Thursday, October 17, 2013


We've all been talking a lot this week about IC Patient Elizabeth and her appearance on Monday's The Doctors. I don't know a single person, or have seen a single post that wasn't so proud of how very Brave Elizabeth was for going on national TV and talking about her IC and how it affects her life! She is a true IC Awareness Hero in my book!

Elizabeth worked tirelessly for a long time writing the show and trying to get them to cover IC and she did it! She got it done! WOW! I have been trying to do the same thing for nearly two years and while I have gotten some stories published, I have not been able to achieve what Elizabeth did - get her and her story on TV! That is a HUGE accomplishment and we should all send her our thanks and appreciation!

I know the show discussed (so I'm not giving anything personal away that they didn't talk about on the segment she did) having a cystoscopy with hydrodistention soon. I know she would like, and I think it would be a great idea if The Doctors did a follow-up segment and followed Elizabeth as she has her surgery; maybe even filming it. That would be fantastic!

I know many of us, and I dare say Elizabeth too, wishes the segment was longer and went into more detail. I feel this way. Given the time spent, I think they did a good job, but there was so much missing if we are to truly have a discussion about how complex IC is and the many treatment options available. 

So here's what I think we all need to do. I want to encourage everyone to write to The Doctors and tell them how grateful we are for covering IC and Elizabeth's story. But express your desire to see them follow up on Elizabeth and her surgery. Ask the show to spend more time talking about IC and the latest treatment options, all the associated conditions, the severity of some IC patient's symptoms which often lead to disability etc.

I have already done this. Let's all support Elizabeth and each other! We got on the air once with a segment that was better than anything we've seen on national TV before. But let's keep on them and overwhelm them with letters from us asking for more thorough coverage! If Elizabeth got them to do the original segment all by herself, think what we might get accomplished if we all get busy writing the show! Make our voices heard. 

I wrote the show several times and to give you an idea, following is the content of my last letter to the show:

Dear Doctors:
I am writing again to thank The Doctors for being one of the first medical programs to do a segment on Interstitial Cystitis when you interviewed IC patient Elizabeth on the show that aired on Monday, Oct. 14, 2013.

I am an IC patient also and feel that, with the time given to the subject, the show did a good job. I can tell you that everyone in the IC Community is talking about it. It is the hot topic on all the IC Facebook sites that those of us with IC use to connect with each other. I am a Facebook friend of Elizabeth's who you had on the show and I consider her to be a true IC Hero for being so brave to go on national television to discuss her IC and how it affects her life. As mentioned during the segment, Elizabeth is scheduled to have a cystoscopy with hydrodistention. I think it would extremely important if The Doctors followed her through this process and perhaps was even able to film her surgery.
There is so much more that needs to be discussed about IC that was not covered on the show. As mentioned, the hot topic on all the IC FB sites is about the show. The overwhelming sentiment is twofold. One is gratitude that The Doctors gave IC coverage which helped to raise awareness by having Elizabeth on your show and talking about IC at all. But the second hot issue is that we are all very disappointed that the treatments available for IC were barely even touched on. Dr. Berman discussed two treatments - Elmiron and the cysto/hydro Elizabeth is going to be having. There are SO MANY more treatment options today and these should be discussed. Dr. Berman also never discussed how severe IC can be in certain patients; many of us have glomerulations and Hunner's Ulcers and some even have exceedingly small, very hard bladders and have extremely small functional bladder capacity which was never mentioned. In addition, many many patients like me have had little to no success with most treatments. I have 2 InterStim sacral nerve stimulators for my frequency and I use bladder instillations for my pain. But even with these treatments, I have never been able to achieve a level of relief significant enough to let me continue to work. I am on Disability due to my IC and overlapping conditions. Many IC patients are in this same situation. The number of IC patients with overlapping, comorbid conditions was never discussed either yet the majority of IC patients suffer from multiple conditions. Along with our IC many of us suffer from vulvodynia, fibromyalgia, irritable bowel syndrome, chronic fatigue, pelvic floor dysfunction, endometreosis, Lupus and more. This is one of the reasons it is so difficult to successfully treat IC patients; it's not just our IC. We are battling multiple medical issues requiring many different approaches to our care.

No two IC patients responds to any treatment in the same way either. I can tell you as a Patient Advocate that speaks to hundreds of patients all the time as well as talking with my local Support Group members, you could survey a room full of IC patients and no two of us would be on the same treatment plan! This is a very important topic to discuss. Many patients are in serious need of pain management but that is hard to find. Finding knowledgeable doctors is a real challenge as well.

You barely scratched the surface of a disease that affects not only women, but men and yes, children. The estimates are that 4-12 million men, women and children suffer from IC and it is believed those numbers are low due to misdiagnosis in men and children, and the number of women still not getting proper diagnosis as well.

Please consider following-up on Elizabeth and her surgery. PLEASE - we hope you will consider a longer follow up segment that covers more of what having IC is really all about. We are grateful for the coverage given to IC but we are in such desperate need of more knowledge about IC. We have no celebrity or high profile individual to speak for us. But those of us in the IC community are trying like heck to raise awareness all on our own. Please help us raise awareness and consider a follow-up and devote more time to this important, but little understood, painful and difficult to treat disease.

Thank you for your consideration.

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