Thread: I don't know what to do!
06-14-2008, 05:28 AM #1
- Join Date
- Feb 2008
I don't know what to do!
I have been plagued with urgency and burning for over two years. Because of my symptoms I had an ultrasound which revealed a grapefruit sized complex mass in an ovary. I had a complete hysterectomy because of the fear that it was cancer we were dealing with. I thought for sure that my urgency and burning days were over but quess what? That's right, continued with a vengence. I have been through a series of 5 instillations with a cocktail including elmiron but no DMSO. I was somewhat improved. I've had about 6 weeks rest from the instillations (I developed a raging UTI three of the five times ) and now the urgency and burning are back again and driving me crazy. The uro wants to try 3 more instillations with DMSO. I can't take elavil because I took Tofranil once and the entire left side of my body went numb. The instillations hurt me alot and the soreness in my urethra is almost unbearable. I don't know what to do. Please talk to me!!
06-14-2008, 07:10 AM #2
Are you on the IC Diet? In another post, you said you had cut out citrus, but that is not the only thing that can trigger bladder problems such as burning. If you are not following the diet, I can not urge you enough to try it for a couple of months to see if it helps reduce your symptoms. You can find the link to the IC Diet at the bottom of my post in my signature.
Did your doctor use lidocaine to help reduce the feeling of irritation in the urethra during the instills? He can also prescribe lidocaine for after the instills to help you feel more comfortable.
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
06-14-2008, 08:12 AM #3
- Join Date
- Mar 2007
Have you tried ditropan yet? I had that nonstop urge when my IC started all of a sudden. None of the oab meds worked for me. Then out of desparation I was taking 4 doses throughout the day of ditropan xl. After about 2 weeks the sensations finally calmed down. It has never fully gone away, but now if I stay busy enough or off my feet, I don't notice the sensation much anymore. I started at a high dose, and slowly weaned myself down. I don't use it anymore. Another good med to try is Librax. It is a smooth muscle relaxant. I have a big problem with terrible urethral pain. Librax stopped it in 3 days. I was doing pretty good on it for a month or so, and now my pain is slowly creeping back up. I have been put on a second muscle relaxant called amrix. It is supposedly brand new and my doctor gave me a one week sample to try. It's too early for me to tell if both meds together are working. I hope this helps. I know how maddening it is to pee every 10 minutes around the clock for days at a time! Good luck to you.
06-14-2008, 03:02 PM #4
I've tried Marshmallow root drops for the burning and it really helps me. You can find it at most health food stores and maybe even at your local grocery store. I hope you feel better soon.
TeelaDX'd with IC 5/08
other Dx's~SVT: had Catheter
Catheter Ablation Aug 19,2010
Migraines, PFD, Hypertension,
Organs and Degenerative Disc
Disease, Kidney stones, Insomnia
Two bulging discs w/tears and osteo
arthritis in multiple joints in the spine
Current Meds:Elmiron 400 mg per day
Benicar Hct 40-25mg for Hypertension
Vicoden as needed for pain
Cymbalta 30 mg
I will lift up my eyes to the hills from whence comes my help? My help comes from the Lord, Who made heaven and earth.
"Be Kinder than necessary because everyone you meet is fighting some kind of battle"
06-14-2008, 03:16 PM #5
- Join Date
- Jul 2007
What meds have you tried? Look at my sig below and you will see all I take. I had that feels constantly and it was the worst. All of the meds I take in combination really do make me feel good more often than not. Also, the diet is a huge tool. Evan with all my meds if I eat a "bad" food I am in pain. Please try to be patient and keep trying things something should help. At first I really thought I might never get better and I did. I will say I hate all the pills but it is worth it. I am thirty and can not imagin how many I will take at 60 but I will wory about that then. Hey maybe by then there will be a cure. Let's prey there is.Daily Meds:
Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.
Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)
With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).
06-14-2008, 03:31 PM #6
hi dear i'm sorry that you are struggling with those symptoms! i tried instillations and could only do two because they didn't help and made my urethra BURN too! i started taking desert harvest aloe and while i didn't get the results i was hoping for, it realllllly did help with the urethra burning. within 1 week i didn't have any more burning. if you decide to try it, i hope that you have successes with it! also, i had read several things on this forum about rinsing after every pee with cool water. it really does help, ahh. i still never leave home without my "bottle" let us know how you are doing and when you find something that helps! HUGS!
06-15-2008, 01:56 AM #7
The Patient Handbook hs a lot of information about the various treatments for IC. You'll find the link to treatments at the top of this page.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
06-16-2008, 02:08 AM #8
Hi there. I am sorry your feeling so bad. I was also going to suggest you look at the diet, there are so many trigger foods that can be irritating. As for your instills, do you know if they are using lidocaine gel on your urethra before doing the instill? I know for me, they use it and wait about 5 minutes and then do the instill, that helps SO much for the urethral discomfort. Have you talked with your doctor about other med options for you? I know you can't have Elavil but there are alot of other meds out there that so help. It takes trial and error sometimes until you find what works best for you. Hang in there. LisaLisa
Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca
Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).
06-23-2008, 02:15 PM #9
I do my own Elmiron instillations daily. I use the lidocaine gel prior to inserting the catheter and also roll the catheter in the lidocaine gel prior to inserting it. The IC specialist put me on macrodantin 50mg for the first month. I have been doing them for 3 months now and have not had a UTI. They have Elmiron, cytotec,sodium bicarbonate and lidocaine solution. They have returned my life to normal. Maybe you could talk to your doctor about your symptoms. I hope that you are feeling better! Mary
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)