Health Organization for Pudendal Education

Hi to all;
On 3/22 my husband and I flew to NYC for the day and had the MRI with Dr. Potter. A week later we were on our way to Phoenix to see Loretta and Dr. Hibner. I decided to try and make the trip into a mini vacation and hoped to be able to see something of the state instead of just Drs. After the 19 hour day, we slept quite awhile. When we woke up the next day, I did my usuall routine of 3 Tramadol and a rectal valium suppository. I was feeling pretty good so we decided to take a trip. When we go back after an 10 hour day, I realized I had very little pain and I was sitting most of the day on my Tush Cush I took 3 tramadol and went to bed to watch the TV. Again the next day we traveled 400 miles. Pain level was at most a 1-2 Okay, what the H is going on? At home I'm waiting for the clock to tell me I can take more meds. I avoid sitting and driving like the plague. Day 4 we went out site seeing again.Same thing. Now we're trying to figure it out. Not complaining about NO pain, mind you, but just don't know why. 5th day, we chilled by the pool and went for a few walks. I hurt a bit more that day, maybe a 5. But as we were sitting, laying at the pool, it dawned on me that I did NO stairs, lifting, bending for pots and pans to cook dinner, no bending into the washer and dryer. Basicly a princess. 6th and 7th day more long trips. The next day I saw Loretta. What a dream. Nice, sweet and knowledable. She confirmed Dr. Potters report of me being trapped in the St ligaments on the right side.
Also some scarring on the dorsal nerve,( I have no pain there). She also agreed with us about why I didn't hurt as bad in AZ. The next day when I saw Dr. Hibner, he said he lets Loretta guide him and he believes she is right. I asked him, out of all the PN patients does my entraptment seem easier to get to. He said yes. That's good to hear. I just hope when I have the surgery with Dr. Conway he agrees and finds the same results. He also said that if I didn't have any pain on the clitoris, he wouldn't suggest surgery. He said why have surgery on something that doesn't bother me. Fine by me. When talking to Karyn, she tells me Dr. Conway can reach the area so why not have it taken care of while he's right there. That makes sense also. It's not like I'm going to need a second surgery.
When we got home Fri at 3:00 AM, after another 20 hour day I was kind of okay. Went to bed around 5 AM and up at noon to start the 6 loads of laundry. Got a phone call from a very good friend saying they would like to come Sat. Holy crap. I said yes come along and we had a great time. I would never turn my friends down after they were offering to drive the 6 hours to get here just to see how I was doing. BUT when they left on Sun. I was hurting bad and tired as hell.
So the jist of this "book" is get rid of the stairs. Rod called the realtor the day after we got home and told him to drop the house another 10 grand so hopefully it will sell and we can get somewhere without stairs.
I have an appt. with Dr. Conway on the 5th of May to discuss surgery. AND the best thing is, I believe I'm going to get to meet my new very good friend Karyn in person. I already know she's beautiful on the inside and I've seen pictures and she's beautiful on the outside,(if you can overlook the snake she's holding) HA HA.
My best to all of you;
Doreen

I hope you are right about it being bending, stairs etc if you are going to go through all the trouble of selling the house to avoid stairs! Because I think it might be climate related too / instead? Neuropathies tend to respond to changes in barometric pressure. higher humidity and higher altitude both lower the barometric pressure which is not so good for some peoples' neuropathies. Mine certainly respond to pressure changes. I already live in the desert but the elevation is somewhat high. We spent a weekend camping in Death Valley, which is very low altitude and in fact contains the lowest point below sea level in the USA, and I felt almost cured! That was in spite of climbing around in canyons and sleeping on the ground. So I am thinking that going from a chilly, humid environment to a very dry warm one might have been helpful.

"But as we were sitting, laying at the pool, it dawned on me that I did NO stairs, lifting, bending for pots and pans to cook dinner, no bending into the washer and dryer. Basicly a princess."

Yup, I think it was the princess thing. Here's my prescription: No more housework!

It's common as dirt to feel better on the trip, because you're doing nothing that exerts you. Also you're probably distracted by the novelty; distraction is good because it keeps us from focusing on pain, always measuring it, and getting stressed and feelingit more strongly.

Theory about STL-entrapment and PN pain - After Potter's MRI impression was validated at surgery and the source of entrapment was confirmed to be the STL, I began to rethink how my pre-surgery pain symptoms might have been linked to certain activities – specifically those that engage the body’s core/trunk muscles. Activities that engaged my core caused the most burning pain, both immediate and delayed flares - examples include lifting, bending, ironing shirts, prolonged leaning forward, shoveling snow. Activities like walking did not cause nerve pain, nor lead to a flare. Linking all this to the pudendal anatomy and association with its surrounding tissues, I believe that the STL is very engaged with the core. And that if one’s nerve pain is caused primarily by core activities, one might consider entrapment at the STL as a probable cause. Take this theory as “just my experience.”
RR

Okay, here's another theory (relevant to those of us living in the frigid north): shedding all those layers of winter clothing, boots, bags, briefcases and knapsacks and trading them in for bare feet, bathing suits and flipflops could also make a big difference in pain levels. This winter I often dreamed about a trip to the Caribbean -- until I realized that the painful trip there and back would probably cancel out the good effects.

I used to do better after a long flight. Not anymore but for a long time it was the case. One can speculate that the nerve is also compressed by blood vessels and that can change slightly with altitude or barometric pressure. I certainly would not blame everything on the stairs.

When my problems first started the first thing I realized was taking the stairs at work for exercise flared my pain BIG time. This was 6 months before I self-diagnosed and 9 months before official diagnosis. Before we sold our old house to move into a ranch I would consolidate my trips up and down the stairs. I had to really think through my day to minimize the stairs. Many times I do leg lead as that helps reduce flares. Living in a ranch has made a difference. If I'm up and down the basement stairs more than 2-3 times it flares it up. I also must be very careful about bending over, lifting, can't squat at all, they all flare my PN pain. My husband moves the laundry basket for me so I don't have to lift it. Vacuuming is another problem. I can vacuum the hardwood floors but the thick rug in our bedroom I can't do.

I have also noticed that barometric pressure alters my pain. Not so much the PN pain but the weather does effect my obturator nerve pain and the RSD in my legs. I do alot worse in the fall. For some reason spring doesn't seem to bother me so much. Summer is usually pretty good unless we are having a bunch of thunderstorms. I can predict the weather at least 1-2 days ahead of any major thunder or snowstorms. I think I could be a weather forecaster on the evening news and do just as well as they do

ezer wrote:I used to do better after a long flight. Not anymore but for a long time it was the case. One can speculate that the nerve is also compressed by blood vessels and that can change slightly with altitude or barometric pressure. I certainly would not blame everything on the stairs.

That happened to me recently too...i was going to mention it but did not want to go on and on. I flew across the country on April 1 and back on April 4, and I have been in an "anti-flare" ever since; skipping med doses and feeling generally good.
Our family just booked a flight for a trip to Minnesota this summer and I am kind of excited to see if another round of flying has the same impact on me. It was 3600 mile round trip road trip to the same destination 2 years ago that increased my PN to the point of disability. Kind of a shame, seeing as I love road trips and hate to fly.

odd, I've always gotten worse after flights. that's how my pain developed to PN was a long flight from tahiti to the OC. Well, it was a lot of sitting too.

but if you are feeling better in phoenix, awesome. Just gotta skip the housework, eh and hire a maid.

I honestly think that your feeling better isn't cause of distraction cause in my trips I am usually flared worse for traveling.