Photos from Dr Susan McSherry Interstitial Cystitis's post
Dr McSherry did see IC patients in New Orleans, she is now retired Patients need info for educated
Photos from Dr Susan McSherry Interstitial Cystitis's post
Help researchers develop a urine-based test for diagnosing Interstitial Cystitis (IC) at no cost to you!
Looks like a good webinar from the ICA.
Chronic pelvic pain affects an estimated 20 million men and women in the United States. These may include conditions such as: - Interstitial Cystitis/Bladder Pain Syndrome - Prostatitis - Pelvic floor muscle spasm/dysfunction - Male and Female Sexual Pain Many of these conditions are difficult to di...
A recent ICA survey indicated that 76% of IC patients’ IC/BPS symptoms are triggered by diet. On that note, we are pleased to offer the entire community our Spring 2020 issue of the ICA Update that focuses on IC and … Continued
IC/BPS patient, Lori Primmerman, was featured in an article on Women’s Health website. Click here to read the story of her struggles with IC/BPS and how she gets relief from an Axonics implant. ‘My Painful Bladder Syndrome Gave Me The … Continued
Chronic Fatigue Syndrome gets new name and official recognition, great info.
Some patientshave asked about stem cell for IC. Not a good idea.
The agency reported actions against a biotech company and two large stem cell clinics over unapproved treatments, a move it said was necessary to make way for speedier approval of legitimate therapies.
Great info for flares
Are there questions you haven’t been able to get answers to? ICA is compiling a list of questions to ask the IC experts. Please send your question to us at [email protected].
Important info from an expert
Many of my patients confided they occasionally used ma*****na for IC pain.. There are receptors in the bladder specific for ma*****na so there is science behind this. Be very careful if you are using in without an Rx, many docs do urine checks for illegal substances before they Rx pain meds.
The administering of THC and CBD were found to significantly decreased urinary urgency and the number and volume of incontinence episodes.
From the ICN. Some promising treatments coming hopefully
New, Promising Treatments - AF 219, LiRIS, AQX-1125, GM-0111, LP-08 Patients constantly ask "Is there anything new?" Yes, Virginia, IC research is alive and well with teams from around the world exploring new treatments. Here's our review of the most promising projects in the IC Pipeline! Afferent P...
This is interesting because Glycyrrhizin is licorice root, available as a supplement. Worth trying. Make certain you are really getting real licorice root.
Kouzoukas DE, Ma F, Meyer-Siegler KL, Westlund KN, Hunt DE, Vera PL. Protease-Activated Receptor 4 Induces Bladder Pain through High Mobility Group Box-1. PLoS One. 2016 Mar 24;11(3):e0152055. doi: 10.1371/journal.pone.0152055. eCollection 2016. Because pain is one of the defining symptoms … Continu…
Dr. Lowell Parson's Explores Early Signs and Symptoms of IC One of the most recognizable figures in research and clinical care, Dr. Lowell Parsons has treated 9000 IC patients in his 35 year career at UC San Diego. A legend in the IC movement, he developed the only oral medication
Judging by the questions I am getting most of you are not receiving current treatment. With diseases like IC you should learn as much as possible because your doc is probably not an expert but may be helpful. Make sure you are familiar with ichelp.org and IC-network sites for the basic info. Yes it can get conf but the basics are the same. Do not assume your doc knows best. Please look over this list. However keep in mind there are other meds, other treatments. But this gives a good starting place for where your doc should be. http://www.ic-network.com/downloads/auatreatmentchart0613.pdf
Questions anyone? i am happily retired but my brain wants some urology stimulation. message me (no one but me can see the message), ask any question, I will attempt to answer (again will be private). No question is "too dumb". I will answer in my best
Random suggestions about additional testing for patients with moderate to severe IC.
If you also have GI symptoms see a gastroenterologist and have a through work up. Also ask to be tested for celiac disease. One in 100 people have this disease. For info see celiac.org. Or consider gluten insensitity. Review at celiac.org
If you have pelvic pain see a Gyn who understands IC and consider a laporoscopy to look for endometriosis. https://www.nlm.nih.gov/medlineplus/endometriosis.html
If you have unusual symptoms outside of the pelvis, consider blood testing of ANA to rule in or rule out autoimmune disease.
Remember to ask for copies of blood work and testing.
IC has crossover with many other conditions, make certain you and your physician consider these.
Interstim neuromodulation and pudendal neuromodulation can benefit bladder frequency and bladder pain in addition to pelvic pain discussed in 3 papers by Dr Ken Peters, one of the IC experts. http://www.beaumont.edu/press/news-stories/2015/8/providing-relief-from-bladder-and-pelvic-pain-issues-beaumont-urologists-pioneers-in-neuromodulation/
I would caution everyone that the outcome depends on the physician doing your surgery. Experience with the device and good outcomes with other patients. Talk with some of the patients( I know my patients used to ask others in the waiting room!)
Millions of people suffer from bladder dysfunction, including about 30 million in the U.S. One in seven women experience chronic pelvic pain. These are not only health issues, but quality of life issues.
