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New here, and in a lot of pain.

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  • New here, and in a lot of pain.

    I am recently diagnosed with IC, though the pain has been going on for years. It's been really bad since last March though. So, now it's been a year of daily, sometimes 24 hour pain. I am so depressed. I don't know how to go on. What next? My doc prescribed morphine. It's not working. Cystoscopy didn't work. I am following the IC diet, I gave up my coffee....I am still in pain. Everyday it's the same thing. Over and over. I have 2 young daughters that need me, they are age 6 years, and the other is 8 months. I am not the wife and mother I need to be. I am always in pain. I am always crying. I had an emotional breakdown tonight, and I am just so discouraged.

    I have other health probs too, which doesn't help. I have medullary sponge kidneys (stone disease, have passed 25 stones, 3 lithotripsies), endometriosis, IBS, and bipolar type 2, and hashimotos thyroiditis. Oh yeah, and I am currently battling a systemic candida infection.

    This pain is depressing me so bad. I can't go for a walk because it hurts too much, I can't have sex. I can't eat any foods I enjoy without major pain. I can't even TREAT my pain because my meds aren't helping that much.

    I am so sick of this. It's been 7 years off and on. They told me I was nuts (blamed my "phantom" pain on my bipolar disorder). Finally in December I got diagnosed. I am scared, I don't know how to live my life like this. Can somebody please help? I feel so alone.
    June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
    October 2000 - 2nd kidney stone, pre-term labour
    November 2000 - my beautiful baby girl is born! (emergency c-section)
    January 2001 - hospitalized for severe post-partum depression. Started on meds.
    February 2001 - diagnosed with hashimotos thyroiditis.
    March 2001 - diagnosed with medullary sponge kidneys
    2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
    2002 - 19 rounds of electro-convulsive therapy.
    2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
    March 2004- ovarian cyst removal surgery, appendectomy at the same time
    April 2004- hernia repair from previous surgery
    2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
    Sept 2005- pregnant with 2nd child
    Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
    April 2006 -HORRIBLE pelvic pain starts....24/7
    June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
    May 2007 - 2nd cystoscopy with fulgeration
    June 2007 -diagnosed with SVT
    July 2007- diagnosed with asthma
    August 2007 -diagnosed with fibromyalgia and vulvodynia
    February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
    July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
    July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

  • #2
    Oh my gosh!

    I have the same thing going on! Wow! Almost to the last detail. I even have the medullary sponge kidneys! I hadn't heard anyone else mention it so I thought I was weird.

    I can't do anything either. I am on morphine as well and even increasing my meds to almost double hasn't helped.

    I had people blame me for years and think my pain was depression related. I had told one doctor that I thought I was bipolar and I just found out they put it in my chart.

    Write to me anytime okay?!

    Welcome and so glad you found us!!!


    • #3
      I am so sorry to hear of your recent IC diagnosis. I know what a blow it had to be to hear that, particularly in light of all the other health issues that you already had going on. But, I am glad you found us so soon after your d/x. I know it doesnt seem like it now, but you are off to a great start, just being d/xed, since it often takes years for that single step to occur. But, now that you know what you are dealing with, you can begin to treat it.

      I see that you have already started the IC Diet. That is an excellant step. Although one misconception is that it always works immediately. Though it often does, and many see dramatic improvements right away, for alot of patients, it takes several months for their bodies to respond to the changes. But, most do benefit from it, so please hang in there and keep at it, even though you are getting discouraged.

      That's one of the more frustrating things about this is that so many of the treatments and medications take several months to work. But, the good news is that most patients do eventually find a combo of things that work. You are off to a great start, especially since you have already found a Dr. that believes your pain is willing to treat it with pain meds. Many patients have dont have this even after suffering for years. So, that alone is great.

      I know you said the pain meds arent helping yet. Please call your Dr. and let him/her know, and see if you can get in to get the dose adjusted or the med changed. I know it is frustrating trying to find the right one in the right dose, but most patients do have to have dosages titrated for at least a few visits to get it right. This is particularly true since they generally have to start at a lower dose and work it up, so your body can get used to it a little at a time. But, hang in there, I just know they are going to get you there!

      I dont know if you have read it yet, but there is a ton of info in the Patient Handbook. Here is the link: There are lots of tips there along with other information that can help you.

      Again, I am so sorry that you have this new illness thrust upon you, but I am glad that you have found us here. If I can ever help you in anyway, please feel free to pm me anytime.