New - Need advice/suggestions to seek treatment

[Paula]

Hi,
I have been reading posts from this forum and would appreciate any suggestions. Where do I begin on my quest to seek treatment? I first began reading about PN about 2 years ago and feel that based on your stories this might be the cause of the pain I have been experiencing for the past 7 years. Like many of you, I have seen numerous practitioners, undergone multiple test/procedures and have been diagnosed with minor issues that have never fully captured my complaint and the problems have only gotten worse. Where do I begin? Which doctor/team should I contact first? How to I get in to see them and will it take months? My chief complaint is pain when sitting and rising from a seated position Also, driving more than 15-20 minutes is quite painful. Chronic constipation. The pain doesn't resolve immediately when I stand or lie down. The length of time to recover is usually proportional to the amount of time I have been hurting. The pain has progressively gotten worse and seems to have moved a bit from the initial onset. It is very deep inside.

Physicians I have seen:
Gastroenterologist, 3 Gynocologosts, Orthopedic, 2 Anesthiologist/Pain doctors, Physiatrist, Pelvic Pain specialist

Diagnoses - Levator Ani syndrome, anismus, tight pelvic floor, spastic pelvic floor, degenerative disc disease, mild radiculopathy, overian cysts, uterine fibroids, pelvic adhesions, coccyxdynia, ischial tberosity bursitis. hamstring insertion tendonapathy, ...

Diagnostic and Treatment protocols:
Lumber and Sacral MRIs, Xrays, colonoscopy, defecagraphy, full body bone scan, EMG and 3 rounds of Physical Therapy
2 Epidural Steriod Injections L4-L5
2 Caudal Epidural Steriod injections
3 ultrasound guided injections into Ischial tuberosities and hamstring insertion area
1 injection under fluoroscopic guidance
2 more u.s. guided injections
Lidocaine injections through vagina (OUCH!)
Hysterectomy (& both ovaries) lysis of multiple adhesions

Medications - I DO NOT want to live medicated. Tried Lyrica, Celebrex and Baclofen not effective
Infrequently use Flexoril,Skelaxin, Ativan
Currently taking Wellbutrin, Cymbalta, Adderal, Ambien and Lorcet

Please tell me if you have a suggestion for me. Dr. Hibner sounds like the one that I would like to see but would I have to go through 3 more injections 6 weeks apart and physical therapy as stated on his website? Traveling that far for PT may not be possible. I live in Alabama. I see that Dr. Renny does phone interviews. Is that a good idea? I dont want to jump to a conclusion and end up in surgery if there are other alternatives. If I get Dr. Potter to perform the MRI, would all of the other doctors refer to it or would I have to get another one done by their team?

Thanks for any information you can provide,
Paula

[nyt]

Welcome Paula and so sorry to hear of all your troubles. If you want a diagnosis for PN you really should see one of the PN dr.'s for confirmation. This forum is a wealth of information on the PN dr.'s and only you can decide which one you think fits you best. Dr. Hibner probably has the longest wait to get an initial appointment so if you really don't want to wait months you should look to some of the other dr.'s. You can find a PT who specialize in pelvic floor dysfunction in your state. This would be a good place to start while you figure out which dr. you want to see. Below are some link to dr.'s in Alabama who specialize in pelvic

http://www.ic-network.com/md/listings/Alabama.html

http://www.pelvicpain.org/providers/find_provider.aspx

[Violet M]

Hi Paula,

These are the 2 PT's listed on our website who treat people with pudendal neuralgia. There may be more in Alabama that we don't know about. There are certain types of PT that are appropriate for people with PN and other types that aren't.

Rachel Butler, PT
Brookwood Medical Plaza, Suite 250
513 Brookwood Blvd.
Birmingham, AL 35209
Tel: 205-802-6992

Katherine Wiley, PT, OCS
Physical Therapy
790 Montgomery Hwy., Suite 108
Vestavia Hills, AL 35216
Tel: 205-822-7607
Fax: 205-822-7614

It would be reasonable to have some phone consults with several of the PN doctors before you go traveling across the country. You can go to the USA section of the forum to find the contact information for many of the PN doctors. During these phone consults you can ask if they would accept Dr. Potter's MRI report. My guess is most of them would but some of the PN docs want a particular type of MRI so if you have a phone consult with them you can ask what type of MRI they require.

[Paula]

NYT and Violet,
Thank you so very much for responding to my post! I have never been on any forums and was a little anxious about this kind of thing. I am excited to see that there are PT specialists in Birmingham. The Physiatrist and Pelvic Pain doctors I have been seeing are also there. I have a call into the Pelvic Pain doc and hope to have appointment soon. I am going to print the information from this website and see if thinks this is a possible explaination of all of this pain.
Thank you so much for posting your experiences and suggestions!!!
Paula