Health Organization for Pudendal Education

Hi to all;
This isn't a new topic, but I can't seem to find where to write this. Sorry Mods.
May first was my 18 mo. "anniversary!!" I spent it shoveling compost out of a truck!! Not to exciting for most, but a MAJOR accomplishment for me. In the AM I took 1 Valium suppository and 2 Tramadol. NO BURNING!! I never took anything until about midnight and then it was only 1 Tramadol. I continued to unload 3 more trucks over the next few days. So, I guess I'm about 75 % better. The only problem I seem to have gotten is my lower back aching, but I think and hope that was from the bending. I tried to use my feet for spreading the compost and not bend but that was almost impossible. I will know if the lower back ache is from the shoveling in a few days/weeks. Sitting seems to make it worse but I think I just need to wait it out. I'm done with the compost so I can give it a rest and see if the shoveling was the cause. Hope so.
For all of you, still considering the surgery: I'm glad I had it done. I HATED the limited activity for the first year. I try to walk every day to strengthen my leg muscles.
There are days that I burn but it's so strange. The burning generally happens when I've had a lazy day and laid down to watch the tv. The more I'm up, the better the day. Doesn't seem to make sense but that's what has been happening.
I give up trying to figure it out. Four years is enough time to give to this stupid nerve condition. I just take whatever the day brings and know another day might be better.
My very best to all of you.
Stay strong and positive even in the worse days because there really is hope and help out there.
Love to each and every one of you for the pain you suffer each and every day.
Doreen

Fantastic news! Praying that your improvement continues.

Doreen!

I think you must have had surgery while I wasn't spending much time on the board because I didn't even know you had it done! I have been thinking f you and wondering how you were

I think a lot of people are only on this board when they are doing poorly so then you see speculation about whether surgery really works for anybody. I think lots of people considering surgery would appreciate it, if you would post about your improvement under the category heading, "success stories" - so they know somebody got better.

I am so happy you feel good...and should I say I am so happy you are shovelling compost? Hmmm...I'm happy about that if you are Great to hear from you!

Wonderful news Doreen,

Thanks for the update.. . . and glad you got the compost shifted too , although if you used this activity to find out how well you were, that's just madness. You must have been feeling ok to tackle this, so pleased you didn't have any great problems WOW!!!
This is definitely something that I would do btw

The fact that you have suffered for a while, well too long. . . . is also good news for others in a similar situation.

Take care,
Helen

Thanks guys.
I know I should be on here more with updates but I just want to keep moving. Sitting is not my best friend.-
Violet told me a while back that she improved a bit more after the 18 month period so I'm-a-hopin' I can write the same If not, well, I'm still glad I'm better than I was. Life can go on with some modifications.
My best to you all;
Doreen

Doreen, just been reading this thread - amazing! I hope that you continue to improve.

I notice that you mentioned at the beginning that you weren't sure where to post this - there is a Success Stories section. I think that your story definitely counts as a success.

Doreen I'm so glad u shared ur success story. I'm relatively knew to this forum but not knew to the pain. I've been in pelvic pain now 5 1/2 years I'm happy u were able to take care of ur pain in 4 years. If only my fr hadn't kept telling me he can fix it I may hv been abl to start my journey towards healing sooner.

I wasn't clear frm ur signature who did ur surgery. Was it hibner? Did u see other surgeons bfr u decided who u wanted to do surgery? I'm scheduled to se Dr. Conway in July. I live in NJ so even though he's a 5hr drive he's really the closest. My pt did tell me if I do decide to hv surgery I shld only use Hibner. I know I'm not up to surgery just yet and I hv not even been actually diagnosed w/ PN, I'm self diagnosed at this point, but if I do need surgery just wondering how u chose a surgeon?

Shana

Hi Shana;
In a nutshell:
After 18 doctors, I self diagnosed as well. Called Conway, 3 months later received and apt. and confirmed I was right. At the time he was only doing TIR surgery. Wanted to try EVERTHING before surgery. Went to Dr. Potter in NY for a MRI. Once again, confirmation. Had many shots including Botox.. Some helped, some didn't. At that time the shots were with Dr. Quesada. I don't know who Conway uses now. Had PT, one that was trained in PN. Not a good idea as far as I'm concerned. Made an appt. with Hibner. After a 9 mo. wait, saw him and his PT. By this time, Dr. C was doing the TG surgery. Back to Conway and decided to have the surgery in NH. We lived in VT, a four and a half hour trip. I liked Conway's manner, concern, call backs(that sometimes takes awhile) and it was closer to home. If I had the surgery in Phoenix, 1, it was double in cost, 2, since you have to stay in a prone position I could only fly to NY by buying 4 tickets. 3 for me to lay down and one for the hubby. There weren't any 3 seaters from NY to VT so I couldn't lay down. St. Joesph hospital was great. After the surgery I stayed 2 days in the hospital and rented the Extended Stay for the following 10 days. Had a checkup with Conway and home I went. I saw him again after 3 months. That was my choice. I knew we were moving to TN and I wanted to be cleared as much as possible before the moving undertaking. That was a nightmare in itself!!
If I had to do it again, I would go to Conway.
I had a great support team with girlfriends and family while I was recovering to the point I could be up for more than an hour a day.
When and if you decide on the surgery, my best advice to you would be follow the paper instructions to a tee. More than likely, you're an active person, so that may be the hardest part for you. It certainly was for me. Meds take care of the pain, but lying in bed for months on end with only an hour of standing almost drove me nuts. I only did it because everyone told me I couldn't!!
Hope this helps Shana. Before Surgery get everything done, organized and LET people help.
My best to you;
Doreen

Doreen, it's fantastic to hear that you are doing so well! I agree with you that patience pays off. I am still improving, believe it or not. Several months ago I started an exercise program called "The Firm" and I feel great. I can sit for hours with no problems. So hang in there and maybe a few years from now you will be a landscape contractor. You can come and shovel compost for me anytime you want.

It's possible your low back problem is related to weak muscles and weak core from having been in bed so long. Please be careful and strengthen these muscles slowly so that you don't set yourself back.

Violet

Wow Doreen what journey!!

When I called Hibner's office and found out he won't get on the phone and talk to you befor ur apt I was a bit taken aback. To fly out all the way to AZ w/o knowing if he even can help is crazy to me. Conway seems very nice just soeaking to him on the phone and he has great reviews online.

How long do u have to b on bestest after surgery?

Shana