ED therapy/ pump

DougW
DougW Member Posts: 12
edited March 2014 in Prostate Cancer #1
Hi,
I had a nerve sparing radical prostatectomy about 1 1/2 years ago. I am now 41. After the surgery my doctor told me that there were at least 3 options to deal with erectile dysfunction; the pump, injections, and oral meds. He started me on a low dose of viagra because he said that has been shown to increase the likelihood of being able to achiece an erection in the future. My wife asked about the pump, and I thought he said that it would help me to achieve an erection in order to have sex. I am pretty certain that the doc said there was no evidence that using the pump along with the low dose of viagra was superior to the low dose of viagra alone in terms of being able to achieve erections in the future.
My wife remembers things differently.

I have had some success with the injections, but have yet to achieve an erection without them. I have never tried the pump. My wife recently told me that she feels that this is largely my own fault because I did not use the pump during the first few months after surgery. She says I was very selfish and didn't think of her because I didn't use the pump. She is angry and is basically blaming me for not being able to achieve an erection.
I have a call into the doctor, but he will be out of town for a couple of weeks. Does anyone have any experience or information on this?
Thanks,
Doug

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Practice a lot and that “will” may come the soonest
    Hi Doug
    I did use the pump initially not only for erections but to avoid penis atrophy. The portion of the urethra in the prostate cut off will shorten the penis.
    After my surgery I choose VED (pump) and used V but nothing was very tempting as it would be at the wrong timing or the procedure would turn both of us off. Luckily (?), and for my surprise, 4 months after RP I start to experience a sort of natural erection (pointing to the 4 o’clock mark more than to the 2 o’clock) which was quite enjoyable but without the ejaculation process. My doctor told me that it is not exceptional to see cases, where an individual’s nerve system starts using different nerve path to send down the signals (the will power). This sensation can take years to be reestablished, so do practice a lot and that “will” may come the soonest to surprise you.

    There is a forum (WWW. franktalk.org) dedicated exclusively to ED cases.
    There is a book named "Saving Your Sex Life (J Mulhall)” were the author mentions about the value of our partners to reach that “willing” without tools. SMKCC has lanced a video with regards to ED and PCa at; http://www.mskcc.org/mskcc/html/94910.cfm

    Wishing you long pointed awaked nights.
    VGama
  • robmartin
    robmartin Member Posts: 1
    ED - Vacuum Therapy
    Hi Doug,

    I had my surgery in Jul 1999. The doctor said he left the nerves on one side and I should be able to achieve erections aftewards. It's now 11 years later and I still haven't had an erection, without the aid of a vacuum pump. None of the oral med's did anything. Injections did work but too much trouble, too expensive.. I tried them for about 3 months and quit.

    My first pump broke after about 6 years of service and I never replaced it. I was tired of the whole preparation part of using one. At first my wife helped and it made it fun in a way. Now she has pretty bad issues with arthritis in her hips and knee joints, so sex isn't in demand too much around here anymore. To make matters worse, my libido is stronger now then when I was 21... maybe because so much time passes between "relief" opportunities. I just got a new EREC-AID pump and have been using it in the break in mode. No sex.. no constriction bands.. just pump up SLOW for a short time, each day, to get those veins and cells, trained again for erection. It is so true, USE IT or LOSE IT...

    I have some issue with venous leakage, so even with a constriction ring on, I tend to lose some of the erection before I should. BUT, it is functional for sex.

    I was lucky that my wife has never blamed me for any of this. She has been good support for me. I was the one feeling guilty for not taking care of her needs, in spite of mine. If you know what I mean.

    Anyway, long story short, the pump does WORK. It is NOT perfect, you gotta PLAN ahead.. but you can have a good erection, if you don't have leakage, it will last as long as the band is left on, which they all say NEVER leave it on longer than 30 minutes.

    By the way, my health insurance paid 100% of the cost. I should be ready for sex again in a few weeks.. I sure hope so. Nobody can know how empty it leaves you, until you can't do it anymore. I still get angry over all this happening to me, if I let myself - but I try not to. I'm still alive, but I have to admit, some days I wonder WHY? But overall I keep a positive attitude and enjoy my grandkids and family events.

    Let me know if you have any questions at all... I'll be honest and answer ANYTHING you want to know.

