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Prostate Cancer, back and hip pain and sexual dysfunction...Phew!

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Prostate Cancer
Do you still have ZERO libido years after Radiotherapy?
Never - 50.0% - 4 votes
Seldom - 0.0% - 0 votes
Sometimes - 25.0% - 2 votes
Often - 0.0% - 0 votes
All the time - 25.0% - 2 votes
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Posted 9/7/2011 6:01 PM (GMT 0)

Dear Members,

Please help me, if you can?

I live in a tiny village, in the most westerly part of Ireland, on the shores of the Atlantic Ocean. I am 52 years old, married, with 4 grown up children. I was treated for Prostate Cancer (Radiotherapy) 3 years ago, aged 49. Since then I have had ZERO sexual function, ZERO libido and chronic back and hip pain. I also pass blood (mixed with urine) regularly.

There is simply no forum to share with other sufferers in Ireland. It is so expensive to visit a specialist here. Even if I could, I have to get my babies through university first.

Any help or comments would be greatly appreciated. For starters what is wrong with me and these symptoms after 3 years?

Thanks Folks,

John.

Posted 9/7/2011 8:13 PM (GMT 0)
Welcome to the forum, John, and sorry you have to be here.

Your symptoms resemble those of advanced prostate cancer, but it could also be a kidney problem.

One low-cost test that you could have is a PSA test, if you haven't been having them already. Fairly low numbers, like under 3.0 would tend to rule out PCa.

I think the loss of sexual function and libido is to be expected. One of the known side effects of radiation is loss of sexual function. With loss of function comes loss of libido. If you can't do "it" as well as before, there is a loss of interest too ~ as I find in my case after surgery. In your case, you also have the chronic pain which must surely put a damper on any lustful thoughts.

However, your other symptoms are serious ones. If you haven't already done so, I suggest go see your family doctor, who might be able to tell where the blood is coming from, and may have some better idea of what is causing the pain. But I think that sooner rather than later, you will need to see a specialist, somehow.
Posted 9/7/2011 8:26 PM (GMT 0)
Dear Piano,

Simply to get a reply has done my heart good, thank you. I am so fearful right now of the cancer having "moved" or whatever. The back pain and hip pain is kinda serious.

Anyway,

Thank you very much,

John in Mayo, Ireland.

Posted 9/7/2011 8:49 PM (GMT 0)
Welcome, John.

HW always has the light on and the door open.

I tend to agree that the libido issue may be "because of" the ED and pain, rather than the RT directly. I'm almost two years out from surgery (not nerve-sparing), followed by RT, which leaves me with little choice but implants or shots, and I can agree that catching the girl isn't nearly as exciting now. But I'm not giving up. At 58 and single, I will not quit. Pity my big brain and little brain are not working together on this project.

However, chronic pain and blood in urine do sound like issues I would take to my family doctor without hesitation.

As piano mentioned - are you getting at least able to get annual PSA tests?

You might check as well with any large hospitals or teaching hospitals in your region to see if they have any screening or cancer support programs. I've found that once in a group like that, you hear much more about what is happening in the area.

Now I'm off to see where Mayo is ..

 

Posted 9/7/2011 9:10 PM (GMT 0)
Dear Moderator Type Person,

Already, I have found more solice here in one evening, than 3 years searching for support in Ireland. Thank you.

With regard to the "Libido" thing; they told me that at 49, the prognosis was good and the "it" thing would return with a vengence after 6 months! Three years on, I tried with my wife Mary (a deeply compassionate and empathic person). We both ended up in tears. She heading upstairs to bed and me, taking my dodgy back and sore hips to the downstairs batrooom, to pee blood!

I love life and family, but at this stage I am beyond depressed.

John, Mulranny Village, Wedtport, Co. Mayo
Posted 9/7/2011 9:22 PM (GMT 0)
I tried desperately to *********, without an erection. It took forever. I had a sensation of sorts, with no flow and with blood 10mns later. Surely it gets better than this after 3 years?
Posted 9/7/2011 9:46 PM (GMT 0)
I'll say that my treatment and yours are totally different to start with, but that said, if you received RT as a primary therapy, should should only expect a "dry" or perhaps "damp" orgasm. It is quite the different experience, and I've had it without the least hint of an erection (I'm not expected to have one, since the nerves are gone, but it doesn't stop me from trying).

