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Hope and fear

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User
Posted 17 Nov 2022 at 12:50

Hello everybody,

I'm a 59 years old  french woman Professor of Medicine. Unfortunately I could not find such a forum in France, that would have been much easier for me....My husband (12 years older than me and private dermatologist) had urinary disorders 4 years ago. He visited the Professor of Urology from my University Hospital who thought it was due to a prostate problem. After MRI he performed biopsy in December 2018 that all were negative. The Professor announced me that good result 3 days before Christmas 2018. In January 2020 the situation worsened and my husband met again the urologist who again performed biopsies. No cancer. But also no further investigations. And in May 2022 two drops of blood in the urine and finally a bladder cancer has been discovered (muscle-invasive). Mostly this type of cancer affects smokers, but my husband never smoked and has a very healthy life with a lot of sport. He had to receive chemotherapy before intervention but developed renal failure after the first injection (due to a mistake from the oncologist...). On the 12th of August (the 40 th anniversary of our meeting...somewhat very crual for both of us) my husband underwent a 11.5 hours intervention with cystoprostatectomy and reconstruction of a neo bladder. The urologist told he preserved the bundles. We are lucky that all analysis of the tissues were free of active cancer. He spend 3 weeks in the hospital.

The side effects of cystoprostatectomy are the same  than those of a "simple" prostatectomy with risks of incontinence and ED. My husband has very little problem with incontinence. We asked the urologist about the risk of ED before the intervention. He did not clearly answered that after prostatectomy all men are impotent (for a short or long period or the rest of their life). He just said "the sex will after never be like before", but did not ask how it is before. The surgeon did not ask but I decided to explain how it is (my husband was totally mute at that time): we love each other deeply and have marvelous sexual life with sexual activity with a lot of tenderness 3-4 times a week and everyday during holidays. Then the urologist announced that if sex is important for us he will make everything possible to preserve the bundles and will prescribe Cialis 5.

Just after catheter removal we noticed that orgasm was not lost, finally something was left to us ! Since we continue to have intimacy as before. Of course without penetration and much more oral sex than before. My husband has nice erection since two weeks but no hardness. Can someone tell me if we can hope some more progress in the rigidity ? 

In summary, miraculously the bladder cancer is behind us but we have to overcome the side effect of the prostatectomy. For me it's quite difficult to accept because of the initial medical error (if the diagnostic of bladder cancer would have been performed 18 months sooner probably the intervention would have been avoided)

I have a message that concerns everybody who has the big chance to have a loved man (or woman) who shares his life: never wait to be sick to develop an enormous quantity of tenderness in your couple, seize any occasion to express your love

Have a nice day

 

User
Posted 17 Nov 2022 at 12:50

Hello everybody,

I'm a 59 years old  french woman Professor of Medicine. Unfortunately I could not find such a forum in France, that would have been much easier for me....My husband (12 years older than me and private dermatologist) had urinary disorders 4 years ago. He visited the Professor of Urology from my University Hospital who thought it was due to a prostate problem. After MRI he performed biopsy in December 2018 that all were negative. The Professor announced me that good result 3 days before Christmas 2018. In January 2020 the situation worsened and my husband met again the urologist who again performed biopsies. No cancer. But also no further investigations. And in May 2022 two drops of blood in the urine and finally a bladder cancer has been discovered (muscle-invasive). Mostly this type of cancer affects smokers, but my husband never smoked and has a very healthy life with a lot of sport. He had to receive chemotherapy before intervention but developed renal failure after the first injection (due to a mistake from the oncologist...). On the 12th of August (the 40 th anniversary of our meeting...somewhat very crual for both of us) my husband underwent a 11.5 hours intervention with cystoprostatectomy and reconstruction of a neo bladder. The urologist told he preserved the bundles. We are lucky that all analysis of the tissues were free of active cancer. He spend 3 weeks in the hospital.

The side effects of cystoprostatectomy are the same  than those of a "simple" prostatectomy with risks of incontinence and ED. My husband has very little problem with incontinence. We asked the urologist about the risk of ED before the intervention. He did not clearly answered that after prostatectomy all men are impotent (for a short or long period or the rest of their life). He just said "the sex will after never be like before", but did not ask how it is before. The surgeon did not ask but I decided to explain how it is (my husband was totally mute at that time): we love each other deeply and have marvelous sexual life with sexual activity with a lot of tenderness 3-4 times a week and everyday during holidays. Then the urologist announced that if sex is important for us he will make everything possible to preserve the bundles and will prescribe Cialis 5.

