Not sure I'll feel normal again.

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Hello friends.
Trying to not give up on getting better.
Today i feel like i have to urinate frequently again.
Its not that bad just the tip feels like i do.
Thinking about going on oxybutanin and staying on .
I can't handle the coming and going
Of this.
My doctor still has no clue and urology
Can't give me a answer.
To be honest i believe its my back
Mainly my nerves in the l4-l5 and l5-s1
Or anxiety.
My prostate checks out as normal low psa at 0.53 last tested 2 weeks ago.

 

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I have CIDP in my L4 and L5 plus neuropathy over my entire body. It has effected my bladder so much that I have to wear diapers 24/7. My doctor is still trying to find a solution that will help me.

 

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Hi

I feel for you. And honestly the doctor for many people do not have any helpful answers. The meds have their side effects but the question becomes does the med help out enough on your bladder issues is one able to put up with the side effects

I am currently taking merbetriq and I think it is helping but who knows. I have neurogenic bladder from my ms. I still have frequent accidents and am almost contemplating switching to tape on briefs all the time as that I don’t really need to care anymore. It’s just better than having it create a large spot of urine when I was not wearing appropriate protection.

Stay positive.

 

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@Jwh51
Hi there.
What were your symptoms of ms?
If you don't mind.

 

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My ms symptoms have been the following in hindsight. ED problems in my mid 20, numb feet for 4-6 years. Started puking my guts out for an entire month. Told I have viral vertigo which kept dragging out. Eventually went for a private mri, could barely walk at this point and after my mri results came back as a severe disease progression as my brain lit up like a Christmas tree. Some docs after reviewing my mri that I would be unable to talk. Finally I decided to go to the hospital and was admitted and stayed for 6 nights. They treated me with high dose predisione for 5 days in a row. And then basically 3 months of recovery. However I regained all my walking. So I am pretty happy about that. Now I have my bladder issues along with ED. All things considered I feel pretty lucky.

 

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My ms symptoms have been the following in hindsight. ED problems in my mid 20, numb feet for 4-6 years. Started puking my guts out for an entire month. Told I have viral vertigo which kept dragging out. Eventually went for a private mri, could barely walk at this point and after my mri results came back as a severe disease progression as my brain lit up like a Christmas tree. Some docs after reviewing my mri that I would be unable to talk. Finally I decided to go to the hospital and was admitted and stayed for 6 nights. They treated me with high dose predisione for 5 days in a row. And then basically 3 months of recovery. However I regained all my walking. So I am pretty happy about that. Now I have my bladder issues along with ED. All things considered I feel pretty lucky.

 

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Some of us are luckier than others, and maybe we don't hear from those who get the problem solved, but the vast majority seem to get the "we don't know" out of their Docs. Or weasel-worded versions of that. Or pass-the-buck/blame-the-victim language (it's all in your head.) Look through this site for answers, causes, or clues to your problem - and for ways to cope. Ask around about a different, better Doctor. There are lots of different causes, it seems, and not all Docs look at them all, or we don't know how to tell them, or even what. Talk to the Nurse, ask what to tell the Doc so he won't lose interest or get impatient and give you the brush-off. If you find something here, bring it to your Doc, or even confront them.
You aren't alone.

 

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Iz, sorry you are having to go through what I call “The Dance”. It seems that often when it’s not clear cut, they just shuffle you off to the next guy if anything at all! When I recently went through the most recent problems with my spine, these doctors went to the point of me having to see a Psychiatrist to convince me that all of my pain was in my head and the tremors and loss of use of my right arm were all psychosomatic! Long story short I wrote a letter & called the President of the hospital, and believe it or not, after speaking to her assistant a few times, and gave them my history I had an appointment with the top neurologist and an MRI within a week! This is when they finally found the tumor after almost two years, in addition my spinal cord in my neck was crushed down to 2mm from normal 12mm at 3 different levels!
My point is don’t give up! Using protection is just being smart, but don’t let them shoo you away, too many Doctors are afraid to say I don’t know! Demand answers, this is your life, they go home to their life end of the day and too often don’t think about it again unless it’s continually thrown on their plate. Be a pain in the butt!
Good luck to you, there’s a bunch of great people here that would love to help, and we’ll be here sadly unlike many Doc’s these days...

P.S. Not a blanket statement, there are many great Docs and we are seeing it everyday now with Covid, you just need one of them on your side.

 

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Read your post in the email notice, and came back just to give you top honors, Sprung87. Many thanks. Your post should be required reading, on the NAFC site!
Lord, I hope they can eliminate that tumor. Keep us informed.
God be with you.

 

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well all I know is when I became incontinent I had to adjust to a new normal I wish you well and hope you're able to adjust to your life as you need too

 

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@Sprung87

Your post tells it like it is. I have degenerative arthritis in most of my spine, and particularly, for years, I've had bone on bone between L5-S1. Luckily I can live with the pain, which is probably considered moderate.

I am so sorry for the discovery of the tumor. Besides any spinal surgery having risky results, and horrid pain, you need to really investigate neurologists to the n'th degree to get the most capable and honest one. So many orthopedic surgeons are despicable, money-obsessed butchers. I had seen one specializing in spinal who wanted to cut me open from the abdomen; push all my organs to one side, and put some bone paste that MAY be successful in providing cushioning as an artificial disc. He also wanted to operate on my shoulders and hips. I went to one of his associates, who was honest. After looking at my MRI's, he told me they showed degenerative arthritis which surgery does little or nothing for. When he saw in my record that the other doctor had done injections, he asked me how much relief they had given me. I told him some, but it disappeared in a short amount of time, he told me he would never operate on my shoulders or hips, and just shook his head about what the other guy wanted to do. He said he would inject my shoulders anyway if I wanted, and then to let him know the effects on the phone in a month (no visit needed).