And yes, the doctors told us all that things would get better quickly. We all think they lied. But yes, it takes time. And I think it is fair to say that working from no expectation is better. That way when something "wakes up" when least expected, it is good news, rather than a chain of failures when you try too hard.

You are going to be overwhelmed with responses from guys who have total ED here, and have to use one of what we call the "three P's" - Pumps, Pills, And Pricks (referring to the needle prick in your prick for an injection).

If it were me, I would give her a good hug, help her understand that it is no one's fault, and play the roles of a couple of teenagers trying to get away with something at the movie theatre, at least for tonight.

 

Posted 9/7/2011 9:59 PM (GMT 0)
Napper

A thought - maybe have your bride Mary look here especially at the ladies only forums. She may feel better knowing you two are not alone with this problem and that it is not her nor your fault. Its simply the Prostate Cancer getting in the way of you like.

One is

https://www.healingwell.com/community/default.aspx?f=35&m=1584686

Bud

PS Oh yeah - giving the wife a big hug is always a good thing, me and my bride will be celebrating our 38 wedding anniversary this year and we hug each other frequently - for no other reason than it sure is good to hold the one you love.
On 142's suggestion on playing roles of a couple of teenagers - I'll have to try that with my wife:)

(Updated link)

Post Edited By Moderator (142) : 9/7/2011 5:02:35 PM (GMT-6)

Posted 9/7/2011 10:12 PM (GMT 0)
Dear 142 Moderator,

Forgive me, I'm still not sure how all this works.

That was the best, most kindly, life-affirming and decent post ever!

Thank you for the hug/cuddle up, suggestion.

Love ya Man,
John, Mulranny, Co. Mayo, Ireland.
Posted 9/7/2011 11:47 PM (GMT 0)
Napper,
Since my non-nerve sparing surgery I have had complete ED. I've been using trimix injections that allow me to have an erection and normal sex. Can you get trimix in Ireland?
Posted 9/8/2011 4:00 AM (GMT 0)
Napper,

I agree with Ed C. about the Trimix injections. I lost both critical bundle of nerves during my surgery so I either have another surgery to have an implant put in or rely on penile injections with Trimix. I have had some success with it. The needle is the same size that a diabetic uses and the injection really isn't painful. I hope you can gain access to that. I am four months out of surgery and this fourth month has been a month of mourning my ability of not having an erection and have amazing sex with my wife.

Another question, do you know what your Testosterone level is? You may also be bless with low T that can be replaced with ointments, injections or patches. But you will have to watch you PSA closely if you go that route.

I agree with the others on getting in and get your PSA checked. My next door neighbor waited almost four years post surgery to have his first PSA checked and it was too late, PSA was 1500, and the cancer had metastasized. I will hope you are still cancer free, but don't hesitate getting in and getting it checked as soon as possible.

Best wishes to you on resolving all of your issues. This is a great group of men on this site so please visit often and report back to us what you have found out.
Posted 9/8/2011 4:19 AM (GMT 0)
 I also pass blood (mixed with urine) regularly.  

Napper (John), I am quite concerned about this as it is not a normal occurence.  I hope you will see a doctor or medical center a soon as possible.  Seems a PSA and exam is called for. 

Wishing you the best,

Aimzee

Posted 9/8/2011 6:39 AM (GMT 0)
John,
Welcome here
I tried posting a reply yesterday but the site wouldn't let me.
Anyway, firstly please don't ignore the bleeding and back ache. I'm no expert, but I agree with an earlier comment that this could be down to a kidney problem, even just an infection. So not nec essarily something for a specialist, your local GP might be able to help, can you talk to your GP on the phone perhaps as a start.

ED and libido issues are complex. My case doesn't seem to be typical mind you. I have had both surgery and SRT and can still get erections (takes a bit longer, but that is not a big deal) and my libido seems fine. On the other hand my brother-in-law just had RT and he has both ED and low libido.

Yes, this Forum can provide a lot of support, but I think you need qualified medical expertise to assess that bleeding and pain. Don't put it off.
I have kids, and yes you want to do the best for them, I still have one at university, but they quickly reach the point where without you realising it they are looking after themselves. Mine are concerned about my health and welfare now and I am sure yours are too. They most surely wouldn't want you to be in pain or bleeding, so at least talk to a doc, and soon.

All the best to you and your wife and family.

