Helping women with chronic illnesses
ChronicHealing.com

Interstitial Cystitis Test Developed

Sandy of Fighting Fatigue sent out a tweet this weekend regarding interstitial cystitis that really got my attention. It included a link to a post on her site, Fighting Fatigue: Urine Test Developed To Diagnose Interstitial Cystitis. On July 24th, the Interstitial Cystitis Association (ICA) reported regarding the development of a urine test to diagnose interstitial cystitis (IC) as follows: “The new, patent-pending test detects the presence of antiproliferative factor (APF), the urinary marker unique to IC”. The The Interstitial Cystitis Association’s press release also says “the test is said to take as little as 30 minutes and will be easier and less costly for patients than invasive cystoscopy with hydrodistention, often used to help diagnose IC”.

IC_wwwsxchu_1211480_happy_puzzle

After reading Sandy’s post, I went digging through my cluttered inbox and, sure enough, found an email from the ICA regarding this milestone. I am grateful for her message on twitter because I had not yet seen the email from ICA.

Speaking as a patient who had interstitial cystitis for 12 years before obtaining a diagnosis from the 4th doctor from which I sought relief, I am thrilled that this test may prevent others from experiencing what I went through. I had 4 cystoscopy with hydrodistention procedures done before finally getting diagnosed with IC. I had been on numerous medications, none of which helped my symptoms and some of which worsened them. I underwent an awful urodynamics test. In the meantime, no less than 3 urologists told me that I did not have interstitial cystitis.

The fourth doctor, a pelvic pain specialist who treats lots of IC, diagnosed my interstitial cystitis 12 years after symptoms began suddenly and brutally with what I now know was a very severe IC flare. With proper treatment for my IC, the interstitial cystitis symptoms that bothered me most (urinary urgency, urinary frequency, bladder pain) have improved markedly. I have had some IC flare-ups since beginning treatment 5 years ago. However, the improvement is remarkable. I am very grateful to have finally received the correct diagnosis because it was the key to getting appropriate treatment.

If this test can prevent others from needing to have cystoscopy with hydrodistention done, that would be a wonderful advance. Not only is the cystoscopy with hydrodistention procedure invasive but generally it is performed under general anesthesia. I won’t scare anyone with the details of the one I had while awake. Let’s just say it was barbaric and I do not think it is ethical!

Thank you to Sandy for bringing this to my attention. I believe this will be quite a milestone if it makes it to market. Diagnosis in 30 minutes by a urine test rather than in 12 years by a fourth cystoscopy with hydrodistention? That is quite an improvement that will potentially save people pain, time, money, and risk of complications from the current procedure.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

Reading: Interstitial Cystitis Test Developed

8 comments

1 AlyssaNo Gravatar { 07.28.09 at 10:33 am }

I’ve been reading about this also. I was personally falsely diagnosed with 14 UTI’s before finding out I had IC. That was 14 times on antibiotics that I didn’t need and years of suffering without proper treatment. I think this new test should be standardized in a primary care setting and given upon first complaint of chronic urinary pain.

The hydrodistention was actually very beneficial for me but I understand that that’s not the case for most people. Any research and devlopment for this disease is great and encouraging!
.-= Alyssa´s last blog ..Report from the nest. =-.

2 JeanneNo Gravatar { 07.28.09 at 10:44 am }

Alyssa,

Isn’t this test exciting news? I could write a book on what I went through in that 12 years preceding diagnosis. I’m sorry for what you went through!

I had heard that some people get symptom relief from the hydrodistention itself. In my case, a combination of oral medication for IC plus bladder instillations has made all the difference in the world. While I was apprehensive at first about self-catheterization at home to administer the bladder instillations, it is really not that bad at all. The relief it provides is well worth the effort. I am grateful I finally got diagnosed properly because my symptoms were severe and the improvement I have had with treatment is immense.

Jeanne

3 Melissa RalstonNo Gravatar { 07.29.09 at 2:26 am }

Thanks for posting on this J, I for one have not heard of this latest development.

As Alyssa was mentioning, I’ve also gone through the UTI but “no UTI” cycle with my doctors prior to learning that I had IC. I’ve had to endure 4 cystoscopies with biopsies to confirm the diagnosis, which I found somewhat painful since I did not have any anaesthetic to do these procedures. I should be an old pro at un-anaesthesized prcedures but at last, no I’m not! I’m all for the development of any general test that would save you from this procedure.

I’m wondering if there is the false-negative possibility with this test where it fails to pick up the disease? But still, it does save from the more invasive procedure of having the hydrodistension, and since it can attempt to be treated without the procedure, it’s wonderful if there is a way to diagnose it accurately the first time around!

Thanks again for informing us on this since IC appears to be the evil twin of endo.
.-= Melissa Ralston´s last blog ..Parenting and Illness: Part 1 =-.

4 JeanneNo Gravatar { 07.29.09 at 12:56 pm }

Melissa,

This really is exciting news.

Like you and Alyssa, I was told many times that I had a urinary tract infection when, in retrospect, I did not. While my doctors did urine tests to check for infection some of the times, many other times they prescribed an antibiotic to me simply based on symptoms. I have no doubt that numerous times I was given antibiotics were IC flares rather than UTIs. I was definitely prescribed antibiotics times that I did not need them.

Of the 4 cystoscopies with hydrodistention I had, one of them was without anesthetic. (I am not counting the local anesthetic gel they used because it did absolutely nothing for me but it seemed to reassure the doctors and nurses that they were not torturing me when they actually were)!!

