Things I should prepare, ask, know before Surgery

User

Posted 18 Dec 2018 at 11:17

Hi Everyone,

My name is Vindci, from India.

I am 48 years old, single. I found out about my condition as a matter of routine preventative examinations. My PSA levels were 3.0 to 4.06 for a period of 3 years that I started monitoring. I did not think it was an issue as the range indicated in the results were 0-4.

Last year I met my doctor and asked him if there is anything men can do as a routine cancer preventative examination. He suggested regular blood work, PSA, Chest X-Ray, and a Sonography of the pelvis and abdomen. Nov of 2017 I had my tests done and the results indicated small kidney stones. Since I had to travel, the doctor gave me some SOS meds to take if needed and asked me to repeat the tests on my return.

I repeated the tests in May and the results indicated a couple more kidney stones. This time I went to a urologist who asked me to get a KUB CT Scan to verify the results and also do a Free and Total PSA instead of just the Total PSA that I was doing all this time. He said he wasn't very happy with the PSA results at the time. The CT scan indicated fewer stones (probably picked up some protein but the PSA results were 3.96, Free PSA of 0.46 with the ratio of 11.6. The Dr. suggested an MRI and results of which indicated a small lesion of 6 x4 mm (AP X TT) falling under PIRADS 4. He suggested a Biopsy. I had to make an unavoidable trip for business and delayed the Biopsy due to the possibility of an infection.

I underwent a Bioposy on Nov 30, from the 13 samples collected, 3 were with Glesan 7 and 1 Glesan 8. The PSMA PET CT was clear.

The Dr. has suggested Robotic Nerve-sparing Radical Prostatectomy. He said it is best we get it out considering an aggressive Glesan of 8. At this time it is contained and said it would be best if we do a prostatectomy for if at a later stage anything emerges we could do Radiation.

He informed me about the side effects, mainly loss of ejaculation, Incontinence for a period, and ED. He told me I'll be discharged on the third day after surgery and the catheter will be removed on the 10th day. He said I'll be able to walk around the house, and can go back to work in 4 weeks depending on the incontinence.

After a week of having the Biopsy, I masturbated and noticed a reddish ejaculate and got scared, the Dr. said it is normal and asked me to give it a rest for some. But, I wanted to enjoy my last few days... I haven't masturbated since.

I also had an opportunity to speak to a few of his other patients. All of them were straight and much older. This is mainly because in India talking about any sex, sexual side effects in detail even if it is medical is still taboo let alone having a conversation of addressing the sexual concerns for gay men.

Thanks to everyone in this group for being so candid and open about the surgery, rehab, and your experiences. I had no idea about penile rehab, pumps, or the injections.

My surgery is scheduled for Jan 05, 2019.

I request you to please let me know and help me with anything I need to ask, prepare, or need to know about the surgery. Should I ask them for Cialis 5 mg? How does it help? Is it necessary.

Thank You Very Much. Looking forward to hearing from you.

Best,

Vindci

User

Posted 30 Dec 2018 at 22:01

Hello Vindci,

I had the sugery to remove the prostate last April, the 5th. I stayed 4 days in hospital and came back to have the catether removed 6 days after surgery. My worst experience I can remember of the surgery was the catether. It was not pain, but a lot of discomfort that lasted for almost a week and then it was out and I forgot the nuisance.

There was a bit of pain afyer surgery, of course but absolutely manageable. Nothing that a good drug can help. There was also a lot of discomfort in belly area due to gas which went away in 2 weeks time.

Not a big deal I can tell you.

Difficult was to handle the incontinence ... After catether removal I was fine for 3 days and then I started having leakages as I was moving more and more as I was healing. This was really difficult to handle. I never used more than a pad anyway and I could go to toilet very often before anything was out indeliberatly. However I had to live with this for 3 months. I was feeling improvements after 1,5 months and removed the usage of pads on month 3 after surgery as already said.

I strongly advise you to do the kegel exercises right after catether removal and as early as you can do them while walking. This was what I felt did me better.

ED was the second side effect that worried me too and in fact it is still not settled, despite the big improvements I had till today. I started taking 5 mg cialis every day after surgery and 20mgs as SOS. I noticed improvements over time but the erection recovery was much slower than the continence recovery. I can get now a good erection if well estimulated but rarely good for a lasting penetration. I still have some time to wait for improvements according to doctor and I have a prescription for an injection which I haven't used yet. My partner and I are satisfied anyway. We learned to live with this new situation.