Many of you have invisible pain. I suggest when others ask about the pain you reference something they can relate to physically. Such as
"I have a severe headache in my pelvic area"
"I have a migraine in my pelvis"
Don't forget to follow ICA on Twitter. Find them at IChelp. Today's tweet
The Most Ridiculous Things People With Invisible Illness Hear ow.ly/R0foS
8:02am - 22 Aug 15
Here's what you can say instead.
Free acupuncture if you live near Rockville, Maryland
Healthpointe Acupuncture & Wellness, Rockville, MD, has partnered with ICA to hold a Free Pain Clinic on Wednesday, September 2 and 16, 1:00pm – 5:00pm. You don’t have to be in pain at the time, nor even a current client. … Continued
Always a great resource, read the current info
From the ICA. I just sent my own email using some of the suggested wording,
Request that Your Members of Congress Send a Letter to the CDC
Request that your Members of Congress send a letter to the Centers for Disease Control and Prevention expressing support for interstitial cystitis education and awareness activities
The Centers for Disease Control and Prevention (CDC) recently changed the scope of the Interstitial Cystitis (IC) Education and Awareness Program to an epidemiology study, effectively eliminating the only federal program that directly helped the 4-12 million patients with IC. Ask your legislators in the House and Senate to send a letter or make a phone call to CDC expressing support for the traditional IC education and awareness activities of the IC Program.
To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed.
To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages.
Call your legislators’ Washington, DC offices
Tell the person that answers the phone that you are a constituent
Ask to speak with the health staffer (or your contact) and deliver the message below. If you can’t reach the health staffer, it is OK to deliver the message to someone else or to a voicemail
Ask if you can send a follow-up email and request an email address
Send a follow-up email based on the message below
Home page of the United States House of Representatives
And another from ICA. I can say that I sent many, many patients for a pain block and don't remember very many successes. And can be expensive Maybe a few benefited
El-Hefnawy AS, Makharita MY, Abed A, Amr YM, Salah El-Badry M, Shaaban AA. Anesthetic Bladder Hydrodistention Is Superior to Superior Hypogastric Plexus Neurolysis in Treatment of Interstitial Cystitis-bladder Pain Syndrome: A Prospective Randomized Trial. Urology. 2015 May;85(5):1039-44. doi: 10.1016/j.urology.2015.01.018.
Superior hypogastric plexus neurolysis (SHN) is a type of injection that can be used to control pelvic pain that can’t be controlled with oral medications. Unfortunately, the results of this recent study show that SHN might not be suitable as a treatment for interstitial cystitis/bladder pain syndrome (IC/BPS). In the study, a total of 24 women with IC/BPS were randomly assigned to receive either SHN treatment or bladder hydrodistention, a procedure that stretches the capacity of the bladder and can offer short-term pain relief. Women who received SHN did have significantly less pain one week after the procedure, and the only notable side effect in some women was a back ache that didn’t last long. However, SHN offered no advantage over hydrodistention, and in fact, the women who received hydrodistention seemed to fare better with longer follow-up. At 2- and 4- week visits, the women who had hydrodistention had improved measures of pain and reduced problems related to IC compared with women who received SHN. Taken together, these findings suggest that while SHN offers effective pain control at first, the effect is not as durable as more established methods of pain control in IC/BPS.
Another one from ICA
R ember pain does NOT have to be present. And pressure IS a type of pain. If in doubt review the IC Guidelines from the AUA
Have your doctor do some lidocaine bladder installations. Also can be learned and done at home. In addition to licoaine's numbing properties it is and antinflammatory
Beyond a Simple Anesthetic Effect: Lidocaine in the Diagnosis and Treatment of Interstitial Cystitis/bladder Pain Syndrome.
Urology. 2015 May;85(5):1025-1033
Intravesical local anesthetics, in a wide variety of combinations, are increasingly used to treat patients with interstitial cystitis-bladder pain syndrome (IC/BPS). Lidocaine has demonstrated properties that block the neuroinflammatory cycle associated with IC/BPS at many of the interactive points in this cycle. Intravesical lidocaine has been shown to assist in identifying the bladder as the source of pain in patients with pelvic pain. An appreciation of these anti-inflammatory effects and of the pharmacokinetics of intravesical lidocaine in patients with IC/BPS could lead to a safe and effective diagnosis and treatment for an as yet unidentified subset of patients in the IC/BPS spectrum.
SAFE ONLINE SUPPORT
Find an interstitial cystitis (IC) support group, start a group, get answers to your questions, find an IC specialist, and connect with other patients. The ICA is the best source of information about urgency, frequency and bladder pain.
Patients use heating pad at home, try something like this for work! Available Amazon, many stores
HotHands Body & Hand Super Warmer
Reminder. My email address is [email protected]
Itching, burning? Try "Vitamin A and Vitamin D ointment" made by Fougera". At Amazon and other stores Patients say it really helps
New Orleans, LA
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