I’m suffering right now. PCS & IC & endo are giving me the blues
My vision is blurry from the pressure and my head hurts tremendously
I’m attempting to remain calm - but not sure if I can much longer
Laying down is not even helping
Happy Thanksgiving everyone.
This is a tough holiday, especially if your in a flare up, on prednisone or just am having a rough month. But it is still important to keep your head up and be thankful for the many blessings you do have in your life. Despite your health, think of your family, friends, job, school, or even your pet and be thankful for them.
Just remember, it could be worse. And if you’re at your worst, be thankful the only way you can go it up!
IC support groups exist throughout the world and USA. Use the ICN Support Center to find one near you. If you can’t find one close to you, you can participate in live support group meetings over the web, all from the comfort of your home. Please consider starting a support group in your town if one is not present.
A bladder instillation uses a catheter to deliver medication through the urethra and into the bladder. A small pediatric catheter is often used to minimize discomfort. Slippery “hydrophilic” catheters (i.e. such as the AstraTech Lo Fric catheter) are generally easier to insert and remove than dry catheters. Learning to self catheterize is easy and can be very liberating for IC patients who can then perform bladder instillations at home.
IC patients often experience their most uncomfortable symptoms at night when distractions are fewer and they notice their bladder symptoms more. They may feel a constant need to urinate or an uncomfortable sensation of bladder fullness that is very difficult to ignore. Night time discomfort often relates to foods eaten during the day that irritate the bladder. Taking a warm shower or using a heating pad can help improve sleep quality. Some medications may also be helpful.
I’m recovering from my InterStim replacement surgery and thought it would be a great time to write a post about the generalities of InterStim therapy. Not in a “if you’ve got IC, you should try this” way, but just explaining what it is and how it’s worked for me. I don’t think InterStim is right for all IC patients, but it has significantly helped me. Without it, I wouldn’t be entering my first year of medical school, so I’m very thankful for the success that I’ve found with the implant.
The InterStim implant is a type of neuromodulation – it sends an electrical pulse to the sacral nerve that is responsible for most bladder functions. Because of the ulcers/lesions in the lining of the bladder of IC patients, urine can leak into the underlying layers of the bladder, which contains nerve cells and it’s suspected this causes a lot of the urgency and frequency associated with IC. The brain is essentially being sent a large amount of confused signals from the nerve cells, which makes the individual feel the need to urinate, despite having a true need to urinate. InterStim is not approved for interstitial cystitis, but for frequency, urgency, incontinence, and overactive bladder. It’s also not approved for pain, even though some people do experience a small amount of pain relief (myself included).
*Dad, this post is not one you should be reading (yes, my family knows of this blog…).
My issues with pelvic pain started nearly five years ago. My pain was ignored for years and what was deemed a non-issue became a serious case of Mystery Diagnosis. In recent weeks, even more so.