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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Interstitial cystitis, anyone?

NEW STUDY! Parasym Plusโ„ข for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Orthopedic/Joint › Interstitial cystitis, anyone?

  • This topic has 26 replies, 7 voices, and was last updated 9 years, 4 months ago by charlieace1125@aol.com.
Viewing 15 posts - 1 through 15 (of 27 total)
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  • Author
    Posts
  • June 29, 2013 at 5:34 pm #476
    Dr. Diana
    Keymaster

    Hi all! Say, does anyone here have interstitial cystitis (it feels like you almost always are about to get a UTI!)? If so, I’d love to ask you a couple of questions (I’ll do so confidentially. Not everyone likes to air their ‘potty habits’!). I’m working on treating this. Yeah! Thanks, everyone!

    July 2, 2013 at 6:52 pm #3856
    jennifer7854
    Participant

    Hi Dr. Diana,

    Yes I have been diagnosed with interstitial cystitis and have been in the ER a couple of times in absolute pain and they tell me all the test are normal and I don’t have any infection. It’s just IC. At this moment I actually do have a real UTI and have no bladder pain at all! My only symptom was spotting. Very strange. I have Ehlers Danlos, POTS, Scoliosis with Harrington Rod, IC and the list goes on. ๐Ÿ™‚

    Jennifer

    July 2, 2013 at 8:10 pm #3858
    Dr. Diana
    Keymaster

    Hi Dr. Diana,

    Yes I have been diagnosed with interstitial cystitis and have been in the ER a couple of times in absolute pain and they tell me all the test are normal and I don’t have any infection. It’s just IC. At this moment I actually do have a real UTI and have no bladder pain at all! My only symptom was spotting. Very strange. I have Ehlers Danlos, POTS, Scoliosis with Harrington Rod, IC and the list goes on. ๐Ÿ™‚

    Jennifer

    It sounds like you may want to hang on to that infection! ๐Ÿ˜‰ Can I ask if you get any strange rashes, especially ones that itch? Or do you have any “goose bump/chicken skin (usually found on the arms)?

    July 2, 2013 at 8:44 pm #3860
    jennifer7854
    Participant

    I do get a strange rash every day after a warm/hot shower around the edges of my arm pits that last a few minutes and then goes away. It does itch during those few minutes. At first I thought it was the towels but tested that theory and it wasn’t. This has been going on for years. Other than that I don’t have any other rashes or bumps.

    July 5, 2013 at 7:32 pm #3869
    Lab-Scientist-Lady
    Participant

    I not sure if I do or not. I get UTI like pain from time to time. It usually goes away, but the microbiologist in me checks to see if I have an infection. I do get rashes all the time and I have Livedo reticularis, eczema, keratosis pilaris, etc.

    July 8, 2013 at 9:42 am #3880
    Jrl_3327
    Participant

    Hi I also have been diagnosed with IC/bladder pain syndrome I get the urgency to go and I have severe bladder spasms. Sometimes I use the bathroom 10x in less than an hour. I also get urethra pain at times. And I get goose bumps mainly on my arms daily I notice sometimes after I urinated I gets chills and its not even cold out. Don’t understand it! When I feel like I have a UTI it comes back normal this started when I was a child then it went away for a few years now it has returned out of control at age 32 I’m now 34. Still trying to find the right treatment. I also get severe left abdominal pain.

    July 14, 2013 at 12:22 am #3892
    Dr. Diana
    Keymaster

    I do get a strange rash every day after a warm/hot shower around the edges of my arm pits that last a few minutes and then goes away. It does itch during those few minutes. At first I thought it was the towels but tested that theory and it wasn’t. This has been going on for years. Other than that I don’t have any other rashes or bumps.

    Can I assume you also have dermatographia (skin-writing)? Are you taking any antihistamines? Thanks so much! We’ll figure this out! ๐Ÿ˜‰

    July 14, 2013 at 12:24 am #3893
    Dr. Diana
    Keymaster

    I not sure if I do or not. I get UTI like pain from time to time. It usually goes away, but the microbiologist in me checks to see if I have an infection. I do get rashes all the time and I have Livedo reticularis, eczema, keratosis pilaris, etc.