Orgasms are very satisfying though and they were from the very beginning. I was surprised to feel I could get a very good orgasm with a flacid penis :-)

I had my first anal penetration a few days before the 3 months mark after surgery and no problem with it whatsoever.

One big advise to you is to have some patience with the recovery steps after surgery. You are very yourng and you will surely recover well. I hope this short summary of my experience is of support to you and feel free to ask me anything.

All the luck for the surgery and let us know how you go.

Have a great 2019.

Paulo

I hope a bit of a summary

User

Posted 18 Dec 2018 at 11:40

Vindci, blood in the semen is absolutely normal following a biopsy. It can last a couple of months, and is absolutely nothing to worry about.

Best of luck for your surgery,

Chris

User

Posted 18 Dec 2018 at 14:20

Hi Vindci,

Having the operation and letting it heal without stress were so high on my priorities that nothing else came into it. I was given 20mg Cialis after 2 months and didn't take it for another 2 months. I then found it gave me aches in the shoulders which from reading on here I found is one of many possible symptoms. Perhaps 5mg would have been better as I stopped using it and have rejected any treatment in that area although it's proving a long road, 2yrs. I'll admit my desire isn't as big as it was.

I don't know what it's like in India but making sure you have enough bags for your catheter, a container for the bags overnight, an ability to keep things very clean and a good stock of decent continence pads. Carry spare one's if you go out of the house. Doesn't sound too great all that but it soon passes.

I was also advised not to think everything that happens, such as pains, are related to the illness or operation. My op was quite pain free.

Hope all works out well Regards Peter

User

Posted 19 Dec 2018 at 11:12

You do drain the bag using a tap, you need some spares for accidents etc.

User

Posted 30 Dec 2018 at 22:13

Hello again,

Something I want to add. I got back to work 2,5 weeks after surgery. I had some trouble to be seated for so long in the beginning of my return, but working did me good as ot kept me busy and away from the not so nice things of this situation. One month after surgery I was doing my first trip by plane for 2 days.

So as you see this type of surgeries, despite being invasive, are not very limiting to our regular daily life.

You take care.

Paulo

User

Posted 02 Jan 2019 at 10:57

Vindci, when the catheter comes out you may experience total incontinence - it isn’t just little leaks for everyone, some men have a total loss of control while others have hardly any problems at all.

It is important not to do keels while the catheter is in situ.

Not sure that you would be advised to use the pump two weeks after surgery if you were in the UK. The urethra join needs time to heal so probably at least 6 weeks would be the norm.

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

User

Posted 18 Jan 2019 at 15:43

Hello!

Wanted to post my update!

While I had the catheter in, I had three issues:

(1) Every time I sat on the toilet seat I leaked urine from my penis instead of the catheter - just at that time and it stung like hell, I had to take a painkiller to subside the pain.

(2) There was a lot of small blood clots and sediment in my urine that I noticed in the catheter bag which got me worried.

(3) I had pain near my anus - just by the tail bone.

I had my catheter removed on 2 days back after 12 days, it was just uneasy and wasn't as painful as I had anticipated. The staples were moved too and that wasn't painful at all.

As for my complaints:

(1) For the burning, the doctor started me an antibiotic in case I had an infection.

(2) For the clots, he asked me to drink a lot of water to flush out the sediments.

(3) For the pain, he said it will go with time.

While still in the hospital, the doctor asked me to drink plenty of water because he wanted to check the flow. The first instance was painful as there were some small blood clots that were blocking which finally gave way and then was the big release. The doctor asked me not to control and to my surprise I urinated 5-6 times involuntarily (which was worrisome) in 2 hours.

The forty minute ride home was uneventful.

The Incontinence: The doctor asked me to lay on my back for 2 days and rest, then to sit for next two days and start the kegel exercises and then walk for two days. I was ok the two days I was laying in bed, I had almost no leakage - I kept going to the toilet before it was full to avoid any mishap. Today was the first of the sitting days and to my surprise the incontinence was noticeable and pronounced on standing up and walking, while almost non-existent when sitting. I've done kegel exercises three times (3 sets x 3 times), I'm hoping it gets better soon.

The blood clots (they are like chili flakes) and the sand like sediments continue to appear in every time I urinate even though my urine is absolutely clear. Has anyone else experienced this? I'm very worried about it. Also anyone has experienced the pain?

Thanks for all your support.

VindCi

User

Posted 18 Jan 2019 at 16:35

Blood clots - they get darker the older they get and are common and nothing to worry about. You are just healing. Red blood is fresh, and more to worry about.

