Health Organization for Pudendal Education

Hi Kathy
No I didn't have the Lidocaine infusions in Rochester, the wait list was way too long (6 months long). So I was able to get into my local clinic here in Toronto. I was given a very aggressive dose of 400 mg three times in one week. Most people are not able to tolerate that..... I think the normal dose is 325mg per dose 3x in one week? My pain doc said he wanted to really target my rectal pain. He said this pain I was having was muscle spasm being irritated by a nerve in the PN area. He really felt that the Lidocaine would calm it down significantly. So I phoned NYT and she described her pain and I felt that my pain sounded the same. Ketamine is more for Chronic regional pain my doctor said and would not help my rectal spasms. Well, the Lidocaine started working about 9 days after my last infusion and my pain went from a 7 down to a 0. It worked for me so my doctor was right!
The infusion was given in the operating room waiting area because you are hooked up to a heart monitor, etc. I was on a stretcher, so I could lay on my back, side, turn over.... They were very kind and accomodating to my position and my need to change positions as needed. The infusion each day took about 1.5 hours and I had to stay for another 45 min. For recovery. I was fine, no side effects at all! I was not nauseas..... I stayed home the rest of the day and rested and didn't do too much. I really wanted this Lidocaine to take effect!

Anyways.... Since you have the exact same type of pain as me, I would give it a try! There is a wait so give them a call. The Rochester clinic said they need a physician referral to start the process.
Good luck! I have your email so I can private email you now!

Take care
Blossum

Kathy...
One other thing...... Lidocaine does not affect the bladder! I also have bladder urge issues because I still have my bladder mesh. I was not affected at all with my high dose of Lidocaine and that was very important for me when I discussed this with the pain doc. So, that is another good thing!
Blossum xoxo

Thx so much Blossom
I am really happy for you!
And inspired by ur success.. It sounds like ur doc is really knowledgeable about this type of pain. It would be great to talk by email.
Just want to make sure our pain is similar.
Mine is constant throbbing in the rectum, worsened by standing and makes sitting, kneeling etc, virtually impossible. Sometimes i have to do various activities. As a Mom ...there are things I must do for the family, but also just for my sanity! (going out when I can)

My issues are from muscle spasm as my PT and docs seem to agree.. They're just not posItive how much the nerve is involved too and if it's the PN or the other nerves around it.

As mentioned, when I suggested lidocaine a couple months back, my doctor here in NJ wanted to use ketamine instead... maybe ketamine's not right for rectal pain and may not've worked. I do remember that when Dr Jain in Manhattan tried a lido/ketamine combo in his office in 2011, I had no pain on his table.I was there for 4 -5 hours.. When he used just ketamine a week or two later, I did feel a little pain on his table.
He was the doc who didn't use the Versed and other protocol meds with me, so it a was waste of time. ( couldn't get up to high dose et) I remember feeling like I was spinning out of control (scary) and he turned it down..

i have another procedure for Dec 9, (un-related to infusions.)
But if needed I want to try the lidocaine asap.
If God-willing that helped, i could consider getting rid of this pain pump .
My pain with the back-up of stool feeling is so brutal right now, Im constantly using laxative and duclolax supps...but today only partial results and feel worse!
Ive had at least 3 small/moderate bms (so sorry for gross TMI) and still feel soo backed up.
My PT feels it all muscular issues, hope so! she is considered one of the best ,and in my experience certainly seems so.
I know the feeling of something- stool or object in the rectum is common for PN,, but it is so painful to feel strong urge to go,as constantly as I do..it pushes on the nerve. Is that how you felt? This is relatively new for me (at least the constant nature of it
It as bad as the rectal pain and it seems to worsen it ( the pressure etc)

I want to be active and do things as it makes me feel alive and normal again and helps my hubby as well (and thus helps our relationship) and our family dynamic.
If I just lay around in bed due to pain, it would make sense that I'd get more constipated, since moving around and walking daily is essential for good bowel habits.
Plus the laying around is so depressing and Im not able to take it anymore.. May we could talk more via email.
I'll stop here as Im probably repeating things Ive already posted
Thx again for all the info. I will print it out to show my doc soon . Hopefully he will listen if neeeded
hope to learn more about lidocaine procedure.. We could talk via internet if thats ok with you, So glad again that you're better.
Have a great holiday and thx again.
Kathy

Violet
Thx for the things for additional ideas...and the types of magnesium...Dulcolax is either feast or famine....Today...some results but still feel terribly backed up..yesterday, diarrrhea episodes. I alternate between the two ....thats no good.
I sympathize as this constipation/or stool back-up feeling is as bad the pain issue itself and in fact aggravates it..
Thx again! Have a good holiday
Kathy

Hey Blossom,
I almost lost the post I wrote to you, but luckily just noticed it posted..
I often lose my info if while proofreading,.which is why hopefully we can converse via email.
Take care,
Kathy

Kathy, I recommend you edit your previous post in this thread to remove your email address and only send it via PM to the people you want to have it just for your protection.

When I type a long post I usually copy it before hitting submit in case I get times out. Then I can just paste it and I haven't lost anything. I agree it's very annoying to be timed out.

Hi Kathy
I wrote your email down after I read Violet's post, so I have it. I will email you after your Thanksgiving holiday. Hope you are doing okay and having a nice weekend with your family.

Take care
Blossum xo

Blossum, I am so glad to hear how well the Lidocaine worked for you. Sounds like Toronto worked out well for you as you would never had gotten that much Lidocaine Rochester. When I was in for my last Ketamine infusion the nurse told me they have gotten so backed up with Ketamine at the moment they are not taking any new patients. Just shows what a need there is for these treatments.

Have a wonderful Thanksgiving.

Hi NYT
How are you?
I was wondering if we could possibly talk by
Phone about lidocaine injections as something to God
Willing help my rectal pain.
In discuss ing with blossom it sounds like I may be a candidate
I am at end of my rope with this pain and the
Bowel issues causes by the powerful laxative I need to stop that awful feeling
Of back up I get regularly
My doc is stubborn and may insist on using ketamine only
he doesn't like to be told by patients but it sounds like lidocaine works better. I almost went for ketamine infusion's last month but due to the comfort level of his room there I didn't.
I want to try lidocaine if he'll do it .
Otherwise I'm even Thinking of driving to Toronto if hubby will consider it.
Just want to make sure I'm a likely candidate, before doing that.
Again,I know there are no guarantees.
If u would be willing to speak I can PM you my
Info or vice versa ,
Thx very much, and happy thanksgiving!
Kathy
Sorry if post is disjointed I'm typing on an iPhone ad my computer is
Not working today ,

Dear blossom
I just noticed your reply. thanks so much
I really appreciate it and look forward to speaking with you via email.
I would like to try the lidocaine infusions and would even consider going to Toronto
if necessary, I have a local pain doc but he sounded set on using ketamine last time we spoke.
He is stubborn. I'm hoping I can convince him that lidocaine works best for rectal pain. He admits to not knowing much about treating PN. Pain.
I so need relief from this whole pain cycle as described,

thanks so much have a nice holiday with your family too!
And i look forward to your email .
Kathy

Pls Excuse the disjointed post I'm typing on an iPhone as my computer is broken right now
Thx!