Frustrated!

[HeatherP]

I have had this for 5 months now and am very frustrated. I still haven't figured out what my triggers are. I keep a food diary and keep track of how I feel, but sometimes I can eat anything and have barely any symptoms, and other times I eat very carefully and then am in agony.
I have been trying mostly alternative treatments: Chinese herbs, acupuncture, chiropractic, and diet. I have had some relief, but it's on and off and I can't seem to pinpoint what's working.
I am so sick of this. I feel for you women who have had it for years.
:help:

[Skynard]

Can I ask if you are on the DH Aloe Vera or the Cystoprotek? I don't see any of your meds listed. I was diagnosed in July and have been thru the ringer, too. I decided to go back to basics and start over. I eat the same things (exact) things two days in a row to see what sets me off. I know it sounds boring, and it is, but I am compiling quite a list of "yes" and "definate no's". I drink only water and tons of it. I am watching and keeping track of stress and how it affects me, my period and how many days before it starts, when I notice changes, etc. This is going to be work, but I am so encouraged by the amounts of people on here that talk about remission, that I am willing to put the time in necessary to get my life back. I will not allow IC to defeat or define me.

I wish you well on your journey. Feel free to PM me anytime if you need to vent.

God Bless.

[HeatherP]

It really helps to know there are other people in the same boat. I have not tried any meds, just supplements. The elmiron sounds like it takes forever to work and has side effects. I have heard good things about Cystoprotek though. I had a bad experience with a uro on Maui where I was living, similar to one I was just reading about on here. He said it can't be IC until I've has it 8 months. What the hell does that mean?? And he recommended an MRI of my spine, which of course was negative.
However, there is a "pelvic pain" center in SF that I think I will try next.
I've just been hoping the alternative route will work for me. Can you tell me more about DH aloe vera? Yeah, I am ready to go on a brown rice and steamed vegetable diet for a week if I don't find some relief soon.
Oh yeah, I have tried Prelief on those rare occasions that I want to splurge (like tonight; I'm having a party.) It seems to help.
Mine is definitely worse during my period. Ibuprofen helps but I need to take a lot of it and frequently.
Appreciated the quote at the bottom of your post. That really hit home.
Sorry I don't know what "PM" means. I am new to this.
Thanks--
Heather

[Skynard]

Hi - first "PM" means personal/private message - just click on my name and you can contact me directly.

The DH Aloe is an anti-inflammatory. You can go directly to their website (Desert Harvest Aloe Vera) and order samples. They are not cheap, but I would rather take it than the prescriptions. I take two a day. I also have IBS, and they take out the ingredient that typically causes diarrhea problems for those of us with IBS.

I know you don't want to hear it, but you need to get on the IC diet sooner rather than later. You might just be delaying your recovery and put yourself into a bigger flare, if that is what you are having right now. Might want to ask yourself if partaking in the party is just really worth it.....water is also going to become your very best friend. It really is the one magic cure. The sooner you get started the sooner you will start to feel better.

Don't allow yourself to get frustrated with one bad Uro. There are great doctors out there. Start asking around. I was lucky enough to find an IC Specialist that is beyond wonderful and her office is only seven miles from me. The Uro that did my Cysto was not very nice or compassionate and frankly if my husband was not with me, I might have said or done some not very nice things to him. I have since referred many people to my new Urologist. Don't stop looking....they are out there.

Stepping off my soap box now..................

[HeatherP]

Thanks for the info.
I have been on a strict diet for a couple of months now. It is not exactly the IC diet. It is what was recommended to me by the Chinese herbalists. No dairy, no sugar, no alcohol, no fried foods etc. Sometimes it seems to help, but it is frustrating.