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Drinking More H2O Only Exacerbates My Incontinence

E2-Guy profile image
25 Replies

Since the increased H2O consumption has not helped, I am wondering if any of you are having success with Sling surgery? I know that the AUS is the preferred procedure; however, Medicare pays for nothing outside of The States which is a problem for me. I understand that the Sling is a much simpler and less expensive operation. Even though I am still alive and feeling good 17 years post RP, (BCF 8 years ago) I often wonder if I should have chosen a different procedure such as brachytherapy?

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E2-Guy
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25 Replies
London441 profile image
London441

How severe is your incontinence? This is a key factor.

E2-Guy profile image
E2-Guy in reply toLondon441

Quite severe during the day...no problem during the night. I can sleep for six to seven hours without wetting my paper towel configuration.

London441 profile image
London441 in reply toE2-Guy

I alsohad no problem at night at any point, but daytime there was close to no control. This is common in those with extreme incontinence post RP. No improvement for 20 months despite dedicated efforts.

The sling was not recommended as my case was pretty extreme. I got the AUS and am quite happy with it.

Has it been this severe for all the 17 years since your surgery?

E2-Guy profile image
E2-Guy in reply toLondon441

London, Thank you for your replies. My incontinence started about 12 years post RP. Prior to that time I rarely had any leakage; just an occasional drop or two when I was squatting on the floor working on something.

I read through your posts and noticed that your last one was 9 months ago. In one of your posts you had inquired about the use of E2 as an alternative to the nasty ADT drugs. I have been using tE2 as mono-therapy for 3 1/2 years now and I am absolutely thrilled with the results. Richard Wassersug has been using it for over 20 years and still has an undetectable PSA. My 2021 PSAs have been 0.003 with ONLY little boobs as a side effect. Even my ALP which was above the max high level has gone back down into the low 80s. I view it as a 'miracle hormone'! Are you currently on any ADT drugs? If you are, I strongly urge you to try tE2.

I'm happy to hear that the AUS is working well for you. If I ever come back to the USA I will probably have it installed; however, after living in Thailand for 17 years I dread ever returning to what 'was' the greatest country in the world! Even a young girl can walk anywhere in our city at 02:00 and never even think about looking behind her.

London441 profile image
London441

Thanks. I don’t remember actually inquiring about E2 for myself but I could be wrong. Certainly I’m familiar with it, have met Wassersug and am happy for you to have found success with it.

While the decline of the US can be debated, there’s little doubt it’s much easier to get your estradiol elsewhere so there’s that!

I am off all drugs following a post RP aggressive clinical trial of ADT, chemotherapy, abiraterone and radiation. Last Eligard shot was in September of ‘20. Testosterone is now 500-750, PSA undetectable. So far so good.

If your continence worsens and/or is unrelenting consider the AUS, it’s admittedly another surgery but it’s great. Hopefully you have a good urologist at a center of excellence to guide you on this.

E2-Guy profile image
E2-Guy in reply toLondon441

London441•2 years ago•53 Replies

"I seek the experience (and even the opinion!) of the hive mind on this:

I hear and read occasionally about oestradiol as being equivalent to LHRH agonists for testosterone suppression minus some of the famous nasty side effects.

My instinct is that it’s too good to be true but I’m keeping an open mind. 14 months of Lupron to go and quite naturally such an alternative is pretty sexy. Thanks!"

London441 profile image
London441

Well there it is. You know I can’t remember being so curious about it but I guess I was….I think what happened is a combination of getting used to the Lupron and discovering how difficult the estradiol was to get where I live.

My vague recollection was after briefly seeking alternatives I just decided to power through the s**t and it worked out lol

E2-Guy profile image
E2-Guy in reply toLondon441

I can send you some E2 gel from Thailand.

Like clear toothpaste
Muffin2019 profile image
Muffin2019

I stop drinking fluids around 11 pm, about 3 hours before going to bed, last night I was taking fluids till I went to bed. I was making about 4 trips before actually getting up at 8:30 am. I am on fli max, 2 pills and I take one at midnight then at noon the next day. Maximum sleep is 5 to 6 hours.

E2-Guy profile image
E2-Guy in reply toMuffin2019

Apparently you have the opposite problem...not being able to fully empty your bladder. I assume you have BPH? My bladder automatically empties itself all day long, but behaves normally during the night. I should have been born a female; no prostate to deal with!

Muffin2019 profile image
Muffin2019 in reply toE2-Guy

Yes you are right it is BPH, I relax at night so have to stop drinking earlier, getting old is not fun in that respect. I usto take the full dose of Flomax then went to bed but that was worse so I adjusted the time of dosage. It works about 3 hours after taking it then tapers off, the doctor said to take it before bed in case it made me dizzy which it never did.

Miket218 profile image
Miket218

My strong advice, if you have severe incontinence, is stay away from that sling procedure. I made the mistake of having one put in I lost an inch of penis legth and had very little improvement in my incontinence. I had an AUS put in and I’m very pleased with it. By the way, the sling cannot be removed because of tissue in growth. Choose carefully and wisely.

E2-Guy profile image
E2-Guy in reply toMiket218

Thanks Mike for your input. Losing "an inch of length" from my worthless, pathetic, little thing wouldn't be a big deal; however, the procedure failure that you (and others) have experienced is enough to keep me from even considering it!

kaptank profile image
kaptank

I have had both sling and AUS. The sling was worse than useless. AVOID.

E2-Guy profile image
E2-Guy in reply tokaptank

WOW...thanks for the depressing info! I guess I'll just continue using my condom and bag getup!

kaptank profile image
kaptank in reply toE2-Guy

External (condom) catheters are cool.

E2-Guy profile image
E2-Guy in reply tokaptank

I actually have very little leakage while wearing the condom/bag doohickey. It must be that the condom is exerting a little pressure on my urethrae preventing some of the leakage. After wearing it for a few hours I usually find just a couple of drops of urine in the bag.

j-o-h-n profile image
j-o-h-n

The only problem I have at night is when I sleep standing up.........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/07/2021 7:17 PM EST

E2-Guy profile image
E2-Guy in reply toj-o-h-n

Obviously gravity is the problem!

j-o-h-n profile image
j-o-h-n in reply toE2-Guy

Yep, I must admit I didn't understand the gravity of the situation.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/08/2021 6:41 PM EST

E2-Guy profile image
E2-Guy in reply toj-o-h-n

Definitely a grave situation!

j-o-h-n profile image
j-o-h-n in reply toE2-Guy

I dig that, I call a spade a spade...........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/09/2021 12:04 PM EST

julianc profile image
julianc

Hi I had a sling in 2017 with mixed results. I was mildly incontinent 1-2 pads a day, sling essentially fixed it. But now at times i have some irritation and retention. Flow rate was cut significantly. Not sure if I would do it again, or live with 1-2 pads or do AUS. I was attracted to sling due to minimal invasion and wanting to cycle. If you get it, I believe an adjustable version is now available. I think mine is on the tight side, which sorts the incontinence but causes the other side effects. Good luck.

E2-Guy profile image
E2-Guy in reply tojulianc

Julian, Thanks for the reply! Before you subject yourself to 'salvage RT', why don't you try using the tE2 gel that some of us are using? I am thrilled with the results...you can read some of my posts regarding my success. Living in the Uk you should be able to buy Oestrogel since it is made in France by Besins.

Like clear toothpaste
julianc profile image
julianc in reply toE2-Guy

Just seen this reply, thanks. I will bear this in mind when I need to ske a decision. It sounds a lot nicer than full ADT.

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