posted
I guess I need to go to a Urologist now. I'm so tired of adding docs to my list.
I've had an episode happen to me 8 times since Jan 5 (that was the first episode) and I have no idea what it is. I've been told it could be IC.
Here is what happens. I urinate totally fine and then upon getting up I feel a weird pressure. This then becomes more intense over the next 10 min and I have a sudden urge to go again. But when I try only a drop or 2 comes out. That's when the real pain starts!
I get a shooting pain up my urether and sudden chills all over my body. It hurts horribly to sit or stand. It's hard to describe but it is scary and debillitating.
I've learned to lay flat on my back and it eventually goes away. This can take anywhere from 20 min to 4 hours to subside.
I know it is not a Urinary Tract Infection. I've been tested and it was negative. Also there is no burning like with a UTI.
What the heck could this be? I've tracked it and there is no pattern. I thought it could be endometriosis on the bladder but endo usually only flares during menstruation and this happens off and on all month.No pattern. Also, I haven't noticed it is after eating anything particular (I keep a daily diary)
Any ideas? I would love to hear from those with IC or similar bladder pain and also to know what you do to help this condition. After reading up on this I guess I could have it.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
I have the same problem. DO you have neuropathy in your saddle area? I was told that this is related to my Lyme infection. I was placed on both Neurotin and Enablex and found that it really helped me.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Hello, I have had a lot of urinary tract issues for years....before i realized that I had lyme (it was called "CFIDS/M.E.") I diagnosed myself with I.C. and did a lot of research and experimenting. Mine was extremely painful with almost constant urgency, etc.
Being inclined toward natural remedies and herbs, I changed my diet to exclude all citrus, tomatoes, spicy foods.....was already off wheat and dairy. I eat poultry, green veggies and brown rice. Everything organic. I also drank healing teas and changed my coffee to low acid decaf (see puroast.com) and added chicory and dandelion to the drink.
Everyone has their trigger foods with i.c. I can't handle "hot" things like ginger or cayenne or curry. That would give me a bladder flare in a jiffy.
Even with the veggies, there are some people with i.c. who flare from those that are high in oxalic acid.
Your issues may be different than mine......just thought perhaps my experience could help, as this particular lyme disease symptom is far improved for me. With bladder issues, each person is different: some want hot packs, some cold packs. Some can take sitz baths, but i can't....they irritate the urethra for me.
Homeopathic cantharis 30x or 30c can also be helpful, as is Hylands "bladder irritation" formula.
One other thing that has helped me is to drink lots of warm water rather than cold water. It is soothing.
Sending thoughts of wellness and ease....
Posts: 164 | From North America | Registered: Mar 2009
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posted
I've had IC for a few years now and do the same as the above poster with acid foods. Actually just recently since i've began to treat, i've notived they have gotten worse.
I think its related to lyme coinfections.
Posts: 319 | From nj | Registered: Jul 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Have you looked into D-Mannose? The reviews are very encouraging.
posted
Are you taking a good probiotic? My daughter and I have IC and notice a big difference when we take 100 billion in capsules 2x a day.
Sorry about your struggles.
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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posted
From what my LLMD says it is related to Bartonella. He feels that it will get better with treatment. I was diagnsoed with IC in 2005, way before I knew I had Lyme and Co's.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Riverspirit- my diet is just like yours.
The IC diet is worth a try Txlymie- it really helps me to keep my bladder symptoms under control...that and taking prelief before meals I think may flare the bladder.
I dont eat any packaged foods or go out to eat..everything is home cooked and well worth it.
I also want to add that often those who have had IC for awhile due to the increase in voiding etc.. also develop Pelvic floor dysfunction (often overlooked by many Doctors)
Physical therapy is used to treat this.. for me it turned out that the Pelvic floor was more the cause of the bladder symptoms than the bladder itself
As Lymetoo said it is very important to seek out a urologist who knows how to treat interstitial cystitis..the ICA has a list of doctors thru the website lymetoo gave above www.ichelp.org. they also now have a Facebook page..which is a good source of info as well as a place to ask fellow patients for Dr referrals.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Here is a good article I just came across regarding IC and Pelvic floor dysfunction. The Dr mentioned in the article is one of the top IC specialists in the country it is from 2001 , but still contains good info.
Also mentions the positional changes and how they affect pain with IC
posted
I get what I call "pee chills" especially in early part of day. Never had a fever and doxycycline never got rid of that feeling. Recently on Bactrim this has improved and my other Bart like symptoms like-wise so I assumed it was the Bart/BLO causing this. I also notice taking B-50 complex in morning can make this more intense -- so I now take that later in the day.
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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