I didn’t have hardly any pain, so can’t comment on your second question.

Cheers, John.

User

Posted 18 Jan 2019 at 17:23

All sounds perfectly normal

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

User

Posted 05 Feb 2019 at 11:25

All sounds OK

User

Posted 05 Feb 2019 at 11:41

I had the same issues with altered bladder sensation. It was more discomfort than a feeling of a need to urinate.

This has gradually improved since my op' in October and is much better...but not exactly as it was preop'

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User

Posted 18 Dec 2018 at 11:40

Vindci, blood in the semen is absolutely normal following a biopsy. It can last a couple of months, and is absolutely nothing to worry about.

Best of luck for your surgery,

Chris

User

Posted 18 Dec 2018 at 11:49

Thanks very much Chris, I'm going to give it go another time.

Best,

Vindci

User

Posted 18 Dec 2018 at 14:20

Hi Vindci,

I was also advised not to think everything that happens, such as pains, are related to the illness or operation. My op was quite pain free.

Hope all works out well Regards Peter

User

Posted 19 Dec 2018 at 08:06

Hi Peter,

Thanks very much for your reply.

I'm going to meet with my doctor and the GP this weekend and ask them about Cialis.

I didn't realize I would need multiple bags, I thought it was just the one bag that is drained, thanks for the heads-up.

I've ordered some pads and diapers, I'm hoping things heal fast in that area.

I'm trying not to worry about things too much because the doctor is very good and so is the hospital; it's just that people don't talk about things openly and easily. It's only when you ask do they inform.

Thanks very much.

Vindci.

User

Posted 19 Dec 2018 at 11:12

You do drain the bag using a tap, you need some spares for accidents etc.

User

Posted 30 Dec 2018 at 22:01

Hello Vindci,

Not a big deal I can tell you.

I strongly advise you to do the kegel exercises right after catether removal and as early as you can do them while walking. This was what I felt did me better.

Orgasms are very satisfying though and they were from the very beginning. I was surprised to feel I could get a very good orgasm with a flacid penis :-)

I had my first anal penetration a few days before the 3 months mark after surgery and no problem with it whatsoever.

All the luck for the surgery and let us know how you go.

Have a great 2019.

Paulo

I hope a bit of a summary

User

Posted 30 Dec 2018 at 22:13

Hello again,

So as you see this type of surgeries, despite being invasive, are not very limiting to our regular daily life.

You take care.

Paulo

User

Posted 02 Jan 2019 at 08:29

Hello Paulo,

Wishing you a Very Happy New Year and a fantastic 2019.

Thanks very much for your detailed reply, really appreciate it. Everything you have mentioned in your posts is invaluable, especially because there is absolutely no one and no medical advise on rehab. It is so gratifying to hear about the detailed time line about your progress; I'm praying fro the best and hoping to get back to normal after a considerable and required period of rest.

Incontinence: I've started doing kegel exercises to get familiar with the right action; I've arranged diapers and pads as well. When I was informed about incontinence I thought one losses complete control, now that I know it's a few leaks and not the entire stream - that itself is a relief.

ED: I've started taking on a generic version of Cialis 5mg (Brand not available in India) since 10 days after speaking to my doctor. Initially, I was worried I may get an instanteous erection and would be embarassing at work, at this time I don't see any difference since I could get an erection even before on stimulation. The doctor said it is primarily to keep the pathway open for blood flow and will not give me a constant and frequent erection. He has asked me to continue up until one day before the surgery.

After how many days did you start taking Cialis after surgery? And the pump? The doctor has advised to start using the pump 2 weeks after surgery once the catheder is out.

I was worried about the Orgasms too. Thanks very much for clarifying the intensity and the continual of pleasure from it as well. After how many days did you first have sex? I'm single, so it's going to be masturbation for now. Did you have to change the way/method of your grip, or any ways that you felt it was more stimulating. I'm wondering how it'll be the first time without any cum.

Thanks so much Paulo! For some reason I cannot send you a private message with my contact information (phone/email), but would love to keep in touch.

My surgery is on Satruday Jan 05. I'm praying all goes well.

Thanks very much.

All Best,

VindCi

User

Posted 02 Jan 2019 at 08:34

Happy New Year Everyone! Wish you a fantastic 2019.

Thanks to each one of you and this site, you've been God Sent. If not for members of this site, I would've never asked the right questions and therefore never known of penile rehab.

The candid confessions and supportive responses have made this difficult journey so much easier.

