topic Re: Interstitial Cystitis in Wellness

Interstitial Cystitis

RetRN — Mon, 31 May 2021 00:55:05 GMT

Does anyone have this or know someone who does? How do you deal with the pain?

Re: Interstitial Cystitis

AuntG — Mon, 31 May 2021 01:21:33 GMT

No, I not familiar with it but I hope you get some responses.

Re: Interstitial Cystitis

GabbyAnn — Mon, 31 May 2021 02:08:25 GMT

A lady I know once suffered from this. Her Dr prescriped Hydroxyzine 25mg at bed time to help.

She still has trouble with UTIs. She said it helped her to an extent..

Maybe you could ask your Dr if it would work for you. I certainly hope something works for you. I know my dear friend was in terrible pain with it.

Re: Interstitial Cystitis

Foxxee — Mon, 31 May 2021 02:26:11 GMT

My sister has it. Let me say she had a terrible time getting it diagnosed. Probably, 12 doctors...you know..."It's all in your head." Finally, one doctor sent her to a Gynecology Urologist where she received a diagnosis and treatment.

She was prescribed medication, but also the doctor injected this same medication into her bladder once weekly for 6 weeks to escalate treatment. Sorry, I don't remember what was prescribed.

Her symptoms were the same as having a bladder infection, but no white cells were found in her urine.

She learned it was some foods that were irritating her bladder. She was given a list not to eat. She's doing well. I haven't asked her if she's still taking the medication or if staying away from those foods solved the problem.

Maybe Azo would help with the pain.

Re: Interstitial Cystitis

GenXmuse — Mon, 31 May 2021 02:20:13 GMT

I used Amitriptyline when I had this after a difficult childbirth. It can be quite debilitating. I also did physical therapy to help relax the pelvic floor. They have therapists who specialize in women's health and found it helpful.
It can be difficult to treat and requires a comprehensive work but it did get better over time.

Re: Interstitial Cystitis

Hearts4Me — Mon, 31 May 2021 11:59:12 GMT

Yes, I've had IC since the early 1990's. It took me 2 years (no joke) to get diagnosed, and I went to many physicians including specialists at the University of Pittsburgh who were researching bladder issues.

I still have not gotten better. Many meds, bladder instillations of some which helped for a few weeks, then back to misery.

I am up at least 4 times nightly....and that's no joke. Some nights I am up hourly. My husband moved down the hall to another bedroom years ago due to this. It's a true nightmare.

Re: Interstitial Cystitis

piperbay — Mon, 31 May 2021 12:20:06 GMT

@RetRN I recall reading about Desert Harvest Aloe Vera for I.C. I think it's worth looking into.

Re: Interstitial Cystitis

sydsgma1 — Mon, 31 May 2021 15:11:15 GMT

I had interstitial cystitis for several years. Unfortunately, mine was so severe that my docs at the Mayo Clinic recommended the very drastic step of removal of my bladder.

I believe there are some new meds that can help with symptoms., I found an anti inflammatory diet also helped.

I fully understand your pain.,

Re: Interstitial Cystitis

Lucky Duck — Mon, 31 May 2021 15:35:29 GMT

I hope I"m not overstepping the line but did they actually remove your bladder? How are you doing now? Do you have a pouch?

Re: Interstitial Cystitis

Toppers3 — Mon, 31 May 2021 17:24:36 GMT

@RetRN wrote:
Does anyone have this or know someone who does? How do you deal with the pain?

I'm so sorry for anyone who has to live with this condition.

It's miserable.

Luckily I was able to be diagnosed by a Urologist many years ago when I first started to have problems.

Medication that I was taking for other medical conditions happened to help, inadvertently.

I also did bladder training exercises, where you deliberately hold out on going to the bathroom for as long as possible.

You gradually add time on to the amount of time that you can hold out on, going to the bathroom.

Your doctor's office can guide you with doing this.

I was running to the bathroom like every 20 minutes, so you start adding time on to that to stretch your time out that you can wait.

You're trying to help your bladder hold more fluid.

You also keep track of foods and beverages that can be irritating to your bladder, and try to avoid those things that make things worse for you.

I can no longer drink tea, and I have to watch products with caffeine in them, along with certain spicy dishes of foods.

I became allergic to one of the meds. used in treating it, but the Urlogist helping me now with kidney stones has put me on a different medication which helps.

He says my bladder now is not inflamed like it was, so he's calling it an "overactive bladder," due to the urgency and frequency and urge incontinence symptoms that I currently still have.

Re: Interstitial Cystitis

chrystaltree — Mon, 31 May 2021 18:46:12 GMT

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.

Re: Interstitial Cystitis

AuntG — Mon, 31 May 2021 20:55:44 GMT

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

Re: Interstitial Cystitis

Frenche — Mon, 31 May 2021 23:50:13 GMT

Desert harvest.com

aloe vera capsules

worked for me - please please try

Re: Interstitial Cystitis

RetRN — Tue, 01 Jun 2021 14:01:42 GMT

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

Re: Interstitial Cystitis

toria — Tue, 01 Jun 2021 15:41:23 GMT

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.

Re: Interstitial Cystitis

helping1 — Wed, 02 Jun 2021 02:27:33 GMT

@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.)

Re: Interstitial Cystitis

sydsgma1 — Wed, 02 Jun 2021 14:17:49 GMT

@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.