Interstitial Cystitis - Anyone Have This? Pots-Related?

[iheartcats]

My POTS likes to throw out new issues once in a while - - you think you get some things under control and wham, here's a surprise.

I was unfortunate and had C-Diff last winter. I took the proper meds and healed up, but I started to get more UTI's after. I do what I can to avoid them, but they kept coming back.

Now I'm having symtpoms (frequent urination, very slight burning, urgency). Not terrible, but they are there. The Urologist wants to do a 'direct stream' test (those hurt so much!) because I don't want to use antibiotics if I don't have to because of the C-Diff I had and, obviously, no need to take them if they aren't going to help.

They think it might be interstitial cystitis rather than a UTI.

I'm a bit stressed over this as I'm just getting over a slight stomach bug and will have to miss yet more work to go get this. But the UTI symptoms are so uncomfortable.

When I research interstitial cystitis, it doesn't look like much can be done. So I'd rather it NOT be that.

[Maiysa]

Hi Cat Lady,

I don't know much about this, but wanted to say that i recognize it because I have been reading a bit about mast cell activation and mastocytosis. This interstitial cystitis is usually mentioned. Do you have MCAD? If you are not sure, you could get your tryptase levels checked. Issie is quite familiar with this as well.

Hope you are feeling better,

Maiysa

[LindaJoy]

Yes, I have interstitial cystitis. Don't know what is causing it, but I suffer with bladder pain and pressure, urgency (many times can't make it to the bathroom), frequency, back pain. I've had it diagnosed, but as to a cause, like with everything else I have, no one knows.

I have noticed that dyes in meds bothers my bladder, certain meds period do, and other things. Other times, I just plain have symptoms without my knowing what I did to trigger them.

Hey, Maiysa, yes, I've read many articles and postings about the connection between mast cell problems and IC. I've heard a connection between eosinophil diseases and IC exists, as well. I think even those with Lupus can have it, as can people with other autoimmune problems. Biotoxin illness can cause it, as well. Geeze, I'm a big help, aren't I.

Anyway, I feel your pain and know what you're dealing with, and I am so sorry.

Take care.

Lindajoy

[iheartcats]

I had some testing done and they don't think I had MCAD. I remember doing it a few years ago...I have bad allergies, but they didn't think it was MCAD.

I do get high ANA-levels and have some kind of autoimmune thing they can't figure out going on! At least, autoimmune-eds-POTS is somehow driving me mad!

I hear the interstitial cystitis can come and go and they aren't sure why, either. I'll have to keep track of what I'm eating, etc. but it did really start to misbehave after fighting C-Diff w/ hardcore antibiotics.

I guess I'll have to venture to the Urologist for the test to know for sure. The bladder pain/urgency is a real hinderance. I feel like I'm always on the lookout for toilets.

[Maiysa]

Hi Cat Lady,

They have probably changed the mast cell protocol for diagnosis if it's been a few years. Some people don't have elevated tryptase levels, but there are other ways to test for it. Hard thing is finding a doc to diagnose it. But from what I'm gathering is that so many people with dysautonomia have mast cell and EDS. I have found several blogs and even facebook groups of people who have all three diseases. I just posted some information about Dr. Driscolls book, the Driscoll Theory Part 2 and she is a wealth of information if you can get the book. I will let you know if I come across the IC issue.

Thanks Lindajoy for that other information. I was not aware that it runs in those groups as well. I'm no help either.

Maiysa

[jpjd59]

Cat Lady:

You poor thing!! My daughter has also had those urinary tract symptoms since developing POTS. We are not sure what causes them. She asked the doctor and he said that he did not know but that since her entire nervous system was out of control, and that the bladder has a lot of nerves connected to it, that it made sense that the bladder would be affected.

Hope you feel better soon!!!

[bellgirl]

Bladder spasms can be very painful; if they get really bad I take Urogesic Blue; it relaxes the smooth muscles, but IC is chronic inflammation and a more severe problem. I've often wondered, since I have always had bladder issues over the years, whether this could be a part of my problem. I take flax seed oil for inflammation, vitamin C and cranberry capsules on occasion to ward off UTI's and drink plenty of fluid. It's another doctor to go to; I hope you don't have it, because I know it's a whole other diagnosis and irritating to say the least!!