Interstitial Cystitis

[livingwith]

I’ve finally been diagnosed with IC just recently but it is something I’ve lived with since I was a child. Test after test just like you I thought I was going nut’s. I also have type two diabete’s, arthritis and the list goes on. I have been prescribed Elmiron for the IC after reading up on the side effects of this drug and it’s actual chemical make up I have decided not to go this route.
I’m going to try a few experiments of my own, I’ve lived with the...Read the full article

[giapooh]

why don't you talk to your doctor about getting the Interstim Implant? It has an 80% relief in pain factor...go on the Interstim implant website or Medtronics and they will send you info. and a free DVD explaining the 2 part procedure. I am having my first part done on July 9th. This is living in hell!

[giapooh]

It's Giapooh reprting on my test surgery for the Interstim Implant. It was awesome. I had relatively no problems urinating and very minimal pain. I did not catheter once. It was the best week. When he took the wires out of my nerve the pain returned the next day and has gotten worse ever since. I am having the Interstim Implant on August 5th and will report to you guys on how it went. Apparently, My doctor and nurses who are wonderful, say I'm the "worse case" they've seen. I also take elmiron, prerelief, Vicodin, (a godsend) and a tranqulizer to relax my muscles. I also catheter many times daily and drink distilled water. Please pray for me. It could be an option for you all too. Talk to your Urologist!! I'll keep you posted during my recovery. I'm not saying it's for everone but that's what the test surgery is for, to see if it will help you and by the grace of god, mine did. My thought and prayers are with all of you...no one can possibly ever know this pain except us!! Regards...
giapooh

[giapooh]

Hi Elizabeth,
You poor thing, my God you have enough to deal with with physical pain. I wanted to tell you I was skeptical about Elmiron also but not a hair has been lost from my head since May 30th. I also follow the IC Diet..read my latest post. I lost 16 pounds since being diagnosed with this. I thought berry's and fruits were out of the question because it irritated the bladder lining? I follow the diet exactly except I drink my morning coffee and take a prerelief along with my other meds. Do you have pain meds and are you seeing a Urologist? If you're not happy with the one you got, go on line and find one who specializes..I'm sure they are out there...one who could really help you. All my best to you.
Regards,
giapooh

[ce36]

Hi there,
this has been very helpful to me to read about your results. I'm still recovering from endo surgery where they removed endometriomas, adhesions and cycts from my ovaries, bladder , rectum. Essentially all over. the pain was excruciating. Now they think I have IC but the specialist is out of town for 3 weeks.


Plz let me know how your implant went.
CJE

[giapooh]

Hi!
My Interstim Implant went very well! It was implanted on August 5th. Since then I have not catheterized myself once and have no problem urinating and now have little to no pain! I know that a lot of people are leary about this kind of thing because it is an imlpanted device in your body and that can be scary for many people. A good urologist should suggest this to you as well as Elmiron, a med that coats the bladder. I would suggest that you go onto the Intercystial websiteto gather info. If you are diagnosed with it I would join. They send you a lot of info and then I would go to the Medtronics website and ask for info and a free DVD about the implant procedure. When it was suggested to me, i immediately said "yes, let's do it"! You are asssigned a clinician from medtronics whom you can call 24/7 with any problems related to the device itself. I have had no problems. The device lasts for several years and should be replaced around the 7-10 year mark.
Good luck and keep in touch with me!
Lynne
PS
There are also several books online and through the Intercystial site you can purchase. You need to follow a certain diet ommiting foods and becerages that can irritate your bladder.

[ce36]

Thank you so much for your response and I'm so happy for you! This morning was such excruciating pain that I cried through it, no pain meds worked and the pain was so bad I felt like vomiting. My doc says he's pretty certain these are the signs of IC since I meet each of the symptoms. The last straw is having the actual procedure done where they formally diagnose it as such w/the scope. The pain was so bad that I was up all night and had to cancel all my clients today. I can't imagine this continuing. I've been experiencing this since Aug. and although the other surgery has alleviated pain regarding endometriomas, cysts and adhesions on my organs, the bladder is the last to treat and I can not wait!!

Can I ask you who your doctor is and where you had the implant done. Half the battle w/these specialized treatments is finding an outstanding specialist and surgeon who have done many and done them well. My surgeon for my endometriosis was Dr. Anthony Luciano, one of the best!

Possibly through your doctor, he may have a colleague near where I live, in Connecticut.

Appreciate your email and I'm so happy for you. That's almost 2 months for you w/no pain, correct? I can't even imagine that at this point but it's a light at the end of the tunnel.

Best,
Caroline

[giapooh]

You poor thing! I know the horrible pain of it all. Drink a glass of water with 1 teaspoon of baking soda, and buy Prelief at walgreens, it takes the acidity out of foods for people with bladder troubles. Don't just buy any acid product buy prelief. I found out about it through the Intercystial Cystitis Association web. My doctor is Dr, Daniel Jaffee with RI urology. BUT, if you go onto the Medtronics website, they have a place where you can find a doctor who performs the procedure. Of course, make sure you have it first. If you do, they should put you on Elmiron. It coats but doesn't fix the condition. It takes about 3 months to kick in but be patient, lots of people want results right away. I also take supplements which can be found on the ICA web also. (not found at nature food stores, only through the web). Stay away from anything acidy, fruity, soda's, yogurt, sauce, gravy, fish. I would order some books from the website, it gives you a diet of foods that will irritate your bladder, they are too many to list! Let me know what happens...Giapooh
Hope you feel some relief soon. I, too, took a lot of time out of work and couldn't see clients either! Any questions, you know where to find me. I've read a lot of books and joined the ICA and they send you a lot of info also. It's 45.00.