My surgery is on Saturday Jan 05. Will keep you'll informed.

Thanks a million.

VindCi

User

Posted 02 Jan 2019 at 10:57

It is important not to do keels while the catheter is in situ.

Not sure that you would be advised to use the pump two weeks after surgery if you were in the UK. The urethra join needs time to heal so probably at least 6 weeks would be the norm.

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

User

Posted 02 Jan 2019 at 11:06

Thanks very much LynEyre!

I was a bit worried about using the pump so early as well, I'll start it after 6 weeks.

The doctor has advised me to continue taking tadalafil 5 mg (Cialis) up until the day before the surgery; can you suggest when I can start taking tadalafil 5 mg again. Most posts here have mentioned that they started 3 days after surgery.

Thanks very much.

VindCi

User

Posted 02 Jan 2019 at 13:57

Hi,

There is plenty of help and advice available for you on this Prostate Cancer UK website.

e.g.

https://prostatecanceruk.org/media/11611/surgery_radical-prostatectomy-ifm.pdf

Hope this helps

User

Posted 02 Jan 2019 at 14:25

Hi Vindci,

I also don't use cialis, but rather a generic from cialis, but I am told it is the same. I started using it a couple of days after catether removal.

I started using the pump about a month or so after surgery.

I had sex wth my partner as early I could - maybe 2 weeks, but of course no penetration. We had to find other ways, as well as till now, as sex is not actually the same as before, but it can be as pleasurable as before. I relied also a lot on masturbation, because the doctor said apart from cialis, it would be good to stimulate the blood flow.

I didn't miss the ejaculation to be honest.

All the best to the surgery.

Paulo

Edited by member 02 Jan 2019 at 21:35 | Reason: Not specified

User

Posted 12 Jan 2019 at 15:06

Hello Everyone!

I had my surgery last Saturday. All went well according to the doctor, he said he could spare the nerves.

I was sent home with a catheter on Monday. Had some stomach issues that got resolved in 3 days. Other than that, all ok.

The doctor continued/started me on tadalafil 5mg 3 days after surgery.

I've to go to the hospital on Wed, Jan 16 to remove the stitches and the catheter.

Thanks a million everyone of you, I would've never known to ask the questions I did for which I could have my nerves spared and start on tadalafil.

The next thing is to start with the pump in 6 weeks as advised.

Please let me know if there is anything I need to do, follow any diet or routine post surgery.

Thanks and All Best,

VindCi

User

Posted 18 Jan 2019 at 15:43

Hello!

Wanted to post my update!

While I had the catheter in, I had three issues:

(1) Every time I sat on the toilet seat I leaked urine from my penis instead of the catheter - just at that time and it stung like hell, I had to take a painkiller to subside the pain.

(2) There was a lot of small blood clots and sediment in my urine that I noticed in the catheter bag which got me worried.

(3) I had pain near my anus - just by the tail bone.

I had my catheter removed on 2 days back after 12 days, it was just uneasy and wasn't as painful as I had anticipated. The staples were moved too and that wasn't painful at all.

As for my complaints:

(1) For the burning, the doctor started me an antibiotic in case I had an infection.

(2) For the clots, he asked me to drink a lot of water to flush out the sediments.

(3) For the pain, he said it will go with time.

The forty minute ride home was uneventful.

Thanks for all your support.

VindCi

User

Posted 18 Jan 2019 at 16:35

Blood clots - they get darker the older they get and are common and nothing to worry about. You are just healing. Red blood is fresh, and more to worry about.

I didn’t have hardly any pain, so can’t comment on your second question.

Cheers, John.

User

Posted 18 Jan 2019 at 17:16

Thanks very much Bollinge!

It’s not the color it’s the amount and frequency is what is worrying me.

Pain is better.

User

Posted 18 Jan 2019 at 17:23

All sounds perfectly normal

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

User

Posted 18 Jan 2019 at 17:57

Thanks very much LynEyre, appreciate it!!

User

Posted 20 Jan 2019 at 17:10

Hello,

After drinking 3 liters of water for 2 days, the blood clots and sediments have stopped. The intensity of the pain has also reduced.

