DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :,(

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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Charlie »

catherine a wrote: Have you seen the video footage on Youtube http://www.youtube.com/watch?v=juAve2pNxws

Lots of questions being answered there by Prof. Vancaillie.
Good video. I like the way the Dr in it simply defines the difference between neuralgia and an entrapment.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Karyn »

Catherine,
Thank you for posting the link. This was by far the very best explanation and presentation I've seen so far.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Missingmylife42
Posts: 101
Joined: Sat Oct 02, 2010 1:30 am

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Missingmylife42 »

Karyn how was your appt.
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Quilter 2 »

Dear Missingmy life;
I Know it's very diffficult to realax BUT, from your posts it sounds like you're driving yourself crazy. I know from personal experience and from my PT in Burlington VT, Nancy Suraez that the more nervous you are, the worst you're going to hurt. You are making your nerves flare. One day my husband was driving to fast, (he said he wasn't) and by the time I got to PT I was in some major pain. I left the house with maybe a #3 with meds and got to PT hanging onto a 8-9. Nancy did a great job talking to me, but really my husband, about getting me all nerved up.
Hon, I know after suffering for 2 years myself that telling you not to get yourself in a tizzy is easy to say and hard to do. If you can master it a little bit, I think it might help.
Stop blaming yourself. You didn't know what you had, so you did what most of us did. Go to dr after dr and of course they didn't know either so they tried to help in ways that they knew. I read an article somewhere when I was trying to diagnose my self and it said Drs. only treat what they know. This article was written by a dr. When I first got hurt I went to every back dr from here to Boston. I finally found Dr. Conway and Dr. Quesada. I can't say if they are right for every one, but I do know at least I was diagnosed and on the right track. I had 6 injections with Dr. Q and all but the last one worked. I recently had a Botox shot and that didn't work at all. Some it helps and some it doesn't.
You know you can call me at any time if you need to talk or if Dan needs to talk to Rod, my other half. I'm here to help in any way I can. I don't know zilch about a lot of the nerves and Alcock cananl and all the other stuff. What I do know, is how to listen, offer suggestions based on my personal experience and try like hell to make you laugh :P :lol: :D :) :mrgreen:
Hugs are on the way. Close your eyes for a sec and just feel them;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Missingmylife42
Posts: 101
Joined: Sat Oct 02, 2010 1:30 am

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Missingmylife42 »

No surgery huh, did you have a mri with potter?
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Karyn »

Hi Missing,
I agree1000% with everything Dorren said. You are making your condition much worse and no, you didn't do this to yourself! As I've tried to explain to you before, while it's very possible the blocks added to your pain, it's very unlikely they caused it. Otherwise, why would you seek nerve blocks to begin with? Nerve blocks are not a cure for PNE. This is a progressive condition that gets worse with time for most of us, not better. Please try to shift your focus from redundantly asking "why" to asking what you can do about it and to your upcoming appointment with Hibner. It's something to look forward to! :D
As far as my appointment with Shobeiri goes, you can find my post in Case Updates.
Hugs,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Missingmylife42
Posts: 101
Joined: Sat Oct 02, 2010 1:30 am

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by Missingmylife42 »

Karen Im so sorry, Im curius though when he reads the disc. But I still would not let himm touch you :/
pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: DID I DO THIS TO MYSELF!! PLEASE READ.. I THINK I DID :

Post by pomegranate »

Alisa,

Catherine gave you a great response.

I know I've told you this many times, but I feel compelled to do this again.

I had a round of pudendal nerve blocks in December 2009 that sent me into a months long flare. I didn't recover from it until around May 2010. So, that's five to six months. I still have some new pain from that block, but I don't consider it a part of a "flare." It's just there.

You had more blocks than I did. It is entirely possible that the new pain you're experiencing now will settle down some. Or, your new pain could be the progression of the condition.

Regardless, you can't blame yourself or the doctors. What's done is done. No one can change a thing about the past.

I wish you all the best with an upcoming appointment and treatment plan. There is still light at the end of the tunnel.

Lauren
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
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