Interstitial Cystitis

[livingwith]

I was finally diagnosed with IC after years and years of being mis diagnosed. I am only 26 and it has taken over my life. Some days are good..some are bad and most of them are bad. I have my dream career and a boyfriend that loves me and would do anything for me but then there is my IC. It keeps me anxiety ridden and recently everything I put in my mouth affects my IC so in the end I have just not been eating. As I set here and I type this e mail I am crying, I wish the pain would go away and I...Read the full article

[jpb]

You may ask your doctor to add amitriptyline, and hdroxyzine along with your elmiron. Usually all three of these drugs are used at the same time to combat IC......JB

[TLnielsen]

Dear Lovely, Young IC Gal...

I love that you mention a couple of your wonderful Life Blessings... a boyfriend who loves you and would do anything... etc...

I suffered many miserable days for 4 yrs... I'm 48 yrs old.. and my post is 2 above yours... I want to encourage you to be as positive about gaining mastery over the significant pain in your life, as you can possibly muster up... each day...! I know very well about those long painfilled sits on the toilet.. when you wonder if the pain..frequency..urgency... will ever subside.... and eliminating.. and trying to squeeze it all out... doesn't make it feel much better...

I truly believe that our pain pathways become agitated... and then are so harried.. they have extreme difficulty settling down... So I hope you can make some important goals in your life...
First be determined that you will keep advocating for yourself...until you find some Docs.. Urologists, OB/GYNs, Internal Med Docs, Alternative Med Docs, a Nurse Practitioner, IC Support Group, ANY ONE and everyone who could possibly support you in settling down the disturbed pain pathways in your body...

Unfortunately, your IC will likely always be with you... but learn to think of it as a Relative.. someone related to you... that for your own peace of mind, you will learn best how to apease...

I believe that your bladder... and perhaps some other systems in your body are quite out of sync... please read as many IC websites and do as much online searching of current approaches, research, and therapies that are being considered....

Back when I was in your shoes... I read about 2 Boston area researchers.. tied to Tufts University... who believed in a Mast Cell degranulation theory... Mast Cells running amuk in our bladders... Mast Cells are aroused in our bodies when we are emitting too much Histamine, because our bodies are allergic to some food or element in our environment... So by taking an Antihistamine that is especially geared to help the Bladder.. that is Atarax or Visteril ... it can help settle an allergy issue down...

Then... follow the IC Diet recommendations as closely as possible... even purchasing Prelief .. over the counter... ask your Doc where.. or Pharmacist... non-prescription, but usually the Pharmacist will know where it is ... Prelief will help tone down acidity, when you've eaten something acidic.. I understand some people take it with most every meal... it sounds like your body is screaming very loud to gain some assistance with any and all areas that you can find to settle it down...

Consider the Elavil again... or a similar drug. research the topic to decide if you want Tricyclic Drug to help relax your Bladder and Pelvic Muscles....or more modern Anti-depressant drug like Prozac or Paxil.... .. in a low dose... as I believe it helps "Down-regulate" your pain pathways... or at minimum to interrupt the intense pain... personally, I am happier using a Tricyclic like Elavil.. as it does not interrupt my orgasm responses, the way modern SSRI Anti-depressants do ...

Find some drug that your body is compatible with that will relax your bladder and other muscles some.. and hopefully also slightly boost the available Seratonin in your body.. do as many "happy" activities as you can, and "gut laugh" as often as possible.. watch Jay Leno at night.. and recruit your family, friends and loving boyfriend to help you stay as positive and laughter filled as possible..! This sends positive Seratonin, Endorphins, and Dopamine throughout your body.. to improve any and all health issues in your body, and theirs...! Purchase a copy of the DVD, The Secret ... I bought mine thru Amazon.com, used copy was $3 .. and mailing was same... even if it all costs $20 buy, borrow from library or rent it.. it is about the importance of generating positive energy as often as possible..

Just make a list of all the possible systems in your body that need tuned to strengthen the interior of your bladder... and to help keep every thought you have as positive as possible about regaining health in your life... all your pain is never going to go away... but significant improvements can be made, and each one synchronized with the others will improve your health, outlooks, and pains... please understand I am NOT saying the pain is in your head... your Bladder is indeed screaming to you with pain... you just need to create the Multi-modal therapy system that will improve a State of Being for your Bladder where it can begin to heal... and find your med that will "down-regulate pain" in your bod... or at least interrupt the pain messages your bod is sending zinging all over, esp in your pelvic and bladder area...

