Feeling frustrated and losing hope

[AthenasMommy]

Hi everyone,

I just have to vent and need some help here. I've been in this flare for about a month now, and it's not getting any better. I feel like I've exhausted all my options (and meds) and the stress of the fact that it keeps lingering is making it last even longer! Here's the history of this latest flare:

About 10 days before my period, I started noticing more IC symptoms (for me this means more pressure, full bladder feeling, never feeling relief after I pee, etc.) I hope and I pray that when my period comes, it will die down. Nope, keeps going strong! I was set to start the Seasonale continuous birth control pill at this time, so I started it thinking that maybe ironing out my changing hormone levels will help these period induced flares. After 9 days of Seasonale, I couldn't take it anymore. The flare still raged on. Typically, after my period (when estrogen starts to rise again), I get a little better. The addition of the birth control stopped this and I actually felt like the flare got worse! So, after stopping the pill after the 9 days, I got my period again and that lasted for 6 days, and now it's been over for about a week and the flare still rages on! I tested with AZO Uti strips and it's totally clear and normally when I get a UTI (I've actually only had one and it's been before IC started), I feel lots of burning (I get no burning with IC, praise God!)

This time around, the flare causes me the usual horrible pressure and tender bladder feeling, but I've noticed lots of radiating pain as well. I also never feel like I fully empty even though I sometimes cath myself and I do completely empty. :help:

I've tried rescue instills, Prosed DS, pain meds (just make me pass out), Atarax, everything. :cussing: I just wondered if these hormones are still working their way out of my body and that is what is continuing this flare or if it's something I'm doing or not doing.

I also need any advice you can give. I know a lot of people on here have been very helpful in the past regarding things that take the pressure feeling down, but I've tried ice and heat and those things and I was wondering if there is a MED that helps you with those symptoms the most.

My meds are:

Elmiron 200 mg twice a day
Elavil 10 mg twice a day
Atarax 12.5 mg
Quercetin
Aleve as needed
Rescue instills when things get desperate (not working too well lately, I guess I've overhydrated)

I also stay away from tomato, caffeine, coffee, teas all that. When I am not flaring, I eat everything (except coffee and sodas of course) and it doesn't cause me to flare.


Thanks everyone. How did YOU get out of your seemingly never ending flare?? :toilet:


Jessica
AthenasMommy

[ICNDonna]

Aleve is an irritant for many ICers, including me. You might try some extra strength tylenol instead. I know tylenol is not good if you get too much so I suggest you ask your phyician how much is safe for you.

I hope you feel better soon.

Donna

[VickiB]

Have you tried Uristat or AZO OTC for bladder pain? I've heard it's not meant for long term use but it really helps me to get by those really bad days. Sometimes I'll get into an extended flare that I just can't seem to break out of. It almost seems like if I can break the pain cycle the flare will finally begin to wind down.

Sorry you're going through this!
Vicki

[AthenasMommy]

I have tried AZO, Pyridium and Uristat, and they don't work!! Argh!

Donna, I took your suggestion and tried Tylenol instead of Aleve. No difference yet, but we'll see!

I think if I could just get this pain under control, the flare would go away. I'm wondering if it's just taking my body a while to get rid of the 9 days of artificial hormones I took.

Well, I guess until then, I'll just wait...:pray:

What is the longest continuous flare you've ever been in?

[jvr]

Hi Jessica,

Have you thought about getting a PFD evaluation?


Jill:hi:

[AthenasMommy]

I definitely have PFD! I should get back into PT, but don't know of anywhere around here that does it.

I went to an awesome PT in CA who helped me with my PFD. I think I would have got a lot more pain relief if I would've stuck with it. If anyone wants her name who's in SoCal, let me know, she was awesome and treats IC patients.

[jvr]

Hi Jessica,

I hope I wasn't being obnoxious by suggesting PFD. You mentioned that you had tried many things with no relief yet, so I thought maybe you might have another issue causing some complications. I remember one nasty flare I had after starting a new job that went on for weeks. Once I started having my husband do some PT on me it seemed to finally break me out of it over a matter of weeks. I was just trying to think of anything that might help you right now. Maybe the Seasonale or something else might have irritated your bladder reactivating a trigger point or something??? By the way, what a beautiful woman you are!

Jill:hi:

[AthenasMommy]

Hi Jill,

No you weren't being obnoxious at all! I do think my PFD needs to be re-evaluated.

I think my pelvic floor is spasming and that is what's causing the pressure feelings and the constant need to pee feeling right now. DH and I did the deed on V-day, and it's gotten a little worse since then. Oh, the joys of sex with IC..:cussing:

I definitely agree that the birth control messed me up even more. I was in a pretty regular pattern of flaring right before my period and during my period, then getting better as estrogen in my body rose. The introduction of the pill made it all crazy.

I've tried rescue instills to break me out of the flare, but they aren't working as well either. I do think I'll try another one tonight, though. My doctor said they may not work as well cause I'm too hydrated. Makes sense!

Thank you so much about your compliment. A lot of people look at me and are like "how could you be sick and in so much pain, you look GREAT!" If they could only experience one day with my IC, they'd surely change their tune.

Until then... it's back to the bathroom for me... :toilet:

Jessica