Health Organization for Pudendal Education

Sure Allie, PM me your phone # and I'll call ya.

Hugs,

Violet

Anyone has an update about Allie? it's been a long time now and i am worried!!

I haven't heard anything either and I'm a bit worried too.

Violet M wrote:I haven't heard anything either and I'm a bit worried too.

You ought to call her on the phone.

She never gave me her phone #.

Hello all my friends...

I am SORRY I haven't been on line...

Things are SPIRALLING out of control for me.

I now have a NEUROGENIC bladder. WHATEVER Dr. Westsson did, in that LAST nerve block was devestating.

So...since I have Interstitial Cystitis, and I FEEL like I have to urinate ALL the time, I now CANNOT urinate at ALL...I literally HAVE to go to the bathroom about every 10-15 minutes with "IC", and now, because I have a Neurogenic bladder, which is caused by either a Spinal Cord Disease (which I don't have) or, DISEASE or DAMAGE to the Peripheral nerves, I have it.

This was diagnosed right before Thanksgiving by my Uro. I did NOT have this last year...he did the SAME test on me, and, it was RULED OUT.

Having a Neurogenic bladder means that you CANNOT urninate. Having Interstitial Cystitis means that you HAVE to urinate ALL the time. Having BOTH these diseases together is my own little private Hell, let me tell you.

I also have EXCRUCIATING pain in BOTH buttocks that radiates down the hamstrings, and now, Bursitis on both hips, which, I do NOT think is related to that Nerve Block, but none the less, has kept me off the computer.

My skin, on the buttocks and my thighs also HURTS to the TOUCH...like someone is BURNING it...like the WORST sunburn you have EVER had. It HURTS to have CLOTHING touch it.

My condition has gotten WORSE daily, and, this Neurogenic Bladder and "IC" is a NIGHTMARE...I CANNOT keep living like this...it's NOT living. I lay on my couch, because I cannot sit...it HURTS too much (which is why I have not been on here) and just watch the day go by. I am TERRIFIED of drinking ANYTHING, but, alas, you kidney's NEVER stop producing urine, and, I can feel the SMALLEST amount in there..just 2 ounces.

My Mom's Brother died on Tuesday...I barely made it through the funeral Mass...I could NOT even stay for the full calling hours.

My quality of life has gone from a 7 to a 0.

Has ANYONE EVER gotten a Neurogenic Bladder from a Pudendal Nerve Block?

Dr. Westesson called Dr. Antolock on my behalf. Apparently, Dr. Antolock is semi-retired, but, he said the he PURPOSELY tried to HIT the pudendal nerve during a Nerve Block. I don't know WHAT happened to me, but I did NOT have ANY of these symptoms BEFORE my block, and NONE of them are improving AT ALL.

ANY and ALL feedback would be welcome.

Thanks to ALL of you who wrote and were concerned...I am so sorry I was not on here...I just am so very sick...I am completely disabled from this one event.

God Bless you all...

~Allie

Oh, and I forgot, because so many of you had asked...I am on Methadone for the pain...it does not TOUCH it...I don't think it does a thing...I really really don't.

Allie, I've been thinking about you and wondering how you are. Is there any chance you could get over to Dr. Hollis Potter in New York for an MRI to see if you have a pudendal nerve entrapment?

Thank you for responding Violet...

It is now a month later...

I have NERVE DAMAGE RUNNING THOUGH MY WHOLE BODY.

I am on a waiting list to get to the MAYO CLINIC. When they call, I will board the next PLAIN out to their Clinic in Rochester Minnesota.

My body is just SHOT. It hurts from head to toe. NO amount of Pain Management touches it. I have LOUD RINGING in the ears...and even SOFT SOUND HURT my ears. Just TYPING on the computer hurts my ears. Luckily, my boyfriend is gone to the gym right now.

I spent LAST week in the Hosptial, hopidng SOMEONE could help me...they could not. Told me to leave... to tlakch nd see if I could urinate on my own. I am having such trouble breathing on my own. I cannot wait to go to the Mayo Clinic.

I remain short of breath. I have to self-cath...I am not passing any urine on my own. I can no longer sweat on my own...where the sweat should come out, I have just small little blisters of water. I am losing the abilty to raise my legs, I am losing my balance...I have a VERY loud ringing in BOTH ears, but, when my Dr. looked in my ears, he found no fluid, no infection - NOTHING WRONG.

Friends - I AM SCARED TO DEATH....TRULY.

If ANYONE has ANYTHING to offer, I would be so VERY VERY GRATEFUL.

I am truly afriad, that I am going to die. I am so very scared.

Thanks for you help.

God Bless...

~Allie

Dear Allie,

You are not going to die. You will recover and get better. We are all living with this disease. If the hospital has not found anything that is threatening your life, it is time for you to see a psychiatrist. A psychiatrist will help you calm down with medication and talk therapy. He or she will pull you out of the dark pit that you feel you are in. I know -- I've been there. I am not minimizing the physical pain you are in or to suggest that it is all in your head. You ARE in physical pain. (We all are.) But you are also in alot of emotional pain, and a psychiatrist will help you with this AT THE SAME TIME AS you pursue your treatment for your physical pain. Please see a psychiatrist now.

We are all thinking about you.

Love from Lernica