Just after catheter removal we noticed that orgasm was not lost, finally something was left to us ! Since we continue to have intimacy as before. Of course without penetration and much more oral sex than before. My husband has nice erection since two weeks but no hardness. Can someone tell me if we can hope some more progress in the rigidity ? 

In summary, miraculously the bladder cancer is behind us but we have to overcome the side effect of the prostatectomy. For me it's quite difficult to accept because of the initial medical error (if the diagnostic of bladder cancer would have been performed 18 months sooner probably the intervention would have been avoided)

I have a message that concerns everybody who has the big chance to have a loved man (or woman) who shares his life: never wait to be sick to develop an enormous quantity of tenderness in your couple, seize any occasion to express your love

Have a nice day

 

User
Posted 18 Nov 2022 at 00:29

If he is just on 5mg Tadalafil, he should ask to try a 20mg tablet ("event" dose), as that may be more effective. You can only take this 2-3 times per week, and for many men, Tadalafil lasts for 2 days anyway. Obviously, skip the 5mg tablets for a few days if you take a 20mg.

User
Posted 18 Nov 2022 at 00:36
Durex cock ring will help with the "stiffness". Worth a try they are cheap and easy to use..
User
Posted 08 Dec 2022 at 15:07

Thank you Mish58 for sharing your experience!

Concerning the ring: we tried once, but it took too much time to open the blister and read the instruction for use (perhaps my lovely husband should have studied it sooner...😋). Once the device seemed under control the penis had nearly disappeared ! We'll be quicker next time.

Yesterday evening we had a "serious" discussion. We were in bed and my husband kissed me, and after a moment I noticed that he checked if something happens downstairs. As the penis did not show any sign of life, he dropped it with a look of disdain. I said that with such a behavior things are not going to get better. Of course, on the anatomic point of view the penis belongs to my husband. But for love it concerns both of us. Therefore my husband must treat this common good with respect !!!  Every time I was pregnant, on the anatomic point of view the child was mine, but how  my husband would have reacted if I had bad feeling about our child ? 

My husband promised that now he will consider his penis as if it was my own.

See you later for a new episode

 

User
Posted 14 Dec 2022 at 12:17
Should have stuck the ring on that 45' boner would have turned it into a 95% jobbie.

He (and you!) also need to realise the stimulation required is several levels above what was necessary before PC.

So I used to get a hard-on from my sodding seat belt driving the car. Now I have to be patient and wait until we are really getting it on until anything starts happening.

It is just as easy to lose it too, that is where the ring really helps keep whatever swelling you have "locked in"

User
Posted 14 Dec 2022 at 14:19

Originally Posted by: Online Community Member
Should have stuck the ring on that 45' boner would have turned it into a 95% jobbie.

He (and you!) also need to realise the stimulation required is several levels above what was necessary before PC.

So I used to get a hard-on from my sodding seat belt driving the car. Now I have to be patient and wait until we are really getting it on until anything starts happening.

It is just as easy to lose it too, that is where the ring really helps keep whatever swelling you have "locked in"

 

In the Army we called this convoy c**k 😂

User
Posted 26 Jul 2023 at 18:27

A few news from our house in France,

Nearly one year from the cystoprostatactomy (12th of August 2022 with double nerve sparing surgery)) we feel very blessed. First the bladder cancer did not dissiminate (when it happens it is mostly in the first few months after surgery). Then the ED improves. My husband took 5 mg cialis since the surgery and we kept intimacy without waiting for a true erection. He had tumescence shortly after surgery but some kind of rigidity  occured for the first time in january after very long foreplay and we tried the flaccid insertion technique  which was very pleasant for both of us, so we kept this practice till may. Then my husband had to stop cialis due to a terrible acid reflux which was increasing and terrible.

In June we met the urologist who prescribed viagra (100 mg twice a week).  With viagra no reflux and it works perfectly with a quality or erection of 10/10. My husband takes it with empty stomach at six in the morning or at 10 in the evening (after a light dinner at seven) and one hour later everything works perfectly.

We don't know if viagra will keep its effect  over the coming months but it was really worth trying.

I'm sure that this unexpected outcome is the result  of the quality of the nerve sparing surgery in conjunction with very frequent and very pleasant sexual relations even with only minor signs of life in the penis.

As a wife I can say that my husband is a better lover than before. He  was always very attentive to my pleasure but now  foreplay last much longer. 

Good luck to the new members and for those who have to deal with persistant ED never give up !

