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Okay, my post disappeared before my very eyes. Did I overrun a limit? I was almost done. I do think I have emerging IC. Doc want to run urogenic testing . I’ve got a history that I think is relevant which includes recent bi-apical lung scarring/fibrosis . I’ve already been treated for MCAS. I’ve got good records if you need it. Doc doesn’t think ‘I’ve got it cuz it needs to be more painful. is that true?
EDS99
Hi EDS99,
Just my opinion, but everyone’s Interpretation of pain is different. Therefore, when the doctor tells you that he thinks it needs to be more painful for you to have IC, I think that is a ridiculous answer. You could have nerve damage or something that would make it see less painful to you. When I have a UTI it is a terrible burning and pain, but for others they don’t know they have one until the infection reaches the kidneys and the are sick. I hope you can find a better doctor.
ShondaOkay, my post disappeared before my very eyes. Did I overrun a limit? I was almost done. I do think I have emerging IC. Doc want to run urogenic testing . I’ve got a history that I think is relevant which includes recent bi-apical lung scarring/fibrosis . I’ve already been treated for MCAS. I’ve got good records if you need it. Doc doesn’t think ‘I’ve got it cuz it needs to be more painful. is that true?
EDS99
Yikes, Hon, the limit is HUGE! I’ll let the webmaster know, in case there is some sort of glitch over here, OK? She is working on some updating, and you know what that does!! Jeez, I have a love/hate relationship with technology. Please bear with me, as she is on vacation for 2 weeks. Crazy, huh? I’m working on something for our IC right now! Lots of us have lung scarring/fibrosis. I don’t believe either are related directly to mast cell disorders, personally. Histamine IS found in IC, so it’s a good idea to keep histamine down, though. Painful? If it is big and bad it can cause chest pain, but many times, it is found on an x-ray taken for other reasons, so I disagree, unless yours is ‘big and bad’. Do you have a pic/X-ray? You KNOW I’d love to see it! Thanks so much. I’m hoping my post won’t disappear before my very eyes now! 😉
Shonda, I understand your point but my detailed explanation … The one that disappeared…. put his comment in a better context. He actually is thinking more in terms of nerve issues and I think neurogenic (sry, sr. moment.. i mispelled last time) testing will cover IC, nerve issues, and anything else that course cause urgency and cramping. He’s the first doc to go through EDS issues Francomano style. So he’s the best but until something else comes along. And he will listen and discuss to uncover what the issue is. Right now he asked me to make sure a fairly recent lumbar MRI shows no tethered cord (request for a re-review from the ortho). So he is doing it right. The statement was just out of context.
It always nice to know someone will come to my defense. I don’t know what I would do without the moral support of my fellow cyber EDrs!
Hi! I am new here. .. kinda. I just managed to register! Thanks Dr. Diana!
I have IC, but fortunately it is in remission, YEAH!!! After months of searching, I found a GREAT dr. She is highly knowledgeable and got it under control fairlyquickly. She gave me an antihistimine (among other things) that helped me the most. IC is a NASTY!
Shonda, I understand your point but my detailed explanation … The one that disappeared…. put his comment in a better context. He actually is thinking more in terms of nerve issues and I think neurogenic (sry, sr. moment.. i mispelled last time) testing will cover IC, nerve issues, and anything else that course cause urgency and cramping. He’s the first doc to go through EDS issues Francomano style. So he’s the best but until something else comes along. And he will listen and discuss to uncover what the issue is. Right now he asked me to make sure a fairly recent lumbar MRI shows no tethered cord (request for a re-review from the ortho). So he is doing it right. The statement was just out of context.
It always nice to know someone will come to my defense. I don’t know what I would do without the moral support of my fellow cyber EDrs!
I am glad. I am so tired of doctors when they give pissy answers. I worked in the medical field so I have gotten better at finding good doctors, but I still run into plenty of bad ones. I have a low tolerance for bad doctors. Especially ones that take your money and then tell you that they can’t help, because the don’t deal with that issue. My dad is very sick and has been bounced around this year. He is having to go back and forth from one gastro doc to another, because one does one thing and the other another. It use to be something a PCP would take care of, and my dad is still waiting to get things taken care of. I swear I think someone could bleed to death before they get help. Anyways, I didn’t want you to think you didn’t have IC, because of one doctors opinion.