    Good luck,

    Rob
  • Klemon
    Klemon Member Posts: 26
    Vacuum
    Hi Doug
    My husband 64- had the robotic nerve sparing surgery in July 10 at Mayo.
    He started having some moderate ED prior to surgery ..that seemed to be as result of all of the biopsies. He was taking Levitra with 100% success April-until surgery in July. Post surgery,,startng the day the catheter came out...we did "something" manual, oral or whatever every day. He was taking once a day Cialis as well. He was able to gain more and more sensation each day, but not enough of an erection (about 20%) for intercourse, although he could achieve orgasm.
    At the 30 day mark, the urologist/surgeon switched him to 36 hour Cialis and told him to try to vacuum pump. We have had 100% success with the combination, and his spontaneous erection ability, and sensation during intercourse improves each week. Surgeon advised him to achieve some sort of erection every day, even if he is not doing anything with it. I have been down with cold/flu for days, but he will "go vacuum" every couple days just for the physical therapy of it. We laugh about all the paraphernalia we use now to have sex, but I can tell you, the vacuum pump has been excellent in combination with the Cialis. (* recc you spend the $ and get the battery powered one as opposed to the manual one- about $80)... Talk to your doctor about Cialis -he had alot of side effects with Levitra (flushing, sleepness, stuffy nose).. none with Cialis. I recc you spend alot of time on foreplay before just vacuuming ...the closeness and intimacy helps,and its good to see what you can achieve on your own too. Have a sense of humor if you can. Drs all told us we can expect ongoing improvement up to 18 mos-2 yrs. You both need to be committed to doing "something" almost every day, Good luck :>)
  • lion1
    lion1 Member Posts: 241
    Klemon said:

    Vacuum
    Hi Doug
    My husband 64- had the robotic nerve sparing surgery in July 10 at Mayo.
    He started having some moderate ED prior to surgery ..that seemed to be as result of all of the biopsies. He was taking Levitra with 100% success April-until surgery in July. Post surgery,,startng the day the catheter came out...we did "something" manual, oral or whatever every day. He was taking once a day Cialis as well. He was able to gain more and more sensation each day, but not enough of an erection (about 20%) for intercourse, although he could achieve orgasm.
    At the 30 day mark, the urologist/surgeon switched him to 36 hour Cialis and told him to try to vacuum pump. We have had 100% success with the combination, and his spontaneous erection ability, and sensation during intercourse improves each week. Surgeon advised him to achieve some sort of erection every day, even if he is not doing anything with it. I have been down with cold/flu for days, but he will "go vacuum" every couple days just for the physical therapy of it. We laugh about all the paraphernalia we use now to have sex, but I can tell you, the vacuum pump has been excellent in combination with the Cialis. (* recc you spend the $ and get the battery powered one as opposed to the manual one- about $80)... Talk to your doctor about Cialis -he had alot of side effects with Levitra (flushing, sleepness, stuffy nose).. none with Cialis. I recc you spend alot of time on foreplay before just vacuuming ...the closeness and intimacy helps,and its good to see what you can achieve on your own too. Have a sense of humor if you can. Drs all told us we can expect ongoing improvement up to 18 mos-2 yrs. You both need to be committed to doing "something" almost every day, Good luck :>)

    Appreciation
    All,

    The posts here are really noteworthy, the honesty and determination that is needed in relationships after these health problems arise are so important. These posts are so real, positive, and very descriptive in what really happens and has to happen to get back to
    any kind og normalcy. I was really touched by you all giving such an honest and supportive advice. I know about spontaniety issues and I continue to experience them. But, the human spirit endures to just keep trying and getting back to the best you can be drives us all.

    And so does Love.

    Just another note---foreplay is so important, because getting an erection in record time---just doesn't happen any more.

    Much Appreciated,

    Lion1
  • mattmans5
    mattmans5 Member Posts: 70
    lion1 said:

    Appreciation
    All,

    The posts here are really noteworthy, the honesty and determination that is needed in relationships after these health problems arise are so important. These posts are so real, positive, and very descriptive in what really happens and has to happen to get back to
    any kind og normalcy. I was really touched by you all giving such an honest and supportive advice. I know about spontaniety issues and I continue to experience them. But, the human spirit endures to just keep trying and getting back to the best you can be drives us all.

    And so does Love.

    Just another note---foreplay is so important, because getting an erection in record time---just doesn't happen any more.

    Much Appreciated,

    Lion1

    ed concerns,
    Thank you all for the honest posts , I had my catherer out for two days and I have pain while urinating . I did take break a 100 mg viagra as directed into 25 % .

    I am a little anxious and wondering about the pain , that I seem to have with any sort of urinary or bowel movement . is this common and if so is is the no pain no gain attitude that I have to adapt to , I do understand the use it or lose it , I am feeling a little better every day and hope that this is just post operative pain , and will pass . I am wondering about sex and erections, if posssible does the pain get in the way of a pleasuable experience ?

    thanks joe
  • lewvino
    lewvino Member Posts: 1,010
    mattmans5 said:

    ed concerns,
    Thank you all for the honest posts , I had my catherer out for two days and I have pain while urinating . I did take break a 100 mg viagra as directed into 25 % .

