Unpredictable
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@Hbrownlow I have found that regardless of the physician or of his/her field of specialty, they all underestimate the severity of the recovery following surgeries. I think if they told us the entire truth, we would likely never get surgery, but sometimes we really do need it! I’ve learned the hard way to badger them with questions prior to surgery, and to actually look at the postoperative instructions before I choose to have the surgery. I also extensively research the surgeries online in advance.
I think that back doctors are the biggest liars. They act like if they do a “little” fusion (requiring a six month recovery!!!), that will take care of your problem forever. What they fail to mention is that two years later, you’re going to have to get another fusion and so on and so forth, leading to a lifetime of back surgery every couple of years. They don’t adequately discuss the risks of surgery leading to spinal osteoarthritis so severe that one develops spinal stenosis, which can grow to leave one paralyzed. So no matter what a back doctor tells me, I will never believe them. They guaranteed me that getting corticosteroid injections in my back wouldn’t hurt and would give me relief for up to five months, but instead those injections were one of the most painful things I’ve ever felt - way up there with a kidney stone, on the verge of passing out - because the lidocaine pre-injections didn’t work at all. I fell for that very expensive interventional radiology trick three times. I’ll never do it again unless my chronic back pain becomes far more severe and medications no longer help.
I remember before I had surgery on my broken foot 1.5 years ago, which involved getting pins and plates, my foot surgeon told me that I would be non-weight-bearing for six weeks, and then we would reevaluate. Well, he knew all along it would be at least three months of being non-weight-bearing, and it turned out to be 4.5 months, followed by a couple of months in a boot. That’s standard for foot surgery. Shame on me for not researching it in advance myself but it was an emergency situation.
When I had aggressive cancer throughout my reproductive region, my doctor made it out like the partial hysterectomy I was going to have was no big deal and would have no permanent affect on me other than prohibiting pregnancy (something I was fine with). Fortunately I *did* research that procedure in advance, which he had a cute little acronym for, making it sound like it wasn’t even a hysterectomy. I thus found out in advance that there was a serious chance I wouldn’t be able to have an orgasm again afterward. When I brought this up to him, he tried to brush it off by saying none of his clients had ever asked him that nor complained about that. I said, “That’s because this is conservative Mormon Utah, and most women here don’t know how to talk about their own sexuality like that and probably haven’t ever even had an orgasm!” I told him he really ought to warn women what they’re getting into with that procedure, to tell them the whole truth, but I doubt he ever has to this day. Even after I asked for the whole truth, he neglected to tell me that if there were cancer lesions on my vagina found during surgery, that he would remove part of my vagina. I wish I had known that in advance. Even with everything I’d read online in advance about how the procedure would change me, it was so much worse. He said the recovery would take six weeks; I had discharge pain and fluids for six months. I was stuffed with packing for weeks. They were so gross. He told me if we left my eggs that I wouldn’t experience Premature Menopause, which requires hormone therapy for the rest of your life or you’ll get other cancer. He neglected to tell me, and so did the articles online, that there was actually a 9% chance I would still go into Premature Menopause even if we left my eggs – which is exactly what happened, unfortunately. Imagine losing all of your hormones in your body instantly during a surgery. It’s one of the worst things I’ve ever experienced. I hate the expensive hormone therapy, and it doesn’t come close to doing what my real hormones did. Hormone therapy also has added risks of causing cancer. I definitely feel like less of a woman, like a eunuch, like I don’t even exist most days. That’s why I never, ever, EVER! want to see a male gynecologist again.
