New Symptom

[Christopher]

About 3 weeks ago I awoke to find that I had leaked stool into my bedclothes. It was the first time that had ever happened to me in 7+ years with PN. I also noticed over the next couple of days after that my anus felt more numb than usual, with a sort of cold/wet feeling. This is scary.

I have not been on the pudendal forums much in the last few years. I had surgery in 2004 down in Houston and after 6 months of improvement I plateaued and have not seen any improvement since. Although the surgery completely cured a number of my symptoms, my worst symptom remained--bad rectal pain on the left side. But it was tolerable as long as I had enough medication. So I set about trying to regain some semblance of a life.

Now I find that slipping away a bit. It's one thing to put up with pain that maintains a status quo. But when you start getting problems with bodily function... Whoa. That's a horse of a different color.

I visited this forum and the TIPNA forum over the last couple of days and noticed the posts on Dr. Potter's MRIs. That is very exciting and I tell you what, I am ***really*** interested in having that done. I have long believed that there is *something* still impinging on my pudendal nerve somewhere. To think that I could potentially find out what exactly is wrong--and thereby potentially set the sate for a surgical remedy--that really has my interest.

As I said, my pain is RECTAL. It would make sense, don't you think, that the rectal branch of the pudendal nerve is involved somehow.

I saw my pain mgmt doctor today and he wrote me a script for an MRI. I am going to call Dr. Potter's office tomorrow and schedule it.

Does anyone have any advice, thoughts, comments?

Thanks much.

C

[carolynm]

Where was the location of your entrepment before surgery in Houston?

c

[Violet M]

Hey Chris, sorry to see you back here -- sounds pretty scary what you are experiencing and I hope the 3T MRI will give you some valuable info. Definitely a good place to start since there aren't any side effects from an MRI.

Take care,

Violet

[Christopher]

Carolynn:

Dr. Ansell found that my pudendal nerve was most definitely entrapped between the sacrotuberous and sacrospinous ligaments. He repositioned the nerve and that cured most of my symptoms. Unfortunately, it did not cure my worst symptom--bad rectal pain on the left side. I had been concerned going into the surgery that that would happened, due to various signs that the situation was a bit more complex than just a simple entrapment. One of the biggest signs that I am referring to was the fact that I did not get much relief from the rectal pain when I had pudendal nerve blocks.

My theory then, and now, is that my nerve is being impinged upon at some other location besides the one that Dr. Ansell fixed. My guess--and it is just that, a guess--is that the rectal branch of the pudendal nerve is being compressed somewhere. I would love to get that MRI from Dr. Potter, but right now financially it's turning out to not be as feasible as I had hoped, at least not for me to call and make an immediate appointment in NYC.

Violet:
Thank you for your support! I have tried to carve out a life for myself in spite of the pain, and have had modest success in doing so. But this new symptom is scary, and what is worse is the pain that has come along with it--much worse than my "status quo normal" pain that I have dealt with for the last 7 years. Incontinence, while a hassle and absolutely something you wouldn't wish on anyone, can be coped with. But a LOT more pain is another issue. I am struggling with it.

In analyzing my situation I have come to believe that the problem is that my sacrum has rotated out of place and that is what is causing both the additional pain and the mild incontinence. This has happened 3-4 times in the last month. Each time (with so far the exception of the current one; it's out of place right now and really painful) it has slipped back into place in a day or two.

So what does that MEAN? Before I had the surgery I struggled with some fairly serious SI joint dysfunction issues. I was REALLY scared that the surgery was going to completely screw me up as far as pelvic stability, but I was so friggin' DESPERATE at the time, I went for it anyway. At the point at which I had surgery I felt like my life was circling the drain. I was getting worse and worse every month.

I had about 3-4 sessions of prolotherapy, 2 before and 2 after the surgery. That seemed to do the trick. My pelvic instability issues were mild--there, but tolerable. But now... I think that pelvic instability is what is causing the sacrum to slide in and out of place.

So what I am going to do is this: on Monday I am going to call a prolo doctor and schedule more prolotherapy. HOPEFULLY that will help strengthen what's left of my pelvic structure.

Which leads me to ask: can anyone recommend a good prolotherapy doctor in the central Florida area?

I keep telling myself that it isn't forever, that even if worst case I can't fix it, I am only going to have to deal with it for 20 or 30 years. I am in my early 50s. I don't have forever to live. Eventually I will die and leave this body--and pelvis--behind. And oh what a happy day that will be (for me, not for my loved ones left behind). That may sound morbid, but it's really not. I have an utter belief in the eternal nature of the soul. This is but a passing trouble.

Christopher

[Lernica]

Dear Christopher,

I'm sorry to hear that your troubles are continuing despite your surgery. I don't know you personally, but you posted so eloquently that I had to say "hi" and give you a virtual hug. We have all had the same thoughts that you have expressed in your last lines, to more or less degree.

I hope to "see" more of you on the forum.

[Christopher]

Thank you, Lernica, for your kind words. I feel for any and everyone who has this dismal condition.

I hope you find relief from your pain. May we ALL find that relief and find it SOON.

Christopher

[Violet M]

Christopher, I don't know if the Hesch method would be of any benefit to you since your ST ligament has been severed but one of our members, Hermajesty has posted about her experience getting into alignment using the Hesch method. It might be worth looking into. Jerry Hesch, the founder, is going to be one of the featured speakers at the upcoming IPPS conference. Hermajesty might be able to put you in touch with a provider in your area who uses the Hesch method.

[Christopher]

Thanks, Violet. I looked at his website and it has a wealth of information. I will investigate further...

[helenlegs 11]

Hi Christopher,
Good luck in finding someone who can help you and hopefully get rid of the pain you describe. Not much helpful advice to offer, sorry, just stopping to say hello.
Take care,
Helen

[JanetM]

Sorry to hear about your situation, Christopher. Have you had any updates since you've last posted? It sounds like you took the right steps though. Seeking a medical professional's advice is the best thing to do in this situation. I'm not sure where you live, but IU Health is a health care provider network in the Indiana area. Let us know if we can help in any way!