It's time my friends. I need to step back from doing live support meetings and streams for the summer. Surgery (double mastectomy) is in two weeks. I can't provide you the attention and focus that you deserve. I am in the hardest part of my breast cancer journey... just waiting for surgery with anxiety off the charts. My plan is to be back in late summer or early Fall. Please pray for a good recovery and clear lymph nodes. That is my biggest worry. If anyone wants to reach out, my email is: [email protected]. I welcome all suggestions, thoughts and prayers. This is TOUGH to go through. Hugs to all and have a great summer. If I feel good, I'll try to come back sooner. Hugs - Jill
New Pelvic Floor Dysfunction Guidelines Released
Now that we understand that many IC patients do NOT have a bladder disease but rather a problem with their pelvic floor muscles, there is confusion about how they should be treated Thankfully, new guidelines were just released that provide 3 lines of treatment including: physical therapy, vaginal suppositories, trigger point injections, BOTOX and, as a last resort, neuromodulation. Learn more here! https://www.ic-network.com/pelvic-floor-dysfunction-treatment-guidelines/
The second course in our IC Master class will help you prepare for your first appointment with a urologist. Our goal is to educate and empower you and to help you be more effective while working with your various doctors.
Your care begins with your ability to describe your symptoms. Why? Because your symptoms give your doctors a starting to point to try to determine what could be causing your discomfort. Unfortunately, describing urinary symptoms can be difficult. Take a moment to answer the following questions:
- How often are you urinating? (every 15 minutes, hourly, every two hours?)
- Are you unable to sleep at night because you need to use the restroom often?
- Do you suddenly find yourself running to restroom to reduce pain or because you feel l like you might leak?
- Do you feel a sensation of heaviness or pressure in your pelvis?
- If you have pain (not all IC patients do), when is it the worst? Before you urinate (as your bladder is filling?) or after you are done urinating? Do you feel better when your bladder is emptied?
- Where is the pain located? Is it on your skin or inside of your body? If inside, where? Is it in your urethra, bladder, vagina or rectum?
- What does the pain feel like? Dull? Sharp? Pulsing?
- Are there any unusual symptoms that happen every now and then, such as a pain that shoots down your leg (sciatica), a feeling like you are sitting on a cell phone on vibrate or areas of pins and needles or numbness?
- What do you think triggers your pain? Sitting? Walking? Sex? Foods?
- What makes your pain or symptoms better?
It's very important to share with your doctor any injuries, past surgeries, traumas, childbirth injuries, tailbone injuries or accidents that may have affected your pelvis. Are or were you an athlete? Do you have a history of sports that involve multiple falls such as skating, gymnastics, bike or motorcycle riding, foot ball, etc.
Your ability to describe your symptoms will help you work better with your do
The 2024 IC101 Master Class is a series of free educational videos for patients who struggle with bladder and pelvic pain. From diagnosis to treatment, self-help to pain care, we're giving you the latest information to help you take control of your medical care and find the relief that you need and deserve. This is about giving you the tools and resources so that you can work more effective with your doctors, make informed treatment decisions because bladder treatments don't work for everyone and, most important, get back to the life you deserve. New episodes will be uploading regularly. We've got about 40 filmed so far! Watch them all at: http://www.icnetwork.org/masterclass/
IC101 Master Class Episode #1 -
Here's the first episode of the IC101 MasterClass, a short form video course developed in 2024 to give you all the latest information about IC/BPS. And, yes, it's FREE. We have about 30-40 episodes already filmed covering what is IC, how is it diagnosed, how to work with your doctors, treatments, self-help tips, flares and so much more! Watch the first ten episodes here: https://www.ic-network.com/masterclass/
