8 Month IC Flare

[JamiAlex]

Heys guys. I have been in what feels like a severe flare since Oct 2020. I’ve had a two Botox treatments and an injection from my pain specialist, to no avail. I am on Norco for pain, as well as cyclobenzaprine and dicyclomine. I was treated for a bladder infection at the beginning of April but other than that, nothing seems to help. I feel like I’m in constant pain and the narcotics are only taking off the edge for maybe an hour or two. I’m not sleeping well and my body just feels run down and tired. I have also tried sitz baths, the heating pad, an ice pack and pyridium. I did get a bladder installation but it caused so much discomfort that my dr told me not to get them for a while. I also have IBS-C and pelvic floor disfunction and my pelvic floor muscles are so sore that it hurts to urinate. Are there any other suggestions/treatments that anyone can offer to help? I’m willing to try almost anything.

[ICNDonna]

That's awful! The only thing I can think of is to keep a detailed diary, listing time of day, everything that goes in your mouth, activities, what you're wearing, what kinds of personal and laundry soaps --- anything you can think of --- to see if you can identify things that make you feel worse --- and (hopefully) some things that help you feel better.


Donna

[JamiAlex]

Thank you Donna! I’m starting to think it’s partially stress related. I have had some things going on the past few months that may be contributing.

[Nolanana]

I suffer with pelvic floor spasms too. My doctor RX d Valium and Baclofen crushed in a pill crusher, then mixed with 2% Lidocaine then inserted by finger into the vagina. Really helps to calm the spasms. For bladder and nerve pain, I take Methadone, really helps the pain. I hope you find something that works for you.

[ICNDonna]

Thank you Donna! I’m starting to think it’s partially stress related. I have had some things going on the past few months that may be contributing.

You may be right --- it's not unusual for stress to cause a flare. You might want to talk with your doctor about something to help ease the stress and help you relax.

Donna

[tjm0486]

After years of dealing with ICI haven't found a cure but have had success in managing the pain. First, review the IC diet, managing your diet helps. Amitriptyline is a prescription medication which quickly reduced my pain. There are some side effects but your body adjusts after a week or two. A year ago I tried a supplement called L-Arginine which was a big help and allowed me to discontinue the amitriptyline. I buy it in bulk powder form on Amazon to avoid any fillers or preservatives that can irritate my bladder. Hope this helps

[ICNDonna]

After years of dealing with ICI haven't found a cure but have had success in managing the pain. First, review the IC diet, managing your diet helps. Amitriptyline is a prescription medication which quickly reduced my pain. There are some side effects but your body adjusts after a week or two. A year ago I tried a supplement called L-Arginine which was a big help and allowed me to discontinue the amitriptyline. I buy it in bulk powder form on Amazon to avoid any fillers or preservatives that can irritate my bladder. Hope this helps

Thank you for sharing your success. Glad to know you're doing well.


Donna

[rftghfghj67u5t]

Hi, how have you been? I have the same problem, can you please give us an update?

[Barbara M]

I was diagnosed with IC in 2013. Shortly thereafter developed pelvic floor dysfunction with pudendal nerve neuralgia. I went to rehab (need to find a therapist who deals with IC and pelvic floor dysfunction) which helped me tremendously. After leaving rehab, I continued to do the exercises I was taught. I did a lot of soaking in hot water in the bathtub for pain and just relaxation. I did not follow a strict diet but did figure out trigger foods. I was on no medications. If I had bladder pain, which I felt could be from something I ate, I drank a cup of water with 1/4 teaspoon of baking soda which neutralizes the acid in the bladder. Of note: I read many times about using 1 teaspoon of baking soda in water which was hard to tolerate, and found out 1/4 teaspoon was sufficient.

I went into remission in early 2020 until September of this year. Unfortunately I feel this happened due to that during my remission I fell back to eating and drinking what I desired and not keeping up with the exercises. The doctor did question my caffeine intake and that is how I came to my conclusion of my flare. I have got things pretty well under control now with watching my diet and back to exercising but was experiencing more pudendal neuropathy than before and the doctor prescribed Gabapentin which helped immediately.

I am hoping you are getting some relief of your pain and hoping maybe something in my story may be of help.

[rshawhan]

Jami,
I am always concerned about pain meds given after surgery for my hydrodistentions. I don't want to be on them long. I see you are on some. Are you concerned about getting addicted? I ask only because I am having a flare right now and maybe could use a pain med.

[ICNDonna]

Usually only a few days' supply of pain medications is prescribed after a surgery --- I have had over forty hydrodistentions and did not become addicted.

However, when I had surgery to remove cancer, it resulted in nerve damage and the need for full time pain control. Thanks to an implanted pain pump and supplementary oral pain medications, I'm pretty certain I'm dependent on them.

Donna