I will help you try and find a dr. who specializes in pelvic rsd. Does it have to be in AZ?

[QUOTE=Lovelife;897815]

I hope someone on NT will be able to help you find a doctor in AZ, or anywhere in the country who specializes in RSD in the Pelvic area. I am so sorry this has happened to you. I prolapsed about 10 years ago. I can't imagin having the complications you are having to deal with. I will keep you in my thoughts and prayers. Just when I think my own problems are hard, I find a good soul like you. Please stay strong. I really do have a prayer list, and I know there are folks out there that can help you. This site will support you while you go forward to get help. ginnie

AZ - Dr. Lynch's office said they would be glad to see you. I have also send my pm and email asking if he knows anyone who specializes with this.

Dr Hibner
500 W Thomas Rd Suite 600
Phoenix, AZ 85013
(602) 406-6017 (Office)

He is an expert on pelvic RSD!

Can dr Donna Thomas also help
I have brown spots all over labia which is so small
Red closed vagina
Cracked raw labia on outside so painful
I am in agony
My oncologist rubbed the spots saying just dry skin
Now next day I'm torn there and shinny red skin
Pain! No feeling of urination burns! I cam not deficate correctly then a mess because all is swollen

I'm so sorry but can Syracuse er help....my docs are turning away

I sure hope you can get the help. What you discribed sounds like torture. Your doctor did not have a soul to turn you away. Every human should be allowed to have some normal body function, especially in normal elimiminations. Seems so unfair. I prolapesed years ago, and could not "go" normal either. It was horrible. Please let me and NT know if one of those doctors recomended can help you. You are in my prayers. ginnie

You will probably need a gynecologist or a dermatologist to refer you to the pain mgmt. I would certainly call the doctors and get in asap so that you can get the help you need.

Lovelife...just reading about your condition makes me hurt. I can't even imagine the pain you're in or the fear that goes with it. I will definitely be keeping you in my prayers.

bel...thanks for staring this topic.

I've been searching the internet trying to find out more about vaginal RSD. I'm sooo hoping I don't have that, and that the burning, scraping pain there is truly a bladder issue or low estrogen issue as my GYN doc thinks...I go see him the 2nd for the low estrogen issue. I had a hysterectomy almost 6 years ago (pre-RSD), but my doc left 1 ovary hoping to keep estrogen production. A year ago yesterday (post-RSD) the other ovary had to be removed. My doc knew about the RSD and my concern that the surgery could cause spread (RSD started in left wrist/hand in 2006), but it was necessary to remove the ovary. I had some incision bleeding issues in the first few weeks from the belly button incision which had to be repacked daily to stop the bleeding, and blood pooled in the abdominal area (but not considered internal bleeding)...are was dark burgandy and purple, almost black. I knew RSD had spread to the abdominal area, but was in denial for a long time. Also, I still have a lot of pain inside, as if the bad stuff wasn't removed...could be scar tissue. But the burning vaginal pain that feels like coarse sandpaper scraping across an open sunburn is not fun. Urinating isn't always painful, but wiping usually is, washing usually is, sex always is (my poor hubby). The thing that's difficult is that it could be low estrogen, bladder leakage, RSD, or all of those combined. Any thought? Anyone else have those symptoms?

[QUOTE=betsykk;899853]You will probably need a gynecologist or a dermatologist to refer you to the pain mgmt. I would certainly call the doctors and get in asap so that you can get the help you need

