Thread: Suggested IC diagnosis
10-30-2010, 06:43 PM #1
- Join Date
- Oct 2010
Suggested IC diagnosis
A little background on me: Iím 23 years old and I just graduated from college. Looking forward to going to graduate school soon.
My abdominal issues started about two and a half months ago. Before that, I had been relatively fine. I had harsh periods, but everything else was normal. I started having pain when I would urinate. It was never the Ďburn when you peeí sort of pain that everyone immediately thinks of when you tell them urination pain; it was in my lower abdomen. It was just this feeling of immense pressure that would turn into pain at the end, sometimes excruciating. I figured I had a UTI and made my first appointment with a general practitioner in the area.
As you can guess, no UTI. Perfectly sterile urine. So what was it?
The next month was test after test. CT scans and ultrasounds and blood tests and so, so many urine tests. All of the doctors kept insisting I was pregnant, no matter what the tests said. It turned out that I had a large ovarian cyst. So that was it! It was just a cyst and they could remove it and Iíd be fine.
I had laparoscopy done to remove the cyst a month ago and they also found endometriosis and went ahead and burned it off as well. I was told that I should be feeling better in just two weeks. It didnít quite work out that way.
The pain is still here. Every time I have to go to the bathroom, Iím so scared of it. It doesnít hurt every single time, but when it does it can be teeth-grittingly bad. I also get these stabbing pains in my abdomen, especially when I sit up for too long. This is especially frustrating, since I have a desk job where pretty much all I do is sit up all day. Iíve been having to get up during the night to go to the bathroom as well and the pain guarantees that Iíll spend the rest of the night awake.
Itís been a full month since my surgery and today I saw my doctor for probably the 8th time in the past 2 months. Another urine test, another sterile sample. Thatís when he started to tell me about IC. I had never even heard of it before today but since Iíve been looking into itÖit might be right. He said I might have had it all my life, but the catheter during surgery could have really aggravated it. Or it could be scar tissue from surgery that did it. Or it could have been absolutely nothing. Itís so nebulous and confusing.
I donít know anyone with this condition and itís so vague in explanation. The more I read about it, the more hopeless all of it seems.
Iím just a little scared about all of this right now and Iíd appreciate any advice!
10-31-2010, 02:33 AM #2
to the IC Network.
First of all, even if you do have interstitial cystitis, it is absolutely NOT hopeless. Most people with IC do need to avoid some foods and drinks, but most of us do well most of the time.
I think it would be a good idea for you to put yourself on an IC diet while you're doing the testing (you'll find the link to the food list in my signature at the end of this post). Some ICers find that single step helps more than any other.
For me, the time before diagnosis was the worst. Once I knew what I will be dealing with and started treatment, I began to improve.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
10-31-2010, 03:33 AM #3
- Join Date
- Oct 2010
Thanks for the advice! I've been looking into some of the diets but I love how detailed this one is. And you're right, just being in that state of not really knowing if this is the right diagnosis or not is the worst. My doctor did go ahead and put me on Elmiron, but I'm still at that point where I'm not 100% sure so it's all still a little scary.
10-31-2010, 04:50 AM #4
I agree with Donna - the time before I had a definite diagnosis was the absolute worst. When I finally got scheduled for a cystoscopy/hydrodistention to see if I had IC, I was actually EXCITED because I knew I'd finally know for sure!!
Definitely give the diet a try, especially since Elmiron can often take 3-6 months to become fully effective. Eliminating certain bladder irritants during that time can go a long way to making your life easier. Also, definitely check out the "Exploring Treatments" section at http://www.ic-network.com/treatments/ - I imagine you've probably looked at it already, but don't be afraid to print it and take it with you to your doctor's office you you can discuss options with him/her. Don't be afraid to let your doctor know if you think you may need a little more help controlling your symptoms while you're waiting to see if the Elmiron works for you!!****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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