Health Organization for Pudendal Education

Folks,
I just want to say thanks to everyone that has posted over the last few days! I am without internet service for the next week as I am moving into the new house. I am posting this from my cell phone but its a real pain in my PN flared butt to type on it... Flyer - thanks for the kind words as I see from your sig that you have experienced some hideous pain flares of long duration. Lernica - huge thanks for all the info for me to research and reason to stay hopeful amiidst this terrible flare
I am sure to have comments and questions by late next week once settled in to new house and with internet service connected again.. Thanks again!!!

Matt

Matt,
I couldn't begin to add to all the wonderful and useful help you have been given by the "experts" here. I do however, remember reading early on about regulating your medicine due to the high costs. I take 90mgs of cymbalta a day, which means 2 pills, one 30 and one 60. I got so frustrated with how much I was paying for my drugs I began to do some research. Turns out cymbalta has a generic name Duloxetine. And they sell it in Canada. You do need to fax in a Drs. prescription. It costs about half of what I was paying here. I have ordered other drugs also. Unfortunately they don't have a generic for Lyrica or I would get that there.
Go to blueskydrugs.com. I noticed they have a new site, the old one was very easy to use, so this new one hopefully will be. Keep in mind a few things. What I buy there is out of pocket. They can't deal with US insurance. It takes around 18 business days to get delivery. For example, my cymbalta is made and packaged in India. I've been on cymbalta for years and I noticed absolutely no difference between my old and their new pills. They are very easy and nice to work with. I joined the Albertson's Drug program. I get 90 elavil (amitriptyline)100 mgs, a 3 month supply, for 10.99. Even Canada can't beat that. Same with my Tramadol.
Check all your other drugs. They may have them cheaper, especially generics. The first year I was sick, 4 years ago, I reached my $3,000.00 insurance payout for the year, and it was only April!! Everything was out of pocket the rest of the year!
I also remember that you said you were positively diagnosed with PN. Was that done with a ct guided pudendal nerve block? I'm sure there must be Drs. closer to you in Ohio, but if you can travel I suggest Dr. Michael Hibner at St. Josephs hospital in phoenix. He's wonderful! Hope some of this info will help.
Lindsay

Hello Lindsay!

I just want to say THANK YOU SO MUCH!! I was paying $225.00 for a one month supply of 60mg caps of Cymbalta at my local pharmacy. I went to Bluesky per your suggestion and guess what? They have the actual brand name Cymbalta at $199 for 84 capsules! Thats basically a 3 month supply (I dont get the 84 caps part however??? Why not just an even 90?) Anyway - you SAVED ME $165/month and really appreciate it Lindasy. I have not verified it all yet but if it pans out I am one happy camper. Thanks again

I was diagnosed on all my symptoms / pain conditions and a PN Block in January. The block gave me about 3 hours of relief from burning( but i still had some pain).. Enough for my pain doctor to say I have PN.. Not PNE of course. We cant confirm that until I decide if I am going for surgery.. Which I dont think I will do based on all my research. The success rates are just way too low for this guy!
Quite frankly, I have a long way to go in the discovery process. There are many more tests that I want to have done to rule out other conditions.. I may have an Inguinal Hernia. But thats a whole different story for another thread.

Hi Matt,
Glad it worked out for you! If the generic is even cheaper I would go for it. I haven't noticed a difference between the generic and brand name Cymbalta, which I have taken for years. Just remember it takes 18 business days after you fax in the Drs. prescription.
Lindsay

Well ,

I thought now thats its been 2 months since my nightmarish flare, and my First Post I would get back on the thread and post an update. I am moved into my new home and pretty much settled in now. Without the help and support of my close family and friends my wife and I could never have done it. My wife pretty much took the bull by the horns and got everyone together to move all our stuff to the new home. SHE is amazing and I am truly blessed to have her with me through this painful journey. I always tell her that if I didnt have her with me over this past year I would be dead. My family and friends as well -I couldnt do it without them! I love them all...

That being said, I am not much better since the wheels fell off on Dec 28th.. I can now stand and walk for several hours at a time but I am in pain on a scale of 5/10 always. I use Ice constantly on my tailbone area to help with the constant deep rectal pain that radiates up to the lower back. I use ice so much that I have developed gray patches on my skin where the ice is applied. I googled it and it appears to be slight frostbite. There have been more times than I can count that my pain was so bad (8/10) that I fell asleep with ice directly on my skin because my pain meds kicked in and knocked me out. So now I have to worry about nerve damage in and around my tailbone area due to trying to relieve my pain!! Its always something with this damn disease. I want my life back!