I'm getting really discouraged my Gyn/oncologist examined me Friday-slight touch-she insisted I needed ketamine before anything else!!! This morning, I got a call to do so tomorrow, but I have reservations. I looked at my bladder this afternoon because it was burning so...usually I feel nothing.... Not even the signal to go. It hAs red welts on it and trying to open my shrunken vagina was so painful since it too is more irritate red welts twisted atrophied and yet another yeast infection and the labia is bright red shinny. My petinum is so thin down further.... Standing lying typing touching anything is sending pain throughout my body. Passing gas is awful...10 pain throughout body.... Thinking vulvidynia told my Gyn and now ic? All related to possible pne illioinguinal obterator entrapments. One year ago just had excruciating rectal pain did Pt killed perinum which began to descend with each bm...5 years of pain....sweating as I type this due to pain...had a yogurt bloat ab/pelvis like a rock...pass gas kill typing kills......
I am a wreck......my Gp and oncologist say do ketamine....oh
Pne perinum gone mucosal prolapse inside outside vagina bladder atrophy shiny sores...painful to do anything.....
Where's sanity....
Love to all
Just wanted referral to pm in Syracuse
Couldn't get to Hibner can't get up
Wanted MRI for years and all I could get was blocks that would just give perinal relief for a few weeks
I'm confused
Ketamine and bladder complications? Anyone?
Ketamine and descended perinum destroying at least Pudendal nerves and inability to pass gas elimated because rectum is so torn up raw ?
No meds touch this....it's gone too far and now they tell me to begin with ketamine tried to get for year, but now bladder and big perinum issue!
Any thoughts all my dear friends....lovelife; miss it
Love to all.......tomorrow feels like doomsday yet it was what I'd been looking for and now since a trip 2weeks ago so many bladder Colo issues
Oh the sacral nerves

Ginnie
Bless you all
I developed more issues yesterday
Tons of yeast?
Red sores on my bladder
Painful urination
Red swollen labia more shinny and a white plaque coating
So painful to pass gas
Perinum down more
Can't touch
My Gyn oncologist wants me to do ketamine tomorrow!
I think I have entrapments for sure because my perinum and si joint and hip and pelvis and what's left of my vagina are killing me
I can't eat
I tried yogurt bloat hard as a rock
Passed gas hard explosive sent pain throughout my body
I believe my perinum is going to rip so thin so atrophied shiny red like all below inside and out
Believe I've develop vulvidynia and ic
My rectum is so raw red out yet my perinum below streching my vagina closed

I replied to Betsykk because I was left to make ketaime descision overnite!! Gp gone oncologist says ketamine befor all else......I'd been waiting for it and now after five years a weekend of horrid pain also in small bowel actually entire system
I burn just typing
I want my body back
I just wanted to speak to a pain specialist who understood the pelvis
Could only get Pudendal blocks but was told years ago they weren't enough now they may give perinal relief for a week but this was months ago and I called the anthestiologist who said my pain sounded too severe to do blocks
Yet the doc thought pne 12 blocks imaging surgery....then told no by neurologist full body crps....didn't get female area though....
Perinal descent and losing that part is what drives my pain
Ketamine for nerve entrapments? Ketamine for severely descende untouable perinum rectum vagina(almost closed swollen shiny raw sore atrophied) ? Ketamine for extreme digestive issues? Body that is stone and downtown 100lbs? Can't see most of time? Lying down hurts. Standing just to make it to the bathroom..... I get allthats happening I feel the prolapses.... The Pudendal obterator illoingunal ....all the nerves in my pelvis si joint lumbosacral spine in screaming pain shooting thru me.....
I can't believe my new symptoms over the masters days...from the light touch of my oncologist...could only use her pinkie finger to inspect me touch so lightly....oh the pain
And I can't eliminate.....
Ketamine? I wish my bladder hadn't acted up -remarkable
I was having so much fun with my family and students five years ago
A small pinch a touch of cancer has led me here
Gladyou are out there
I wish I had you all around me now
You would all know
I'm too complicated for my doctors-I get that, but I wish they'd listen to each other-my Gp is gone!! My oncologist insists on ketamine, but doesn't now about effects on ic/bladder infection bowels kidneys digestion perinum....just wants me out of pain; bless her
Bless you all
keep your ideas coming....big day tomorrow; can't believe I'm wondering about it it happened in a day! Over the weekend my doc got the ketamine....yet the bladder now
Ok no more blabbing; awaiting your replies