info for someone like me who is just beginning out to seek treatment for ED.

I am trying to hijack this thread with some questions, hope is okay ? I tried to start a new thread, but wasn't allowed?!

I am 12 weeks post op bilateral nerve sparing. Have been on Cialis 2.5 mg and have tried 20 mg extra on 2 occasions recently, sadly little response only, just about useful for masturbation, self/OH. (There was some activity within a few days post op and was very hopeful, but sadly nothing after and was told that catheter can sometimes give that sensation(

I am worried about atrophy mainly.

Penile pump seem to be the best option and scared to use injections etc.

My questions

1. Where can I buy medical grade pumps and approx costs? For various reasons I dont want to go to my own hospital ED clinic.

2. If Cialis doesn't work now, it should later? Or does that mean, tablets will never work for me ever? I was hoping this will be a simple treatment for ED. The urologist said tablets would work even if nerves are removed, but I had it spared and still doesn't work

3. How long will it take for penis to atrophy? Will masturbation stop penile atrophy (embarrassed to ask this)

4.  Any other suggestions.

Thank you in anticipation

Thala

User
Posted 26 Oct 2019 at 09:39
Firstly you need to look at the bigger picture ok. Even with sparing like myself it can take 2yrs before you are anything like normal spontaneous sex. And even then with tablets etc. Your Cialis dose would be better at 5 mg which is the gold standard. At first I didn’t notice size reduction on full erection , but in time it has settled to maybe 1 1/2 inches smaller , although the pump seems to have made it thicker on full erection. Please please please buy a pump and make it part of your every day for the next few years. It will be your saviour and maintain size and health. With the rings it can be used for penetration but without rings it should be used to achieve full size then hold for at least 10 mins. I used the website imedicare.com and bought a soma erect response 2 which has been awesome. You need to buy the jelly rings also. All in you are looking at £200 delivered , but like I say it is imperative for rehab. I still use mine 3 times a week while shaving and I’m 4 1/2 yrs on. With tablets it’s essential for stimulation whether visual or physical to get good erections , so it really is a partner success story. I still find it hard to masturbate but with my wife it is instant now. I did try injections in my early recovery and loved the invicorp which you can buy privately for a real treat on a date night. Be careful of mixing treatments though. Anyway good luck. There is a thread called “ erecting the erection - medication “ which has loads of info from many men and women so try search fir it

If life gives you lemons , then make lemonade

User
Posted 26 Oct 2019 at 11:47
thank you Chris

I have now found several threads on ED, I didnt search the forum well until now and are very informative.

BW

Thala

User
Posted 26 Oct 2019 at 12:00

I was offered a penis pump on the NHS, but couldn’t be bothered. I think Her Loveliness is quite pleased!

However, we did enjoy a bit of ‘tweakies’ on our Caribbean cruise last weak - must have been the weather or the rum punches.

Cheers, John.

Edited by member 26 Oct 2019 at 12:01  | Reason: Not specified

 
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