Looking for information

Hi kenneth1995 and barney34567,

Thank you for your comments, they are much appreciated. After reading your comments I realize I left out some information that might be relevant. Like everyone else the medical history is fairly complex.

I am 48 and finished with having children. I've been having grandchildren now, so the retro ejaculation is not that big of an issue to me. My hope would be that the sensations are unchanged, just without the mess. However, since I have never experienced this I really have no point of reference.

I have been dealing with the bladder issues and pain for 2 years now and it has become increasingly maddening with each passing day. For the first 6 - 8 months I was on a high dose of gabapentin, a moderate dose of baclofen, and a low dose of amitriptyline trying to deal with the problems of MS including the bladder pain. None of them seemed to help. In fact, I would argue that these medications made the problem worse by making me unable to pee leading to incredibly long hold times of 12+ hours. That was not fun. Now, after the dilation, I am able to pee every 3 to 6 hours very regularly, depending on how much fluid I take in. There is still a hesitation, but once it gets going it is a strong flow, but after sex it can take up to 12 hours to be able to pee. The bladder is constantly painful, like a spasm sensation that feels like I really have had to pee for 6 hours.

Obviously the best solution is to self catheterize. This is something I do not think I can do. I have been catheterized twice while conscious in an ER setting and, this have redefined my pain levels, this being the worst I have been through yet. Even comparable to when I broke my arm as a youth. So I am now comparing having to self catheterize to self torture multiple times a day. I am just not into doing either of those. I am sure there are those who will say that this is not that big of a deal, in their experience, but for me this was not the case.

I spoke with my urologist yesterday and he is gung-ho to do the green light laser surgery so he can do the Botox injections. I told him I wanted to put this on hold for the time being. I am still able to pee, it just takes up to 12 hours after having sex. I will say that being able to pee can be almost as orgasmic as sex at times. I do not want my condition getting worse with the surgery and Botox, but I am getting desperate for any kind of pain relief beyond a heated rice pack in my lap.

I picked up some AZO pain relief yesterday and I plan on giving this a try. I am just hoping this does not keep me from peeing, I really do not want to go through that again. Thanks for the URAL sachets recommendation too. If the AZO does not work, I will have to give that a try.

snekr

Hey Buddy

I'm sorry that you are having a problem. Did the urologist give you any guarantee that it would fix your problem. You could be having a procedure that you do not need with all the same problem left.

I'm 65 and just because I'm not having kids does not mean I want to give up anything. I feel that my ejaculation go with my orgasm. y Anytime you have your prostate cut at may change the sensations of your orgasm. You never know until it it down but by then it is to late. Some men will have no change but most have there orgasm cut to a third of what you have.

My self most of the time I do pee within 15 to 30 minutes but not all the time. This is the body's way of cleaning the pipes. Also why does your doctor want to do a procedure and then do the Botox in the bladder. Why not just have him do the Botox to see if that would help your bladder.

Right now being you are able to pee you should just relax and take it easy. You can always do the dilation again. Do you have a stricture.

See if he can give you something like Vesicare. It is a muscle relaxer and this would help you groin area. Please don't let the symptoms pick the procedure because once it's done it done. Don't give up

Ken

Hi kenneth1995,

Thanks again for the response, it is appreciated. The urologist thinks the surgery followed by the injections will fix or give a better, more desired result for me. His line of thought is to widen the urethra at the bladder neck, then after I have recovered, do the Botox injections to help with the bladder pain that I am in. Consequently the injections would help deal with the incontinence the surgery would cause. Of course, I would have to continue the injections as needed to help with the pain and incontinence for the rest of my life, if this works. If this does not work or produces an undesirable result...then...well, yeah. I am not aware of anything that can be done to correct that either.

He does not want to do just the injections without doing the surgery because that would shut everything down for however long it lasts. I would not be able to pee unless I self catheterize, and I really, really do not want to self catheterize or have a suprapubic catheter put in. To me this sounds wishy-washy and there are too many 'ifs' where something can go wrong or not as intended. I have not been able to find any information about this combo also, and it is a bit frightening. When he did the cystoscopy he noticed a narrowing and dilated it. I have recovered pretty good from that one, but what he is suggesting is much more different. How much of a narrowing he did not say and I keep forgetting to ask. He did tell me that everything else looked good. I have yet to see any of the pictures he took to see for myself.

As for the retrograde ejaculation, I really do not have any point of reference beyond my experience with Flomax which was not significant. I am not entirely convinced that Flomax did anything but make it difficult for me to swallow. I am inclined to agree with you that I do not want to give up any sensations of orgasm either. But, even that has changed because of the damage that MS did. Nothing is going to be what it was. Pick your battles I guess.

The prescriptions I have been on, so far have not done anything but cause more problems. I did try a half dose of the AZO pain control yesterday. I cannot really tell if it did anything but turn my urine this weird orange/red color, which looked a bit concerning. I did notice that I was having more difficulty peeing last night and into today, but I am not convinced that this is a result of taking the AZO. I might try the full dose later today if I can get my bladder to stabilize a little more. Maybe tomorrow. I have found that I need to be careful because taking something that actually anesthetize the bladder might keep me from peeing. And that concerns me about the injections as well.