Get your very own customized Multi-modal Therapy going for YOUR IC : Low acid diet, "pain down-regulation", discouraging "pain up-regulation", with the Elavil or other drug... asking your Urologist or OB/GYN how you can ease the pains that increase with either your Ovulation mid-cycle... or in my case.. I notice increased pain right before my period... so for me, the increased Estrogen causes irritation.... I take IZO and generic version of, red pills purchased from Walmart or Walgreens...the Pharacist knows where these are... I also have to take these pills if I am snow skiing or under stress... with snow skiing your body seems to want to pee all the time, because you are drinking hot tea or coffee to stay warm, and it is going right thru you because you are at a high altitude..

So anyway... while YOU are inventing your customized Multi-modal Therapy, with all the research you are doing online.. and with the support of 1-3 good Docs who believe horrible IC symptoms can be improved... consider every aspect that could be hurting your Bladder... and find a recourse for it.... keep your stresses as low as possible...

More ideas on your poor Bladder... so it is likely that your Bladder Lining is permeable ... there are alot of things that could have caused this.. please read all the online supports to explain this to you.. and figure out which causes were most likely in your case... search Interstitial Cystitis and find Wikipedia's explanation, IC-help.org's explanation :

http://en.wikipedia.org/wiki/Interstitial_cystitis

http://www.mayoclinic.com/health/interstitial-cystitis/DS00497/DSECTION=10

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

You will find many more of these, but these cites are some of the best...

My own Therapy includes Glucosamine-Chondroitin supplements, and Quercetin - Bromalain supplements to help build the GAG Layer inside your Bladder that has become weaker and permeable .. if you can keep an IC Diet and build your GAG Layer with these, or the Elmiron that you;ve mentioned didn't work for you.. I didn't like it either, but it works for some people..

Just find your unique blend that is intended to build your GAG Layer in your Bladder.. oh, I've also used Capsules of Hyaluronic Acid to help build the GAG Layer too, I think they are good, but they cause me gas.. so I take in moderation, or just try to go on the other supplements I listed above..

You'll see on my posting, that I like Chlorella and Probiotics to ward off the Irritable Bowel Syndrome that I used to have.... IBS is similar to IC, in that it can be a Permeable Intestine Layer that needs to be rebuilt... or simply keeping a strong, "good flora" in your gut and bowels.... people need to understand that when they take an Anti-biotic, ( kills both good and bad bacteria ) your body will need a Probiotic to counter balance the Good Bacteria that are lost ... these supplements are not cheap, but worth it to be diligent, .. and www.Vitacost.com helps you purchase good quality supplements for a decent price...

I take Krill Oil supplements just for overall good health...it's a good Omega 3 , improved over Cod Liver Oil supplements... I notice I need this in Colorado's cold winters when I can not get outside in the warm sunshine as much... when I go to Hawaii in the winter, I can get plenty of sunshine.. and probably don't need the Krill Oil at that time... sunshine increases your natural Vit D ... grandma was right.. many of us need Cod Liver Oil ( or Krill ) supplements at least during the long cold winters....

Please young, vibrant, beautiful gal.. be determined that YOU are going to lead a positive effort to improve your Bladder's Pain... and don't worry about what they said about UTIs.. as if you've been peeing in a cup for a Doc, and they continue to see No Bacteria.. your IC is probably not bacteria related.. Docs are still learning about this however,.... and before i began my IC Protocol, my Doc prescribed me a good Broad-Spectrum Antibiotic, just in case... and they might consider giving it to your boyfriend too.. as men could be a non-symptomatic carrier of a bug....

Find 1-3 good Docs who will read your research, and do what you ask, to rule out possible items that could otherwise be irritating your poor bladder... I have a few great articles, let me know if you want them for you and your Doc to read....

It was important for me to begin with a Broad spectrum Antibiotic, and also rule out any possible STDs , as I am a single gal, and periodically in a relationship... so wanted to rule out the Bacteria Theory... for IC ....

God Bless... my email is [moderator note: e-mail address has been removed] , if you need a few professional articles..
Feel better, and keep your chin up... you WILL FEEL BETTER ...! You WILL..! Terri