Catherine

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User
Posted 17 Nov 2022 at 20:06

Response to Newirth:

I am so very sorry for you and for your husband.  It is very hard to accept that the bladder cancer might have been caught so much earlier with more attention.  And then to experience renal failure because of a mistake by the oncologist. 

We place our lives in the hands of "experts" and trust them that 'everything will be OK' so it is very hard to accept when things go so badly wrong. 

I wish you both long life and I hope that you achieve some peace from such a difficult situation.  I also hope that the sexual side of your relationship can continue to improve over the coming months and years.

User
Posted 17 Nov 2022 at 22:13
Bienvenue Neuwirth.

I think everyone here has experienced side effects of prostatectomy - and your husband has suffered much more than that - and is sympathetic to your situation. Your husband is lucky not to have suffered incontinence, at least temporarily. However you have to face the fact his sexual function will never be the same as before. If nothing else, removal of the prostate means he will no longer produce semen and that in itself changes the sensation of orgasm for both of you. Plus, the surgeons don't tend to tell you that even if they take efforts to preserve the parasympathetic nerve bundles, those nerves will inevitably suffer trauma during prostatectomy and there will inevitably be consequences for erectile function with recovery taking time and quite likely not being 100%. Tadalafil (Cialis) can help.

If you read all the experiences on this forum you will find that very many couples have found ways of adjusting to the changed sexual capabilities, and it is excellent that you are already finding ways to maintain your intimacy. From my own experience, I am optimistic about your situation: if your husband is getting erections three months after prostatectomy that is very encouraging even if they aren't hard enough for penetration at the moment. For me, like quite a few others here, erectile function continued to improve for at least 12 months from the operation so I would expect things to get better.

Bon chance!

User
Posted 18 Nov 2022 at 00:29

If he is just on 5mg Tadalafil, he should ask to try a 20mg tablet ("event" dose), as that may be more effective. You can only take this 2-3 times per week, and for many men, Tadalafil lasts for 2 days anyway. Obviously, skip the 5mg tablets for a few days if you take a 20mg.

User
Posted 18 Nov 2022 at 00:36
Durex cock ring will help with the "stiffness". Worth a try they are cheap and easy to use..
User
Posted 29 Nov 2022 at 19:58

Hi,

Thank you for the advice !

We have just now ordered a Durex cock ring. Only one size. We shall see !

We laughted  a lot, thinking how it can be wonderful, or.....not

I wish you all the best

 

User
Posted 29 Nov 2022 at 22:07
Laughing is good! There may be a few issues, but have fun working a way round them.
User
Posted 08 Dec 2022 at 11:43

Yes to laughter and cock rings! And it is lovely to hear how you partnership is responding to these changes.

On your original question, about going from penis getting big to actually getting hard:
For me the first signs of hardness were a bit less than 12 months, and then the next two years it has been on-and-off. Sometimes naturally quite hard, other times unreliable. As I get close to my third anniversary the frequency of real natural hardness is definitely getting more. 

As you have probably already noticed, penetrative sex is about the biggest test of an erection. Stimulation with hand or mouth works fine even when not very hard, but penetration can literally knock the stuffing out of a marginal erection.

Also, in the first year, the drugs like Cialis and Viagra made absolutely no noticeable difference, but now I find that 25mg of Viagra makes my erections like they were when I was young. I still don't use it often because it makes my head feel funny, like I have a hangover without drinking.

What works really well now that my natural erections are better than 50% is a cock ring of the sort others have recommended. It is no fuss, no pain, and definitely supports better erections and they last much longer.

User
Posted 08 Dec 2022 at 15:07

Thank you Mish58 for sharing your experience!

Concerning the ring: we tried once, but it took too much time to open the blister and read the instruction for use (perhaps my lovely husband should have studied it sooner...😋). Once the device seemed under control the penis had nearly disappeared ! We'll be quicker next time.

Yesterday evening we had a "serious" discussion. We were in bed and my husband kissed me, and after a moment I noticed that he checked if something happens downstairs. As the penis did not show any sign of life, he dropped it with a look of disdain. I said that with such a behavior things are not going to get better. Of course, on the anatomic point of view the penis belongs to my husband. But for love it concerns both of us. Therefore my husband must treat this common good with respect !!!  Every time I was pregnant, on the anatomic point of view the child was mine, but how  my husband would have reacted if I had bad feeling about our child ? 

My husband promised that now he will consider his penis as if it was my own.

See you later for a new episode

 

User
Posted 13 Dec 2022 at 07:01

Originally Posted by: Online Community Member

My husband promised that now he will consider his penis as if it was my own.