I’ve had two surgeries in each of my knees so far. I did have instant improvement after each of those surgeries, but the final one required I have my leg elevated above my heart for six weeks. My doctor told me it would only be 10 days. Just yesterday, I was in their office getting my quarterly corticosteroid injections in my knees. The hospital there has already given me a post-operative 1”-thick binder describing recovery because I said I wouldn’t get the surgery done unless I’d read the binder in advance, rather than afterward. Apparently the recovery’s going to be long, profound, and excruciating. The hospital even felt it necessary to include information about how to just get up out of bed!!! The information in the binder is written by the Director of Orthopedic Surgery at the hospital. He says that at six weeks you may be able to return to doing some computer work remotely but prior to that you’ll be so out of it because of the pain itself, the side effects of the pain medication, and how much sleep you’ll need, that you can’t go back to work before six weeks. It says you may be able to work remotely at six weeks for a few hours per day, and then at eight weeks return to work part time in the office. So yesterday I asked his PA about that first. The PA confirmed that the binder was correct. But then I asked my doctor about it, and he said “No, if you’re just working at a computer then you’ll be able to get some work done after two weeks.“ This goes against everything everybody who’s had the procedure has ever told me. My pain doctor has warned me the first two months after each replacement will be the most painful months of my life. She said the first two weeks will be the worst, but not to expect to work until after two months. And then, as I was leaving my knee surgeon’s office yesterday, I talked to his MA about it, because she prepares the FMLA leave paperwork for patients. I asked her how long to plan to be off work, and she said *12* weeks! So I got all of that conflicting information in just eight minutes yesterday! I’m going to plan for the worst. I’ve been talking about getting the replacements with them for 12 years. All of a sudden last year they told me I’d have to live on a ground floor, which I don’t. Now yesterday, they said I have to have somebody stay with me for at least the first week to be able to help me get in the shower, eat, distract me from the pain, learn stairs, etc. I don’t have anybody like that in my life. My mom takes care of my handicapped Dad; she may be able to come for 10 minutes each day but that’s it. A friend who I’ve known for 35 years, in addition to having traveled with his family, has a very sweet mother, who has offered to help, also - but likely not every day and night for a week!!! So now I’ve probably also got to save money in advance to be able to hire an aid from care.com to have in-home assistance because my insurance probably won’t cover it.
Anyway, the moral of the story is that we should definitely all be asking as many questions as possible before any surgery. Even then, we might not get the answers we need to be adequately prepared for recovery.
For the men who had a prostatectomy, I’m curious: how many of your physicians warned you of penile shrinkage in advance? I don’t understand why that happens but it must certainly be challenging to cope with, particularly if you’re young and not in an established relationship yet. I feel for all of you.
I think that back doctors are the biggest liars. They act like if they do a “little” fusion (requiring a six month recovery!!!), that will take care of your problem forever. What they fail to mention is that two years later, you’re going to have to get another fusion and so on and so forth, leading to a lifetime of back surgery every couple of years. They don’t adequately discuss the risks of surgery leading to spinal osteoarthritis so severe that one develops spinal stenosis, which can grow to leave one paralyzed. So no matter what a back doctor tells me, I will never believe them. They guaranteed me that getting corticosteroid injections in my back wouldn’t hurt and would give me relief for up to five months, but instead those injections were one of the most painful things I’ve ever felt - way up there with a kidney stone, on the verge of passing out - because the lidocaine pre-injections didn’t work at all. I fell for that very expensive interventional radiology trick three times. I’ll never do it again unless my chronic back pain becomes far more severe and medications no longer help.
I remember before I had surgery on my broken foot 1.5 years ago, which involved getting pins and plates, my foot surgeon told me that I would be non-weight-bearing for six weeks, and then we would reevaluate. Well, he knew all along it would be at least three months of being non-weight-bearing, and it turned out to be 4.5 months, followed by a couple of months in a boot. That’s standard for foot surgery. Shame on me for not researching it in advance myself but it was an emergency situation.
When I had aggressive cancer throughout my reproductive region, my doctor made it out like the partial hysterectomy I was going to have was no big deal and would have no permanent affect on me other than prohibiting pregnancy (something I was fine with). Fortunately I *did* research that procedure in advance, which he had a cute little acronym for, making it sound like it wasn’t even a hysterectomy. I thus found out in advance that there was a serious chance I wouldn’t be able to have an orgasm again afterward. When I brought this up to him, he tried to brush it off by saying none of his clients had ever asked him that nor complained about that. I said, “That’s because this is conservative Mormon Utah, and most women here don’t know how to talk about their own sexuality like that and probably haven’t ever even had an orgasm!” I told him he really ought to warn women what they’re getting into with that procedure, to tell them the whole truth, but I doubt he ever has to this day. Even after I asked for the whole truth, he neglected to tell me that if there were cancer lesions on my vagina found during surgery, that he would remove part of my vagina. I wish I had known that in advance. Even with everything I’d read online in advance about how the procedure would change me, it was so much worse. He said the recovery would take six weeks; I had discharge pain and fluids for six months. I was stuffed with packing for weeks. They were so gross. He told me if we left my eggs that I wouldn’t experience Premature Menopause, which requires hormone therapy for the rest of your life or you’ll get other cancer. He neglected to tell me, and so did the articles online, that there was actually a 9% chance I would still go into Premature Menopause even if we left my eggs – which is exactly what happened, unfortunately. Imagine losing all of your hormones in your body instantly during a surgery. It’s one of the worst things I’ve ever experienced. I hate the expensive hormone therapy, and it doesn’t come close to doing what my real hormones did. Hormone therapy also has added risks of causing cancer. I definitely feel like less of a woman, like a eunuch, like I don’t even exist most days. That’s why I never, ever, EVER! want to see a male gynecologist again.
