Interstitial Cystitis - I would like to connect with others

I'm 59 and was diagnosed with it in my early 20s. Back then, treatment options were very limited. Today, you can find lots of resources on the Interstitial Cystitis Association website https://www.ichelp.org/

There are also many Facebook groups for people with the disease.

If a doctor offers you the medication Elmiron, DON'T TAKE IT! It has been linked to many cases of retinal damage & there are ongoing lawsuits. It may also be linked to polyps in the bowels, studies are still pending.

@8dzaweek you're aware that Elmiron causes damage to your eyes, specifically your retinas?
https://www.drugwatch.com/elmiron/

Hello @dreamspinner3,

As you mentioned, there are risks with taking Elmiron that does include potential vision issues for a small percentage of those who take it. Unfortunately, Elmiron is the only FDA-approved medication for interstitial cystitis, https://www.drugs.com/mtm/elmiron.html, https://www.accessdata.fda.gov/drugsatfda_docs/label/2021/020193s015lbl.pdf. As mentioned on the https://www.ichelp.org/understanding-ic/medications/pentosan-polysulfate-sodium/ website, Elmiron has shown some improvement for patients.

Each person experiences a medication differently and it is important to document any potential side-effects as you experience them and to inform your provider who prescribed the medication.

I was given Elmiron, was aware of possible side effects, but kept my eyes checked and never had a problem. It helped me tremendously! The pain stopped and I was pleased with it! My primary physician did ask me to try using Cystex, a supplement for the bladder, from Amazon. I finished the Elmiron, started the Cystex, (expecting the pain to start again) but, no pain. I took two bottles, I believe, then stopped it after that. Amazingly, I've never had pain like that again. I know my condition isn't as severe as some but, it doesn't explain why my pain stopped. I still have the spasms and losing control but, I'm ok with that. There are risks of side effects with any medication but, that doesn't mean it will affect everyone who takes it. I hope you get the help you need with your pain!

Interstitial Cystitis is a nasty ailment! This discussion originated nearly a decade ago. That was many moderators and mentors back. It seems to be picking up again in the past few years and especially lately with the creation of the new Bladder Conditions Group. Hopefully there will be new meds &/or treatments for Interstitial Cystitis. Let’s keep following this discussion. I’d like to welcome @curiousm6 and @aloemedra3 to Mayo Clinic Connect. Has anyone heard anything encouraging for the treatment of Interstitial Cystitis?

Just joined. Does anyone have radiation cystitis after radical prostatectomy with radiation?

@jeffy1 My situation a bit different, am a Senior female decades ago lots of radiation to pelvis Cancer Cervix Stage 2 those days it was not as precise... not right away but got what they call "Late Stage Radiation Damage" - got gradually worse with time and for last years cystitis from radaiton as well as colon issues; spouse had radiaton for bowel cancer over decade ago which affected his bladder and bowel ... for us there is not much help as both older and other health issues... not sure of your age or how long ago your radiation but hope things have changed and there are specialists who can suggest some more modern help. .... you have checked symptoms on internet? I know they say not to but I did... J

JVS - thank you for comments. I'm 70, had radiation at 62. Just got referral for HBOT...Hopefully will stop any progression for a while. I really will be watching not to fall or have hard bowel movements. Thanks be to Jesus.

@lacy2 Thanks for your response. Did both you and your husband have radiation cystitis? Any bleeds? Does it progress quickly? Any inflammation in your bladder? Has diet helped?

@jeffy1 Hello. My radiation was decades ago and it took quite a few years for it to develop but urologists have said caused by radiation..,,.hve been dealing with it on and off for a few years.... confusing as mixed in with uti's. Visible blood in urine on and off for several years myself... they showed me while camera inside bladder, just spraying liquid (water?) onto bladder inside "walls" made it bleed. Recent years the urologist said if he blew on my bladder walls they would bleed... so its been a bit of a nightmare. Husband also has issues but mostly bowel was affected ... as you know radiaton affecdts the bones and just about everything .. mine especially as 1985 not as precise. We both have sort of ibs-d. Price we paid for surviving cancer. Trying to be brief ... we no longer eat spicy food etc but thats more related to colon... we are open to discussing if it helps .. seems no quick fix for us and now older just cope with it ...