Tweet
Pain MD is considering it, anyone? I am leary but trying everything. Any advice would b great.
-
I am blessed to have an Indiana Pouch now
IC since childhood, finally diagnosed at 31 yo
PFD/Pelvic Pain,SI joint and LBP
Low Back Pain s/p spinal fusion at 19 with more nastiness in back
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
Hysterectomy 2/3/12 w one ovary removed
Dry Eyes
L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
Still have issues, still take meds.
I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:
-
I am afraid I am not familiar with this one. -
My pain clinic made me do several of these. Personally I got no relief from them. It actually caused me more pain and stress. It traumatized me because the light sedation didnt work so i was fully awake and felt it all. it hurt me pretty bad. I just had a horrible experience. I say try it though to see if it will help you. I told the clinic I could no longer do anymore because they were to painful, expensive and getting no relief from them. They immediately dropped me as a patient and stopped my pain meds all at once. it was horrible. They wanted to keep doing them until they worked, I thought after 4 and nothing why would I keep doing them? Message me if you want to talk more. I dont want to scare you, this was just my experience.
was finally diagnosed on 3-19-09 after 7.5 years of misery. 
Diagnoses
IC
PFD
IBS
Depression/Anxiety
Lumbar Lordosis
Now getting tested for MS on Jan. 27th. day before my 30th bday!
Meds I'm on
Ditropan ER
Elavil 25mg -just stopped this one it wasnt helping
glucosamine vitamin (for joints, my knee)
Prelief, when needed
Vistaril 25mg
Valium
Zoloft 100 mg
Pyridium-makes your pee bright orange!
Birth Control
OTC Allergy meds
Fentanyl Patch for pain, 50mg
Oxycodone for breakthrough pain 5mg right now but need to go up!
Had to stop my PT due to insurance
TENS unit
Im really considering the Interstim but doctor isnt on board yet with it. Im also in process of filing for disability. *update is I had the Interstim trial and it worked well for me. The perm. surgery was scheduled but before I could get it my Urologist stopped being my doctor for unknown reasons! It really makes me angry. So I am still searching for a doctor to do the Interstim on me. I am in the appeal process with disability!*
Meds I've tried since being diagnosed (there have been so many over the years though)
Sanctura, had to stop taking after 2 days, horrible retention
Enablex, just very expensive
Librax, its expensive and wasnt sure it was helping me
MS Contin, made my joints very stiff!!
Did 4 weeks of Elimron instills, didnt help at all!
Elmiron, took it for 2 months and I was losing way to much hair so we stopped.
Comment
-
my new pain doctor suggested a hypogastric plexus block but my insurance won't cover it. they said it has only been proven to show relief in cancer patients. I have had other nerve blocks and I had about the same experience as you. They were horrible...painful...and didn't work at all.I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.Comment
-
The PM doctor that I saw today (my regular one was out on family emergency in his home country; so I saw the "head doctor" who runs the clinic. He mentioned this type of block- (along with the last injection for my back-another story there) he asked me what am I doing now for my IC and I told him having hydros every 6-8 months-if I had this would it help me for a longer time period. He said lets just stick with the injection for your back...so seems to me that this don't help as much? any comments?Comment
-
Block
I saw my pain management doctor again Tuesday and after I told him that my insurance wouldn't cover it he seemed to not talk so highly of it. We mentioned private pay for it or appealing again but he changed from talking about how great it was to saying it probably wouldn't work. This really made me mad because I have spent the last 3 months in and out of the hospital fighting with my insurance company to try and get it when I could have been moving on to something else. So I guess my doctor basically said the same as yours.I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.Comment
-
i'm having this done next week. i was kinda nervous, but after reading this thread, i'm a little scared now! thankfully it's covered by insurance, but i'm more worried about any residual pain. i can't afford to take time off to be sedated, so i will be awake. any further guidance would be appreciated
my experience with classical IC:
- right side pelvic pain (also minor frequency issues) since 8/6/11
- endometriosis discovered 9/1/11
- hunner's ulcer discovered 11/29/11
i also have sporadic lower back pain and tendinitis in my right wrist.Comment
-
well that was one of the most painful experiences of my life. i wonder how much easier it is with sedation. still though, it's fairly quick, so i'd still opt out of sedation to avoid the 7 hour fast.
unfortunately though, this didn't work for me
i was in a lot of pain last night, but feel ok today. kinda tired and sore, but not excruciating like yesterday. guess it's back to the drawing board, at least i tried!
my experience with classical IC:
- right side pelvic pain (also minor frequency issues) since 8/6/11
- endometriosis discovered 9/1/11
- hunner's ulcer discovered 11/29/11
i also have sporadic lower back pain and tendinitis in my right wrist.Comment
-
I had one of these and while it didn't help, it also wasn't very painful for me at all (I had no sedation, just local lidocaine injections prior to the main needles being inserted). I would say it's definitely worth a try, my pain doctor had said he had success with ~ 50% of his patients.
AddyAddy
Symptom onset: 9/2010
Diagnosed: 11/2010 via urodynamics, voiding diary and symptoms
Current Treatments:
Botox to bladder trigone (not going well at the moment - retention issues with minimal to no symtomatic relief as of yet)
Biofeedback
IC Diet + gluten free
Physical Therapy (since January 2011)
Valium suppositories
Xanax
Tried & failed: tricyclics (severe retention), atarax (retention), gabapentin, Cymbalta, Lyrica, Trileptal, Topomax, Lamictal, Keppra, Vicodin, Methadone, hydrodistention (waited over a year before willing to try this), elimiron/lido/sb instills, Whitmore cocktail instills, Uracyst instills, PTNS, acupuncture, electroacupuncture, low-dose naltrexone, nerve blocks (impar ganglion, superior hypogastric plexus, left sided S2-S4, caudal), Botox to pelvic floorComment
-
i'm curious as to what makes the success rate. is it that the injection may not be done properly and that's why it does not work for some people? it just seems odd at how hit or miss the success rate is.my experience with classical IC:
- right side pelvic pain (also minor frequency issues) since 8/6/11
- endometriosis discovered 9/1/11
- hunner's ulcer discovered 11/29/11
i also have sporadic lower back pain and tendinitis in my right wrist.Comment
Comment