Alf

PS Like you I am on this side of the Atlantic where we have to get used to the time difference with regard to when most folk at the forum are active.
Posted 9/8/2011 8:46 AM (GMT 0)
John, I feel your pain, I have had ED since the RP 4 years ago, but I am nearly 71, so my wife and I can cope easily with that. I would get the passing of blood seen to ASAP, it could be serious, stay strong!

Mal.
Posted 9/8/2011 2:08 PM (GMT 0)

Welcome to you John.

I know you aren’t blessed with the NHS as we are here in England but is there no other form of health care support you can turn to that you can afford?  A cancer charity perhaps?  Surely there must be a way.  You need to find the cause of the chronic pain and the blood in your urine.

You really need to get this checked and now.  You say “Even if I could, I have to get my babies through university first” - John I expect your babies need their Da more than university!  You owe it to your wife and your children to make sure you are around for them for a very, very long time to come.

Regarding the ED, I can only imagine the emotional pain this is causing you and your wife, but frankly at the moment I think you have bigger fish to fry first.  Get the pain and blood checked then you can begin to deal with the ED.

 Perhaps a specialist is out of your reach financially at the moment but at least go speak with a GP, please.

Now go give your dear wife a hug, you are in this together, then seek medical advice!

Sending you a huge hug from Blighty and please keep us posted.

x

Posted 9/9/2011 12:05 AM (GMT 0)
Welcome to our little group John. We are an international group here with members from all over the world and the knowledge and experience base here is outstanding. All types of treatment and how we all handled it. First things first. Like "overthepond" says, their Da is more important to your kids ------ you can get a uni education at anytime but you have only one dad. Has your PSA been regularly checked since treatment. This is easily handled by your GP ------- no need to see a specialist to get this test. It is important that you find the cause of passing blood. It may be caused by radiation damage to the bladder or by a kidney problem but you need to find out. Lack of libido can be attributed to erection difficulties --------- that's going to get you down after a while. It could very easily be sheeted home to low testosterone levels which will impact your get up and go and all facets of libido. There are drugs that can help with this and usually generics are available to get around the high cost of the originals. Once we have had prostate cancer every little ache and pain makes us think "oh,oh". One of the most valuable things you can do is learn all you can about the disease and its treatments and after effects. It is not difficult. I'll wager many of the members here know more about prostate cancer than most GPs and that is not a reflection on those doctors ------- they cannot be expected to know everything about all diseases.
Take care and stay with us,
Bill
Posted 9/9/2011 3:39 PM (GMT 0)
Dear Bill, OverThePond, EnglishAlf, Dear All of You in Fact,

Thanks so much for the good advice and warm wishes. I have an appt with my GP tomorrow. The bleeding is not going away, although I have no pain with it. I will post tomorrow evening when I get back from Achill Island after seeing the Doc.

Take Care Friends,
Many Thanks,
John.
Posted 9/9/2011 3:44 PM (GMT 0)
Bless you John, well done!
Do let us know how it goes.
Posted 9/11/2011 7:32 PM (GMT 0)
Listen..And listen, all of you decent people,

I am so grateful for the support and warmth I have received here. Each and every contributor has been a revelation and has done my heart good.

May God in His infinite mercy and wisdom, send His Spirit to rest on your hearts and minds tonight. May the Peace of Christ, which is beyond all understanding be with you and yours (no matter what religion you are and I admire all religions and all peoples, equally, and non religious also with such love).

The upshot is, I won't be on this forum much longer. I have to tie up the lose ends and get "my affairs in order."

I love you all.

Think of me and people like me sometimes,
Good Bye,
John, In Mayo.
Posted 9/11/2011 7:57 PM (GMT 0)
John,

I do hope that you will update us as your last post sounded quite dire, and hopefully that is just your emotional state at this time and not your prognosis. None of your symptoms sound good, but the causes can be a variety of things. So if you get a chance we would love to hear again from our brother in beautiful Ireland.

Michael

Posted 9/13/2011 9:30 AM (GMT 0)
What dreadful, dreadful news and not at all the update we were hoping for.
Dear John,
Are you sure there are no further treatment options available to you? At least tell us that your GP is prescribing something to deal with the pain you are suffering.
May you find peace with the journey that has been chosen for you and draw strength from the love and support of your nearest and dearest at this difficult time.
Sending warm wishes to you John, your wife and family and all others around you who are being affected by this dreadful news.
Know you are in our thoughts and always here if you want to talk, rant or rave.
Bless you John.
x
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