I drove for the first time last Wednesday.. I sat for 30 minutes in the car driving to a business meeting and then another hour in the meeting. I then drove back home in pain. So i sat for about 2 hours ( which if I am entrapped was a real bad idea from what I read! But whats a man to do? I have a family to support here....) My pain is more of a deep pressure type feeling. It literally feels like something way up in the rectum or colon is gonna rip open or explode! Whats real strange is that sitting in a car is the worst. I can sit on a hard flat surface for about twice as long without getting the pressure pain. This pain I get has led me to think that maybe I have a hernia or tear somewhere in my bowels. After reading all the Inguinal hernia info that has been posted lately it really got my wheels turning.. So I brought it up to my Mom to get her thoughts on the subject and she told me that when I was an infant I had an Inguinal hernia that was never repaired. It turns out the doctors back then (43 years ago) told her that it would resolve on its own over time. Hernias do not just repair themselves over time! Its just a known fact.. Its amazing they got away with that. Could there be a connection !? It is ironic for sure and at the very least it put a halt to my SCS Implant procedure.

I have posted on here that I was going to move forward with a nuerostim device. Several people have warned me that its too early for that procedure based on my background, length of time being sick and that I needed more testing to rule out other causes. I am going to heed their advice for now. I set up an appointment with a colorectal surgeon that specializes in hernia repairs and colon/rectal surgery. He is at the Cleveland Clinic hernia center. I read alot of positive reviews on the hernia center and of course the cleveland clinic is world famous. I took good notes on here and will be asking this surgeon about the specilized ct scans and exams that are used for exploring for hernias. I will demand that I am tested adequately to try and turn over as many stones as possible. I am also going back to PT to give it at least 6 sessions to see what happens... You never know, maybe she can uncover something or flat out help me. I will try before I get the stim.

I had an appointment with an Interventional Radiologist ( thanks to Meloria ) to rule out my pelvic varices as a cause of my pain. He examined my MRI from Dr Potter and saw absolutely no reason to believe the varices would cause me this much grief. in fact, he was more worried that embolizing them would risk putting me in more pain! He recommended that I move onto exploring other causes... So the good news is I can chalk it off my list. I wish that would have been my problem as its such an easy fix.

Somehow I am holding onto my job .. I am working from home still but there are times when I cant even do that - either I cant focus on my work due to the pain being so high or I just cant stand without crushing back/rectal pain. I was able to do it last year by using my special cushion I bought at Cushion your Assets and getting by on the medication.. This year is different because the problem has progressed due to my physical activity late last year when I tried to resume living like a normal human being. So, as part as my overall strategy to help myself , I will be scheduling an appointment with an Attorney that specializes in disability claims. I am proud that in my 43 years I have never used the government as a resource for income. Unfortunately, the way things are progressing I need to be prepared that I might need it..

Welp, thats all for now. Time to lay on my side and put my ice pack on my behind while the clock keeps ticking. I feel like I missed out on so much of my life just over the last year. I feel terrible for those of you that have suffered for 5, 10 years and even longer! God bless all of us, and I pray that we are all cured real soon!

Matt

Matt,

Taking a step back to check out a more accurate diagnosis sounds like a good plan. With your history of weightlifting it seems like a really good idea to get checked for a hernia.

That's great that you were able to get moved and that your wife is so supportive. I was blessed with a very supportive family too and I don't know how I could have gotten through my journey without them.

Good luck with your upcoming appointments and with getting disability for the time being. You don't have to think of it as something permanent but just to help you out temporarily until you find the right treatment for you.

Take care,

Violet

Matt, I think seeing a Colo/rectal doctor is a great idea. I am glad the interventional radiologist was able to guide you and save you from further pain. I am also going to be checked for a hernia as well, by a general surgeon that takes care of hernias for the pro baseball players in my area. I thought if its good enough for the pros, I want to see him too! Lol!

I hope you are able to get disability, that would take a lot of pressure off you. I know it must be twice as hard having PN when you are also the breadwinner. How fortunate to have such wonderful family/friends. . I am glad your move went well and your family is getting to enjoy a new house.

Sounds like you are on your way to figuring things out!