Interstitial Cystitis

[livingwith]

I was diagnosed with Interstital Cystitis 3 months ago. I am in constant daily pain, I am on all the appropriate meds including catheterizing myself every time I urinate. The pain is excruciating in my bladder and my back. I have pain meds as well but they only help a little. I take 1 every 6 hours. I don’t sleep at night and have lost time at work. I cannot sit or stand for long. I follow the diet I found on line and dring distilled water because the lack of minerals in it is suppos...Read the full article

[jamie k.]

It is very hard to deal with all the complications of IC, and i am also going through the same thing like u as well. Feeling depressed ect., but just keep up on your meds and your diet and hopefully u will get a little bit of an ease from the constant pain. I hope that the surgery goes well for you, I will pray that everything is good for u and all goes well. I was also wondering if u could give me that site u were talking about, cause im also thinking of getting that surgery done and would like to know a little more about it. Thanx so much if u could do that =).

[giapooh]

Yes, of course! Go onto Medtronics or Interstim Implant. I had my trial surgery yeaterday and I already feel better!!! I didn't catheter once today....Sign onto their mailing list and they will send you all kinds of info on the implant, including a DVD, pamphlets and other info. I have 3 DVD"S ans pamphlets so if they do not send you what you need I will send you a DVD to keep and some pamphlets. The procedure was 20 minutes and you wear a battery pack on your side like a beeper for 10 days and It stimulates your sacral nerve and if it does and it works, they will set you up for the implant surgery. I cannot believe how much better I feel in I 1/2 days! Go for it! If you want the info and they don't send it here is my e mail [moderator note: e-mail address has been removed]. I will mail it to you.

[jamie k.]

Im so glad that u are gettin some kind of relief from that procedure u went through=) thats great. Thanx so much for the info and i hope it works so u can get that surgery done and get some more relief. Im in pain rite now typing so i cant wait, i go in a week to see if i got any worse and then figure out what else i can do so im gonna look that site up and get some info. Thanx again so much !

[giapooh]

The pain I was in was unreal and I wouldn't wish it on my worse enemy! I couldn't sit too long, stand too long, do anything too long. I was constantly clutching my bladder because it ached so much plus my back always felt like it was burning. I was constatly in tears because of the pain. Are you seeing a urologist? If not, I suggest it because some women see a gyn and they are not well versed in treating this, not to say anything bad, but you wouldn't go to one if you had a toothache, right? Go where you'll get the best treatment. Medtronics website will definitly send you a DVD plus some other info. If your Urologist won't listen, go see another. Threre is a list on the website of urologists who can do this treatment. I couldn't take it anymore and I'll take any kind of relief I can get. I know It's not curable and I'll be on meds the rest of my life but at least with some relief and quality of life back. Good luck to you and let me know what happens! As I said my e mail is: [moderator note: e-mail address has been removed]. if you want the DVD. My boyfriend has been wonderfully supportive. There's also a diet to follow on the web and drinking a tablesppoon of baking soda helps with the pain and prelief nonprescription at walgreens takes the acid out of food. take it like 1/2 hour before. Are you on Elmiron, which coats your bladder and a pain med? If not, you should be. Keep me posted! giapooh

[jamie k.]

Yah i went to see a urologist yesterday and hes gonna do another check up with me. I have tried Elmeron and the other types of oral meds and nothing has worked for me, thats why i was gonna see about the surgery. Right now im on oxycodone cause i broke 2 of my toes lol but that is helping with the pain a lil for right now :P i have an appointment again next week so then i will figure out how much worse i am gettin and see where we can go from there. Thanx for all ur info that u have given me cause i will take this info to my appointment and let them know what i want done. And of they dont listen i will be leaving them and going somewhere else. Hehe im just so glad my husband is also supportive and patient. Good luck again and keep updated with me its nice to talk to someone else about it that understands my hubby doesnt realy understand lol, but he listens.

[giapooh]

I had my test surgery for my implant surgery last Wednesday the 9th of July to have the wires inserted in my sacral nerve and I wear a beeper tp push up the dials when I don't feel a pulsation. I get the wires removed this coming Wednesday. Let me tell you, I cannot wait to have the Interstim Implant done!! What a change, NO CATHETERIZATIONS since the surgery, NO PAIN and I urinated only 5 times about per day from the 23!!! With the implant you will still have some pain BUT the symptoms go away approx 80%. I follow the diet, drink distilled water, take my meds daily, and rest when my body tells me to, but ask your Urologist. I was the WORSE case they had seen and I feel pretty good right now! If your Uro. doesn't have the DVD, go on the Medtronics sute to get on their e mailing list and get them to send you one; if not, I have a few extra plus a ton of pamphlets. Giapooh (LYNNE)
[moderator note: e-mail address has been removed]