    Hon, do you get any rashes that itch, too? (not that you NEED more rashes.) ha

    July 14, 2013 at 10:49 am #3894
    jennifer7854
    Participant

    My daughter has dermatographia but I don’t. She was tested for EDS but the geneticist says she does not have it. She does have POTS, gets abnormally tired and has other symptoms that make me wonder. My Grandmother was known for her dermatographia! As for the antihistamines I take Zyrtec,Zantac and sometimes take Quercetin. The Zyrtec and Zantac actually took my chronic back pain away! I have a Harrington Rod from scoliosis and had been in pain for decades. I owe you a big THANK YOU for that one. ๐Ÿ™‚

    July 14, 2013 at 8:43 pm #3900
    Dr. Diana
    Keymaster

    My daughter has dermatographia but I don’t. She was tested for EDS but the geneticist says she does not have it. She does have POTS, gets abnormally tired and has other symptoms that make me wonder. My Grandmother was known for her dermatographia! As for the antihistamines I take Zyrtec,Zantac and sometimes take Quercetin. The Zyrtec and Zantac actually took my chronic back pain away! I have a Harrington Rod from scoliosis and had been in pain for decades. I owe you a big THANK YOU for that one. ๐Ÿ™‚

    First, OMG! I’m so HAPPY that ZZ meds helped! AWESOME! Made my day! Now, as far as your daughter goes, my research is indicating that hypermobility may not be ‘required’ for us to develop dysautonomia/POTS. It is always amazing to see an entire family with EDS, except for one person. Yet ALL of them develop dysautonomia. Really? ๐Ÿ˜‰

    July 26, 2013 at 5:16 pm #3949
    Jrl_3327
    Participant

    So my son told me his stomach just recently started bothering him every morning and he doesn’t know why. So I got tge glass of water out and had him spit in it and this time he had the stringy thing similar to the phots on the video. So what should I ask his Dr to do? Run any specific blood test or ask him to test him for anything in particular? How do they test for candida? He also noticed any sugar products weather its a juice box kool aid, sweets that’s when his tongue get painful and sores develope. Which he does not have these surgar products that often well he used to take a juice box to school with him every day and it never caused any issues until recently.. so far no luck with any Doc’s they all say never seen anything like it..
    Jamie;)

    July 27, 2013 at 7:41 pm #3960
    Dr. Diana
    Keymaster

    So my son told me his stomach just recently started bothering him every morning and he doesn’t know why. So I got tge glass of water out and had him spit in it and this time he had the stringy thing similar to the phots on the video. So what should I ask his Dr to do? Run any specific blood test or ask him to test him for anything in particular? How do they test for candida? He also noticed any sugar products weather its a juice box kool aid, sweets that’s when his tongue get painful and sores develope. Which he does not have these surgar products that often well he used to take a juice box to school with him every day and it never caused any issues until recently.. so far no luck with any Doc’s they all say never seen anything like it..
    Jamie;)

    Hi Jrl, Most of us battle candida chronically. I have some, I have no doubt, but although FOUR ENT’s didn’t believe my tongue was “white enough” *eyeroll*, it showed up in my endoscopy. Anti-fungal meds don’t really touch it for me. But if he’s getting painful sores, I’d be surprised if your doctors don’t suggested reducing histamine and reducing acidic beverages/food for a while. Dentists may be a better bet. Ours gave our daughter a mouthrinse to help with pain, until hers subsided. Perhaps the docs aren’t used to seeing this because they either aren’t looking or they don’t see chronically ill patients very often? I’m not sure… I’m studying the underlying source of the problem right now. Wish me luck! ๐Ÿ˜‰

    August 21, 2013 at 10:05 pm #4149
    Lab-Scientist-Lady
    Participant

    I not sure if I do or not. I get UTI like pain from time to time. It usually goes away, but the microbiologist in me checks to see if I have an infection. I do get rashes all the time and I have Livedo reticularis, eczema, keratosis pilaris, etc.

    Hon, do you get any rashes that itch, too? (not that you NEED more rashes.) ha

    Sorry, doctor Diana I did not see your question. I don’t always get the notifications. I do get itchy rashes. Sometimes they are localized and sometimes I just itch. My children are the same way. When I was a kid it was much worst. I definitely had dermatographia and my kids have it too. I am always scratching something. At least when no one is watching. ๐Ÿ˜‰
    Shonda

    August 21, 2013 at 10:12 pm #4150
    Lab-Scientist-Lady
    Participant

    Oh, and when I was a kid I got UTIs all the time. This is what my Mom told me, but now that I am older I don’t believe they were UTI. I have had UTI’s before and that is an unmistakable pain! Plus, the microbiologist in me does the sniff test. Sorry to say, but I know the smell of certain bacteria, like E. coli and P. vulgaris.
    Shonda

    August 25, 2013 at 6:10 pm #4208
    EDS99
    Participant

    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

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