That cystoscopy was so painful I had waves of tears streaming down onto my chest and I kept begging them to stop. (I don’t know if I’ve ever cried that many tears at once before or since). When I say begging, I mean BEGGING. They continued on and seemed oblivious to the fact that I was in absolute agony! They just kept filling my bladder more and more. They kept telling me they had to keep going because they had to see how much my bladder could hold. I kept explaining to them (as best I could through sobs) that I couldn’t take it anymore and I needed them to stop!! It was truly barbaric. I wouldn’t wish it on my worst enemy. I almost passed out from the pain. My vision kept getting funny. I actually reached a point where I wished I would pass out from the pain. It was that bad!

Back then, my IC flare was so bad that I couldn’t sleep through the night because I was getting up about every 15 minutes, on average, to use the bathroom… all night long. I was catching sleep in 10 or 15 minutes chunks. After about 10-15 minutes asleep, I’d be awoken by the bladder pain and then it would be time to run to the bathroom again. It was totally out of control. The one day I left the house for an appointment with the gastroenterologist… and by the time I’d driven there (10 minute drive) I thought I was going to burst. I had never been to this office before and it was one of those offices where the rest rooms are located out in the front and you need to get a key from the counter to access them. I went flying in the door, unable to stop to simply say hello or give my name, and I cut to the chase by asking about where the bathrooms were located. The woman could see from the agitated look on my face that this was no time to ask who I was or which doctor I was there to see. She immediately grabbed the rest room key and told me where to find it. After using the rest room, I returned to the front desk. Embarrassed at not even having said so much as hello to her, I thanked her for the key, told her who I was and who I was scheduled to see… and then explained that I would likely be needing the key again shortly.

I think any test potentially could have some false-negatives. I know cystoscopy has this problem. I think I read (don’t quote me on this) that it only catches about 3/4 of IC cases. I just think it would be awesome if there were a test available that prevents even some patients from having to undergo a cystoscopy. I hope that things move forward with this test because it could help so many people!

As far as the evil twin reference, I came across the “evil twin” expression regarding IC and endo a few years back. Here’s a link to a research study regarding IC and endo:

The evil twins of chronic pelvic pain syndrome: endometriosis and interstitial cystitis

So many women have both IC and endometriosis!

Thanks Melissa!

Jeanne

5 YayaNo Gravatar { 07.29.09 at 4:47 pm }

That will be amazing. Maybe I will actually not be scared and finally get diagnosed (?).
.-= Yaya´s last blog ..Sometimes All It Takes…. =-.

6 JeanneNo Gravatar { 07.29.09 at 7:23 pm }

Alicia,

Well, the test is not available yet. I know I made cystoscopies sound pretty scary. I feel I should say this: try not to be be afraid of cystoscopies if this test doesn’t come out soon enough to help you. It was the unanesthetized cystoscopy with hydrodistention that was so very brutal. Say you were to have a laparoscopy for endo anyway, they could do a cystoscopy too while you’re under anesthesia for that (need to find the right person or combination of doctors to make this work). That’s what they did for me… two things at at once. (One cystoscopy was when I was under anesthesia for lithotripsy to break up large kidney stones that wouldn’t pass). I’m not saying I didn’t have any pain afterwards but it was not that bad, relatively speaking. All I know is I am very, very grateful that my IC finally got diagnosed because the improvement of my symptoms has been a radical change. So, I just wish I’d found the right doctor sooner!

Jeanne

7 AlyssaNo Gravatar { 07.30.09 at 10:11 am }

Yaya, I didn’t know you were suffering from bladder stuff, too.

I can’t stress enough how glad I am that I got diagnosed. The medication took about 6 months to do its job, but I can now say that I have a mild case of IC, compared to the agony I used to be in. I can now control my symptoms largely without medication through retention and relief exercises as well as timing when I drink water and how much I drink.

You don’t need to go through anything the way you don’t want to. It took consulting with 3 urologists before I found one that did the cysto and distention under general anesthesia. I was out and about getting lunch with my mom 45 mins after the procedure. I feel terrible that so many people have it without anesthesia, because with it, it was seriously a piece of cake for me.

You are you own best advocate and you have the right to trust your care to only those you are completely comfortable with. Don’t give up until you find them.
.-= Alyssa´s last blog ..less business, more trip =-.

8 JeanneNo Gravatar { 07.30.09 at 1:50 pm }

Alyssa,

I agree with you that getting interstitial cystitis properly diagnosed can provide tremendous relief. I’m pretty sure I know which medication you’re talking about (I don’t usually get into brand names on the blog) and it took several months for me too. (I had been told it would be that way). I also do bladder instillations. The combination of oral medication for IC and bladder instillations for IC has made a world of difference for me! I too used to be in agony. If only all of my illnesses responded to treatment as well as IC has! I tried exercises but have had better luck with the medication for symptoms. In my case, timing when I drink water and how much seems to have limited benefit. So I am grateful that my doctor found the combination of medications that works for me. That’s awesome that you’ve found a way to manage symptoms via natural measures.

I agree that getting diagnosed with IC doesn’t have to be barbaric… The unanesthetized cystoscopy with hydrodistention simply should not be performed, in my opinion. That’s great that you felt so well after your anesthetized cystoscopy. I wasn’t doing quite that well after mine but, then again, I always had either a laparoscopy or a lithotripsy the same day as my cystoscopies. So, of course I wasn’t out and about like that.

You are right we are each our own best advocate.

As far as finding the right doctor for this issue, I actually live in the same city as Alicia and know of a doctor who could compassionately check to see whether she has IC. It’s the very same doctor who finally diagnosed me. Alicia has a ton on her plate with infertility treatment and adoption and I’m guessing that the IC issue is not at the top of her list right now but the good news is that I can direct her to someone who knows IC and cares deeply about pain management issues.

Thank you for popping back over with a comment for Alicia, Alyssa. Have a great day! 🙂

Jeanne

Leave a Comment

CommentLuv badge