I’ve had two surgeries in each of my knees so far. I did have instant improvement after each of those surgeries, but the final one required I have my leg elevated above my heart for six weeks. My doctor told me it would only be 10 days. Just yesterday, I was in their office getting my quarterly corticosteroid injections in my knees. The hospital there has already given me a post-operative 1”-thick binder describing recovery because I said I wouldn’t get the surgery done unless I’d read the binder in advance, rather than afterward. Apparently the recovery’s going to be long, profound, and excruciating. The hospital even felt it necessary to include information about how to just get up out of bed!!! The information in the binder is written by the Director of Orthopedic Surgery at the hospital. He says that at six weeks you may be able to return to doing some computer work remotely but prior to that you’ll be so out of it because of the pain itself, the side effects of the pain medication, and how much sleep you’ll need, that you can’t go back to work before six weeks. It says you may be able to work remotely at six weeks for a few hours per day, and then at eight weeks return to work part time in the office. So yesterday I asked his PA about that first. The PA confirmed that the binder was correct. But then I asked my doctor about it, and he said “No, if you’re just working at a computer then you’ll be able to get some work done after two weeks.“ This goes against everything everybody who’s had the procedure has ever told me. My pain doctor has warned me the first two months after each replacement will be the most painful months of my life. She said the first two weeks will be the worst, but not to expect to work until after two months. And then, as I was leaving my knee surgeon’s office yesterday, I talked to his MA about it, because she prepares the FMLA leave paperwork for patients. I asked her how long to plan to be off work, and she said *12* weeks! So I got all of that conflicting information in just eight minutes yesterday! I’m going to plan for the worst. I’ve been talking about getting the replacements with them for 12 years. All of a sudden last year they told me I’d have to live on a ground floor, which I don’t. Now yesterday, they said I have to have somebody stay with me for at least the first week to be able to help me get in the shower, eat, distract me from the pain, learn stairs, etc. I don’t have anybody like that in my life. My mom takes care of my handicapped Dad; she may be able to come for 10 minutes each day but that’s it. A friend who I’ve known for 35 years, in addition to having traveled with his family, has a very sweet mother, who has offered to help, also - but likely not every day and night for a week!!! So now I’ve probably also got to save money in advance to be able to hire an aid from care.com to have in-home assistance because my insurance probably won’t cover it.
Anyway, the moral of the story is that we should definitely all be asking as many questions as possible before any surgery. Even then, we might not get the answers we need to be adequately prepared for recovery.
For the men who had a prostatectomy, I’m curious: how many of your physicians warned you of penile shrinkage in advance? I don’t understand why that happens but it must certainly be challenging to cope with, particularly if you’re young and not in an established relationship yet. I feel for all of you.
Archives1
Staff member
No warning here for loss of penile inch. I was given a book to read - my wife & I consumed - that said nothing about loss of length. What it did do was use a supposedly real example of an unnamed guy in late 30’s with and after RP. He had a miraculous recovery in less than 3 months of both incontinence and erections. No complaints about shortened penis, so I had no idea. I was under the illusion that it wouldn’t be so bad. It wasn’t until this forum that it became clear. The 40 year difference between above youthful example and me was obvious and I attribute much of my difficulty to my elderly status.
Archives1
Staff member
Here is a link to one of many articles about Penis Shrinkage after prostate surgery.
www.menshealth.com
Here’s How Much Your Penis Can Shrink After Prostate Surgery
Good news is, it you’ll likely get your length back—eventually
Archives1
Staff member
I'm not hearing anything about the daily use of Penile Vacuum Pumps. Research it and get a grip on its strength and shortcomings. It is fast becoming the #1 treatment for Erectile Dysfunction. BUT THIS FORUM IS ABOUT THE PROBLEMS OF INCONTINENCE AND NOT ABOUT ITS TWIN MALADY: ED (erectile dysfunction). My prostatectomy brought incontinence and its twin: erectile dysfunction. Keeping dry and clean and keeping the skin on your body is certainly job #1.
