Interstitial Cystitis

Interstitial cystitis… the phrase that has haunted me for years.  I have suffered with chronic bladder and pelvic pain for longer than I can remember, and as of now it is looking like this is the biggest culprit.  I am seeing several specialists for this condition and have many different procedures and treatments planned over the next couple of months, in the hopes of finally getting some relief of these excruciatingly painful symptoms.

So, what exactly is Interstitial Cystitis?  Interstitial cystitis, or chronic bladder pain, is an autoimmune related disease.  This means that although it is often found with autoimmune diseases, interstitial cystitis itself is not considered to be an autoimmune disease.  It is often found in patients who already suffer from fibromyalgia, chronic pain and other autoimmune diseases.

Interstitial cystitis feels like a bladder or urinary tract infection.  The bladder feels full and painful, and most often is accompanied by at least one urinary symptom, such as urgency or frequency in urination.  Interstitial cystitis can be a debilitating condition in some cases, while others have mild symptoms and can manage this disease with diet and lifestyle changes.

Up until recently, there was one medication on the market for interstitial cystitis.  That medication was called Elmiron, and there is now a class-action lawsuit involving this drug.  It was allegedly causing eye damage in some patients, so my urologist was not comfortable prescribing it to me.  The only other treatment option for me is a bladder instillation, which is where a medication is inserted into the bladder through a catheter.  This is done on a weekly basis for 6-8 weeks, and patients can expect to see results within the first 4 weeks.  If bladder instillations don’t help, the more extreme option of cystectomy or removal of the bladder can be performed.

The fact that I have been dealing with this condition and trying to get a straight diagnosis for over ten years is just insane to me.  I had a doctor back in 2012 who was supposed to check for this during an unrelated surgery, but he failed to follow through with that plan.  He realized and admitted his mistake, but I quit seeing him immediately after that.  In fact, that particular doctor is one of the main reasons that I don’t do well with doctors at all, but especially male doctors.  This has been a long, painful road for me so far, and I’m afraid I still have so much further to go.  The sad part is that even if this condition is formally diagnosed in me, there is not much that doctors can do for me.

So far the biggest aid in this excruciatingly painful condition has been diet change.  I had to quit drinking energy drinks, soda, diet soda, spicy foods and my doctors also want me to quit drinking coffee (but I refuse that part).  I have compromised by drinking only one cup of coffee per day.  I drink lots of water which is supposed to help, but honestly it does not make it any better.  In fact, I am a part of the small percentage of patients that feel more pain with a higher water intake.  So, for now I am just taking it one day at a time and hoping and praying for the best outcome with these upcoming tests and procedures.

Stay strong fellow autoimmune warriors and friends and family.  Love and light now and always!

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