ShondaDiana, I don’t have an X-ray of my bladder ( it’s a lung X-ray). When my GYN sent me for a pelvic ultrasound, both offices messed up and did not schedule with the same radiologist that I have had 20 YEARS of pelvic ultrasounds with and they assigned a tech. So I requested the MD and they said she was not there and gave someone else. So when I explained my symptoms (cramping) and my huge cancer risk and how the original MD always would do a complete check including bladder and kidneys, this mature MD said “Your MD did not say to check the bladder and they get upset if we find something ” …so she did not do it!!! @?/$@!!! Can any indication of IC be seen in an ultrasound ?
Diana, I don’t have an X-ray of my bladder ( it’s a lung X-ray). When my GYN sent me for a pelvic ultrasound, both offices messed up and did not schedule with the same radiologist that I have had 20 YEARS of pelvic ultrasounds with and they assigned a tech. So I requested the MD and they said she was not there and gave someone else. So when I explained my symptoms (cramping) and my huge cancer risk and how the original MD always would do a complete check including bladder and kidneys, this mature MD said “Your MD did not say to check the bladder and they get upset if we find something ” …so she did not do it!!! @?/$@!!! Can any indication of IC be seen in an ultrasound ?
I’m sorry my post was so sloppy! I understood that you were talking about your lungs, and my comment on lung involvement not being painful unless it is big and bad was meant for your lungs! Too many organs in one discussion! ha. Unfortunately, an x-ray doesn’t help figure out IC. Sometimes they’ll go into the (distended) bladder and take a look around. Ouch, They like to do that especially if there are signs of Hunner’s ulcers. Mine was fairly mild and just sort of fit the profile — sense of urgency, some pelvic pain, it felt like I was getting a UTI, but there was no infection. I *think* I have figured out how to turn that level of IC around. I’m not sure if it would be effective once ulcers develop, though. So I’m scoping out some patients for potential treatment in a “mini-trial”. 😉 Let me know if anyone may be interested! Thanks, guys!
I was diagnosed with IC by a pelvic pain specialist and she gave me a HUGE amount of things to try. I have a mixture of natural, herbal and prescription. I would be more than happy to share what she gave me. Most of the stuff I never saw on the internet through my research. The information she gave me is several pages, so it would be difficult to put into a post. The meds she prescribed me were; Atarax, Desipramine, NSAIDS (over the counter–max dosages, and vaginal Valium (to relax the pelvic floor). The Atarax helped me the most, but I needed almost everything she suggested to get the pain under control. I suffered for 4 months in excruciating pain and had no idea what was wrong. I couldn’t find a doctor who knew either. Finally I was referred to Dr. Ellis who knew what it was and was able to help me. I see her as a genius and an angel. I know the pain associated with IC and I don’t want to see anyone else suffer like I did and not help. I am more than happy to share my list if anyone is interested.
Diana,
So you didn’t have pain like the other’s in this thread talk about. I feel the same as you: urgency and some cramping. It waxes and wanes. I’m not formerly dx’d with anything that explains that but, as always, Im interested in your trials. Let me know if I can help.
EDS99,
I was diagnosed with IC several years ago and had the same symptoms as you, the urgency and frequency. It would also wax and wan. I never thought the horrible pain I was having was IC pain because I didn’t have the same symptoms as I had before. It was really a surprise to me when my Dr. told me it was IC. I am back to the urgency and frequency. Apparently there are 2 different flavors, the pain or the frequency/urgency.Thanks sixboots (although I’m not happy to be edging closer to one more Dx).
Okay, here’s the million dollar question: if anticholinergics can cause IC or bladder issues, why the heck isn’t there a concern when we are on them or more surveillance? I really think the ketotifen is causing this. I’ve cut back on it and it has gotten better. I’m thinking of dropping it altogether.
And BTW, it really isn’t good for one’s brain either ….
Hi Dr. Diana.
My 16 year old just diagnosed with EDS, POTS, common variable pain disorder of hand. I have IC. Yes, I think there is a correlation. I knew IC was a syndrome when my urologist didn’t think so. This diagnosis of my daughter has made my struggles over the years crystal clear.
Thank you for being a great educator. I admire your will.
All the best,
Bella
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