Now dealing with the incontinence, especially when walking and standing. I'm not sure if I found this link on this support group or another, but this video was of great help https://www.youtube.com/watch?v=7CSP6Sicm8Q

I'm now on 1 tab Cialis 5mg in the morning. I was watching some videos online on YouTube where the doctors were suggesting moving to a higher dose to promote blood flow soon after surgery. And if the tablets don't work then to start with the injections.

https://www.youtube.com/watch?v=pWyMzYp1UXg

https://www.youtube.com/watch?v=ie8NkOu2VNA

- V

User

Posted 20 Jan 2019 at 17:21

You are already on a high dose of Cialis daily - the starting point is supposed to be 2.5mg with a rise to 5mg if it does not seem to be helping. NICE guidelines are key here - 2.5mg or 5mg is a daily dose for nerve repair, 20mg is a dose for getting an erection. You are currently a long way off from trying the 20mg dose or thinking about injections (and there are a lot of things to try in between).

Getting a vacuum pump on the NHS should be your next step; after your post-op review with the surgeon ask whether there is an ED clinic in your area and can the surgeon refer you. With a bit of luck, the CCG where you live has approved the prescribing of vacuum pumps.

Have you applied for your prescription charges exemption certificate?

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

User

Posted 20 Jan 2019 at 17:33

Hi LynEyre,

Thanks for the reply.

I'm in India at the moment and there is no Penile Rehab Clinic here.

Thanks for the NICE guidelines, wasn't aware of it. I've ordered a pump (hydro pump by Bathmate, as that was the only one available in India), but as you had mentioned it would be best to wait for 6 weeks before starting it.

In these videos they mentioned that when using the pump it's the blood from the veins that flows into the penis instead of new oxygen rich blood from the arteries, so the pump is not of much use.

Unfortunately, I don't have any resource here in India to go to and the timelines (how quickly one has to act) that these doctor's have mentioned, hence was concerned.

Thanks very much.

- V

User

Posted 20 Jan 2019 at 18:22

Sorry, I forgot that you were overseas.

Video is good but I am disappointed by some of his comments - he may not be a big fan of the pump but does rather talk as if tablets & injections are available to all and work for everyone. He doesn't really address atrophy either. The pump may draw venous blood rather than arterial blood but it is better than no blood and there are plenty of men on here to give testament to its value in keeping your bits healthy.

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

User

Posted 21 Jan 2019 at 04:06

I'll start using the pump on the 6 weeks mark.

I'm be in the US in March and will meet a penile rehab doctor then.

Does it matter taking the daily Cialis 5 mg at night as compared to taking it in the morning?

User

Posted 05 Feb 2019 at 11:19

1 month Post-Surgery

12 days after my surgery my PSA was down to 0.67, the doctor said it will go down further. My next checkup is on March 26.

It's been a month today since I had my surgery. Yesterday was my 1st meeting with my doctor after my catheter and staples were removed. The doctor said he was happy to see the healing (incision points) and the overall recovery. All my initial issues have gone including the blood clots and sediments that took a while and also the UTI which finally seems to be almost taken care of.

Incontinence is significantly better, primarily when I've had tea and/or lots of water. But I do not get the same sensation to urinate as before, I feel tightness or full in my penis and that's an indicator for me to go - has anyone else experienced this loss. I was watching a video on YouTube ' To leak or not to leak', in which the physiotherapist mentions that in the first few weeks/months it is a possibility.

The doctor started me on Cialis 5mg 3 days after surgery.

No masturbation for 8 weeks to 3 months from the date of surgery.

No alcohol either. Another Dr. recommended to start using the pump at 8 weeks.

No exercise (lifting weights) or yoga and/or deep breathing for 3 months. Only walking.

Good thing is I can travel and regaining my confidence to manage the incontinence.

Thanks to everyone in this group for your support and advice.

- V

User

Posted 05 Feb 2019 at 11:25

All sounds OK

User

Posted 05 Feb 2019 at 11:41

I had the same issues with altered bladder sensation. It was more discomfort than a feeling of a need to urinate.

This has gradually improved since my op' in October and is much better...but not exactly as it was preop'

User

Posted 05 Feb 2019 at 15:37

Lyn, your in box is full!

I think you need to watch your comments about doses. Our surgeon prescribed before and after surgery Cialis 20mg with nerve sparing robotic prostatectomy. Now 14 days since op and my husband is doing really well in bathroom and bedroom departments on the 20mg on alternate days. That's what our urology department considers a therapeutic dose. They are a University Hospital and we have a few leading lights in the US at our hospital. Your posts are brilliant and helpful but to say someone is "way off the 20 mg" is not in our humble experience appropriate and a little misleading. Keep up the fabulous work, we are indebted to the site.

Brandy and Bill

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Things I should prepare, ask, know before Surgery

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