I agree with you that erections are fun sex toys meant to be shared! And I can empathise with your husband - it has been a shock for me that I can no longer tell whether my erection is growing just by instinctive feeling, like I always used to. Now either I or my wife have to put a hand down there to check. For men, born with an abundance of erections that always let us know they are eager, this is a big shock.

Do persist with pumps and rings - it takes time but they can help!

User
Posted 14 Dec 2022 at 08:43
My husband does not want to use a pump at all ("I'm not a plumber" 🤢... ). Since the Cialis 5 mg he had been taking every day since the cystoprostatectomy was giving him stomach problems, the urologist told him that he should take 20 mg 2 to 3 times a week. He tried it yesterday for the second time and obtained a 45 degree hard erection.It will give him confidence and the certainty that nothing should be abandoned. He concluded that we are lucky, the operation is only 4 months old !
User
Posted 14 Dec 2022 at 09:14
There’s loads of hope for you if it’s just 4 months and he is responding to Cialis. Maybe try for the low dose 5mg nightly or chop the pills you have to obtain this. If sex is vital to you both ( like us ) then your GP should give you a PPI pill to reduce the stomach issues. My erection recovery was still great between years 2 and 3 after recovery so never give up. However he really should use the pump as much as possible purely for re-hab purposes. Good luck
User
Posted 14 Dec 2022 at 12:17
Should have stuck the ring on that 45' boner would have turned it into a 95% jobbie.

He (and you!) also need to realise the stimulation required is several levels above what was necessary before PC.

So I used to get a hard-on from my sodding seat belt driving the car. Now I have to be patient and wait until we are really getting it on until anything starts happening.

It is just as easy to lose it too, that is where the ring really helps keep whatever swelling you have "locked in"

User
Posted 14 Dec 2022 at 12:34

@francij1 you nailed it. Simple, true, direct.

User
Posted 14 Dec 2022 at 14:19

Originally Posted by: Online Community Member
Should have stuck the ring on that 45' boner would have turned it into a 95% jobbie.

He (and you!) also need to realise the stimulation required is several levels above what was necessary before PC.

So I used to get a hard-on from my sodding seat belt driving the car. Now I have to be patient and wait until we are really getting it on until anything starts happening.

It is just as easy to lose it too, that is where the ring really helps keep whatever swelling you have "locked in"

 

In the Army we called this convoy c**k 😂

User
Posted 14 Dec 2022 at 15:10
Difficult to understand for a French person😰

It's funny, surely...

User
Posted 26 Jul 2023 at 18:27

A few news from our house in France,

Nearly one year from the cystoprostatactomy (12th of August 2022 with double nerve sparing surgery)) we feel very blessed. First the bladder cancer did not dissiminate (when it happens it is mostly in the first few months after surgery). Then the ED improves. My husband took 5 mg cialis since the surgery and we kept intimacy without waiting for a true erection. He had tumescence shortly after surgery but some kind of rigidity  occured for the first time in january after very long foreplay and we tried the flaccid insertion technique  which was very pleasant for both of us, so we kept this practice till may. Then my husband had to stop cialis due to a terrible acid reflux which was increasing and terrible.

In June we met the urologist who prescribed viagra (100 mg twice a week).  With viagra no reflux and it works perfectly with a quality or erection of 10/10. My husband takes it with empty stomach at six in the morning or at 10 in the evening (after a light dinner at seven) and one hour later everything works perfectly.

We don't know if viagra will keep its effect  over the coming months but it was really worth trying.

I'm sure that this unexpected outcome is the result  of the quality of the nerve sparing surgery in conjunction with very frequent and very pleasant sexual relations even with only minor signs of life in the penis.

As a wife I can say that my husband is a better lover than before. He  was always very attentive to my pleasure but now  foreplay last much longer. 

Good luck to the new members and for those who have to deal with persistant ED never give up !

Catherine

User
Posted 26 Jul 2023 at 20:59

Hi Neu,

That is good news -Congratulations!  I am sure that it is because of your perseverance.

Best wishes,

JedSee.

User
Posted 27 Jul 2023 at 10:07

What great news and thank you for sharing! Like your husband, I found the Cialis did not agree with me. Viagra also makes my head feel funny, but like for your husband I find it works well with my erections, and at least the "thick" head, a bit like a hangover, doesn't last as long as with Cialis. I am finding I prefer to go without any drug, even though I am not so hard. Like you said, lots of good lovemaking can happen without youthful erections.

 
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