Almost daily, for two years, I have used an ENCORE VACUUM PUMP. Sometimes with air, only. Sometimes with water. It's the Volkswagen on the car lot, but it gets you there at half (or less) the cost. The BATH MATE is more uptown and glamorous. But the ENCORE, using its hand pump does its work without fanfare.
The world of incontinence struggle is very much a private struggle, but one out of seven men will get Prostate Cancer and it's easier we know the names of the streets we must travel. Damaged nerves. Trying to escape wet clothes and shoes. I don't use the pump for fun or recreation. It helps keep the red blood flowing and helps keep the arteries clean of plaque and scar tissue. I mention it here to help raise awareness that there IS such a thing and yes...it works to help keep all the penile machinery working.
Almost daily, for two years, I have used an ENCORE VACUUM PUMP. Sometimes with air, only. Sometimes with water. It's the Volkswagen on the car lot, but it gets you there at half (or less) the cost. The BATH MATE is more uptown and glamorous. But the ENCORE, using its hand pump does its work without fanfare.
The world of incontinence struggle is very much a private struggle, but one out of seven men will get Prostate Cancer and it's easier we know the names of the streets we must travel. Damaged nerves. Trying to escape wet clothes and shoes. I don't use the pump for fun or recreation. It helps keep the red blood flowing and helps keep the arteries clean of plaque and scar tissue. I mention it here to help raise awareness that there IS such a thing and yes...it works to help keep all the penile machinery working.
Archives1
Staff member
I posted this link on another thread and it is a year newer. https://augustams.com/how-to-use-a-penis-pump-for-penis-exercise/ I am not telling anyone to do this just letting others know about this. Ask your urologist. It does a good job of explaining what is going on. Up to you if you want to let it happen or if you want to work on this also. Wish you all nothing but good things going forward.
Archives1
Staff member
For what it’s worth, even though I’m female, my doctors have told me something similar: use it or lose it. I’m supposed to insert estrogen cream every night in addition to the estrogen skin patch I wear, but it’s too messy to bother with. But I’ve been warned of the potential longterm consequences if I don’t use it, or don’t use, ahem, tools. I just want to forget about that part of my traitorous body and get on with life.
Archives1
Staff member
@snow Women do have a bit worse issues I think. My Sister and nieces have the reproductive cancer Gene. My sister has had all the surgery and my nieces have started it. With my brother it is just checking PSA and digital exams. I do not have it and have not ever had any problem. Low PSA and small prostate. But I really feel for me who have prostate cancer and then the surgery and other treatments cause incontinence and ED. And ED causes size loss. Talk about kicking a guy when he is down. Your history seems to have been much worse though. I get it that men are worried about cancer and incontinence and ED is a ways down the list also. Or maybe not. And maybe having something related to the cancer that can be treated with success is a good thing and will help them along. And maybe a year or longer when they are cancer free and have control of their incontinence or have beat it also the damage from ED will be done. Just seems like such an easy thing to avoid. Maybe I would feel differently had I gone through what they did or even some of what you went through. I had no intent to injure only to help. Sorry it brought up bad feelings for you.
A quick note on Utah. It is my favorite place in the world. Mostly the southern half. My favorite I guess would be from Bluff/Blanding (Comb Ridge) to Lake Powell. The west side of Lake Powell is a close second.
A quick note on Utah. It is my favorite place in the world. Mostly the southern half. My favorite I guess would be from Bluff/Blanding (Comb Ridge) to Lake Powell. The west side of Lake Powell is a close second.
Archives1
Staff member
@rmconversion No offense taken; we’re just all talking and doing what we can to help one another 
I appreciate the male perspective; it’s humbling to learn of anyone’s suffering.
I’m glad you enjoy UT. I agree that this state is geographically spectacular, easily one of the most gorgeous places on earth and incontestably the best snow on earth! I just have a hard time with the locals.
I appreciate the male perspective; it’s humbling to learn of anyone’s suffering. I’m glad you enjoy UT. I agree that this state is geographically spectacular, easily one of the most gorgeous places on earth and incontestably the best snow on earth! I just have a hard time with the locals.
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