Interstitial Cystitis


Please describe your experience with interstitial cystitis. Submit Your Comment

Comment from: Kristy, 55-64 Female (Patient) Published: October 08

I’m 62 year old female. I was diagnosed with interstitial cystitis (IC) 15 years ago. From about 2014 on I was in constant pain and required daily tramadol and lots of ibuprofen to get through the days, even though I was getting DMSO (dimethyl sulfoxide) instillation every 30 days and taking Elmiron daily. October 2018 I had stem cell therapy derived from my fat cells. I have been pain free, and off all medicines for 9 months! I have my life back! Today I can even enjoy an occasional glass of wine!

Comment from: Pippa, 75 or over Female (Patient) Published: September 20

I had the extreme pain of interstitial cystitis (IC), and had a bladder distension which helped for a few months, then the full force of the pain began again. I bought reishi mushroom tablets, made in France, to reduce my blood pressure. They not only did that but took away the pain of IC. Wow. I couldn't believe it. The pain still hangs around a bit when I lie down at night but not often and not severely. The frequency of urination however has not been helped but I can put up with that without the pain. I believe that the cause of my IC may be traced back to wearing sanitary pads for many years before IC and the ingredients contained in them to absorb liquid. I gather this has never been thought of but it makes sense. I now line my pads with a length of toilet paper folded on top to stop the gel from touching my body. That is my theory and may be worth pursuing by the medical profession as a possible cause of IC. I am so thankful for the reishi mushroom tablets. The pain was so extreme that it was hard to live with.

Comment from: Bobbi, 55-64 Female (Patient) Published: February 27

I was diagnosed with interstitial cystitis (IC) in 1994 when I was 42, I'm now 62. The first thing my urologist said after the diagnosis was that IC is acerbated by stress, and I have to get out of the 9-1-1 center. From my experience physical and emotional stress does affect. I went through all the treatments, medications and dietary restrictions. I felt like I was in hell for 3 years. I have been in remission for 20 years. Now it's back in full force! My urologist retired years ago, so I'm seeing a new one next week. I have 9 days to go. I'm in so much pain, confined to my home and not able to get more than 30 to 45 minutes of sleep at a time. I'm so afraid I am in another nightmare.

Comment from: mainelykk58, 55-64 Female (Patient) Published: September 10

I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It’s as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life.

Comment from: IC PAIN, 45-54 Female (Patient) Published: January 12

IC Disease is sooooo painful!!!! Doctors and People do not realize how this 24/7 pain takes over your life! I have been on Norco 10 mg 6-10 a day! IT is not working! Dr gave me fetanyl 25mg with oxycodone 5 mg. Had to take 6 oxycodone until fetanyl patch kicked in after 12 hours. Felt relief for 1 day then pain was worse than I could ever imagine! Screamed in agony! Going to Dr Tomorrow for Oxycotin 10mg and fetanyl patch 50mg. I had urethra sling surgery. Do not do this, it is very painful. Had it removed 1 year later. Afraid of any surgery. No cure for IC. HELP!

Comment from: Jan, 65-74 Female (Patient) Published: September 28

Try a low histamine diet for interstitial cystitis.

Comment from: jodi, 19-24 Female (Patient) Published: September 10

I am a 23 year old university student who has dealt with IC for over 4 years. I was desperate to try anything to help since I was usually up at night anywhere from 10-24 times (ended up with severe insomnia as a result) and often had to make up to 42 trips to the bathroom during the day. I had to drop out of university and could hardly work. I tried everything from distentions, oral medications, instillations, and even some experimental medications. I was on a strict diet and using acupuncture to alleviate the pain (which surprisingly helped). After 2 years of no relief in sight, I had the sacral nerve stimulator implanted (which wasn't easy or pleasant, but worth it) and have since been enjoying a more normal life since! I still have had to watch my diet and avoid things like alcohol, but life is much more enjoyable.


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