Female Complex Pelvic Problems need desperate help. I live in Georgia too.

[Lindsey_D]

Hey, I wonder if anyone has had experament like me,or has any advice. 2 years ago I had random pain in my bladder/pelvis it came and went so quickly. Well, last summer I got a UTI and ever since then my bladder always feels full/hurts. Drs. say Interstitial Cystitis. Within 6 months time, it progressed to tingly in my labias, acheing or pins and needles in my thighs and ankle,butt,hip,sacrum,and persistant genital arousal disorder. Supposed interstital cystitis although no one amhas officially diagnosed it. Now a looks like Pudendal neuralgia as well. Yet no one can find the source of the problem. If you cant find the source. how can u treat the problem? If a nerve is compressed,or entrapped, no matter what meds u take,it will not "un do" any entrapment. The arousal goes deep in vagina,very back,near cervix. Im now a patient at Emory in ATL, but even a big city like this there arent great experts I can find to deal with this. Ive seen urologists,gynecologysy, gynecologist specialist,neurologist,naturopathic drs,and chiropractors. There is a small hemangoma on my sacrum on the bone,but no nerve impengement.

[Hidden]

From my experience, it sounds like a combo of IC and PN. It really is a horrible combo. So sorry you're going through this. I know exactly what you're going through and the desperation that goes along with it. Few thoughts... I'm currently in pelvic floor therapy and it has helped. It's kind of like taking grains of sand off the beach, BUT even the smallest improvement is welcomed. The biggest benefit has been mentally. The therapist really helped me understand "why" it's happening and just having validation that it's not all in my head made a world of difference. As for PN, it takes one of the very few experts in the country to actually diagnose PNE properly. It can be done with injections directly into the nerve. If the injection helps, most likely it's an entrapment. Surgical intervention can be tried next for decompression. It's a long road, but you are right, no medication will untrap that nerve. Are you able to travel? If so, the Cleveland Clinic and University of Arizona both have pelvic pain centers. I'm sure there are others as well. As hard as it gets, please just know you are not alone. It's horrible and I truly hope you get some relief.

[Paintalk in reply to Hidden]

I need that help please someone tell me where to go

[Hidden in reply to Paintalk]

Hi paintalk. In response to where to get help... not sure where you live so I recommend searching "pelvic floor dysfunction" and your city and/or state and you'll find the experts to start with. You can also search "pudendal nerve" and your area to get results as well.

[Ladydidi]

Hi There!

Two good sites Id suggest to research info (maybe you can find something?) I know, it gets harder when no one can help.

Www.ic-network.com and

Pelvic health and rehab (Google) you find link. Look at all they're blog posts, there's a wealth of info there. They are pelvic floor pts, I saw one of the owners here in calif, Stephanie, and she's wonderful. They might have a referral for you there?

Hang in there!!

Diane

[beentheredonethat]

Lindsey D. I am so sorry to hear of your difficulties finding someone to really help you. I also live in Georgia and everyone assumes a city the size of Atlanta has all the specialist you could possibly need and I KNOW that is incorrect. I do not know how or where you would be looking but if it was me and I could get a referral name from any of your doctors I would check out the doctors at Piedmont and Northside. Believe me I have no allegiance to either but now that Emory is even St. Joseph's you have a LOT of teaching hospitals caring for you when you chose Emory. Teaching hospitals may eventually get the diagnosis but it has never been a direct route for me by any means. I do wish you luck.

[Shanellope93]

I agree it sounds like you could be experiencing pudendal nerve issues. They can be caused by a spasm of the pelvic floor muscles. it was mentioned research pelvic floor dysfunction and see if there are any specialists in your area. Dr. Hibner in Phoenix is one of the best. He does botox injections which can be very helpful (saved me) if you have super tense spasm of these muscles. He also involves a great PT who specializes in manual therapy of the soft tissue. Could be very helpful for you. And if those conservative measures don't do it he does surgeries like pudendal nerve decompression. He's the best in that. Hopefully you can find specialists in your area. Until recently there was no one where I live and I had to travel. Good luck.