Pelvic RSD
 

New to this group and am wondering if anyone else has Pelvic RSD? I know it is most common in limbs, but I hear I'm not the only one with pelvic rsd. I would LOVE to know how other women cope with this and get some support from.

In 2006 I had an appendectomy that left me with extreme pelvic pain, it was first thought to be a bladder problem [I.C] but that was not the case, after laying in bed on extreme amounts of pain killers for two years, not able to move and absolutely no quality of life, I had the spinal cord stim put in. Although this has given me quality of life, I'm able to go to school and almost function like a normal person, my life still revolves around my pain and my "good" days vs. "bad" days. Id LOVE to meet someone else who also has pelvic rsd, what treatments have worked for you? Opinions on the controversial ketamine treatments? If theres another woman out there with pelvic rsd what have you been told about bearing children?

I have read about it and I know there is a doctor in Arizona that specializes in ketamine treatment for women with pelvic RSD. Barby Ingle at the Power of Pain Foundation told me about him but I do not know his name. You might want to contact her if you are anywhere near Az.

The only one doing ketamine in AZ that I know of is Dr. Harbut in Tuscon. He does not take ins. for the ketamine. At least that was when I spoke with him last fall.

Welcome to the forum. I don't have pelvic rsd, but wanted to still welcome you to the group. :welcome_sign::welcome_sign:

Hello Betsykk
 

I just wanted to stop in and tell you welcome from Neuro Talk. I am not an expert in RSD, I just found out I have it in my ankle and leg, so this issue is fairly new to me too. There will be alot of information here to explore. There alot of people who have this condition, and will help you with some direction. I hope you are able to seek the best treatment you can. Welcome again, and you will make a few good friends here too. ginnie

No, it is not Dr Harbut. Barby Ingle gave me his contact info awhile ago..I have it at work but that was not the name she gave me. They are opening up a ketamine clinic. I know Dr Harbut has one as well so that is good news for all those in Az.

hello . I have RSD EVERY WHERE below the belt.. my groin past appendectomy scar and my scar for hernia repair are both pain points that connects. the groin. its constantly radiating.. though it has become part of my life and it is expected clothing is an issue as well as using the facilities.. I have a female friend who also has red in her pelvic and groin and same with her she has had ketamine treatment for her RSD and it failed to work in her groin and pelvic area. I am limited on my treatment so have very little info on ketamine personally .. but you are not alone in that issue. I wish you luck in your search.. I do know fla has a research center and uses ketamine and Ive been told that NY uses it in certain hospitals Im stuck in the comp circle.. but i know that a lot of dr,s using Ketamine only tale cash not ins..

painman,

there is a lot of dr.'s on the ketamine list. I would definetley call around, even if you have to travel a little. If insurance will cover that would be great, being that I understand it is very expensive.

Could you please supply me with the name of the physician who treats pelvic rsd? I have been suffering for five years I was just diagnosis full body but my private parts are twisted atrophied painful out of place.....etc I can not use the bathroom feel it the pain is so unbearable I can not stand sit walk...etc
Please a contact I did try reaching barby ingle..... Also if you have dr harbut contact info I've been trying to track him done also
Full body effecting organs just diagnosed after five years.... Burning atrophied wasting away
Thank u sooo much<3

AZ - Dr. Siwek , Dr. Turley will only see you for booster infusion,Dr. Lynch