Thread: Hello out there....anyone?
10-04-2007, 01:03 PM #1
- Join Date
- Aug 2007
Hello out there....anyone?
New to the support group scene. Diagnosed with endo in '98 w' a ton
of lesions on my bladder and elsewhere. Another lap, psych recommen-
dation, 3 doctors and a cystoscopy later they finally diagnosed IC. I
also have had terrible joint pain since my teens(I'm 38)misdiagnosed with
lupus, then fibro. I do not have the fibro trigger points, but I do suffer
from exhaustion. I also have a huge pain threshold.
I was in remission for 3yrs following dmso cocktail, then I got pregnant.
I did heparin/marcain cocktails, that failed. they recommended that I terminate if I did not take elmiron orally.
I reseached and tried elmiron 1 pill instilled 1x weekly. worked ok along
with pt, accupunture, behavior therapy(mindfulness), diet, baking soda,
and prelief. I took 30 percacet per month until 3rd trimester. Despite
the pain and a bicornuate uterus, I delivered the love of my life, Elliott.
They discontinued the elmiron 6 wks after delivery and I got sick again
Tried dmso again, failed. Small respite after I stopped nursing Elliott
at 11months(lots of pump and dump due 2 meds and mastistitis 3x).
My insurance ended in Oct of last year. I have had 4 infections , inumber-
able flairs, and 8 er visits, since Dec.
I see my new Doc(2nd visit) on Mon. and a pain managment doc on the 31st.
I'm taking 30 mg elavil,cystaQ,dilaudid 2 mg,diazipam.5, and I'm not
making it. I have not had insurance for the past year, though
it starts in Nov.I know I'm depressed and tried lyrica for that and pain
and had a HORRRIBLE reaction. ssris also react poorly with my brain...
I know that there is a light at the end of the tunnel, I just can't see it...
I'm so sick and the pain is just too much right now. When i went to the
er on Sat my Doc did not want anyone but him to touch me. He is out
of town til Mon. He told the er doc not to instill me and to tell me to
see a pain specialist. Earliest avail. for pain manag. is 31. In the meantime
I'm taking the above meds. MY primary is ****** at the urologist's response.
I'm confused and in severe pain despite the meds..
10-04-2007, 01:08 PM #2
It sounds like you've been put through the ringer. Yes we are here and we understand what you're going through. Many of us are trying to get are symptoms under control as well with varying degrees of success. to the IC network there is so much support and information here. I hope you find the right combination of meds soon so you can get some much needed reliefChristine
I have been diagnoised for 2 1/2 years. I have tried every oral med as well as rescue instills and DMSO.
1st hydro 4/07 which showed no visible signs of IC but I had tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. I am still feeling the effects of the hydro two weeks later.
This 2nd hydro proved that because no treatments have helped me that my IC has progressed
Am being seen by Dr. Hanno's office in Philly
None of my medicine or treatments are important anymore. One of our best IC sisters Barb has been taken from us too early. She was such a great friend to me, I feel like there is a part of my heart that will always be empty now that she is gone.
Proud wifey of Shane, mommy of Griffin, and step-mom to Logan, Gage and Miranda
Also proud new mommy to the best Bullmastiff puppy on earth
10-04-2007, 01:20 PM #3
I am sorry to hear you are having such a rough time.TexasHoney
Let's keep praying for a cure.
IC Symptoms began in early 2001
Divorced : Sept 2002 (Partly due to IC)
Diagnosed with IC in April 2004
Most recent injury - Rupurtured Left Achilles Tendon
Wed Jan 28 2009 (Ice Storm Accident)
2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
Broken Left Ankle - July 2004 ( fell off ladder)
Broken Left Ankle (Again) - May 2005 (car accident)
Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)
Elmiron, Percocet, Pyridium, Elavil
10-06-2007, 06:25 PM #4
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)