HELP! At the end of my rope. Having a terrible time dealing

[Rachel W]

I was diagnosed with IC more than 6 months ago by my gyno. (After dealing with increasing pain for almost 3 years) Started treatment and went to see a uro. He told me it was OAB and stopped the IC treatment. Within a month and a half all my symptoms were back. So back on the Elmiron I went. I am about 1/2 way through my third month now and still have not gotten any relief. I am now on two additional meds to help me at night and 3 weeks ago they started me on Neurontin to try to help get me through until the Elmiron has a chance to work. I saw my uro on monday b/c the Neurontin makes me so spacy that I can not work. Not to mention that it helps but does not completely mask the pain. So now he is taking me out of work for another 4 weeks in hopes that my body will get used to the medicine and the spacyness will go away.

Right now I feel like I am at the end of my rope hanging on for dear life by just a thread. Last night I had to go to the ER b/c the pain was do bad that I was doubled over and could not walk. (Even after taking a percocet) The doctor came in the room and I told him where I hurt, that I have IC and was confident that's what was causing the pain and that the pain medication I had at home was not working. When I told him I had IC (used the full name not the initials) and looked at me and asked me how I got it?!!? Did I get it from some medicine I took. I just looked at my mother in disbelief. After explaining to him (while in tears) that they are not really sure of the exact cause of it, he left the room and said they would see about getting me comfortable. Which they did. They gave me the good stuff and the pain eased. I was very surprised b/c most of the time when I have to go to the ER b/c of pain I am treated like a drug seeker. (Think it might help that my uro is the chief of medicine at this hospital)

I am following the diet, taking the medications, using the heating pad, trying to get as many suggestions, of things to try, as I can. Yet I still have not gotten any relief. I am a newly single mother (have been seperated for almost 8 months) of a 5 and a half year old son, and am very disappointed in myself when I have to tell him time and time again that "mommy can't right now b/c she doesn't feel good"!! My mother is the ONLY person I have to lean on during all of this. My sister well lets just say we don't have the best relationship, and my friends (the 2 that I have) are busy with their own lives. I feel like giving up! I am so tired of being sick all the time, of being in pain all the time. When all of this started I tried really hard to be positive about it, about everything, but right now...I am having a hard time finding the positive! I don't know where to go from here.

So.....Any suggestions, advice, words of wisdom, anything at all would be greatly appreciated.

(Sorry this was so long, but I really needed to get this all out, so thanks for reading)

[sissygirl]

Hi Rachel--

So sorry to read all you are going through...sounds like you have had a very frustrating time that would test anyone....I hope the Elmiron helps again soon as it sounds like it did before (Were you on other things too that seemed to be working then?)

I hope you get good advice here--I know that many on these boards have found pain management specialists helpful, especially if you don't feel your current plan is helping enough for you to function well.

Sending positive thoughts....

Sissy

[ICNDonna]

I hope you get some relief soon. It's good that the ER doctor was able to give you some relief. You might want to keep a diary for a few weeks, listing everything you eat and drink and your activities --- you might find an unusual trigger. I know I can't eat garlic and it's on the okay list --- you just might be able to find something that's causing you pain.

Sending gentle hugs,
Donna

[KarenAnne]

Rachel, I've had IC for over a year now & felt just like you six months into it. I had trouble finding a good dr. & was put on so many medications with intolerable side effects.
I have my husband for support, he is great, but I found this condition to be very isolating. I couldn't go out of the house for 5 months because of the urgency & frequency, the pain I could handle. But I was urinating every 10-15 min. around the clock.

Even our support systems can not understand what we go through, that is why I thank God for this wonderful website. Can you get into Physical Therapy for your pelvic floor muscles? Every IC patient can benefit from this. It really helps with the pain. Don't give up looking for your personal treatment plan. It took awhile for me to find mine. Research all you can about the different treament options, vent to us, experiment with your diet, stay hydrated, & rest as much as you can. Hang in there.:grouphug:

[sailawaygrl]

Hi Rachel,

I just wanted to add my support for you. It does and will get better, and now you certainly know not to listen to anyone that tells you it isn't IC!! Some Uro's are unbelievable!! I went to a Pain Specialists that asked why I just didn't take Azo? Are you kidding me!!! I never went back, needless to say! I hope he has educated himself about IC, but I seriously doubt it. At the time I was in no condition to educate the DOCTOR either! But I have since found the right Dr for me and we are working toward relief for me.

I still have pain daily, but it is very different than that terrible pain that I had in the beginning. I can't remember if you said you had Pelvic Floor Dysfunction but it is almost certain those muscles will get sore and tight after trying to protect you for so long. I have the book "Heal Pelvic Pain" by Amy Stein, available on this site. I have been to physical therapy and had to stop due to cost. This book has most of the stretches I was given in PT and is highly recommended. It also has help for IBS and other pelvic pain so it is a very diversified book if cost is an issue, I know how tough it is to be a single Mom. I have learned a good bit from it, maybe you could look into that as a source of help.

Lots of people on the site have tips to offer. Keep searching, read the stickies at the top of the subject areas. There is one on how people deal with pain with lots of tips and others that are very helpful.

Wishing you the best.

Sandra

[valkay18]

Hi Rachel -

So sorry you are having such a hard time now!! Can you tell me what you eat on a regular basis? I found that certain foods on the OK list trigger my flare-ups..... For example, whole wheat... Whole Wheat sends me through the roof. I can't eat the whole wheat (brown) noodles or whole wheat bread. I can tolerate white bread and white noodles just fine. As soon as I eat whole wheat, I flare up like crazy. Also, some butters contain lactic acid. If I eat anything with that butter on it, I am screwed! For the longest time, I thought I was following the IC diet to a T, and I was to an extent. Then, I found some hidden ingredients in thinks I was eating. Plus, the whole wheat. Oh, also... A lot of IC people can tolerate yellow american cheese. I CANNOT. The thing that makes the cheese yellow/orange is similar to paprika, which kills my bladder. As soon as I eat it, I am in a horrible flare. I can however tolerate white american by boars head. What you should probably do, is eliminate any "questionable" foods from your diet and go to the basics. By basics, I mean fresh veggies, meat with no additives, rice, oatmeal, etc. It might be boring, but you will probably start feeling better. If you do, you can slowly reintroduce what you were eating, one by one, and determine what exactly causes your flares. You may have some triggers that most people do not have. Some people even find that their water triggers it because of the PH level. You may want to get some PH testing strips to see what your PH level is.

Try this, and let us know how it goes! I was in a similar boat to you for awhile until I figured out that whole wheat killed me, along with yellow/orange cheeses (even colby/jack).