Health Organization for Pudendal Education

Thanks for the suggestion, Pianogal, about the SI belt. I have tried it and, like tight jeans, it compresses the pelvic area too much.

Lernica

Me, too! The belt is a no way, jose for me! I tried "The Compressor" from Diane Lee and it was freakin torture! Yes, very much like wearing tight jeans, Lernica. Not only do I have problems with stuff compressing my nether region, I have nerve pain that runs in lines in the front of both hips - down to my groin. Also areas of my lower abdomen. I can't even lean against a counter or anything, let alone being "compressed".

Yes, I had a horrible time walking before surgery. Over the years, it got increasingly worse. Went from walking to limping to almost falling with each step. Went from cane to walker to rolling walker to manual wheelchair to powerchair. Now, post surgically I am walking unaided most times. I occassionally need my cane but only if I have overdone. I am walking much better, initially, but still am unable to walk far or for long. I really should still use a powered chair for shopping as I still wind up on the floor all spasmed up if I go for more than a few items. I would describe it just as you did in an earlier post, my pelvis just locks up. Since my hysterectomy I have noticed even more improvement in my walking. The Pudendal nerves exit the spine in the sacral area so it stands to reason that if they are irritated or entrapped there might be sacral pain. I broke my sacrum in my fall so (before my PN dx) I had been told that the pain was from that and I would have to live with it. I knew that wasnt true as I have broken almost every bone in my body, many more than once and I know the difference between old broken bone pain and the pain I was feeling. Since PN surgery, although I still have vag, anal and sacral pain it is significantly less, especially in the sacral area (unless I walk too far), I expect it will get even better with time. May I make a suggestion? I was very very hard-headed about losing my mobility. I refused to use any type of aid as it made me feel like an invalid BUT because of that I wound up falling numerous times, I wound up on the floor in excruciating pain alot (LOL as I am typing this it is a reminder to me too right now!) and I probably caused myself alot of pain and heartache and more nerve damage by trying to push myself. Use a cane if you need to, use a walker, a wheelchair (I know sitting sucks too so its a hard call), use a powerchair. Do not limit your life to four walls because of pride. I found that once I allowed myself to use a powerchair, I was able to do my shopping again. Maybe thats all I could do that day, my pain was still up from sitting and driving but at least I was out of the house. I found I was able to go to the movies. Yes, I had to use two to three seats and lay down during the movie but at least I could go...before I was unable to walk far enough to get in there. So please, this condition is limiting enough in itself, dont help it out. One last thought and I will get off my soap box...those of us with this condition (and other chronic pain conditions) learn to put our best face on for people. We develop (what we refer to as) unbelievable pain tolerance just so we can get through each day. We learn to hide it all...not only from strangers but from our loved ones and even from ourselves, we learn to LIE. We isolate when we cant put that face on, when we just cant "fake it" that day. Many people talk about this tolerance like a badge of honor, like its some kind of contest or something...it isnt. Just because we dont show people how much we hurt doesnt make us hurt any less. All that pain, all that tension, all that desperation just builds up in us, in our tissues "locking us up". These forums are great, because we can share with each other and we can tell it like it is, but we need to learn to let people "see" us. That doesnt mean we need to be whiney bitches all the time but we need to let people "see and feel" how this condition really affects us. We need to be truthful with our doctors, our loved ones and ourselves. HUGS, Katherine

Katherine,

Thank you for your kind and wise words. I am so glad to hear that you are feeling better after your surgeries and your many years of pain and suffering. I hope that you will continue to improve and grow stronger as the months go on. You are an inspiration to us all.

Warm regards,

Lernica

Katherine,
Thank you for your post! So true! So encouraging! I definitely "fake it" daily even when I'm wanting to be open... learning to lie to myself and others w/o realizing it... I admire your courage to keep finding ways to participate in life! I pray for a good recovery for you from surgery!

Does anyone else feel like they could use new shock absorbers in their hips/pelvis? I find that flat shoes with no support are very hard to walk in -- they don't provide enough "cushioning" for my pelvis. I need very supportive lightweight running shoes. Any other kind of footwear hurts my perineum, hips and groins too much when walking.

Wouldn't it be nice if we could go to an auto repair shop and order new shock absorbers for our pelvis?!

I LOVE the idea of ordering new shock absorbers!!! I wear the hideous "supportive" sandals and clogs to work every day and still I wind up hurting at the end of the day. Definitely time for a good tune up on this body!!!

So I have been able to resume walking (recreationally) over the last month, but no more than 30 minutes at a time. After that my sacrum fires up and I start to experience the dreaded internal burning.

I wanted to share some recent observations about my new walking ability. My city is located on Lake Ontario. Throughout the downtown core (where I live) there is a slight decline in the streets leading down to the lake. Many people probably wouldn't notice it. But boy do I ever! I can walk down towards the lake with no problem whatsoever. But I absolutely cannot walk back up! And it's not even a hill, just a gradual incline. When I start walking uptown, I start feeling pain (as described above) immediately. So when I walk downtown I always have to take either the subway or a taxi back home again. When I walk up the streets in my residential neighbourhood, I have to zigzag back and forth across the street to lessen the incline. (I am sure that I look completely crazy doing this!)

I remain struck at how sensitive and irritable that damn pudendal nerve is. I can't walk at all if I have to carry something (like a purse or knapsack). I cannot tolerate any amount of weight, not even a pound. If I have to carry something, I use a bag with wheels (like the kind stewardesses use). When I first started my PN symptoms about a decade ago, my intolerance to carrying even small weight led doctors to believe that I had hip stress fracture in my hip.

Lernica wrote:Throughout the downtown core (where I live) there is a slight decline in the streets leading down to the lake. Many people probably wouldn't notice it. But boy do I ever! I can walk down towards the lake with no problem whatsoever. But I absolutely cannot walk back up! And it's not even a hill, just a gradual incline.

I can sure relate to that, Lernica! Before surgery, I even had major difficulty going down slight inclines. Uneven surfaces were also very problematic.

Lernica wrote:I have to zigzag back and forth across the street to lessen the incline. (I am sure that I look completely crazy doing this!)

I'm with you there, too!

Lernica wrote:I can't walk at all if I have to carry something (like a purse or knapsack). I cannot tolerate any amount of weight, not even a pound.

Can relate to that, too. What do you feel when you're carrying something? Is it your sacrum and/or that pulling/pinching/stabbing feeling in your groin area?
At almost 4 weeks out of surgery, I don't know if I still have problems with the inclines/declines. Although I'm still "shuffling" along, I am definitely walking better. The shuffling is coming from the tightness I feel in my lower butt and perineal area. Before surgery, I was schlepping. The weather is starting to warm a bit in my neck of the woods, so I'm hoping to begin a daily walking routine.
Warm regards,
Karyn

I too would love to have a shock absorber system for the hips.....we should patent that idea!
I like to wear flip flops in the Summer but have found that I need more cushioning as my feet are beginning to complain often at the lack of cushioning...oh dear does it ever end the effects of PN!!! Maybe its my bunion after many years of too high heels but I dont think so.
I am about to invest in a pair of Fit Flops to see if they help...has anyone tried them?
When I wear wedge sandals I feel so much better with a little height, mind you I am already tall enough so I dont need the height as I seem to be towering over people around me.... I have noticed that many people ask me to reach up to do certain tasks that they cannot reach though.....!!!!