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Posted by @brandyp in Kidney & Bladder, Oct 4, 2011

I am going to have a camera inserted into my bladder to complete diagnosis but my doc as 99 percent sure I have Interstitial Cystitis.
Have had symptoms of UTI since July but none all of my urine labs come back clean except a little blood. Have been checked for everything under sun and put on different meds and antibiotics but none of them help. Is there anyone out there on a personal level that has this disease and can help me learn more

Tags: womens health


Posted by @teresahbarnett, Dec 29, 2011

I was diagnosed with having a mild case of IC last , however, this was only after 2 surgeries. Hysterectomy in Dec. 2010, followed by 2nd surgery in April, 2011, removal of left ovary and appendix,diagnosis of IC in Nacogdoches, then removal of TVT mini arc in May 2011 in Atlanta. I have had constant UTI and constant pain. I have been on a second round of IV therapy and feel no better, but was diagnosed with Entercocci bacteria. I wish I knew an answer for you. I tried the IC diet, Candida diet, supplements, and now I am seriously thinking a trip to the Mayo in Mn. One urologist put me on Elmiron and that also did very little. A cystoscopy will show the inside of your bladder and if you have IC, you will know for certain. Wish I could be more help to you. As we journey..... keep the faith


Posted by @msd, Jan 13, 2012

I to have had a TVT surgery done and I just want to know where you able to use the restroom after surgery and if not how long did it take its been1 week and 3 days and Im still not using the restroom without having to use a catheter at nite any information you have will help


Posted by @teresahbarnett, Jan 21, 2012

I am sorry I did not answer right away. We were on vacation. I was able to urinate within several hours after my surgery, however, it felt terrible. From the very beginning, I was in terrible discomfort. You should not have to catheterize yourself to pee. Get a second opinion with another urologist. asap


Posted by @meenusmom, Mar 3, 2012

I was diagnosed with IC in 2004, the same year i had Breast Cancer and a hysterectomy. not related. I told my surgeon that i was having pain there, where the bladder is. He asked me questions and it turns out that he was familiar with IC because someone in his family has it. Some people have trouble getting a proper diagnosis. I was fortunate in that during my hysterectomy, he looked in the bladder with his camera and confirmed that i had IC. I too tried Elmiron, all it did was mess up my stomach. I tried different instillation treatments for about 6 weeks, and they did not help. The only way I am able to function and have any type of quality of life, is because i take narcotic pain meds. I have to deal with the stigma attached with that because everyone assumes that you are an addict. I sincerely hope that you do not have the same experience with narcotics. But if you do have to take them to obtain relief, go for it. Living with chronic pain changes the way your brain works, and having to take narcotics long term, also changes your body. But you have to have relief from the relenting pain that very few people understand. There are different narcotic pain meds, and different combinations that you can try and see that works best for you.
I strongly recommend that you talk to your family doctor, or your primary care, to establish the scripts for the pain relief. If you have one doctor monitoring the doses it is much easier to maintain everything involved. Establish a relationship with your doctor and make sure he understands the pain this condition causes. I am very fortunate in that my doctor and his nurse are understanding about this pain and they trust me with my meds.
I also recommend you go to the IC website. They have everything and anything you can think of to help with this horrible disease. They also have support groups, that you may be able to find in your area.
I hope i have not scared you, but helped. I don't believe in holding back info, it is what it is. Face it head on, and education is the key.
In Gods' grace.


Posted by @anon93504009, Mar 7, 2012

I have been diagnosed with IC since 2002. Sometimes it hurts badly for a few months and sometimes it isn't too bad for awhile. I use Elmiron, Aloe Vera, rescue installations and pain narcotics when it's really bad, the is an IC diet that really helps during a flare especially. Hang in there!


Posted by @bkay, Mar 8, 2012

Hello! New and nervous on this forum. 44 year old wife and mom. Diagnosed with IC in 2009, after hysterectomy in Marshfield. Long history of UTI's and Vag infections. Also, endometriosis and adhesions. Had scope done of inside of bladder 9 months ago, was given clean bill of health in that dept. Bladder pain and burning continues. My advice for anyone awaiting diagnosis for IC is to not let lack of diagnosis discourage you. If your bladder is hurting, there's a reason probably. I am 4 months out of adhesiolysis surgery. Adhesions were peeled off from exterior of bladder, causing nerve damage and horrible persistent pain. I too have to live with pain meds and stigma attached to being on them. I'm trying to find a specialist that is successful with treating exterior bladder and nerve damage and pain from abdominal adhesions. I'm still in shopping around mode. Good luck, and take care.


Posted by @hardgold, Mar 24, 2012

MY daughter has IC. She has been dealing with these issues for ten years but was just diagnosed last august. The treatment has helped some but I really wish she had someone to talk to that is dealing with the same thing. If I hear from you then i am going to encourage her to get on this message board and talk with you herself. I know that she has read some books that have helped her a lot. Perhaps she would have some advice or you all could help each other.


Posted by @ozeroff, Sep 27, 2012

Hi. I'm new to this forum. Did you get your diagnosis?? I have IC too and if I can answer any questions for you I will. I've had mine now for about 2 years. Please let me know. Thanks!


Posted by @amberday, Oct 23, 2012

I was diagnosed with IC a few months ago. The pain, pressure, and burning are driving me batty. I've began taking AZO urinary pain reliever (over the counter) and it helps somewhat.

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