Diagnoses Sort of?????

[Sheltie Lover]

Hi everyone. I hope this find you all well. Well i went back to see the wonderful Urogynecologist today and he thinks what I have could be the beginnings of IC but he is afraid to give me that diagnosis since I am not presenting most of the symptoms. My main symptoms is urgency and urethral pain. He had switched my birth control and given me the PST test in which I had no reaction. All the birth control did was give me a massive breakout on my chin. I feel like I am 16 again so he told me to go back to my old one because we really did not benefit from him doing that.
So, he has prescribed Elmron for me to try and see if that will work. Any advice? I am really nervous to try and I am still upset that we arent for sure that this is IC. I am so scared of getting worse and this Dioc does beleive that things do progress so that is so scary to me. I would appreciate your imput as usual. You all are so awesome at making me feel better.
Amy

[creatingkarma]

Have you asked your doctor about having a cysto/hydro? I would really recommend that you see about having one, which should give the doctor a better clue as to what's going on with you. I don't understand why you're being prescribed Elmiron if the doctor isn't sure if you have IC or not, especially since it can take 3-6 months before you can even tell if it's helping. I would really strive to get a definite diagnosis, but that's just me.

[ICNJess]

I'm in agreement with Karma. If it were me, I would ask for a cysto/hydro, just so I myself could know if it is IC I was dealing with or not. At least that way, if it doesn't show a thing, you could move on and try to find out what's wrong. And if that does show IC, you can try the Elmiron without any doubts in your mind as to what you are dealing with, and if it is the right med for you, you know?

Hugs,
Jess

[Sheltie Lover]

The thing is, that not every doctor believes you need hydro anymore for diagnosis. They are moving away from invasive tests. WE talked about cysto and he says most of the time it is painful for patients and the result is you see nothing but the patient still has IC. I have taken tests for him and everything shows I am just on the edge of having IC. I am seeing an awesome doctor and he sees no need to put me through more tests at this point. I am very happy to have a doctor that is willing to try treatments rather than sit and wait for me to get worse. Elmiron will possibly work. My issues are mainly urethral so a hydro is not going to show anything with that anyway! I have had plenty of tests that would have shown if it was something serious such as cancer, etc. Everything comes back perfect. Theres is nothing else but IC, yet it would be beginning stages at this point.

I am really looking for some encouragement since I am not getting much from my family. My husband just said tonight that he thinks I have talked myself into having something wrong with me so I am not in the best of spirits. He is only concerned about hairloss that the meds might cause which has a slim chance of happening.

[vm]

If it were me I would try the Elmiron. If it doesn't help you can stop it. If it does help - then cool! :) I had some nausea the first few days on it, but that went away and that is the only side effect I have had from it in 4 and a half years. I think it's worth a shot if your doc is recommending it. It's given me my life back. :)

[ICB]

Amy:

In most IC patients, IC is NOT a progressive illness. We may have flare-ups and our symptoms may wax and wane, but overall your symptoms are not likely to get worse.

If your symptoms are in the urethra, Elmiron may not help in the short run. I would have imagined that your healthcare provider might have put you on an antihistamine, a drug for nerve damage and/or physical therapy; for quicker relief of your symptoms.

There is a possibility that you may be suffering from some type of nerve entrapment that may cause your symptoms; physical therapy and possibly a muscle relaxant may be helpful. You may want to visit the following website: www.jmweissmd.com. This is the homepage for The Pacific Center for Pelvic Pain and Dysfunction, they are experts on pudendal nerve entrapment and IC. I suggest that you check out their page entitled "What is the Cause."

A dietary supplement that you may find helpful for urethral irritation is Desert Harvest Aloe Vera. You can read information on this product on www.desertharvest.com.

I know how stressful it is to have to continue waiting without a conclusive diagnosis or treatment regimen. The worst part about being an IC patient is having the patience to wait for answers or for the meds to kick in.

We're all here for you! :grouphug: Your family and friends may not understand, but we do. Keep doing your research and promise yourself to take it one moment at a time. Things don't seem so overwhelming when we think of them in baby steps.

Best wishes, ICB :flower:

[ICNJess]

I suppose you are right, since your symptoms are urethral and not bladder the hydro/cysto would be pointless. I hope you find a diagnosis and relief soon. :grouphug:

[Sheltie Lover]

Thank you all. I am definately going to check out the desert aloe so thank you for that suggestion. Also, I did PT and have some valium prescribed by another doc but I dont take it all the time. I dont see a difference when taking it. I just sleep better with those!:smile tee

My doc is awesome. A friend of mine went to see him the same day and he is going to do the botox injections for her. He goes above and beyond for his patients so I really trust that he will find what is right for me.

My husband thinks I should just stop taking my BC pill to see if that helps. I am not opposed to that but feel like that could possibly worsten symptoms? Anyone experienced with that? I jsut feel if that was the right road to take, the doc would have suggested it. Any thoughts?
:pray: