Source
r/Interstitialcystitis•
nhalia

New here!

Hi!

First day here with an “unofficial” diagnosis of IC. I have an appointment next month for a cystoscopy to rule other things out and talk to the urologist.

So far I have only seen a Nurse Practitioner at the urology office, but she was the first to actually listen to me and told me it sounds like it might be IC. I’m cautiously hopeful right now.

I started dealing with intense pelvic pain in April after intercourse with my husband. I saw my gyn, had an ultrasound, second opinion from my pcp, a urinalysis, a ct of abdomen, and finally a referral to a urologist.

The pain I originally had has transferred into pressure, bladder spasms and the urge to use the bathroom frequently.

The NP tried me on ditropan but after 4 days I was having trouble peeing so I’m just on azo now as needed.

I’m finding if I stay still, stay unstressed and eat on the IC diet I’m decent, but let’s be honest…how often am I really going to be able to do this?!

I was wondering if there are any books that you would recommend on IC? I’d like to be fully armed at my appointment,and I just like knowing everything about everything.

Also, thank you for being the first IC group that I have found reads supportive AND hopeful

Posted Jul 15, 2021, 9:55 PM UTC

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HakunaYaTatas[Citation Needed]•

Hi and welcome! I think I have read every book about IC that has ever been published, lol. (I also like books and being prepared.) My two top recommendations are:

  • "The Interstitial Cystitis Solution" by Nicole Cozean. She's a physical therapist who specializes in IC and pelvic pain. She's well-read on the literature and does a good job of explaining complicated topics. The information about the pelvic floor is very detailed, unsurprisingly lol. My biggest complaint is that she references studies constantly but never cites any sources. Not a huge problem, just a pet peeve of mine.

  • "The Interstitial Cystitis Survival Guide" by Robert Moldwin. This book is 20 years old, but sadly very little has changed since it was published so the vast majority of the information is still accurate. Robert Moldwin is one of the most famous IC experts in the US, and he's one of the doctors who set the standard of care guidance for IC in the US. He also really knows the literature and the book is full of little suggestions from his clinical experience that I liked. My biggest complaint is just that it needs an update to include more recent information.

Other than books, the Interstitial Cystitis Network and the Interstitial Cystitis Association are two great patient education organizations with articles and videos. Both are very up to date and reputable. They also have doctor search engines if you're interested in seeing an IC expert.

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nhaliaOP•

Thank you! I will be checking those out and have marked the websites!!

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FalkorLovesBellyRubs•

I second the recommendation for 'The Interstitial Cystitis Solution' by Nicole Cozean. I learned a lot from reading it. Although she's a physiotherapist she doesn't only discuss the pelvic floor and there's lots of other very useful info, e.g. she debunks some of the common myths about the so-called 'IC diet' which is something that I think overwhelms a lot of people when they are first diagnosed and learning how to manage their IC. It has definitely helped me to navigate and filter what I read in the online support groups (because IC is such a broad diagnosis and can vary so much from one person to another all of the different advice and anecdotes can get pretty overwhelming and confusing).

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