Health Organization for Pudendal Education

Violet M wrote:Allie, I was reading back through your posts and I was wondering more about your history before the pudendal nerve blocks. You said you had interstitial cystitis (IC). Did you have it for very long before the nerve blocks and do you remember how the docs came to that diagnosis?

The reason I'm wondering is because some people are diagnosed with IC who actually have pudendal neuropathy -- in other words, IC and PN can have similar symptoms and it's possible for the wrong diagnosis to be made. Also, some of the PN docs think that IC can be caused by pudendal neuropathy and feel that some people are wrongly diagnosed with IC who actually have PN. I'm not saying that's the case with you -- just brainstorming and trying to think of all possible scenarios. So have you had any other procedures such as epidurals, etc. recently that could have possibly contributed to this problem you are having?

No Violet, I have never had an epidural, etc. No children. No prior problems with my pudendal "area" prior to this.

Have YOU ever heard of problems of the pudendal nerve traveling to the autonomic nervous system? I have looked this up and have found this on a few sites, but no one seems to have it on here. I know you are not giving out medical advice...just cuious.

I TRULY am afraid I am going to die...do you KNOW of anyone who has ever died from this? I don't want to go sounding CRAZY, but I've HAD anxiety before...this is NOT like anxiety...I am TIRED all the time...I am in PAIN all the time...I AM having trouble with shallow breathing and a high-heart rate. I DO have numbness in the back of my neck. I CANNOT get answers from anyone locally. I GUESS I WILL have to call Dr. Antolock, but I have NO IDEA how long it will take to get in to see him, and I will have to fly there, as I live in Central New York State...

Thanks for all your help...

Allie wrote:
I JUST don't know where to go.

I DON'T think Dr. Howard will help me...he is affiliated with the same Hospital as Dr. Westesson.

Allie,

I don't think you should assume that Dr Howard will not help you ,in fact I think it is more likely that he will want to help since he is affiliated with the radiologist who did your blocks . Please call his office tomorrow. You sound to me as if you may have an emergency situation. A blood sugar as low as yours is, 47, I think is what you stated, is severely low. You may lose consciousness. You cannot possibly fly to Minnesota and do not travel alone anywhere. Dr Howard can consult with Dr Antolak on the telephone.

Allie,

I just had a Marcaine drip pu on my left pudedal nerve and it made everything on the left side completely NUMB. Because of this, I could not control my bladder at all. If they had severed the nerve, I know without a doubt, you couldn't control your bladder.

When my nerve was just nicked, it took me four months to get over the pain.

Kate

Allie, I have never heard of anyone having as severe a reaction to a nerve block as you are experiencing.

If traditional docs do not seem to be able to help I am wondering if alternative medicine might help -- something like acupuncture maybe. It's almost as if your immune system is not functioning properly and reacted badly to the injection. I noticed the Mayo Clinic site also mentions acupuncture. http://www.mayoclinic.com/health/autono ... e-medicine It may take a bit of time for your body to fight this off but please keep your courage up and keep fighting.

JeanieC wrote:

Allie wrote:
I JUST don't know where to go.

I DON'T think Dr. Howard will help me...he is affiliated with the same Hospital as Dr. Westesson.

Allie,

I don't think you should assume that Dr Howard will not help you ,in fact I think it is more likely that he will want to help since he is affiliated with the radiologist who did your blocks . Please call his office tomorrow. You sound to me as if you may have an emergency situation. A blood sugar as low as yours is, 47, I think is what you stated, is severely low. You may lose consciousness. You cannot possibly fly to Minnesota and do not travel alone anywhere. Dr Howard can consult with Dr Antolak on the telephone.

I agree Jeannie...I cannot travel. If I remember tomorrow. I will call...thank you for your post....very much appreciated.

Tiny Dancer wrote:Allie,

I just had a Marcaine drip pu on my left pudedal nerve and it made everything on the left side completely NUMB. Because of this, I could not control my bladder at all. If they had severed the nerve, I know without a doubt, you couldn't control your bladder.

When my nerve was just nicked, it took me four months to get over the pain.

Kate

I am very sorry for your pain Kate, but, are you saying that, the nerve was nicked, and, after 4 month, the pain went completely away?

Allie

Violet M wrote:Allie, I have never heard of anyone having as severe a reaction to a nerve block as you are experiencing.

If traditional docs do not seem to be able to help I am wondering if alternative medicine might help -- something like acupuncture maybe. It's almost as if your immune system is not functioning properly and reacted badly to the injection. I noticed the Mayo Clinic site also mentions acupuncture. http://www.mayoclinic.com/health/autono ... e-medicine It may take a bit of time for your body to fight this off but please keep your courage up and keep fighting.

I am afraid violet. I am awake now at 3am. I usally take my sleeping meds at 8pm and I'm out by 9:30. Well, this has all changed since last week, and now, I am so short of breath I am just scared to death. If I PM you my phone number, would you call me, or would you not want to get involed? it's okay if you don't. I really am just scared, and NO Dr has an answer for me at all. i just cannot BELIEVE a NERVE BLOCK can MESS YOU UP SO BAD to the point where you can't breath!! it's so scary!

Allie,

I am with you right now, praying for you.

I used to get short of breath and could hardly walk from my bedroom to my bathroom. I thought it was withdrawal from my pain meds. Are you on any? I found inbetween pills especially this would happen... constant withdrawal. Or it could be an anxiety attack. You have plenty to make you anxious right now. Can you have a doctor prescribe you xanax? When I was short of breath, I went to Urgent Care and they prescribed a low dose for me. It didn't help, but when I took a pain pill all the shortness of breath went away so that's how I knew it was withdrawal symptoms.

Also, today I had a weird full body shaking uncontrollably teeth chattering thing happen, and thought of you immediately. My only fix was a hot bath and laying down. I don't know why it happened if it's cause my nerve was flared or if it was cause I had 2 shots of japanese sake forgetting about having my medical pain med suppositories in... but I almost think that when the nerve is seriously flared, of course it could affect your whole body because don't orgasms sometimes move throughout the whole body in people? (don't know, I never had one)

Sorry I am not super medical, but if you ever want to talk, I'm here.

pianogal wrote:Allie,

I am with you right now, praying for you.

I used to get short of breath and could hardly walk from my bedroom to my bathroom. I thought it was withdrawal from my pain meds. Are you on any? I found inbetween pills especially this would happen... constant withdrawal. Or it could be an anxiety attack. You have plenty to make you anxious right now. Can you have a doctor prescribe you xanax? When I was short of breath, I went to Urgent Care and they prescribed a low dose for me. It didn't help, but when I took a pain pill all the shortness of breath went away so that's how I knew it was withdrawal symptoms.

Also, today I had a weird full body shaking uncontrollably teeth chattering thing happen, and thought of you immediately. My only fix was a hot bath and laying down. I don't know why it happened if it's cause my nerve was flared or if it was cause I had 2 shots of japanese sake forgetting about having my medical pain med suppositories in... but I almost think that when the nerve is seriously flared, of course it could affect your whole body because don't orgasms sometimes move throughout the whole body in people? (don't know, I never had one)

Sorry I am not super medical, but if you ever want to talk, I'm here.

I am on a very high dose of xanax...2 mgs. It does not help. I am also on sleep meds. They USED to help me sleep, but, since haven't.

I am very scared since your husband mentioned things about it going up your spine...very scared. Can it be stopped?

Allie, I am sure that pianogal will be along later, but in the meantime I will just point out that what her husband actually said is the direct opposite of what you fear -

pianogal wrote: it is impossible for the damage to the pudendal nerve to damage the spinal cord upwards.

Did you manage to call Dr Howard?