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Interstitial cystitis, anyone?
Posted: 29 June 2013 05:34 PM   [ Ignore ]  
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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!

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 02 July 2013 06:52 PM   [ Ignore ]   [ # 1 ]  
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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.  smile

Jennifer

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Posted: 02 July 2013 08:10 PM   [ Ignore ]   [ # 2 ]  
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jennifer7854 - 02 July 2013 06:52 PM

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.  smile

Jennifer

It sounds like you may want to hang on to that infection! wink 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)?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 02 July 2013 08:44 PM   [ Ignore ]   [ # 3 ]  
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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.

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Posted: 05 July 2013 07:32 PM   [ Ignore ]   [ # 4 ]  
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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.

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Posted: 08 July 2013 09:42 AM   [ Ignore ]   [ # 5 ]  
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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.

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Jamie:)
EDS 3, POTS,  fibromyalgia, pseudotumor cerebri, crevical instability, overactive bladder, IBS, Acid reflux + many more

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Posted: 14 July 2013 12:22 AM   [ Ignore ]   [ # 6 ]  
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jennifer7854 - 02 July 2013 08:44 PM

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! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 14 July 2013 12:24 AM   [ Ignore ]   [ # 7 ]  
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Lab-Scientist-Lady - 05 July 2013 07:32 PM

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

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Posted: 14 July 2013 10:49 AM   [ Ignore ]   [ # 8 ]  
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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. smile

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Posted: 14 July 2013 08:43 PM   [ Ignore ]   [ # 9 ]  
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jennifer7854 - 14 July 2013 10:49 AM

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. smile

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? wink

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Posted: 26 July 2013 05:16 PM   [ Ignore ]   [ # 10 ]  
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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;)

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Posted: 27 July 2013 07:41 PM   [ Ignore ]   [ # 11 ]  
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Jrl_3327 - 26 July 2013 05:16 PM

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! wink

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Posted: 21 August 2013 10:05 PM   [ Ignore ]   [ # 12 ]  
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Dr. Diana - 14 July 2013 12:24 AM
Lab-Scientist-Lady - 05 July 2013 07:32 PM

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.  wink
Shonda

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Posted: 21 August 2013 10:12 PM   [ Ignore ]   [ # 13 ]  
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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

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Posted: 25 August 2013 06:10 PM   [ Ignore ]   [ # 14 ]  
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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

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Posted: 25 August 2013 07:00 PM   [ Ignore ]   [ # 15 ]  
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EDS99 - 25 August 2013 06:10 PM

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. 
Shonda

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