Health Organization for Pudendal Education

Thank you Violet! You are so sweet! Things are a little better today, but the pain can be just too much some days. Will be seeing Hibner soon, I hope hope it helps.

Earl, I did not mean to get myself in your thread this much So sorry!

No problem at all Meliora ! I wish you the best on your upcoming Hibner visit.!

Thanks Earl! I wish you all the best as well!

Earl,
After reading your experience with the 3 injections I'm worried. I cannot put into words how it makes me feel to hear of all the suffering. I know you all feel the same and understand. I see Hibner in April and know they'll have me come back for injections. I developed PN(E) last June and went through hell trying to get help. I posted about losing my job and breaking of engagement (found out he's with another woman and she's a teacher-as I was) so I made plans to spend 2 weeks by a lake at end of July. I haven't been able to do anything but I'm doing this no matter the pain. Earl, how long was your wait for appointment to have injections after consultation? I also have severe SIJD and am trying to get that under control to see how much it has an impact on my burning. Houston said entrapment of perineal branch but since there is no 100% diagnosis, i'm hoping si joint relief will help.

Rea, the turn around from consult to injections with Hibner was three weeks for me. Not sure if thats the norm or they had a cancellation? I go very soon for the combo - blocks, botox, vein embolization. I am very nervous!

Enjoy the lake, you deserve it!

So sorry about your breakup. I hope you will be with the man of your dreams!

Earl, I did it again. Rea, you did ask Earl.....I just happened to be at Hibner's not long ago.....just chiming in.

Hi Rea,
I think the injections were scheduled for somewhere around 5 weeks after my first visit with Dr Hibner . I don't blame you for worrying about the injections but they do help a lot with the ever elusive diagnosis .I'm at the next step -surgery- and I'm scared to death .I am glad to have done everything possible diagnostically to help me make the right decision now and yet I still waver. How did the Houston team come up with the perineal nerve diagnosis ? I was looking at my 2 year old neurography report yesterday and and it mentions that my right pudendal nerve shows compression anterior and posterior to the Alcock. I don't know if doctor Hibner had looked at that report or not .I wasn't aware of it at the time but maybe that is why he is confident of the diagnosis .
Meliora, it feels good to know people do read my thread so use it all you want. It is for that purpose. Many of the things discussed on this forum would be hard to talk about in person so it feels good to be able to be able to talk about them here even with people that we will probably never meet.

I just looked and it was only 3 weeks between first visit and injections.

Thanks Earl (and Meloria),

I can't see me going back in 3 to 5 weeks. Being out of network sucks! I was so hoping that my SI was going to be improved by this 1st visit. Being on the gabapentin has given me some improvement but not enough to work, socialize, etc. I can be at a low pain level and then boom..where's the ice pack? I even have freezer burn on the inside of my thigh! Yes, I used a wrap but that part wasn't covered. I haven't had sex for almost 8 months...just the thought makes me...well, you all can finish that. Getting off course- the radiologist who read (trained by Potter I believe) saw hyper-intensity of the perineal branches, stating right side worse. He didn't
say anything about anterior or posterior. I wish he had been more specific or I had bit the bullet and paid for Potter. Could have but I discovered online shopping...lol. Some people eat, I shop. He did say that the dorsal branch was unremarkable. No detail about my ligaments either.
Just booked my reservation and ended up having to go alone this trip. Hope I can do it. If there is entrapment what choice does one have? Surgery or live with the pain. I'm nervous about my trip and it's just a consult so Earl, I can't imagine what is going through your head right now. I have time before I'm at the crossroad. God Bless and thank you for all the answers.

Rea

I did meet a Dr Catherine Sullivan with the University of Washington in Seattle.She was just with internal medicine where you start the process of patient evaluation. After giving her my MRIs and history she initially recommended that I see a neurologist who would be able to confirm if I had PNE or something else. I knew better than to think that would do me any good and decided I'd just forget about anything further with the U of W. Well last night Dr Sullivan called me herself telling me there is a Dr Claire Yang who is a Urologist/Neurologist at the hospital who she thinks I should see. Im not sure I'm going to because I just want to get the surgery. What else could cause a numb penis except the pudendal nerve. Maybe dorsal but I'll wait to to down that road . I just thought if there are others who are close to Seattle you could try this Dr Claire Yang. After googling her it seems she is informed on PNE.I will say that the PT at Olympia Physical Therapy , Jake Bartholomy , didn't know very much at all about PNE. I saw him too while I was already going 7 hours to Seattle and his office was only blocks away from the U of Washington Hospital.

Thanks again Earl! I agree, having others to dicuss these very personal but painful issues is so helpful. I have learned a ton on this board! I agonize with you about having to decide on surgery. I am getting very close to having to do that, quite scary for me. If you are near to where Dr. Yang works, do you think she might have some ideas for you? I understand being tired of seeing medical people who do not have a clue, but you never know. I have seen quite a few doctors myself. UGH!

Rea, that stinks that you are out of network. Ouch! PN is so expensive with all the travel alone. You made me smile with the shopping comment....I do like shopping for my kiddos! My mom drove me to the store last week. Normally, I just feel too bad to care about buying for myself, but my last Hibner trip made me decide I could use a few things (they were actually useful!) Good luck with your upcoming Hibner consult, I hope you get to see Loretta as well.