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Honored Contributor
Posts: 23,765
Registered: ‎05-10-2010

Iris who was a long time model on QVC has IC, she posted about it at length over the years on social media.  It was heartbreaking to read.  I assume you are under the care of a urologist, you should ask for a referral to pain specialist for with chronic pain.  I work for a hospital so I have seen it.  I know the pain can be excrutiating.  My hospital uses a couple of non invasive implant procedures and there are some new medications.  I don't know if all insurers cover them.  There was one patient that we had to jump through hoops for to get her insurer to cover it on an "individual consideration" basis.  

Honored Contributor
Posts: 15,534
Registered: ‎03-09-2010

Yes, I remember Iris, the model. How awful for her. 

Visitor
Posts: 1
Registered: ‎08-31-2018

Desert harvest.com

aloe vera capsules

worked for me - please please try

Esteemed Contributor
Posts: 7,478
Registered: ‎10-01-2013

I want to thank you all for your responses. I greatly appreciated reading all of them.

Valued Contributor
Posts: 746
Registered: ‎08-28-2010

I occasionally get a mild case of it.  I take AZO pain relief over the counter and it helps.  It turns your pee orange but it is soothing. 

Regular Contributor
Posts: 179
Registered: ‎07-18-2010

Re: Interstitial Cystitis

[ Edited ]

@RetRN I'd never officially received a diagnosis of IC but instead "irritable bladder," from a few different urologists.  I have the urgency and frequency (to use the restroom), as well as some discomfort, however, fortunately, I do *not* have urinary incontinence as with people with overactive bladder (knock wood).  There may be a local support group for those with IC albeit perhaps online due to Covid-19 restrictions, if even, just to share one's frustrations and/or such emotions (though, *not* in place of counseling or therapy).  

 

I'm not sure if we can post websites on these boards, however, the Interstitial Cystitis Association (ICA) site *might* have a local support group for those with IC and/or related info re: "diagnosis & treatment" and "living with IC," for instance.

 

Some with IC may purportedly get helped by making some dietary changes as others have mentioned.  On that note, however, please consult with your doctor and/or a registered dietitian nutritionist (RDN) before making such changes.  The ICA website mentioned under their list of "Foods to Avoid" that the "most bothersome foods" tends to include coffee (caffeinated & uncaffeinated), tea (caffeinated & uncaffeinated), soda, alcohol, citrus juices (e.g., orange juice, lemonade, grapefruit, and/or pineapple), and cranberry juice.  The partial list goes on to further mention to avoid foods and beverages containing artifical sweetners, as well as hot peppers and spicy foods.

 

Even certain vitamins may apparently irritate the bladder.  For instance, a doctor had recommended my taking B-12 due to my nails being more brittle and such (fungal infection *ruled out* from podiatrist).   I didn't know that irritation to the bladder may result from B-12 (perhaps more so to those vulnerable to bladder irritability), though found out by happenstance.  I'd stopped taking the vitamin by itself because of that.  Just a fyi that the doctor believed that the brittle nails (including easily splitting) was from being on medications for a period of time.   

 

Some have mentioned going to a physical therapist (PT) who deals with women's health or pelvic health issues, such as for pelvic floor therapy.  (Men can unfortunately get IC too.)  Perhaps that is an option to consider, though I've never personally gotten PT or pelvic floor therapy for those symptoms.  One may need a 'script from a medical doctor, such as a board-certified urologist or urogynecologist, to receive physical therapy, for instance. 

 

What I should've included in this post was that long-time soap opera actress Melody Thomas Scott (of the Young & the Restless) has also said that she has IC.  (I don't watch Y&R but found the info online.)  According to one article, she's purportedly been dealing with the symptoms of IC since 1999 and had "spearheaded an awareness and informational campaign" for IC.  The article (found on the cbs website) continues with saying that she is now living pain-free, which I hope is true.

 

I've never personally used the supplement "CystoProtek" but I'd read online that some have purportedly gotten *some* relief from their IC symptoms.  Please check with one's urologist (or urogynecologist) before considering any type of herbal and/or vitamin supplement.  According to their website, the ingredients for the product include chondroitin sulfate, sodium hyaluronate, quercetin (found in apples), rutin, glucosamine sulfate, and olive kernel oil.  Just a fyi that it also contains shellfish, including crab and shrimp.  (There are some inactive ingredients listed too.)

Respected Contributor
Posts: 3,374
Registered: ‎03-09-2010

@Lucky Duck  I had this surgery over 20 years ago...yes, wear a bag. I worked full time as an upper level school administrator, sang in professional,choruses and traveled extensively. 

my case was very severe and the surgery , once I recovered, improved my life immensely.