When I phone him, he said it only further confirmed what he suspected. He was a honest and competent doctor.

How did the neck portion of your spinal cord get crushed in 3 different discs? I guess I'm off topic, so perhaps you could provide a link to where you have posted about your maladies.

I had a huge benign prostate burned out 95% with a ThuLEP laser, and 4 months later, I am still leaking and dribbling urine. Kegels, kegels - what have they done? I get excuses that I need to keep doing them and when it becomes 'safe" to pursue this further, I should start with physical therapy who supposedly can teach me more extensive pelvic floor exercises.

But, I fear damage was done to the internal bladder sphincter nerves, after I did extensive research in the medical literature. But, I'm trying to keep some faith that this incontinence (would you call it "partial" or not?) can "heal" without sling surgery, which I simply will never agree to have.

Yes, be a "pain in the butt". Otherwise, you won't get proper care.

 

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Hello Izthewiz. Just wondering is your only issue is the feeling of urgency and having to go all the time? How much do you void each time? I'm trying to see if we have similar problems. The urgency is my only problem and I only get out about 3 to 4 ounces.

 

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@DEBEECHER
I measured and its about
4-8 oz on average

 

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Gentlemen, I’m a 44-year-old female. I’d like to offer some comfort, if it helps. Very few guys will talk about it, but ED is prevalent in most men after age 40 - even without bladder/prostate problems. It’s part of normal, natural aging. It sucks for both men and women. But it’s just life. I know it’s worse with bladder problems, but I just wanted to let you know, you’re not alone among “normal” men. Hugs!

 

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@AlasSouth
Amen to that Atlas!

 

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Snow is right, ED is really pretty common but for the majority of men it can be treated. Diabetes and some of the meds I take have screwed me up in that area too. If viagra or levitra aren’t doing what the should my urologist office came up with an injection formula that is amazing. It is specifically made for their practice and you inject it with a very small diabetic needle into the side of the penis. Guys, no joke, best erection I have had in my life. It’s a sensitive issue for guys, it took me years as the ED slowly got worse. Felt less than a man and honestly just wanted to keep my honey happy. Don’t have to worry about that anymore and I am so thankful for that.
The Urology team I go to is not far from Baltimore, Maryland. Chesapeake Urology. Their entire staff has been such a blessing to me and a ton of other people of All ages.
Please check out their website. Dr. Shapiro is a wonderful urologist and Dr. Benjamin Cohen fixed my ED problem in one short visit. Thanks for letting me share. Hope for some these amazing Dr’s can help you too.

Take care, and Happy Mother’s Day to all the Amazing Mom’s!!!

Jim in Maryland

 

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It seems to be that Urologists, from a male point of view, just know how to deal with prostate problems. Once it gets beyond that, they start guessing.

 

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Amen

It seems to be that Urologists, from a male point of view, just know how to deal with prostate problems. Once it gets beyond that, they start guessing.

 

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@Jwh51

So sorry about your plight with MS and what you have gone through and go through. Did/do you have viral vertigo?

Maybe I'm wrong, but it sounds like you had some half-baked doctors who didn't have the expertise to tell you things they did. It sounds like you now have 3 months to get to a much better point.

Will be thinking of you...

 

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Hello friends.
Trying to not give up on getting better.
Today i feel like i have to urinate frequently again.
Its not that bad just the tip feels like i do.
Thinking about going on oxybutanin and staying on .
I can't handle the coming and going
Of this.
My doctor still has no clue and urology
Can't give me a answer.
To be honest i believe its my back
Mainly my nerves in the l4-l5 and l5-s1
Or anxiety.
My prostate checks out as normal low psa at 0.53 last tested 2 weeks ago.

Hello there,

I am sorry for your problems. I wanted to find out more, as you obviously started or participated in another topic, but I don't know how to find the other posts from a person. Perhaps you could direct me.

Try to calm yourself. You are very stressed out and have heavy anxiety. I can relate, as I am over-reactive and have anxiety for many years, before I had my prostate laser burn-out, which I am still anxious and upset over, because of leakage and dribbling upon even no movoement, but especially with bending or reaching to the sides.

It takes time after prostate surgery (I'm assuming that is what you had). I've lived with degenerative disc disease (ostheoarthritis for over 30 years. The L4-L5 and L5-S1 are very common vertebrae to degenerate and can go to basically bone on bone, with no cartilage left. I am lucky in that I don't have really heavy pain, more like heavy aches. I find sretching helps. It is a little hard to learn how to do this technique I dreamed up, but you get a medium size basketball and a small basket ball. You then have to balance yourself, with your feet on the floor and your knees bent, over the large ball, and the put the small ball under the crook of your neck, or even under the back of your skull.

You then roll slightly forward and backwards on the ball, and feel your way into that L5-S1 area to open it up. It really works and gives relief. However, with your prostate, you'll probably want to wait some time, or just give it a try now. If you find it too difficult if it affects your bladder and continence more, just try it periodically as your symptoms improve. God be with you, and thinking of you and others.