What to Expect with Dr. Sheldon Jordan and Need Advice!

[ChaseJordan92]

Hi All,

I have my first appointment with Dr. Sheldon Jordan tomorrow March 14th. My appointment is $620 for 1 hour. I have great insurance but these pudendal nerve doctor's are out of almost all networks. I have been diagnosed with IC and / or Prostatitis. Through research I have learned this nawing pain in my pelvis area could be nerves. Does anybody know what I can expect at this appointment? Will the doctor administer any tests or exams? Any questions you think I should ask?

I would like to talk to someone about this pelvis pain. If you don't mind talking please give me a call at: 619 823 9053

Thank you,
Chase

[janetm2]

Hi Chase,
My first appointment with Dr. Marvel (PN/PNE Gynecologist) was a review of my symptoms, history and what I had been through before coming to him. Also, a physical exam and he asked if I wanted nerve blocks. I said sure might as well get started. The nerve blocks were unguided so he didn't really hit the mark but it did provide enough to give a bit of relief and then send me for the guided blocks for a better diagnosis. Not sure if that or the next appointment he sent me for MRN to rule out other stuff. Good luck and hope he can figure out what is going on and treatment.
Janet

[ChaseJordan92]

I'm still not sure how they determine the difference between PN and PNE because they are two different things. Is it really a guessing game or is there a 100% diagnosis tactic that is used? I am still very optimistic that it is not my pudendal nerve. I do have annoying pain that's there most of the time, but I can work efficiently, play with my kids, exercise, have sex, go to the bathroom, pretty much do anything I want. I am starting to realize that there could be several different phases to PN and and each phase has different pain types. Reading people's stories on this website have quite frankly scared me. It seems like most people can't get out of bed. That's not my case at all, I just have this annoying pain in my pelvis thats been there for 2 years now and it comes and it goes. I would like to think that there's a lot more people out there with symptoms like mine, but maybe those symptoms aren't bad enough to force people to this website to leave a Blog and ask for help. What I'm really trying to get at or get to with my visit to dr. Sheldon Jordan is whether or not I have PN and if I do in fact have PN I would like to know what his thoughts are about me healing on my own due to the fact that it's really not that severe right now compared to everyone else's stories that I've been reading.

[janetm2]

Chase,
unfortunately there is no 100% diagnosis especially for PNE! they say the only way to know is to do surgery to look at it. So that is when it was confirmed for me. The dr did say he does not do surgery on just anyone and has to feel you are a candidate, between my history the tests and quality of life he decided I was a surgical candidate for PNE. It does appear there are probably more PN cases or some other issue that would be maybe more of an aggravation of sorts and like you may not be as severe. Good luck and let us know what he says.
Janet

[ChaseJordan92]

I had my appointment with Dr. Jordan today. He confirmed that the pain could be my pudendal nerve but he is not %100 sure. Next time I have flare up he told me he wants to perform a nerve block with an anti inflammatory extracted from my own blood. This is called A2M http://www.cytonics.com/products/a2m/.
Has anyone done this type of block?

Dr. Jordan told me that symptoms of PN typically get worse from bad treatment and unnecessary surgeries, neither things I have had. I feel optimistic but still have questions. Also, he gave me a topical cream prescription. My next move is the mind body approach.

[Mod 15]

Hi ChaseJordan92,

The pudendal forum is open to all, therefore, we highly recommend NOT to post phone numbers or addresses in the forum threads. We suggest if you want to have other members contact you is to ask them to send you a private PM and then share your contact information in the private PM.

Mod 15

[janetm2]

Chase,
it sounds like Dr Jordan is being cautious, we do try non-invasive such as the cream and mindbody. I did not have the block you mentioned but maybe someone else can give you feedback.
Janet

[Violet M]

Like Janet said, there isn't a test that gives a 100% accurate diagnosis between PN or PNE but there are symptoms that can point in the direction of one or the other. For instance, the Nantes criteria lists unilateral pain as pointing in the direction of PNE. I think it's important to try conservative therapies before considering invasive treatments since it's hard to diagnose.

I have known people who had mild symptoms of PN that come and go. It doesn't cause everyone to be bedridden.

Violet

[ChaseJordan92]

Thank you for your responses. It is such a blessing to have people with your knowledge and passion guide those of us that are new.

[nonsequitur]

ChaseJordan92, If you are contemplating the mind body approach, you cannot just "try" it. It won't work. You have to completely immerse yourself in it and relentlessly work at it. You also need to forget about the pudendal nerve, stop scanning your body for signs, and stop searching for medical answers. As long as you are fixated on a physical cause to your pain you will unfortunately remain in pain. If you do something drastic like surgery, the pain most likely will eventually morph or move to another part of your body --which will send you yet on another wild goose chase.

Sarno says that 80% of chronic pain cases are mind body syndromes.

It took me 2 years of dedicated effort to get rid of PN pain. It works but it is not easy. Ultimately nobody but yourself can get out of this state.