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Posts: 2
Reply with quote  #1 
I have terrible pain but my test was negative.i went to 2 doctors and 2 different antibiotics.When I was young I had my bladder stretched
DID HELP FOR A try not to get that done.I am still in pain but,noninfections.I am back at square 1.took d mannose I did not like it wanted to be sick now what can I do?

Posts: 1,165
Reply with quote  #2 
Very sorry to read that you are suffering so much.  Sadly nearly 50% of UTI tests are negative because the system is so flawed and fails to detect infection. I see that you are US based and you may want to contact a couple of the associations in the US who can help.  Their details are as follows:

Interstitial Cystitis Association (ICA) 
100 Park Avenue, Suite 108A 
Rockville, MD 20850 USA 
Tel: 800-HELP ICA (800-435-7422 

Interstitial Cystitis Network ICN (National) 
4983 Sonoma Highway, Suite L 
Santa Rose, CA 95409, USA 
Tel: 1-707-538.9442

You are lucky in the US to have the latest DNA methods of testing for urine analysis - MicrogenDX and Aperiomics are two such options and you can contact them for further assistance.  They have a listing of doctors and specialists in the US that they work with and the associations above can also help you.

D Mannose only works for eColi, it won’t help if you have another bacteria or bacterias that aren’t ecoli.  It can make you feel nauseous for the first few days so best left alone if you have felt like this.

Couple of other suggestions to help you relieve the pain:

Do NOT drink cranberry juice. It is full of sugar which will feed bacteria and is way too acidic.

Look at your diet and lifestyle. Cut out caffeine, sugar, spicy food and tomatoes and citrus foods for the time being to see if this helps. Drink plain ph neutral water, nothing carbonated as carbonic acid is a bladder irritant. It sounds dull but you need to calm the inflammation in your bladder.

Wipe front to back always. Shower don't bath and no foam bath products in the bath or down below. And practice the bottle washing technique after every bowel movement. A good book to get hold of is the Angela Kilmartin book about cystitis. Lots of lifestyle tips for managing this and her bottle washing technique.

If you are menopausal, it cannot be emphasised enough how vital localised oestrogen is to the urogenital tract. As the ages advance your bladder, urethra and vagina become dryer, more brittle and lose their natural plumpness and ability to cope with bacteria. The urethra widens allowing mor bugs in. Talk with your GP about Vagifem pessaries or Ovestin cream. Obviously a full medical history must be taken into account.

To calm the stinging, use bicarbonate or baking soda in a glass. Much cheaper than over the counter sachets. Use 3-4 times a day to alkaline the urine. Obviously if you are on a low sodium diet consider an alternative such as potassium citrate or get a box of Azo Standard from Walmart or your local pharmacy.  More info here

Icepack between the legs to numb the nerve endings. Put some ice in a plastic bag and wrap it in a tea towel. Put a hot water bottle on your tummy or on your back.

Hope these suggestions help and things improve very soon.  You need good medical care and getting a more advanced test may help to get you there.

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