Strange trip to Phoenix

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Strange trip to Phoenix

Post by Faith »

Thanks so great Doreen that you felt better while traveling. I can't imagine all that sitting in the car! Barometric pressure changes affect my pain levels alot. Traveling has always made my pain worse too pianogal. I don't think distraction removes the pain, but I do think it causes me to think about it less. Days when I am stuck at home caring for my toddler are almost always worse than if I am out doing something (even if I'm in pain while doing it). Maybe it's just because I feel semi normal again and I am such a "doer".

I was wondering how Loretta can confirm entrapment?

I think that theory makes sense RR.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Strange trip to Phoenix

Post by Celeste »

Faith wrote:I don't think distraction removes the pain, but I do think it causes me to think about it less.
Yes, exactly what I was saying. It's a management tool, not a cure. I think most of us have seen that the more we obsess and ruminate, the more intense we notice the pain can be. Removing that focus via distraction with something else can sometimes help.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Strange trip to Phoenix

Post by Quilter 2 »

To all of my new friends;
Thank-you all for responding to my post.
Her M;
Until PN hit, we planned on moving south to TN. Until I get the surgery, I guess we'll move in with our son, if the house sells, and then go from there. We are definately still going south, just not sure when. We're kind of thinking to go to FL to buy a cheap house and then leave when it gets really hot and muggy for the north. I think it's about time we live off our son like he did to us for years :lol:

Lernica & Pianogirl;
Of all the answers, I love yours the best. I did get a maid(er) and he even lets me sleep with him :lol: Yep, the hubby has picked up most of the vacumming, especially the rugs. He's doing that right now as I write. He told me to write to all of you and tell you this housework stuff is not as easy as he thought!! No S***! The princess has arrived!

Also Lernica, take the trip. We went on a cruise last year and when I booked it, it made me nervous thinking I'd have to cancel. It was fabulous. We didn't book any mountain climbing excursions as we did in the past. The only thing we planned on doing is going to beaches. Not having to do anything created a very painless trip. I still needed to take some pain meds, but nothing like at home. Getting there. When calling for flights, we go out of Fort Lauderdale on Princess, Jetblue has seats right in back of the pilots and there is plenty of room to stand, kneel and move around. Any airline I think has seats like that. Call and ask. The tickets cost more if you make them over the phone. Jetblue is 15.00, other lines are up to 30.00 BUT look what you have already paid doctors that didn't do squat for you. What the heck, it's only a phone call and if Celeste is right, it should help with the pain, because you'll be doing something with fun in mind.

RR;
I agree with you also. Anything that has to do with the core is not good. Before this Pn stuff, I never realized how much I did with my core muscles. I just did stuff that had to be done.

Well, thank you all very much. I'll let you know what Dr.Conway thinks. I really hope I'm one of the easier cases but if not, I'll just rely on all of you to keep me positve as you have done in the past.
Thank-you;
Doreen
I agree with whoever said that doing things doesn't really take your mind off the pain, but it does give you a different focus, so I guess in a way I agree with Celeste also. For me, that's kind of a tricky answer. I guess NOT doing labor takes the pain down and when you're away from home, you're not doing labor.
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
GraceUnderFire
Posts: 115
Joined: Fri Sep 17, 2010 1:57 pm

Re: Strange trip to Phoenix

Post by GraceUnderFire »

LOL! This is awesome. My hubby has been the housework king since this happened to me. He definitely has a new appreciation for how I used to work, manage the household and everyone's schedules, cook, laundry, clean and everything and he only has me to take care of :)

This has me thinking of planning a "vacation" which we haven't had in years. We love to cruise and the idea of skipping the hikes and hanging on the beach and in the spa works for me :)

So have you decided to have surgery with Conway or are you going to see what he says and then weigh whether to go to him or Hibner? I don't know what the heck I am doing right now . . . I have a consult with Dellon on 4/26, scheduled with left side w/Hibner 8/15 and Dr. Conway also has proposed redo surgery. This is all so confusing and I am a little gunshy of making another bad medical decision.

Oh, and we moved to a one floor and it does help. It especially helps me feel like I have run of my home and am not "trapped" on a level because I am avoiding the steps.

Take care :)
Grace
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Strange trip to Phoenix

Post by Celeste »

GraceUnderFire wrote: I have a consult with Dellon on 4/26, scheduled with left side w/Hibner 8/15 and Dr. Conway also has proposed redo surgery. This is all so confusing and I am a little gunshy of making another bad medical decision.
Wow, you are really taking the PNE World Tour! I hope your path will become clear.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Strange trip to Phoenix

Post by Quilter 2 »

Hi guys;
Okay, this is the way it is:
For some odd reason my computer does not like Bots. Kris has been a doll helping me in the past but because of idiots that spam, we're back to the bots. SO; Right or wrong, here's my E-Mail. rdinvt@sover.net. Grace, please send me an e with your phone number, if you don't mind, and I will call you. Also, don't feel you made the wrong medical choices. You've been doing this for awhile. Things have moved along quite rapidly in just this past year. You made the correct choices that were AVAILABLE to you at the time. Read some of Karyns stuff. It might help you with where to go. I think I'm doing Conway, (now that doesn't sound good :lol: ) just because my husband while still working could get a lot more help here instead of out west. He would have to come home and I'd be left in a motel for awhile alone or have to fly someone out to at least get me some ice. Dr. C does TG surgery now, just a little different. Whole lot more to say butGotta go. Write or call Grace.
My best;
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
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Strange trip to Phoenix

Post by Karyn »

Hi Doreen,
I'm so happy your trip to AZ went well. I really do think it was a HUGE benefit to see Loretta. You finally had someone listen to you and got lots of answers. That in itself is a dramatic comfort. I'm so looking forward to meeting you! You're a wonderful person and I always feel better after talking to you.
Love and 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.
Krisssy
Posts: 50
Joined: Wed Jun 22, 2011 1:24 am
Location: New York

Re: Strange trip to Phoenix

Post by Krisssy »


I had the exact same experience in Phoenix-NO pain there for an entire week! too strange! Krisssy

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
Krisssy
Posts: 50
Joined: Wed Jun 22, 2011 1:24 am
Location: New York

Re: Strange trip to Phoenix

Post by Krisssy »

My pain also feels better whenever I fly. There must be something to this barometric pressure thing.

surgery 2004 for prolapsed rectum
surgery 2005 for obstruction due to abdominal scar tissue
surgery 2007 for obstruction due to abdominal scar tissue
2008-clitoral pain, arousal disorder, frequent urination began
2011-pelvic pain specialist-Dr. Robert Echenberg
MRI-Dr. Potter 8/11 showing scar formation of pudental nerve
appt. Dr. Conway-10/11
appt. for guided sedated nerve block with Dr. Quesada-10/11
appt. with Dr. Hibner-1/12
TCGentry
Posts: 2
Joined: Wed Aug 17, 2011 7:12 am

Re: Strange trip to Phoenix

Post by TCGentry »

I have had several similar experience where I go away on vacation and am able to sit all day long without any pain. I finally figured out that what I am doing differently on vacation is to not use my arms to type or write or do dishes or whatever. I know it sounds odd, but I'm 100% sure that my pain while seated is directly related to whether or not I've been lifting my arms to type or write.
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