Staged sacral reflex, pudendal ultrasounds

[Violet M]

1) Why for the first 5-6 years I only had burning localized to the urethra during specific prostate/bladder activity and no oher sympotms like contracture, diffuse pelvic burnings that appeared much later...?
I can imagine improving symptoms like chronic pelvic contracture and diffuse pelvic burning but if remain the localized urethral burning during bladder and prostate activity it would be only a return to the conditions I had a few years ago where I was better but not enough for a satisfactory life quality (the urethral burning are sufficient to cancel my sexual-affective life).

2) There is an important pain centrlization? In this case nerve block or surgery can be insufficient anyway...

I can't answer these questions for sure, Gabriel, but I can tell you my own experience. Initially I had mild pain, mostly on one side, that lasted for over a year. The symptoms changed and got worse over time. Eventually my entire pelvis was a complete mess as the pain radiated and caused more muscles to go into spasm. I believe that I had centralized pain because I was so on edge that I would jump when the phone rang and I got to the point where I would not allow my husband to give me a "love pat" on the butt like he used to because just the slightest touch was painful.

I no longer have centralized pain. I rarely have urethral burning anymore. It took time for it to go away but slowly over time it faded. So I believe it is something you can recover from. The pudendal nerve innervates the urethral sphincter so if the pudendal nerve is irritated it can cause urethral burning. That is one symptom that has improved significantly for me.

I don't know what the answer is for you. What are the options besides nerve blocks that you can try at this point? I had temporary relief from nerve blocks. The first two at the ischial spine helped for several weeks. The last one helped for a few hours and then caused a bad pain flare-up for about a month. I guess they help some people long-term and if you are considering surgery you have to try them but please don't get too discouraged if nerve blocks don't help because they often are not a miracle cure.

Violet

[Gabriel81]

Thanks for your usual timely response Violet, I'm discouraged because I feel that bloks doesn't work and surgery haven't good results in patient with long history like me.
I go on by inertia, because I think It is right but have to fight with depression every day...

[chenonceau]

I agree with Violet, the nerve blocks shouldn't be your last option. If you felt relief even for a brief moment of time, that means that the area targeted by the block is a place where there is pain is happening. You should discuss with de Bisschop (or others) about the eventuality of a surgery to get his opinion.

[Violet M]

Thanks for your usual timely response Violet, I'm discouraged because I feel that bloks doesn't work and surgery haven't good results in patient with long history like me.
I go on by inertia, because I think It is right but have to fight with depression every day...

I understand your depression, Gabriel. I was very depressed too. There is no law or rule against being depressed. It's impossible not to be depressed when you are going through such a rough time but the important thing is that you don't let it get you down to the point where you give up. You still have some options you can try and reason to be hopeful that you can get better. You can read Ezer's posts and discover that he had severe pain for many years but he is cured now.

Violet

[Gabriel81]

Got second injection block. No appreciable improvement...
De Bisschop told me sugery will be indicated if no improvement will arise in next 45 days.

I would like to know if someone in this forum had exeperiences with De Bisschop surgery.
I try to acquire some info about results of his "balloon probe" technic (I don't know if he use other techincs).

[nonsequitur]

So for some doctors (Nantes), a successful nerve block is the criteria for having surgery. But then for other doctors apparently, a failed nerve block is the criteria to also have surgery.

This is so absurd. Pseudo science.
How can you trust any of them?

[Gabriel81]

In the first block I feel a little bit better, it was very little appreciable difference. In the second pratically no change...
I believe that instrumental diagnostic is more reliable in my specific case, this is only my opinion. I haven't pain at rest, only during some nerve stimulation like filling bludder, urination, ecc I have burnings that can vary in intensity.
At rest I have only muscle contraction and also in the past with Alcock canal injections I had problems to evaluate the effects...

When I report "De Bisschop told me sugery will be indicated if no improvement will arise in next 45 days" I mean that he try to avoid surgery if I can have benefit with only injections but if the second injections doesn't work in this period of time we have to go on surgery...

I'm not so sure of what surgery can do for me but I believe in the objectivity of instrumental diagnostic although I know that much depends on the operator's interpretative ability...

[nonsequitur]

gabriel,

How did your pain start 12 years ago? Stress or accident? Or both?
I read the French forum and frankly I have not seen great cures reported by Dr. De Bisschop's patients.

[Gabriel81]

There wasn't a clear cause, it start as a urination pain without a reason 13 year ago...

I read something in "Worldwide - France" section and now I'm more confused then before because I have the problem to choose if to continue with De Bisschop or search a more expenrienced surgeon as Robert, Bautrant, Beco or Aszmann (I know that he know more then one thecnique).

[Violet M]

Gabriel, it's a huge decision to make. I think you would be wise to get a second opinion if you can.

Violet