    I am a little anxious and wondering about the pain , that I seem to have with any sort of urinary or bowel movement . is this common and if so is is the no pain no gain attitude that I have to adapt to , I do understand the use it or lose it , I am feeling a little better every day and hope that this is just post operative pain , and will pass . I am wondering about sex and erections, if posssible does the pain get in the way of a pleasuable experience ?

    thanks joe

    You will have pain for a few
    You will have pain for a few days while urinating. It gets better and will go away. If not talk to your doctor in case of infection.

    Sex and erections-you should not have any pain then. I'm at 18 months post davinci and sex is great with the little magic pills called lavitra.

    Larry
  • mattmans5
    mattmans5 Member Posts: 70
    lewvino said:

    You will have pain for a few
    You will have pain for a few days while urinating. It gets better and will go away. If not talk to your doctor in case of infection.

    Sex and erections-you should not have any pain then. I'm at 18 months post davinci and sex is great with the little magic pills called lavitra.

    Larry

    Thanks Larry,
    I am

    Thanks Larry,


    I am getting used to all the post - op issues that I guess most of us go through , I am encouraged by the posts by all the brothers , It is a welcome sourse of info , and it does wonders to have someone who has been down this road already give me the heads up

    I am looking at the snow falling ... New York is having a busy year with the shovels .

    joe
  • shubbysr
    shubbysr Member Posts: 87
    Patience, my dear
    Hey Doug,

    I can relate to your ED situations. I too, have been told there are different ways to regain function. My wife and I scored very high on the pre-surgery sex questionairre. Well, almost 2 years post, no erections, I am not giving up and my wife is being patient as well. My urologist at John Hopkins left his practice and went to work for the FDA. I am now looking for a urologist here in South Carolina that may have some up-to-date information. So far the average age of local urologist is > 65, and they have "old school" thoughts on treating ED.
    Don't give up Doug because I haven't and we are all behind you!!!
  • chitown
    chitown Member Posts: 90 Member
    Patience and continued effort
    I am 49 now and had da vinci surgery last year. I was told by my doc 3 things determined post surgery ED recovery...along with the primary importance of patience and time.

    1. Age/health
    2. Pre-surgery sex life
    3. Commitment of the participating partner on recovery

    I took a aggressive approach to ED recovery using trying out all tabs for effectiveness, using trimix injection once a week and using pump couple of times a week. Patience was hard but I kept at it. Of all the tabs Viagra worked best for me, but that varies individually. Trimix at .15 got the job done well and reduced that dosage to less than .05 and stopped using it all together.stopped using pump after 6 month too. I feel lucky that at 7 months after surgery my sex life is back to presurgery level though need 100 mg Viagra for assistance. The doc feels in next 1 month I should reduces the dosage to 50 mg in 10 -12 months I should be fine without any medication. I found keeping the faith in recovery is also important. This has been my journey..hope it helps
  • subu1970
    subu1970 Member Posts: 13
    Consider MUSE
    I did not get along well with Viagra, Cialis or Levitra - they all gave me undesirable side
    effects like missed heart beats. Pump was a natural turn-off because of the relative pre-paredness required.
    I tried MUSE 500mcg. Although initally I was plain scared to insert anything, however
    thin or small into the small opening of the urethra, after one try I got confident.
    I had 90% erection without any of the side effects of the above referenced pills. Now,
    I am able to self-administer MUSE in a matter of less than 25 seconds and the results seem to be improving stll!
    Do ask your medical doctors if MUSE is right for you. Try googling for MUSE for more info.
    I guess a co-operative and understanding partner, and relaxation are pre-requisites for any ED therapy.
    The best to you. Have the confidence that you can do it.
  • rappa
    rappa Member Posts: 6
    subu1970 said:

    Consider MUSE
    I did not get along well with Viagra, Cialis or Levitra - they all gave me undesirable side
    effects like missed heart beats. Pump was a natural turn-off because of the relative pre-paredness required.
    I tried MUSE 500mcg. Although initally I was plain scared to insert anything, however
    thin or small into the small opening of the urethra, after one try I got confident.
    I had 90% erection without any of the side effects of the above referenced pills. Now,
    I am able to self-administer MUSE in a matter of less than 25 seconds and the results seem to be improving stll!
    Do ask your medical doctors if MUSE is right for you. Try googling for MUSE for more info.
    I guess a co-operative and understanding partner, and relaxation are pre-requisites for any ED therapy.
    The best to you. Have the confidence that you can do it.

    the pump and muse!

    Hi i am 64 but fit! had radical prosatectomy 2011 none nerve sparing all taken away! after 3 months surgeon put me on muse 1000m/grams, and, the pump, erections not bad but not good enough, so am using  2 insertions = 2000 m/grams muse then after 10minutes and foreplay pump it up, 2 rings put on and spectacular erection very good, really as big and hard as you want! wife very pleased and its given me a mental boost to ( get the old chap working again ) the surgeons words! any feed back on anybody using  2000m/grams of muse would love to hear your story! all the best from the united kingdom , a happy xmas and new year!