Hey there my friend

I don't know how to phase this but I think you need to get your MS under control in order to fix the pain and the spasms in the bladder. Cutting up the prostate and giving you the injection I do not feel will fix the problem just make other problems.

Have you gone for a second opinion. You say that the doctor want to widen the bladder neck that will cause you leaking and incontinence and this would just cause you more problems Your trying to fix a problem not add more .

To me if it does not work you just had your prostate cut up and you will be in the same boat with more problems. You need to find something use that will help you. You are right there is nothing on the internet that will tell you anything about this combo because there are no trails on it. So I feel he want you to be a guinea pig

I would not do it. If you need to be opened up try the Urolift When I had mine the prostate size that could be done was up to 80 cc. Now it is up to a 100 cc It has been 7 years still open.

But I feel you need to get your MS under control and not have anything that would cause you more problem.

Do research on what every you decide. Get a second or even a third opinion

Take care....Ken

The one thing that strikes me from reading your post is the many meds you are on. It is possible that one or two may counter the effects of another med, so maybe by trial and error see which combination works best.

I would go to one med initially and then see the effect on pain and peeing when you add another med and again when you add another.

If peeing after sex takes a long time, I suggest you hold off on sex (or at least have less of it) as your body is telling you something.

Hey kenneth1955,

I appreciate your comments and insight. I went to my MS Neurologist this last week. She has never heard of these two procedures happening together like this, let alone for an MS patient. She feels this would likely lead to an undesired result for me. She does want me to go to the University's Urology dept. for a second opinion with a Uro-Neuro specialist to see if there is something everyone is missing or if there are better options available. I do not like having to undergo more testing or the time involved, but I do believe this is a better route to take. Who knows, they could find something that everyone has missed.

I am to start Ocrevus therapy for the MS next month. My MS Neuro. was telling me there is enough evidence out there to suggest that this therapy could help reverse a small amount of the damage done by the MS. Even some of the disability I have. Maybe go from walking with a cane or walker to not needing them. I am not counting on it, but I am hopeful that if it does, however small it may be, this could help make a difference for me.

On a side note, the AZO pain control did not work for me. Looking back over my experience, it caused more problems for me than it helped. My understanding was that it would help numb my bladder, but I found out that even that causes problems. I am going to call the pain management clinic and light a fire under their feet to get me in so I can get some kind of pain control for now. Something better and more efficient than a heated rice pack.

Hey barney34567,

I appreciate your comments and insight as well. I have been off virtually all medications for a year now. Originally (2019) the gabapentin, baclofen and amitriptyline were to help with pain and were not successful. These are first and second line medications for pain in MS patients. I agree that it is likely these caused more problems than they helped. I was also on an antihistamine (clemastine) as an experiment to help regrow myelin, and I think this was harmful as well. My primary doctor also put me on Flomax to help with the bladder, but it was highly suspect with new problems, in conjunction with everything else I was on. This is why I was taken off of everything. I was on Copaxone for about a month and a half and had to stop because the side effects were too much for my wife or me to deal with. The only medications I am still on now are two inhalers for asthma (something I still do not believe I have, but they do help) and vitamin D3. Maybe a few puffs of cannabis here and there. But even cannabis does not do what everyone seems to think it does. Some strains even make my bladder problems worse, as I have found out.

Sex is off the table, and has been for quite some time. My wife does not want to do anything that will cause me more problems or pain. And, while I agree with her on this, it can be frustrating for both of us. After the dilation, my Urologist told me I could do anything I wanted but I was skeptical. We tested things and discovered this problem. Sex is now a wishlist item for us. It sucks, but I think I like being able to pee more.

On another side note, it is looking more and more like I am going to have to do self-catheterization. I do not relish the thought considering how painful being catheterized has been in the past. I have done a lot of research on this, but I would find insight from people who have to do this to be helpful.

Buddy you need to do what is best for you. I'm glad that they stopped you from doing what that doctor wanted to do. It would cause more problem

Work on the MS and see what will happen

Good luck to you...Ken

I agree with snekr: do what's best for you.

As to self-catheterization, I cannot advise as I never did it.

As for sex, note while you say you don't have it due to pain etc, for those of us post surgery, post RT (twice) and post ADT (1 year), sex is "available" in theory.

After all, even if one can sense an "ejaculation", notwithstanding it's now what it was pre-surgery, how enjoyable do you think it is with a penis some 2 inches shorter and hard-to-get-rid of abdominal fat (thanks to the ADT).

So while you may "miss" sex, it's not like any sex would be a carbon copy of pre-treatment sex. It would be a poor substitute.

The only +ve I can see is that once one CAN have sex, however it pans out to be, is the psychological benefit it brings, as though one is closer to being normal, as it were.

Do not despair. Things may take longer to sort themselves out with some folk.